My daughter told me after her swim practice last night that "no one on the team cares about each other anymore." Words that made me so sad. I was even more saddened to hear that she had to take the new poster around to all of the swimmers and ask them to sign it. That there was no discussion about what had occurred on the one swimmers poster. Nor, have I heard through the grapevine that there was any discussion regarding the use of the offensive nickname.
It saddens my heart deeply to hear my daughter talk about how much fun her team used to be. How everyone was like family. That they had pride and team spirit. She said it's just not the same since the club fired her beloved coach last summer.
My perspective is that any extra curricular activity my daughter participates in should bring her joy and happiness. She should look forward to going and participating. She loves the water and I fear that if we stay on this course she may lose her love and passion for swimming. Something that brought her great pride and joy at one time. I understand it could be her age. Many swimmers lose interest at between the ages of 11-14. But when there is a less than positive atmosphere I think it makes it more challenging.
Change is never easy, but is always necessary to grow as individuals. Perhaps it's time for change.
Wednesday, February 29, 2012
Monday, February 27, 2012
Perhaps I'm Too Sensitive?
My daughter swims for a local USA Swim team. This upcoming weekend is the age groupers Junior Olympic Meet (also known as JO's). It's the first level of meets these kids try to qualify for at the end of the season which then leads to another qualifying meet. In an effort to congratulate these qualifying swimmers and wish them luck we organized an on deck activity.
My daughter and I put names on poster boards for the eleven qualifying swimmers. The poster board were put out on tables with markers so that all of the swimmers could write motivational messages of good luck and fast swimming on them. We also had pizza and beverages for them. Our team has taken on some changes and this has been the first on deck event in a LONG time. The kids all signed the posters and seemed to have a great time visiting with each other.
I discussed with a fellow parent what we should do with the posters. Send them home with the kids or take them and hang them in the team tent? We decided we would take them and hang them in the tent to help inspire the swimmers. As I collected each of the posters I came across one that had writing scribbled out on it. This one swimmer not only had "I <3 Molly" written multiple times in all the spare space scribbled out it also had the swimmer's first name blended into a single word ending in "retard". I realize at that moment that this particular swimmer had asked me for a marker. It was in this specific color that he scribbled out the writing. I couldn't believe it. I showed it to other parents and stated this isn't acceptable. I showed it to the coach and he said he'd talk with the head coach and the swimmers about it. My daughter and I decided we would remake his poster and send it to the next practice.
We were carpooling another swimmer home with us. On the drive I had the girls ask this particular swimmer how he felt about the nickname and his poster. He was clearly hurt by it and stated he "HATES" the nickname, but tolerates it. In the text conversation it was clear the swimmer was very disappointed that his poster was ruined. The other thing was that not only does he just "take it" from the group, but he "can't" do anything about it. He also said he "won't" ask them to stop because it's just kind a thing they do.
What sets my pants on fire is the fact that not only did the group of swimmers that pretty much vandalized this swimmers "motivational" poster, but they also thought it was acceptable for the parents and coaches to see. Last I checked, when you single out one swimmer out of a group to intimidate or emotionally harass it's called bullying. Bullying is defined in our USA Swimming rule book for 2012. From what I read it fits the description.
I contacted another parent, a friend, and described to her what happened. I think I made her very angry at me over the situation because her child is part of the group that was reported to have been responsible for giving the nickname to the swimmer. This parent then preceded to tell me not only has my child called this swimmer the nickname, but so has the coach. That her child didn't know the swimmer didn't like the nickname. Somewhere in the muck of our conversation I got the impression from her that because everyone else calls this child "xxxxxxretard" that it's acceptable. Seriously??? So am I to understand that if just one person uses a slanderous term to identify an individual it's wrong, but when collectively as a group it's done it's okay???
I am not accusing any one individual. It is my position that all involved, those that have used the nickname and those that accepted the use of it, are guilty. That the "anything" goes attitude that seems to be running rampant through the senior and pre-senior group which models behavior for groups of younger kids who aspire to swim fast and be like them should be put to an end. It is my hope that the coaching staff will set all of these kids straight on respect and sportsmanship. That strong leadership will be in place to correct bad behavior and educate them when the need arises.
I'm sitting here this evening thinking am I making a bigger deal of this? Am I wrong to be so offended? Are my standards too high? Should I blow it off like everyone else? Then I think of this swimmer taking this poster home to his family and showing them, or tearing it up and throwing it in the trash because he doesn't want them to know about it. Would his parents think that it's acceptable for his motivational poster to look like that? How would they feel?
I am not accusing any one individual. It is my position that all involved, those that have used the nickname and those that accepted the use of it, are guilty. That the "anything" goes attitude that seems to be running rampant through the senior and pre-senior group which models behavior for groups of younger kids who aspire to swim fast and be like them should be put to an end. It is my hope that the coaching staff will set all of these kids straight on respect and sportsmanship. That strong leadership will be in place to correct bad behavior and educate them when the need arises.
I'm sitting here this evening thinking am I making a bigger deal of this? Am I wrong to be so offended? Are my standards too high? Should I blow it off like everyone else? Then I think of this swimmer taking this poster home to his family and showing them, or tearing it up and throwing it in the trash because he doesn't want them to know about it. Would his parents think that it's acceptable for his motivational poster to look like that? How would they feel?
I wonder what the week will bring and if change is in our future...
The DCN... Blast From the Not So Popular Past
While I was carpooling C to swim Thursday afternoon, one of the assessors from the DCN (The Diagnostic Center Northern CA). called. R, the hubby, took the call. The assessor was cleaning out old files or something and came across F's file. He wanted to check and see how he was doing.
I haven't thought about the DCN since 2010. Here's what I know about them. They were described to me as the "experts" on the hardest to serve special education students, the most complex of children. The was supposed to the best place to do F's assessments in all areas of need. We were referred by our District because I had requested so many assessments. Appropriate assessments were seriously lacking in his IEP documents. I'd have to pull the big box of records to review the list, but I can tell you it was in any and all areas of potential need. Thanks to our advocate, we tried to be as thorough as possible.
Here's what F experienced. To be assessed by this "highly skilled team of experts" F had to travel. The trip was over a 100 miles and 2 hours for him. F hasn't traveled in years. F hadn't been on a school campus in over a year when they referred him here. F has asthma complicated by the typical lung issues that come with having such severe cerebral palsy. It was the first few days of June he was scheduled for two days of testing. We would arrive the day before. He would test over the next two days. I'm sure I tried to negotiate with them coming to us locally, but they I was told no. This is how it's done for these kids. Strike 1 against F for good assessments.
F's van was packed from top to bottom with all of the supplies he needed to care for him for that short period of time. Thankfully, our nurse, Beth was able to come with us. I couldn't have made the trip alone. It's a challenge to care for him out of our element. We loaded up the day before arrived at the designated hotel, which wasn't close to the DCN. I literally had to rearrange furniture to accommodate F. We were all exhausted. F did not sleep most of the night. I'm sure he probably awoke a little disoriented since he hadn't traveled in so many years. I wake up that way sometimes when I'm really tired and someplace new. So it's reasonable to believe he would be too.
Exhausted the next morning we are expected to show up bright and fresh for the assessments. I called them to tell them we were running late. I really didn't want to go. F was wheezy and congested. I'm sure it had to do with trees being in bloom and all the car exhaust from the drive and traffic. I am completely anxious and stressed and can already tell F isn't feeling his best, strike 2.
We finally arrive the team greets us. They introduce themselves. Then take us to these little rooms that barely accommodate F's wheelchair. Then they send us to the assessment room and it's even smaller. We barely fit. They have me read the paper to him. He is wheezy and congested and sounds horrible. He's refusing to open his eyes and interact. I can't blame him. We do our best. Then they have me leave and Beth come in. They try to work with the two of them. I don't think much changed for how F was behaving. Why should it? He's legally blind and in an unfamiliar environment with tight spaces and bright lights, not optimal for him. He's having difficulty breathing. It's already documented in all of his school records that he fatigues easily. So lets see didn't sleep, difficulty breathing, recovering from long drive... conducive to accurate and appropriate assessments? In my mind I hear these words "We are the experts on the hardest to serve children" Really? It doesn't take a rocket scientist to figure out that so far you've set him up to fail!
The other unimpressive thing about this agency that "specializes in assessing the hardest to serve children" is that there was no accommodations on site for someone with such significant physical disabilities. There was no room available to get F out of his chair for changing or to stretch out. They came up with a solution by sending us to some apartment on campus, but we had to walk by all of the landscapers cutting hedges, using mowers, and blowers. One word, asthma.
They insulted him. Strike 3. If you want my son's attention. Don't baby him and certainly don't try to make him do preschool stuff. He won't do it. They tried to have him match colors using dishes, a plate and spoon or something. This was when Beth, his nurse was with him, because I interfered with the process. Did they not pay attention to the fact that he's had a g-tube and feeding pump FOR HIS ENTIRE LIFE? Really dishes! How about something more appropriate and relevant to his life? I seriously doubt that someone who is NEVER going to sit in front of a plate of food or hold a spoon really cares about what color the plate and spoon are or that they are a plate and spoon. But I bet if they'd played a cd or a cassette, he could correctly identify which one was which. Perhaps an audio story, a mystery, sports story, biography, etc. I'm sure he could tell what type of stories they were. But they chose dishes and his name.
I could go on and on about this experience, but I won't. My point is that the "experts" may not know crap about a child like yours because they are so unique with their group of disabilities, method of communication, and coping skills. The only experts for these children tend to be those that are close to the child. The ones who see their potential, believe in them, inspire them, and love them.
If your child has been assessed at the DCN or any Diagnostic Center, I'm curious how it worked out for your child.
I haven't thought about the DCN since 2010. Here's what I know about them. They were described to me as the "experts" on the hardest to serve special education students, the most complex of children. The was supposed to the best place to do F's assessments in all areas of need. We were referred by our District because I had requested so many assessments. Appropriate assessments were seriously lacking in his IEP documents. I'd have to pull the big box of records to review the list, but I can tell you it was in any and all areas of potential need. Thanks to our advocate, we tried to be as thorough as possible.
Here's what F experienced. To be assessed by this "highly skilled team of experts" F had to travel. The trip was over a 100 miles and 2 hours for him. F hasn't traveled in years. F hadn't been on a school campus in over a year when they referred him here. F has asthma complicated by the typical lung issues that come with having such severe cerebral palsy. It was the first few days of June he was scheduled for two days of testing. We would arrive the day before. He would test over the next two days. I'm sure I tried to negotiate with them coming to us locally, but they I was told no. This is how it's done for these kids. Strike 1 against F for good assessments.
F's van was packed from top to bottom with all of the supplies he needed to care for him for that short period of time. Thankfully, our nurse, Beth was able to come with us. I couldn't have made the trip alone. It's a challenge to care for him out of our element. We loaded up the day before arrived at the designated hotel, which wasn't close to the DCN. I literally had to rearrange furniture to accommodate F. We were all exhausted. F did not sleep most of the night. I'm sure he probably awoke a little disoriented since he hadn't traveled in so many years. I wake up that way sometimes when I'm really tired and someplace new. So it's reasonable to believe he would be too.
Exhausted the next morning we are expected to show up bright and fresh for the assessments. I called them to tell them we were running late. I really didn't want to go. F was wheezy and congested. I'm sure it had to do with trees being in bloom and all the car exhaust from the drive and traffic. I am completely anxious and stressed and can already tell F isn't feeling his best, strike 2.
We finally arrive the team greets us. They introduce themselves. Then take us to these little rooms that barely accommodate F's wheelchair. Then they send us to the assessment room and it's even smaller. We barely fit. They have me read the paper to him. He is wheezy and congested and sounds horrible. He's refusing to open his eyes and interact. I can't blame him. We do our best. Then they have me leave and Beth come in. They try to work with the two of them. I don't think much changed for how F was behaving. Why should it? He's legally blind and in an unfamiliar environment with tight spaces and bright lights, not optimal for him. He's having difficulty breathing. It's already documented in all of his school records that he fatigues easily. So lets see didn't sleep, difficulty breathing, recovering from long drive... conducive to accurate and appropriate assessments? In my mind I hear these words "We are the experts on the hardest to serve children" Really? It doesn't take a rocket scientist to figure out that so far you've set him up to fail!
The other unimpressive thing about this agency that "specializes in assessing the hardest to serve children" is that there was no accommodations on site for someone with such significant physical disabilities. There was no room available to get F out of his chair for changing or to stretch out. They came up with a solution by sending us to some apartment on campus, but we had to walk by all of the landscapers cutting hedges, using mowers, and blowers. One word, asthma.
They insulted him. Strike 3. If you want my son's attention. Don't baby him and certainly don't try to make him do preschool stuff. He won't do it. They tried to have him match colors using dishes, a plate and spoon or something. This was when Beth, his nurse was with him, because I interfered with the process. Did they not pay attention to the fact that he's had a g-tube and feeding pump FOR HIS ENTIRE LIFE? Really dishes! How about something more appropriate and relevant to his life? I seriously doubt that someone who is NEVER going to sit in front of a plate of food or hold a spoon really cares about what color the plate and spoon are or that they are a plate and spoon. But I bet if they'd played a cd or a cassette, he could correctly identify which one was which. Perhaps an audio story, a mystery, sports story, biography, etc. I'm sure he could tell what type of stories they were. But they chose dishes and his name.
I could go on and on about this experience, but I won't. My point is that the "experts" may not know crap about a child like yours because they are so unique with their group of disabilities, method of communication, and coping skills. The only experts for these children tend to be those that are close to the child. The ones who see their potential, believe in them, inspire them, and love them.
If your child has been assessed at the DCN or any Diagnostic Center, I'm curious how it worked out for your child.
Saturday, February 25, 2012
Inspiration
So I like to run. It helps me work off my stress and clear my mind and I can exercise my two dogs. They will behave the remainder of the day which I love! I have the opportunity to think through a lot of things. It's my break from my life. This was my last long run before my half-marathon on March 11. I run at the local bike trail along the river. It's beautiful.
The run was uneventful and I felt pretty good until the last mile and a half. That last bit of distance was so incredibly HARD! I don't really understand why some long runs go by so quickly and others are serious mental TORTURE! This one went by easy and then I started getting stiff legs and the wind was picking up. I wanted to stop running. This is where I think of my son.
I remind myself that I take steps for F. I think of each painful step and liken it to every painful CP spasm he's had. I think about how he will never have the ability to do this with his own two legs. Yet, he doesn't complain. I think of how asthma prevents him from enjoying the outdoors. His world is so small and yet... he enjoys every minute of it. He doesn't grumble, or really complain. He requires so little in many ways. He is content and satisfied the majority of the time. I say majority, because he too has his moments. He sets an amazing example for doing your best and finding the joy in all that you do. I am grateful for all that I can do and enjoy.
For F:
Thank you for inspiring me. You help me each day to remember that I can. You work hard to continually improve yourself even if your progress is very small. You refuse to believe anything negative said about you. You choose to prove those naysayers wrong. You never give up. I love you!!
The run was uneventful and I felt pretty good until the last mile and a half. That last bit of distance was so incredibly HARD! I don't really understand why some long runs go by so quickly and others are serious mental TORTURE! This one went by easy and then I started getting stiff legs and the wind was picking up. I wanted to stop running. This is where I think of my son.
I remind myself that I take steps for F. I think of each painful step and liken it to every painful CP spasm he's had. I think about how he will never have the ability to do this with his own two legs. Yet, he doesn't complain. I think of how asthma prevents him from enjoying the outdoors. His world is so small and yet... he enjoys every minute of it. He doesn't grumble, or really complain. He requires so little in many ways. He is content and satisfied the majority of the time. I say majority, because he too has his moments. He sets an amazing example for doing your best and finding the joy in all that you do. I am grateful for all that I can do and enjoy.
For F:
Thank you for inspiring me. You help me each day to remember that I can. You work hard to continually improve yourself even if your progress is very small. You refuse to believe anything negative said about you. You choose to prove those naysayers wrong. You never give up. I love you!!
Friday, February 24, 2012
F Investigates the Maestro
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| His view. I notice from this photo the glare. Glare really hurts his eyes. Adjustment immediately made. |
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| F up in his chair ready tostart learning the new format of the Maestro. |
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| This isn't his main screen. It's a page he went to. It's just to give you an idea of how it's set up for him. |
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| Part of his technology set up. I had hoped he'd be able to turn one of these off with his device yesterday. I will need to confirm remote settings. |
Thursday, February 23, 2012
Caroline Saves the Day Again
F had a follow-up appointment with his primary care doctor. I'm really starting to like his doctor. I still miss his pediatrician Dr. Faro. She was amazing, but Dr. Lee is really starting to grow on me more and more. First, I love how he addresses F. He speaks to him directly even though he may not always get a response form F. I think F can be intimidated sometimes bydoctors. Doctor's tend to make judgments about his level of intellect. So F may go into his "safe" mode and that is sit quietly, don't make eye contact. Another thing about F, he is thoughtful and introspective. He tends to absorb and process information slowly before making any decision (I wish I had this quality). We constantly have to verify that he "wants to think about it" and ask again later.
I'm getting off track about how Caroline saved the day. At the ER when they were running labs for Forrest I heard Caroline's voice in my head "repeat the chemistry panel, waiting a month might be too long" so I made the request. Thank goodness she planted that seed. His potassium was slightly below normal 3.2 (3.5 to 5.0 normal range). I had made a follow-up appointment with his doctor after the urgent care visit Saturday night. Then we end up in the ER on Tuesday night. In speaking with Caroline about, "Should I cancel primary if we get into ENT?" She said "you need that appointment with primary care to discuss his potassium." Her theory has been that due to his bowel care routine (he has a cecostomy tube) he's being depleted of valuable electrolytes. Thank goodness she reminded me. I was over focussed on the abscess.
Here's background info on the potassium:
F spent a week on potassium supplements after being a 3.0 after a chem panel when he was sick with fever/cough the few days after the Super Bowl. Again, due to Caroline planting the seed that when he's sick and on that Modified Atkins neurology needs to be contacted because he's blowing ketones. I can't really wrap my head around the "blowing off ketones" concept, but I've learned not to doubt her. I contacted neurology and they ordered labs to check his ketones and his chemistry. I had also made the appointment with another doctor at the office for an evaluation. I like them to get a baseline in case he takes a turn for sicker. He's susceptible to pneumonia because he's immobile, has asthma, and his lungs aren't that great. They did a chest x-ray (it had been over two years since his last!!!!) which was clear.
Later in the morning Janet, from neurology, calls about his potassium. "His potassium is low, please let his primary doctor know so that he can supplement if he needs it." Thank you, Caroline! I wouldn't have called neurology it simply wasn't on my radar. Labs wouldn't have been done low potassium not discovered.
Back to today's visit at the doctor today. He looks at the abscess and it doesn't think it needs further lancing. We are directed to continue with hot compresses and maybe the remainder will drain, but relieving the pressure and some of the pus has clearly allowed the antibiotic to do it's job. So far the cultures are coming back for staph. No shock there. He does want us to get into ENT so that they can excise the cyst, but he states he suspects F is susceptible to them and it could happen again. Bummer :(
Then onto the potassium discussion.
Dr. asks, "Does he have diarrhea often?"
I respond, "No, just his bowel care routine which includes this solution 1100 cc water, 1.5 teaspoons of salt, 10 cc milk of mag, and 40 cc of castile soap."
Caroline says, "You are inducing diarrhea."
Snap to reality! Connection made. I finally get it. I've been wondering why bowel care affects his electrolytes so much. Thinking it all has to do with the salt. When in all reality it's the fact that we induce diarrhea for several hours. Then we do it again in a couple of days. This is part of his care. It's worthy to note that Caroline has been working the electrolyte issue with me since she's been here. I just wasn't getting it until today.
F has had that cecostomy tube since he was around 8 years old. We used to do bowel care every day for years. He'd be so sick afterwards. Upon reflection I realize that he wasn't just sick he was dehydrated and his electrolytes were off. We'd give gatorade and other electrolyte drinks to help with the extreme nausea afterwards wanting to prevent dehydration, not even realizing we induced it. We never made the connection to the nausea and electrolyte imbalance to what the solution did to his body. It also aggravates his seizures. Which of course makes sense.
Caroline finally worded things in a way that connected all the dots. She really just needed to dumb it down for me at that moment. She was also the first person to notice a connection with his seizures the following day after bowel care. I am so grateful. I look at how his seizures have improved so much with the diet. Perhaps adding potassium to his routine will help even more. I am so thankful for her knowledge in so many areas. I've learned so much from her.
I'm getting off track about how Caroline saved the day. At the ER when they were running labs for Forrest I heard Caroline's voice in my head "repeat the chemistry panel, waiting a month might be too long" so I made the request. Thank goodness she planted that seed. His potassium was slightly below normal 3.2 (3.5 to 5.0 normal range). I had made a follow-up appointment with his doctor after the urgent care visit Saturday night. Then we end up in the ER on Tuesday night. In speaking with Caroline about, "Should I cancel primary if we get into ENT?" She said "you need that appointment with primary care to discuss his potassium." Her theory has been that due to his bowel care routine (he has a cecostomy tube) he's being depleted of valuable electrolytes. Thank goodness she reminded me. I was over focussed on the abscess.
Here's background info on the potassium:
F spent a week on potassium supplements after being a 3.0 after a chem panel when he was sick with fever/cough the few days after the Super Bowl. Again, due to Caroline planting the seed that when he's sick and on that Modified Atkins neurology needs to be contacted because he's blowing ketones. I can't really wrap my head around the "blowing off ketones" concept, but I've learned not to doubt her. I contacted neurology and they ordered labs to check his ketones and his chemistry. I had also made the appointment with another doctor at the office for an evaluation. I like them to get a baseline in case he takes a turn for sicker. He's susceptible to pneumonia because he's immobile, has asthma, and his lungs aren't that great. They did a chest x-ray (it had been over two years since his last!!!!) which was clear.
Later in the morning Janet, from neurology, calls about his potassium. "His potassium is low, please let his primary doctor know so that he can supplement if he needs it." Thank you, Caroline! I wouldn't have called neurology it simply wasn't on my radar. Labs wouldn't have been done low potassium not discovered.
Back to today's visit at the doctor today. He looks at the abscess and it doesn't think it needs further lancing. We are directed to continue with hot compresses and maybe the remainder will drain, but relieving the pressure and some of the pus has clearly allowed the antibiotic to do it's job. So far the cultures are coming back for staph. No shock there. He does want us to get into ENT so that they can excise the cyst, but he states he suspects F is susceptible to them and it could happen again. Bummer :(
Then onto the potassium discussion.
Dr. asks, "Does he have diarrhea often?"
I respond, "No, just his bowel care routine which includes this solution 1100 cc water, 1.5 teaspoons of salt, 10 cc milk of mag, and 40 cc of castile soap."
Caroline says, "You are inducing diarrhea."
Snap to reality! Connection made. I finally get it. I've been wondering why bowel care affects his electrolytes so much. Thinking it all has to do with the salt. When in all reality it's the fact that we induce diarrhea for several hours. Then we do it again in a couple of days. This is part of his care. It's worthy to note that Caroline has been working the electrolyte issue with me since she's been here. I just wasn't getting it until today.
F has had that cecostomy tube since he was around 8 years old. We used to do bowel care every day for years. He'd be so sick afterwards. Upon reflection I realize that he wasn't just sick he was dehydrated and his electrolytes were off. We'd give gatorade and other electrolyte drinks to help with the extreme nausea afterwards wanting to prevent dehydration, not even realizing we induced it. We never made the connection to the nausea and electrolyte imbalance to what the solution did to his body. It also aggravates his seizures. Which of course makes sense.
Caroline finally worded things in a way that connected all the dots. She really just needed to dumb it down for me at that moment. She was also the first person to notice a connection with his seizures the following day after bowel care. I am so grateful. I look at how his seizures have improved so much with the diet. Perhaps adding potassium to his routine will help even more. I am so thankful for her knowledge in so many areas. I've learned so much from her.
And the Decision is... Private School
Finally, we have weighed all options for C. She really wanted to go this private middle school. I have continued to look at alternative curriculum and other on-site charters. Although homeschooling her has been overwhelming this year, I'm deeply saddened by the thought of sending her away from 8 to 3 each day and add swim practice on top of that. My heart is heavy just thinking about her long days.
On Tuesday, C had her one on one interview at the private middle school. She was told that she is accepted. She called F and I as we were loading into the car for our trip to the Capitol. The joy in her voice was unmistakable. She was given many compliments and told that the school "chooses her for her many great qualities." She is SO excited and ready to return to a school campus.
We are thankful she has picked a school that is small and Christian based. They only have 250 middle school students on campus. That is a dramatic difference from a 1,000 or more in the public schools near us. I believe for C, Having faith and sharing it with others brings her a sense of peace. A sense that there is a reason for all that has happened in her family. The school also goes through high school. So if we can make it work she can graduate from there.
This decision is overwhelming and giving me a bit of anxiety. School doesn't begin until August. We do not live close to the school. It will be a commute. I may or may not have a nurse to assist with F. R (the hubby) works nights and doesn't arrive home in time to help in the morning. Without a nurse F would have to go with me each day. The thought of getting him up and out the door to get his sister to school is enough to exhaust me just thinking about it.
Our nurse put the bug in my ear that she may be relocating out of the area. I'm so sad for F, and us. She is a part of our family and we all love and adore her. He gets attached to his nurses, especially the ones who enrich his life so much. I'm sad because he will be at the mercy of our schedule, not his own if we don't have one in place by then. I'm torn about how to handle the situation. I also know that the sooner we start looking for nurses the better our chances are in finding one that will click with us or be trained by then. In home health nursing you sometimes get a lot of nurses you don't want, before you can get one you do want.
This is where I get discouraged in life. Discouraged because these are the moments that I realize I only have myself to count on. Sure I have a husband, but he has to work. Plus, he's accustomed to leaving most everything to me to figure out. He'll give his input on things and offer to help, but when it comes down to it he doesn't follow-through. He'll stick his head in the sand and CHOOSE to ignore a lot of things. He's influenced so many decisions and left me to carry the weight of almost all of them. I'll tell you they get heavy after awhile. Supportive family members... they don't exist. Friends... no one really comfortable or capable of caring for F. His care intimidates people...doctors and nurses included sometimes.
So for now, I will cheer C on. Cherish the remainder of this school year with her. Prepare to send her off in August. While trying to come up with a plan. I need a good solid plan how I'm going to manage this. One that that's good for her and for F. F is 18 and if he says he doesn't want to get up and drive her to school at 7:30 in the am. I really need to listen and figure out how to support him too. Think, think, think...
On Tuesday, C had her one on one interview at the private middle school. She was told that she is accepted. She called F and I as we were loading into the car for our trip to the Capitol. The joy in her voice was unmistakable. She was given many compliments and told that the school "chooses her for her many great qualities." She is SO excited and ready to return to a school campus.
We are thankful she has picked a school that is small and Christian based. They only have 250 middle school students on campus. That is a dramatic difference from a 1,000 or more in the public schools near us. I believe for C, Having faith and sharing it with others brings her a sense of peace. A sense that there is a reason for all that has happened in her family. The school also goes through high school. So if we can make it work she can graduate from there.
This decision is overwhelming and giving me a bit of anxiety. School doesn't begin until August. We do not live close to the school. It will be a commute. I may or may not have a nurse to assist with F. R (the hubby) works nights and doesn't arrive home in time to help in the morning. Without a nurse F would have to go with me each day. The thought of getting him up and out the door to get his sister to school is enough to exhaust me just thinking about it.
This is where I get discouraged in life. Discouraged because these are the moments that I realize I only have myself to count on. Sure I have a husband, but he has to work. Plus, he's accustomed to leaving most everything to me to figure out. He'll give his input on things and offer to help, but when it comes down to it he doesn't follow-through. He'll stick his head in the sand and CHOOSE to ignore a lot of things. He's influenced so many decisions and left me to carry the weight of almost all of them. I'll tell you they get heavy after awhile. Supportive family members... they don't exist. Friends... no one really comfortable or capable of caring for F. His care intimidates people...doctors and nurses included sometimes.
So for now, I will cheer C on. Cherish the remainder of this school year with her. Prepare to send her off in August. While trying to come up with a plan. I need a good solid plan how I'm going to manage this. One that that's good for her and for F. F is 18 and if he says he doesn't want to get up and drive her to school at 7:30 in the am. I really need to listen and figure out how to support him too. Think, think, think...
Wednesday, February 22, 2012
Today I Feel Validated
F is feeling much better today, but if you ask him he didn't feel bad yesterday the abscessed cyst was simply painful. He new his infection was merely localized. He is so funny. He NOW agrees that it was a good decision to go. I'm sure to admit that to his mother is probably killing him, but he did!!! Yay, me!
He got some much needed pain relief from the 10cc of pus drained off the site. A single dose of IV antibiotics. A new prescription for a different antibiotic and his potassium checked again. His face seems to be improving little by little. I think he may need to get into ENT again for some additional drainage, but we'll see what his primary care doc says. We were lucky to get an additional blood chemistry done on him to discover that his potassium is still low after a week away from a potassium supplement. This is another issue to address later since it has to do with his bowel routine. F has a cecostomy tube...another post at a later time.
I thought I'd share an updated photo on his wound since the ER visit. I'm glad he's not rolling his eyes at me anymore, because he thinks I'm over-dramatic! How I love that boy for making fun of me!
He got some much needed pain relief from the 10cc of pus drained off the site. A single dose of IV antibiotics. A new prescription for a different antibiotic and his potassium checked again. His face seems to be improving little by little. I think he may need to get into ENT again for some additional drainage, but we'll see what his primary care doc says. We were lucky to get an additional blood chemistry done on him to discover that his potassium is still low after a week away from a potassium supplement. This is another issue to address later since it has to do with his bowel routine. F has a cecostomy tube...another post at a later time.
I thought I'd share an updated photo on his wound since the ER visit. I'm glad he's not rolling his eyes at me anymore, because he thinks I'm over-dramatic! How I love that boy for making fun of me!
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| 6:30 am |
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| Early afternoon today |
Learning the Process... the Early Years
I was just having a conversation this morning with R, The Hubby, about our early years with F. Being young and naive and not having a darn clue about what might lay ahead.
When F was young, between the ages of one and three he was growing quite quickly. We didn't think about how we'd bathe him when he outgrew the infant tub or where he would sit when he was overflowing out of his bouncy seat. It didn't come to mind until he no longer fit.
F received PT and OT during those years through CCS MTU. He saw therapists at least monthly, and yet, these questions were never asked of us how we did accommodate daily living activities. It was when we had problems with fit that we then asked questions. It was pretty frustrating to need a piece of equipment and then have to wait to work the process of authorization and approval.
I tried to learn very quickly to start making a list of questions for therapists and clinics. Questions like "how will I move him into the bathtub when he's too big?" or "how do I know when his wheelchair needs adjusting, what might that look like?" I tried very hard to make sure I planned. I started to ask a lot of questions to plan for the future. In the early years I had to rely solely on the vendor we used and/or catalogs available. The internet was just beginning to take on shape and there was little information. Now if you have an idea of what you need you can find several products that meet your needs to get ideas.
Then here was the process off authorization and approval. I tried to get to know the process of CCS (California Children's Services) Many individuals don't realize that CCS authorizes Medi-cal to pay for eligible items instead of a TAR (treatment authorization request). Then if you have private insurance and CCS, you would need the denial or copayment from the private insurance for CCS to pick up the cost or balance. It's helpful to know the order of things private insurance first, CCS, Medi-cal, Regional Center. The Regional is the last opportunity of funding if you have denials from all other coverages. This can help you so don't get the run around for your referrals and/or authorizations. It can be a lot of work, but it will make your life easier and less frustrating. It amazes me how many people who don't take the time to know the process, because they don't have the time, don't want to make the time, or just don't want to be bothered. They will purchase privately and in my opinion these are funds you have funded personally by health insurance premiums or tax dollars. It's already your hard earned dollars, make them work for you.
CCS and the Regional Centers are available in California.
When F was young, between the ages of one and three he was growing quite quickly. We didn't think about how we'd bathe him when he outgrew the infant tub or where he would sit when he was overflowing out of his bouncy seat. It didn't come to mind until he no longer fit.
F received PT and OT during those years through CCS MTU. He saw therapists at least monthly, and yet, these questions were never asked of us how we did accommodate daily living activities. It was when we had problems with fit that we then asked questions. It was pretty frustrating to need a piece of equipment and then have to wait to work the process of authorization and approval.
I tried to learn very quickly to start making a list of questions for therapists and clinics. Questions like "how will I move him into the bathtub when he's too big?" or "how do I know when his wheelchair needs adjusting, what might that look like?" I tried very hard to make sure I planned. I started to ask a lot of questions to plan for the future. In the early years I had to rely solely on the vendor we used and/or catalogs available. The internet was just beginning to take on shape and there was little information. Now if you have an idea of what you need you can find several products that meet your needs to get ideas.
Then here was the process off authorization and approval. I tried to get to know the process of CCS (California Children's Services) Many individuals don't realize that CCS authorizes Medi-cal to pay for eligible items instead of a TAR (treatment authorization request). Then if you have private insurance and CCS, you would need the denial or copayment from the private insurance for CCS to pick up the cost or balance. It's helpful to know the order of things private insurance first, CCS, Medi-cal, Regional Center. The Regional is the last opportunity of funding if you have denials from all other coverages. This can help you so don't get the run around for your referrals and/or authorizations. It can be a lot of work, but it will make your life easier and less frustrating. It amazes me how many people who don't take the time to know the process, because they don't have the time, don't want to make the time, or just don't want to be bothered. They will purchase privately and in my opinion these are funds you have funded personally by health insurance premiums or tax dollars. It's already your hard earned dollars, make them work for you.
It's wise to learn about your insurance policy. Know your DME or durable medical equipment coverage. Does it have a yearly maximum. Are these types of items covered: specialty formulas, incontinence supplies, orthotics and splinting, etc.? It's also very helpful to know the process required by your insurance company for referrals, networks providers, etc. If you know the policy and what you have access to, it can be helpful when you meet with doctors. If you know that you have a referral coordinator get to know them. Sometimes authorization is as simple as the language on your prescriptions. The language can make all the difference.
Some families with CCS don't know this because they are new to the system, but they can have a chart review done by the doctor as requested by the therapist. I'm not sure if I am wording this correctly, but as I recall, it wasn't necessary to get orders for equipment by going to a CCS clinic. I could call or meet with the therapist. She would make the recommendation to the doctor. The doctor would review the chart and recommendation and write the orders.
Just learning to navigate a health care system can be time consuming, but if you take the time to figure it out you can save yourself valuable minutes in the long run or you can get items or services because you've taken the time to get to know the process. I am continually saddened when I hear about children being underserved or without equipment because their families don't understand the process. Sometimes it's due to a language barrier other times it's just they didn't realize that they could get the information if they had only asked the questions.
CCS and the Regional Centers are available in California.
Time for Sleep!
It's 1:40 and I'm waiting for F to settle so I can turn his mattress on (it turns him from side to side to help keep the secretions from settling). He has to be in a deep sleep before I turn it on or the mattress annoys and irritates him. Plus he's on his left side and I know he'll need to be turned. He can't sleep on one side too long or he gets uncomfortable and he can't move himself. I want some sleep. I'm so tired I don't know that I would wake up if he needed to be turned. My morning starts early 5:45.
Today, I am ever so thankful for my children. So proud to be their mom. C went and had a one on one interview at the private school she desperately wants to attend. She aced the exams should be in advanced math class and was accepted. She should be able to take math that is a grade above. They welcomed her and all of her kindhearted uniqueness. I cherished the phone call I got from her telling F and I all about it. Way to go C!
It is now officially C's 12th birthday! Happy birthday to my sweet girl who brings joy and sunshine to our lives. I love her kind heart and willingness to always help others. She is a treasure!
F is my hero! He felt strongly about something and he made a choice to put himself out their and represent individuals like him. To speak up for his nurses who have helped him, especially his Caroline! I can't thank him enough for putting up with me when I'm stressed and freaking out over him. He rolls his eyes and gives in. All the while in his way telling me not to worry it's not that serious. He was right! He knew he wouldn't need an overnight stay at the hospital. I love that he is in tune with himself and his body. I can never discount his input when it comes to his needs. I also love how brave he is when he's having procedures. I couldn't have asked God to put anyone better in my life to teach me.
Today was certainly not about me. I didn't eat one structured meal today except breakfast. I'm starving right now, but I'm too tired to care. I didn't get to run my 3 miles today. I'll get my mileage for the week in. I suppose I can't really worry about it. I can do the 13.1 I have the base. I may not reach my goal time or PR. I have to be satisfied with task completion. In the grand scheme of today, it was probably a blessing I didn't run. I would have been twice as tired taking care of F today which would have made driving home tonight that much harder.
Today, I am ever so thankful for my children. So proud to be their mom. C went and had a one on one interview at the private school she desperately wants to attend. She aced the exams should be in advanced math class and was accepted. She should be able to take math that is a grade above. They welcomed her and all of her kindhearted uniqueness. I cherished the phone call I got from her telling F and I all about it. Way to go C!
It is now officially C's 12th birthday! Happy birthday to my sweet girl who brings joy and sunshine to our lives. I love her kind heart and willingness to always help others. She is a treasure!
F is my hero! He felt strongly about something and he made a choice to put himself out their and represent individuals like him. To speak up for his nurses who have helped him, especially his Caroline! I can't thank him enough for putting up with me when I'm stressed and freaking out over him. He rolls his eyes and gives in. All the while in his way telling me not to worry it's not that serious. He was right! He knew he wouldn't need an overnight stay at the hospital. I love that he is in tune with himself and his body. I can never discount his input when it comes to his needs. I also love how brave he is when he's having procedures. I couldn't have asked God to put anyone better in my life to teach me.
Today was certainly not about me. I didn't eat one structured meal today except breakfast. I'm starving right now, but I'm too tired to care. I didn't get to run my 3 miles today. I'll get my mileage for the week in. I suppose I can't really worry about it. I can do the 13.1 I have the base. I may not reach my goal time or PR. I have to be satisfied with task completion. In the grand scheme of today, it was probably a blessing I didn't run. I would have been twice as tired taking care of F today which would have made driving home tonight that much harder.
F made it to the Capitol
I'm so proud of F! He was determined to go to the Capitol today to be the face of someone who benefits from home care nursing. He took his new Maestro with him. We left the house at noon and did not return until almost 3:30. Which wouldn't have been possible without the amazing Farrell valve bag to help with his gas problems! (thank you, Caroline!)
We arrived downtown and drove, and drove, in circles looking for an accessible place to park. F has a Dodge Grand Caravan with a Braun Entervan lift. It requires a lot of space to accommodate F and the ramp (probably 8 feet at least). His wheelchair has such a long base. I kid you not, there is hardly any accessible parking downtown.The handicap spaces that were curbside had to be chosen by a moron when they chose the spaces to be designated for handicap parking and then painted. They were placed in front of trees. Seriously, trees! So even if I could park in the space, I'm not quite sure I wouldn't hit the tree with the lift. If I had room I'd then have to navigate F through dirt to the edge of the sidewalk. The other parking spaces near the handicap ones actually had sidewalk near them (Really? What were they thinking?). I finally found a space along another street that was on the end of the row. It wasn't handicap, but it was close to a parking lot and lined off so I could get F out. Then I noticed it was metered. I forgot my meter money! I had one quarter that gives me 12 minutes. I was hoping handicap plates wouldn't require meter money. I wasn't about to look for ANOTHER space!
We unloaded. hooked up F's Maestro. We called Andrew, the GM for our nursing agency. We headed toward the Capitol. We finally met up with Drew (Andrew) near the Capitol entrance. He explained everything to F and I about the interviews. He was also very thankful that we came. F was the only patient to attend on the agency's behalf. We went through security, which is always interesting with F due to the equipment. Security like all bags removed from the wheelchairs, but I'm not about to disconnect F's feeding pump and Farrell bag or his other supply bag. It's time consuming. The security officers were great about it. I'll say this Capitol security is much more kind to the disabled than the security provided by the local Sheriff's department at Family court (rude, unkind, and unprofessional). We head to our destination.
First stop was Assemblymember, Linda Halderman M.D.'s office. We met up with other representatives from other nursing agencies from surrounding cities. They too were here on behalf of their patients. F didn't get to meet the assembly member, only her staff member. I asked what F wanted me to tell them on his behalf. His message was about how much he appreciates having a nurse. How he gets a break from his parents as caregivers. He is more independent with his nurse than with us. He also wanted them to know his nurse has improved the quality of his life with the knowledge she has shared with him. He wishes that she could be paid a more competitive wage for the work she does. He also felt he would have better access to nurses if the wage were higher.
We left and went to another assemblymember's office. Met up with another agency employee who did his initial intake many years before. We again met with the assembly member's staff member. I helped F deliver his message. Then we packed up and headed home.
I couldn't be more proud of him. He was very tired from all the commotion and trying to use his communication device in the process. His select switch was a bit out of range and I forgot the tool to adjust it for him. He was tried and tried to select appropriate comments for the situation. He did really well considering its really his first day out with the device and I see it's potential. He didn't realize that he would get so tired moving around and trying to communicate. He is accustomed to just sitting at home practicing the scanning...not using it in real life situations. That brings another dimension to the device and a whole new level of fatigue.
F and I appreciated all the knowledge he shared with us about the waiver that funds his nursing. F is a part of what is called the EPSDT waiver. The funding for his nursing comes from Med-Cal. This program was set to have reimbursement rates cut last year that would have rolled back the reimbursement rate to 1993 rates. The rate has been the same since 2000. This portion of Medi-cal services only accounts for 1, yes ONE, percent of all Medi-cal funding yet it SAVES our state a lot of money. If memory serves me correctly a facility for F could cost up to $5,000 per day. This program $500 a day. I would like to add that although this program is funded by Medi-cal, we have private health insurance and they do not provide this level of care for F.
Drew walked us back to the car. He wanted to make sure we didn't get a ticket... and we didn't! So metered and handicap plates are covered! Whew! Thank you to Drew for the invite.
F and I appreciated the invite to Capitol. F would LOVE to do it again. I told him next time I'll make him a sign and bring it so that while he's standing (or sitting) in the halls he can advertise to the politicians and their staff walking the halls. This day made me realize why he wanted to retain his right to vote under his conservatorship. There is so much more to him than meets the eye.
We arrived downtown and drove, and drove, in circles looking for an accessible place to park. F has a Dodge Grand Caravan with a Braun Entervan lift. It requires a lot of space to accommodate F and the ramp (probably 8 feet at least). His wheelchair has such a long base. I kid you not, there is hardly any accessible parking downtown.The handicap spaces that were curbside had to be chosen by a moron when they chose the spaces to be designated for handicap parking and then painted. They were placed in front of trees. Seriously, trees! So even if I could park in the space, I'm not quite sure I wouldn't hit the tree with the lift. If I had room I'd then have to navigate F through dirt to the edge of the sidewalk. The other parking spaces near the handicap ones actually had sidewalk near them (Really? What were they thinking?). I finally found a space along another street that was on the end of the row. It wasn't handicap, but it was close to a parking lot and lined off so I could get F out. Then I noticed it was metered. I forgot my meter money! I had one quarter that gives me 12 minutes. I was hoping handicap plates wouldn't require meter money. I wasn't about to look for ANOTHER space!
We unloaded. hooked up F's Maestro. We called Andrew, the GM for our nursing agency. We headed toward the Capitol. We finally met up with Drew (Andrew) near the Capitol entrance. He explained everything to F and I about the interviews. He was also very thankful that we came. F was the only patient to attend on the agency's behalf. We went through security, which is always interesting with F due to the equipment. Security like all bags removed from the wheelchairs, but I'm not about to disconnect F's feeding pump and Farrell bag or his other supply bag. It's time consuming. The security officers were great about it. I'll say this Capitol security is much more kind to the disabled than the security provided by the local Sheriff's department at Family court (rude, unkind, and unprofessional). We head to our destination.
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| This is outside Linda Halderman's office |
We left and went to another assemblymember's office. Met up with another agency employee who did his initial intake many years before. We again met with the assembly member's staff member. I helped F deliver his message. Then we packed up and headed home.
I couldn't be more proud of him. He was very tired from all the commotion and trying to use his communication device in the process. His select switch was a bit out of range and I forgot the tool to adjust it for him. He was tried and tried to select appropriate comments for the situation. He did really well considering its really his first day out with the device and I see it's potential. He didn't realize that he would get so tired moving around and trying to communicate. He is accustomed to just sitting at home practicing the scanning...not using it in real life situations. That brings another dimension to the device and a whole new level of fatigue.
F and I appreciated all the knowledge he shared with us about the waiver that funds his nursing. F is a part of what is called the EPSDT waiver. The funding for his nursing comes from Med-Cal. This program was set to have reimbursement rates cut last year that would have rolled back the reimbursement rate to 1993 rates. The rate has been the same since 2000. This portion of Medi-cal services only accounts for 1, yes ONE, percent of all Medi-cal funding yet it SAVES our state a lot of money. If memory serves me correctly a facility for F could cost up to $5,000 per day. This program $500 a day. I would like to add that although this program is funded by Medi-cal, we have private health insurance and they do not provide this level of care for F.
Drew walked us back to the car. He wanted to make sure we didn't get a ticket... and we didn't! So metered and handicap plates are covered! Whew! Thank you to Drew for the invite.
F and I appreciated the invite to Capitol. F would LOVE to do it again. I told him next time I'll make him a sign and bring it so that while he's standing (or sitting) in the halls he can advertise to the politicians and their staff walking the halls. This day made me realize why he wanted to retain his right to vote under his conservatorship. There is so much more to him than meets the eye.
Tuesday, February 21, 2012
Headed to the ER for that Darn Cyst!
I was trying to blog about our day at the Capitol. After looking at that abscessed cyst upon our return home, R and I decided it was time to head to the ER. I called his primary care doctor so that F could be prepared for the trip and just in case insurance required it. F was thankful to hear that he does not have to check in if he does not want too. The cyst is just really rearing it's ugly head and starting to concern me. Prayers please for F that he will not have to wait many long hours and that he will be able to be treated and sent home without admission (although I have my doubts!).
I'll post a photo of that ugly thing in a bit.
18:51 update:
Omg! We caught a break. F is still considered pediatric until age 21! And the Peds waiting room is empty!!!
And for the record, F was unwillingly brought in. He did communicate yes to us, only because he can't see his abscess. But he refuses to stay. So those docs better talk a good talk if they want him to check in.
I'll post a photo of that ugly thing in a bit.
18:51 update:
Omg! We caught a break. F is still considered pediatric until age 21! And the Peds waiting room is empty!!!
And for the record, F was unwillingly brought in. He did communicate yes to us, only because he can't see his abscess. But he refuses to stay. So those docs better talk a good talk if they want him to check in.
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| We've joked that it has it's one zip code it's so large! |
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| Waiting patiently in the EMPTY peds area. The mask is for his safety. He doesn't want bring anything home with him. |
Today Will Not Be as Planned... (sigh!)
I got a message from F's nurse that she's not feeling well today. She's had a really rough couple of weeks due to a death in the family and just being sick herself. There's been a nasty virus going around. Which swept through my house as well (and yes, my hands hurt from washing them!). Today she will be out due to illness. Because F hasn't felt well, that abscess on his face, he may not want to venture out to the Capitol. If he does I'll take him, but his car needs gas and that's another thing added to the list.
My plans will just go out the window. I'm not sure how today will play out, all I know is that need to constantly be flexible. I can never wake up in the morning and expect the day to go as planned. There's always something thrown in to throw me off. To think I was actually going to apply for a part-time job to help earn some extra money to work on paying off some bills. I'm thinking this is perhaps a sign that I'm not meant to do anything else, but be at the beck and call of my children... which as a mother is how it should be. It's just discouraging.
It's discouraging, because to get anything done for myself. I always have to rely on help from someone else, either F's nurse or the hubby. The nurse gets sick too and she has a life outside of our home. I can't hold onto her and expect her to come through above and beyond what she already gives us during her work week. She gives us more in many ways than just her work week so it's not limited to her 40 hours. She is a resource and she allows me to contact her to bounce things off of her regarding F's care. Which I am ever so grateful for. The hubby works nights and needs some sleep when he gets home in the morning. He has an additional job that he does from the house. I have to accommodate him since he is the breadwinner. F and I have no one else, but them to go to for help and assistance.
Without a nurse it means F requires additional patience for me. For me anything I had planned for myself typically goes out the window. I've wanted to get my hair done for at least a month now. The first things I need is the time, second just the additional funding since it's really a luxury for me. I've been trying to save as much as possible and it's just hard to justify getting my hair colored.
Today, I would be satisfied getting the small errands done that need to be done and running my dogs three miles. If I can get those things done I'll at least feel more satisfied with myself. Yet, here I sit typing this. I'm just wasting my precious minutes that could be spent doing something productive. Because in all reality this blog really is a time sucker and I'm not sure why I'm bothering today. I just have a hard time being motivated sometimes, that to do list is really long in my head and it fatigues me just thinking about it.
I'm off to make a big pitcher of lemonade for today...
My plans will just go out the window. I'm not sure how today will play out, all I know is that need to constantly be flexible. I can never wake up in the morning and expect the day to go as planned. There's always something thrown in to throw me off. To think I was actually going to apply for a part-time job to help earn some extra money to work on paying off some bills. I'm thinking this is perhaps a sign that I'm not meant to do anything else, but be at the beck and call of my children... which as a mother is how it should be. It's just discouraging.
It's discouraging, because to get anything done for myself. I always have to rely on help from someone else, either F's nurse or the hubby. The nurse gets sick too and she has a life outside of our home. I can't hold onto her and expect her to come through above and beyond what she already gives us during her work week. She gives us more in many ways than just her work week so it's not limited to her 40 hours. She is a resource and she allows me to contact her to bounce things off of her regarding F's care. Which I am ever so grateful for. The hubby works nights and needs some sleep when he gets home in the morning. He has an additional job that he does from the house. I have to accommodate him since he is the breadwinner. F and I have no one else, but them to go to for help and assistance.
Without a nurse it means F requires additional patience for me. For me anything I had planned for myself typically goes out the window. I've wanted to get my hair done for at least a month now. The first things I need is the time, second just the additional funding since it's really a luxury for me. I've been trying to save as much as possible and it's just hard to justify getting my hair colored.
Today, I would be satisfied getting the small errands done that need to be done and running my dogs three miles. If I can get those things done I'll at least feel more satisfied with myself. Yet, here I sit typing this. I'm just wasting my precious minutes that could be spent doing something productive. Because in all reality this blog really is a time sucker and I'm not sure why I'm bothering today. I just have a hard time being motivated sometimes, that to do list is really long in my head and it fatigues me just thinking about it.
I'm off to make a big pitcher of lemonade for today...
Monday, February 20, 2012
Lobby Day at the Capitol Tomorrow
I almost forgot F has an appointment at the Capitol tomorrow. I'm hoping he will feel up to it since he has that huge abscess on his face near his jawline and ear. It's big enough that it could be pulled up on "Google Maps" as his teacher said today. Good thing F has a sense of humor!
We are supposed to go and talk with some of the legislature about the importance and benefits of home health nursing. I don't think it will be too hard to tell them how much help the nurse is and how I'd become a complete hermit without one. How F's health has dramatically improved because our nurse is smart and knowledgeable about useful things and not what network or channel Jerry Springer is on.
I'm excited to go with F and his nurse, but also very nervous. Usually, I would do these things alone with photos of my children. This time, F wants to go. I hope it is a positive experience for him. If anything it's an opportunity for him to try his new Dynavox. I just pray he feels better tomorrow.
We are supposed to go and talk with some of the legislature about the importance and benefits of home health nursing. I don't think it will be too hard to tell them how much help the nurse is and how I'd become a complete hermit without one. How F's health has dramatically improved because our nurse is smart and knowledgeable about useful things and not what network or channel Jerry Springer is on.
I'm excited to go with F and his nurse, but also very nervous. Usually, I would do these things alone with photos of my children. This time, F wants to go. I hope it is a positive experience for him. If anything it's an opportunity for him to try his new Dynavox. I just pray he feels better tomorrow.
Full-Inclusion... the Early Years
F was in a full-inclusion preschool the last half of his second year of preschool. He loved the inclusion. He had a strong teacher. She focused on communication and assistive technology (switch access). Unfortunately, he only spent about five months in her program. When he aged out to kindergarten she strongly encouraged that we continue on with full-inclusion. She felt that type of program could and would be really successful for him.
F's kindergarten year was hard. It had nothing to do with the school and the program. I suppose part could be due to the program, but I was really preoccupied during this time to really pay that much attention. Things appeared to be going well and progress reports seemed to show he was progressing.
F's sister, Cienna, had been diagnosed retinoblastoma when she was three weeks old. She was now two and diagnosed with extra-occular retinoblstoma (a very, very bad thing). This put her cancer in a more serious category and took the priority of trying to save her vision to trying to keep it from spreading. She would start treatments during April of F's preschool year and it would go on through the summer. Her treatments would end, not because she responded well, but because her young body could not tolerate them any longer. Shortly into F's year of of kindergarten, she would be diagnoses with metastatic retinoblastoma on a routine MRI. We were all devastated to say the least. Cienna was handed a death sentence...literally. So we were all a little distracted and I'm sure F was too.
So F's kindergarten year was pretty much a wash. I can't say if he met his goals or not. I can say that being around those healthy kids at school was probably a highlight and an escape for him at times. I can look back now and say I should have never sent him to school that year. He should have stayed home with Cienna and I. They were very close and her decline and subsequent death would be challenging for us all. Cienna would pass away February 5, 1998. After that time, I believe F's probably slept his kindergarten year away, or at least faked sleeping it away for the same reasons I could not get out of bed. We were overwhelmed by sadness and grief. Again, looking back he should have stayed home with me.
First grade through half of third grade F would continue to be a full-inclusion student. He enjoyed his peer friendships and interactions. He also enjoyed the curriculum. The problems were that there was little follow through with the instructional aide due to lack of support with his goals. While they should have been modifying curriculum and focusing on communication for him, F spent the better part of those years being an accessory to the classroom instead of a participant... if that description makes any sense to you.
They tried to work on communication by focusing on yes and no using his strength of a head turn. However, the individuals involved in implementation, did it so inconsistently or documented it incorrectly that they were constantly changing which head turn was for yes and no. Poor F had to be so confused. Granted communication was hard for us at home too. We had no definitive yes and no and we were probably bucking the system every time the school changed their method and didn't communicate it to us.
So consistency in program was the hardest obstacle in full-inclusion. Accommodating him in his wheelchair and his need for equipment for toileting and such was also quite a hurdle. Then when we began to have a hard time finding a home health nurse for staffing they didn't want him to come to school. They tried to tell me he couldn't come, even though it stated no where in the IEP that I had to provide a nurse for F to participate in a school program.
Curriculum support was nonexistent. There was no modification of the curriculum at all combined with the inability to confirm his understanding made reinforcement impossible. Although, I will say that I have learned the last few years that he was a sponge, still is a sponge, soaking up knowledge and information all around him.
The instructional aide was changed shortly after we no longer had a nurse available to send him to school. Or due to family circumstances chose to use our nursing partly for support at home. The district nurse told me this was done because the new aide had much better qualifications. She was a respiratory therapist and they felt she better suited his medical needs. She was over confident because her dad was a paraplegic so she thought she knew it all about transfers, F's needs, and care. On the two days a week I did send a nurse she talked trash about me the entire day to my nurse and to my son. I tried and tried to get her removed, but the district deemed her appropriate. That is until she called me to pick him up for emergency medical care because she broke his femur while moving him from a stander. As of a few years ago, she still had her job.
So in a nutshell, full-inclusion meant for my son was absorbing knowledge and information by being around it. Inconsistency in goal implementation, lack of support services, equipment, and curriculum modifications necessary. He was well socialized and excelled in making friends even without a consistent ability to convey his understanding of them. The "we can't tell if he understands us"would be consistent all through his records because if you can't speak, are in a wheelchair, and visually impaired the instructors, support staff, and administrators automatically assumed he is incapable of understanding the English language. He was also assumed to be very low functioning intellectually. I was even told at times that I only read into his behavior what I want to see. That I've convinced myself that he is smarter than he is. It was "coincidence" that he laughed appropriately at jokes or in audio books that were funny. It was such a struggle and a fight for me. I can only imagine how F felt. He was more like a classroom mascot, but these years in middle school would be far better than the time he spent in a middle school special day class.
F's kindergarten year was hard. It had nothing to do with the school and the program. I suppose part could be due to the program, but I was really preoccupied during this time to really pay that much attention. Things appeared to be going well and progress reports seemed to show he was progressing.
F's sister, Cienna, had been diagnosed retinoblastoma when she was three weeks old. She was now two and diagnosed with extra-occular retinoblstoma (a very, very bad thing). This put her cancer in a more serious category and took the priority of trying to save her vision to trying to keep it from spreading. She would start treatments during April of F's preschool year and it would go on through the summer. Her treatments would end, not because she responded well, but because her young body could not tolerate them any longer. Shortly into F's year of of kindergarten, she would be diagnoses with metastatic retinoblastoma on a routine MRI. We were all devastated to say the least. Cienna was handed a death sentence...literally. So we were all a little distracted and I'm sure F was too.
So F's kindergarten year was pretty much a wash. I can't say if he met his goals or not. I can say that being around those healthy kids at school was probably a highlight and an escape for him at times. I can look back now and say I should have never sent him to school that year. He should have stayed home with Cienna and I. They were very close and her decline and subsequent death would be challenging for us all. Cienna would pass away February 5, 1998. After that time, I believe F's probably slept his kindergarten year away, or at least faked sleeping it away for the same reasons I could not get out of bed. We were overwhelmed by sadness and grief. Again, looking back he should have stayed home with me.
First grade through half of third grade F would continue to be a full-inclusion student. He enjoyed his peer friendships and interactions. He also enjoyed the curriculum. The problems were that there was little follow through with the instructional aide due to lack of support with his goals. While they should have been modifying curriculum and focusing on communication for him, F spent the better part of those years being an accessory to the classroom instead of a participant... if that description makes any sense to you.
They tried to work on communication by focusing on yes and no using his strength of a head turn. However, the individuals involved in implementation, did it so inconsistently or documented it incorrectly that they were constantly changing which head turn was for yes and no. Poor F had to be so confused. Granted communication was hard for us at home too. We had no definitive yes and no and we were probably bucking the system every time the school changed their method and didn't communicate it to us.
So consistency in program was the hardest obstacle in full-inclusion. Accommodating him in his wheelchair and his need for equipment for toileting and such was also quite a hurdle. Then when we began to have a hard time finding a home health nurse for staffing they didn't want him to come to school. They tried to tell me he couldn't come, even though it stated no where in the IEP that I had to provide a nurse for F to participate in a school program.
Curriculum support was nonexistent. There was no modification of the curriculum at all combined with the inability to confirm his understanding made reinforcement impossible. Although, I will say that I have learned the last few years that he was a sponge, still is a sponge, soaking up knowledge and information all around him.
The instructional aide was changed shortly after we no longer had a nurse available to send him to school. Or due to family circumstances chose to use our nursing partly for support at home. The district nurse told me this was done because the new aide had much better qualifications. She was a respiratory therapist and they felt she better suited his medical needs. She was over confident because her dad was a paraplegic so she thought she knew it all about transfers, F's needs, and care. On the two days a week I did send a nurse she talked trash about me the entire day to my nurse and to my son. I tried and tried to get her removed, but the district deemed her appropriate. That is until she called me to pick him up for emergency medical care because she broke his femur while moving him from a stander. As of a few years ago, she still had her job.
So in a nutshell, full-inclusion meant for my son was absorbing knowledge and information by being around it. Inconsistency in goal implementation, lack of support services, equipment, and curriculum modifications necessary. He was well socialized and excelled in making friends even without a consistent ability to convey his understanding of them. The "we can't tell if he understands us"would be consistent all through his records because if you can't speak, are in a wheelchair, and visually impaired the instructors, support staff, and administrators automatically assumed he is incapable of understanding the English language. He was also assumed to be very low functioning intellectually. I was even told at times that I only read into his behavior what I want to see. That I've convinced myself that he is smarter than he is. It was "coincidence" that he laughed appropriately at jokes or in audio books that were funny. It was such a struggle and a fight for me. I can only imagine how F felt. He was more like a classroom mascot, but these years in middle school would be far better than the time he spent in a middle school special day class.
F has Technology Will Send Email
F's AT/AAC team came today. They got his wheelchair mount appropriately attached to the chair. They set up his Maestro for him. He was so excited. The newest thing he learned was how to draft and send an email. He was very happy to be able to have the ability to do this task independently from me.
I was at the store getting some tea bags to attempt to treat his abscessed cyst on his cheek (that's another story). I opened my email to see that he had sent me a message. Although, it wasn't the most well thought out email, it was an independent email sent by him. I was so excited.
Today was a really great day for F. He has waited many years to have this type of device. I can remember reading about children who used them and thinking "I wish F could do the same." I no longer have to wish. He has one. He has had the ability to use a switch with his head for years. He can hear. He can follow dialogue. He can follow directions. All of these things the district staff refused to believe he could do.
I was at the store getting some tea bags to attempt to treat his abscessed cyst on his cheek (that's another story). I opened my email to see that he had sent me a message. Although, it wasn't the most well thought out email, it was an independent email sent by him. I was so excited.
Today was a really great day for F. He has waited many years to have this type of device. I can remember reading about children who used them and thinking "I wish F could do the same." I no longer have to wish. He has one. He has had the ability to use a switch with his head for years. He can hear. He can follow dialogue. He can follow directions. All of these things the district staff refused to believe he could do.
Sunday, February 19, 2012
IEP's and Consultation Services
I realized when I did my post about being prepared for IEP's that I left out a very important thing. That is consultation services, direct services on consult model. Call it whatever you would like, if it's a service that contains any word close to "consult" it's a bad thing. I don't know how "consult" services were explained to me for many IEP's, but the program specialist talked a good talk. They list the services and next to each one how many visits and duration. On paper it looks like a lot of services when you see all those numbers next to PT, OT, Speech, etc., but it's really just for documentation if it contains the word consult.
What I would learn when I requested all of my son's records would literally shock me. Okay, maybe I was just clueless and naive. Maybe the way the program specialists through the years talked in circles and prettied things up convinced me it was something it wasn't. I'm not really sure. All I know is I felt duped. I felt like I had been sold a product that really wasn't what it was. Consult model means that whoever the provider is, let us use PT, never has to come and see your child within the classroom.
For example, The IEP would state 6 visits for 30 minutes per year and either be marked consult or have it written next to it. The PT would call and speak with the teacher on the phone about my son. Inquire as to whether they needed any support or assistance and that would count as a visit. The PT never stepped foot in the classroom, but it was document that my son received PT based on that phone call.
As it was explained the PT, or whatever service you choose to insert, would work with the classroom staff and they would be implementing the services. I'm not really sure how this qualifies as physical therapy, occupational therapy, speech or vision services. All I know is throughout my son's records I saw a lot of remarks regarding these types of visits. And yet, when my son failed to meet goals it was always his fault. It never had anything to do with the fact that his services were the equivalent of a chart review and phone conversation. This is why you should be very mindful of your child's records. If your child isn't making progress and the IEP team can't really account for why the student isn't making progress without blaming the student, it's time to take a hard look at the goals and services. I wish I'd known this very early on.
Please know that I don't believe that every child is short changed in the education system. I have just a tainted perspective. I hear far too often about more children falling behind or about teaching staff or districts who talk about implementing things for students that never come to fruition. It happens a lot. As parents and advocates of these children we really have to be very diligent at staying on top of things. The education system will not serve our children without our involvement and support.
What I would learn when I requested all of my son's records would literally shock me. Okay, maybe I was just clueless and naive. Maybe the way the program specialists through the years talked in circles and prettied things up convinced me it was something it wasn't. I'm not really sure. All I know is I felt duped. I felt like I had been sold a product that really wasn't what it was. Consult model means that whoever the provider is, let us use PT, never has to come and see your child within the classroom.
For example, The IEP would state 6 visits for 30 minutes per year and either be marked consult or have it written next to it. The PT would call and speak with the teacher on the phone about my son. Inquire as to whether they needed any support or assistance and that would count as a visit. The PT never stepped foot in the classroom, but it was document that my son received PT based on that phone call.
As it was explained the PT, or whatever service you choose to insert, would work with the classroom staff and they would be implementing the services. I'm not really sure how this qualifies as physical therapy, occupational therapy, speech or vision services. All I know is throughout my son's records I saw a lot of remarks regarding these types of visits. And yet, when my son failed to meet goals it was always his fault. It never had anything to do with the fact that his services were the equivalent of a chart review and phone conversation. This is why you should be very mindful of your child's records. If your child isn't making progress and the IEP team can't really account for why the student isn't making progress without blaming the student, it's time to take a hard look at the goals and services. I wish I'd known this very early on.
Please know that I don't believe that every child is short changed in the education system. I have just a tainted perspective. I hear far too often about more children falling behind or about teaching staff or districts who talk about implementing things for students that never come to fruition. It happens a lot. As parents and advocates of these children we really have to be very diligent at staying on top of things. The education system will not serve our children without our involvement and support.
Friday, February 17, 2012
It's here! The Maestro is here!
F is super excited. The Dynavox Maestro has arrived. I've got it plugged in for him. I turned it on and tarted the set up process The initial set up screens have a bit of reading to get through. Unfortunately, my daughter has a swim meet this weekend which will take up a lot of my time.
F's AT/AAC team are scheduled to be here Monday to help get him set up.
I can't wait for him to be able to go out into the community for the first time with his own communication.
F's AT/AAC team are scheduled to be here Monday to help get him set up.
I can't wait for him to be able to go out into the community for the first time with his own communication.
Being Prepared for IEPs
Although we no longer participate in the IEP process, I thought I'd share some helpful information that I learned along the way. There are many aspects to the IEP process. I am not an attorney or all-knowing specialist regarding them. I merely learned some very hard lessons through our IEP process.
The IEP in a nutshell is your child's documented guide to their education. It should be based on appropriate assessment of their individual needs and strengths. One thing I discovered, and it's a big thing, HUGE really... is that my son had been negatively cognitively labeled without one cognitive assessment by a highly-trained and qualified individual ever being done on him. The level, or lack of cognitive levee, was assumed and it did a lot of damage to his education and intellectual performance. If only I'd known then what I know now. Particularly since I trusted individuals within the process to assist and guide me. They were not on my side nor F's side.
So in a nutshell I'm going to list some things that I wish someone had told me. I cannot at this time go into my son's long drawn out education and hit the highlights. If you visited my About My Blog page then you know that I want to cover a lot of territory. For now, I just have to put things down that I think can be the most helpful and beneficial. If you have questions, please comment or contact me. F and I are pretty open about our experiences. You can email us at:
Lemonadeandporcupines@gmail.com
Key things that I think very parent should remember:
The IEP in a nutshell is your child's documented guide to their education. It should be based on appropriate assessment of their individual needs and strengths. One thing I discovered, and it's a big thing, HUGE really... is that my son had been negatively cognitively labeled without one cognitive assessment by a highly-trained and qualified individual ever being done on him. The level, or lack of cognitive levee, was assumed and it did a lot of damage to his education and intellectual performance. If only I'd known then what I know now. Particularly since I trusted individuals within the process to assist and guide me. They were not on my side nor F's side.
So in a nutshell I'm going to list some things that I wish someone had told me. I cannot at this time go into my son's long drawn out education and hit the highlights. If you visited my About My Blog page then you know that I want to cover a lot of territory. For now, I just have to put things down that I think can be the most helpful and beneficial. If you have questions, please comment or contact me. F and I are pretty open about our experiences. You can email us at:
Lemonadeandporcupines@gmail.com
Key things that I think very parent should remember:
- Your IEP team is payed and employed by a school district or third-party provider. They do not work for you. They provide a service and that service is controlled and dictated by the employing district. They all appear to have your child's best interest's at heart and many educators and DIS providers really want your child to succeed, but and it's a big but, they may have their hands tied and you may never know it.
- Document EVERYTHING in writing. A small conversation you have had with any provider, teacher, administrator should always be documented and submitted back to them for verification. If they do not correct the document it becomes fact and a part of your records that you maintain for your child. If they are doing a good job they will also make those documents become part of your child's school records. This documentation, no matter how small or trivial you may believe it is, can be your best asset should you need it later.
- Always communicate your requests for assessments, progress reports, IEP's, etc. in WRITING. Always copy all participating parties and administrators (teacher, program specialist, princiipel, etc.). Document, document, document. Notice the emphasis on DOCUMENTING!
- Always record your IEP meetings. You must give notice to the district in writing, and if memory serves me correctly, 48-hours notice is required. But you should know the meeting is scheduled and be able to plan for that.
- Assessments should reflect what your child CAN do and their strengths. If they reflect that your child is happy and has a supportive family that cares them... that's not really about what your child CAN do, nor is it an individual strength.
- It's a good rule of thumb to ask them to give examples and to show you what goal implementation looks like. I like them to support their motives and intentions with regard to goal setting and their plan for implementation.
- For children with health needs, remember to make sure you have your doctor's orders as specific as they can be and include them in the IEP details. Don't just fill out medical forms and expect those things to be addressed as part of the IEP. If it's not in the IEP it doesn't have to be done. For example, two-person lifting. My son had an aide that worked for him, put in place by the district, she did not think she needed to perform a two person lift. She would subsequently end up fracturing my son's femur during his school day. To this day, we do not know exactly what happen, but we have an idea of how it occurred, confirmed by our son. Two-person lifting was not addressed within our IEP.
- Your child's records, request them. Read them, get to know them. Look at what has been done and/or not done. You want everything IEPs, assessments, health records, transportation records, medication logs, etc. There is no piece of paper in your child's file that is not important until you have looked at every single one. It takes time, but trust me you will learn a whole lot about your child's education or lack of. I discovered my child wasn't receiving an education. He was participating in childcare.
- When my son failed to meet their crappy goals he was blamed for it. It was never the teacher's fault or the DIS providers. It was my son's failure. According to them it had nothing to do with the fact they didn't follow through or implement the goals. Nor was it because their goals were not based on assessments. According to the IEP team it was because my son was unmotivated, unteachable, and unhealthy. Nor did they ever take into consideration the learning environment.
- Don't sign an IEP at the meeting. Take a copy of the IEP home with you. Read it add notes and make corrections to it as needed. Make sure it clearly represents the meeting along with your input and participation. The district I was in, only documented what they wanted documented in the IEP. Once I became skilled at this... it frustrated them tremendously because it began to create a history of what they were NOT doing. I began to get control of my child's education and it made them uncomfortable.
- If at any time you feel your child is not safe at school, do not take these feelings lightly. Go with your gut. Make unannounced visits at the classroom. You can come up with a valid reason to stop by and see your child. Catching a glimpse of what's happening when you arrive unexpectedly can tell you a lot about the classroom.
- If your child comes home crying multiple times in a week and they are nonverbal, try not to brush it off as just being uncomfortable. This happened to us and I merely though my child was in pain. It wasn't pain it was boredom and stress he was under in the environment he was in. Listening to screaming kids and and fearing one that was aggressive was not a positive learning environment for him. If only I'd investigated further.
- Know that you are your child's best advocate. You may have to be a squeaky wheel, you may have to invest a lot of time, but you know your child best and never let anyone convince you that you are not the expert on your child!
I chose to hire an advocate to teach and educate me about my child's records and the IEP process. She came to the table with a different eye view. She made all of the difference in how I saw my son as a student. The knowledge I gained from her was invaluable. It still helps me to this day.
IEP's are stressful. Mine became so contentious that it gave me anxiety to deal with the program specialist. I tried and tried to negotiate with the district. I documented my son's case meticulously. I even filed compliance complaints. However, educating my son was not a priority. I eventually hired an attorney and worked the process with representation.
Thursday, February 16, 2012
Quality of Life... who defines it?
I recently read an article about a young girl who has been denied a kidney transplant due to her developmental delays, mental retardation, mental impairments... whatever phrase you choose. The family is furious, as they should be.
I am a bit confused by how we as a society define quality of life. How is it determined? Who defines quality of life? Do they have a set scale? Do they have specific criteria? Do they have family members or children who have similar conditions that assist them in determining and defining quality of life?
When Cienna was diagnosed with retinoblastoma, I can recall the argument about giving her chemotherapy to save her vision like it was yesterday. We were in a different position than most families receiving a new retinoblastoma diagnosis. We already lived with a child who had the equivalent of a traumatic brain injury who was also visually impaired. He would never be able to walk or speak. He also had seizures and other health problems. Cienna had a fully functioning brain only her eyes were affected. To me vision was the least of my concerns. People can live functioning lives without their vision. I've met blind people who have had jobs and families. Cienna's future quality of life was predicted to be less if she was unable to see. This was predetermined... not by us.
F's life is judged or defined as less, less joyful, less healthy, less independent, less smart... the list goes on and on. I've seen the look from people who feel sorry for him. I see how people judge him and form opinions about him. I can tell you, I'm sure, they only see what he unable to do. We've made decisions for F at times throughout his life to maintain or improve his quality of life that were hard to make. Decisions that came with risks, but the benefit outweighed them. F is an adult now. He's very in tune with his health needs. He knows how he feels and when he needs medical attention. He is involved in his own care.
F is a joyful young man. He has a life he enjoys. His independence is defined by him and it's different than what independence means to others. He controls what he can. He has a great nurse who assists him. He is teachable and has a thirst for knowledge and learning. Should he become ill or need medical care the power of defining his quality of life could possibly be placed in someone else's hands. Shouldn't decisions be up to F and his family?
It saddens me deeply to hear about individuals or groups that have the power to determine or define the quality of a life that they have no understanding of. They see this life as being "less" because it's different than what is predetermined as the norm.
I am a bit confused by how we as a society define quality of life. How is it determined? Who defines quality of life? Do they have a set scale? Do they have specific criteria? Do they have family members or children who have similar conditions that assist them in determining and defining quality of life?
When Cienna was diagnosed with retinoblastoma, I can recall the argument about giving her chemotherapy to save her vision like it was yesterday. We were in a different position than most families receiving a new retinoblastoma diagnosis. We already lived with a child who had the equivalent of a traumatic brain injury who was also visually impaired. He would never be able to walk or speak. He also had seizures and other health problems. Cienna had a fully functioning brain only her eyes were affected. To me vision was the least of my concerns. People can live functioning lives without their vision. I've met blind people who have had jobs and families. Cienna's future quality of life was predicted to be less if she was unable to see. This was predetermined... not by us.
F's life is judged or defined as less, less joyful, less healthy, less independent, less smart... the list goes on and on. I've seen the look from people who feel sorry for him. I see how people judge him and form opinions about him. I can tell you, I'm sure, they only see what he unable to do. We've made decisions for F at times throughout his life to maintain or improve his quality of life that were hard to make. Decisions that came with risks, but the benefit outweighed them. F is an adult now. He's very in tune with his health needs. He knows how he feels and when he needs medical attention. He is involved in his own care.
F is a joyful young man. He has a life he enjoys. His independence is defined by him and it's different than what independence means to others. He controls what he can. He has a great nurse who assists him. He is teachable and has a thirst for knowledge and learning. Should he become ill or need medical care the power of defining his quality of life could possibly be placed in someone else's hands. Shouldn't decisions be up to F and his family?
It saddens me deeply to hear about individuals or groups that have the power to determine or define the quality of a life that they have no understanding of. They see this life as being "less" because it's different than what is predetermined as the norm.
Your outward appearance does not determine your IQ!
Just because someone is disabled does not mean that they have a low IQ. An Individual with disability may use a walker or wheelchair for mobility. They may talk funny or even possibly drool. They may look funny and make funny noises. That does not mean they have a low IQ.
I had a discussion with a young woman and her aide recently. She mentioned how people she meets treat her. They get really close and talk to her like they would a very small child. She is in her twenties. She has cerebral palsy and uses a walker for mobility. She lives independently, but needs some assistance. She attends college. There is nothing wrong with her mind.
My son is treated the same way. Why is it that the individuals who interact with him speak really slow and really loud? Sometimes they do not address him at all they only address the speaking individual with him. There is nothing wrong with his hearing. There is nothing wrong with his understanding of the English language. What is wrong is that he cannot speak due to cerebral palsy. He can communicate. He can understand.
Many individuals throughout my son's life only chose to focus on what he couldn't do. They never really looked or considered what he could do. They never thought what about what he accomplish with switch access. He's very visually impaired, but he can recognizes what is familiar to him. If he could recognize colors could he recognize symbols. They didn't recognize that he was quite teachable.
I think it is an inherent desire by all individuals to be treated with dignity and respect as thinking, feeling individuals. It is in our nature to desire knowledge and stimulation from our environment. The severely disabled are not objects in rooms, they are people. People who are watching and observing and thinking. People who have physical challenges may have speech that is impaired or difficult to understand, but they are the same thinking, feeling individuals as the rest of the community. Just as we would like to be treated with dignity and respect and to seek out and build friendships so do they.
Here is something to think about the disabled community is the ONLY minority group that any individual can join at any time. It does not discriminate against your color or your status in life. One head injury, one tragic accident, one tragedy can reduce your body to less than fully functioning.
I had a discussion with a young woman and her aide recently. She mentioned how people she meets treat her. They get really close and talk to her like they would a very small child. She is in her twenties. She has cerebral palsy and uses a walker for mobility. She lives independently, but needs some assistance. She attends college. There is nothing wrong with her mind.
My son is treated the same way. Why is it that the individuals who interact with him speak really slow and really loud? Sometimes they do not address him at all they only address the speaking individual with him. There is nothing wrong with his hearing. There is nothing wrong with his understanding of the English language. What is wrong is that he cannot speak due to cerebral palsy. He can communicate. He can understand.
Many individuals throughout my son's life only chose to focus on what he couldn't do. They never really looked or considered what he could do. They never thought what about what he accomplish with switch access. He's very visually impaired, but he can recognizes what is familiar to him. If he could recognize colors could he recognize symbols. They didn't recognize that he was quite teachable.
I think it is an inherent desire by all individuals to be treated with dignity and respect as thinking, feeling individuals. It is in our nature to desire knowledge and stimulation from our environment. The severely disabled are not objects in rooms, they are people. People who are watching and observing and thinking. People who have physical challenges may have speech that is impaired or difficult to understand, but they are the same thinking, feeling individuals as the rest of the community. Just as we would like to be treated with dignity and respect and to seek out and build friendships so do they.
Here is something to think about the disabled community is the ONLY minority group that any individual can join at any time. It does not discriminate against your color or your status in life. One head injury, one tragic accident, one tragedy can reduce your body to less than fully functioning.
Scrape, and Scrape, and Scrape Some More!
Yesterday I invested $30 in a scraper. I need the scraper to scrape all of the adhesive and backing that was under the tile we removed. Here's what I learned: It is going to be a labor intensive project. That boiling water helps soften the vinyl and adhesive so you can scrape, and scrape, and scrape some more.
I'm choosing to do all of this scraping because my son is sensitive to odors and chemical smells. I'm going to have to figure out just how to tape of the kitchen so we can breath and blow the fumes out the window during the project. So I am trying to keep anything that has a chemical odor at a minimum. It will be interesting just how slow this scraping moves along. I am seriously wondering what we were thinking when we came up with this hair-brained idea to take on the staining and finishing of the concrete. Like I don't have enough on my plate. There are not even enough hours in the day to get everything accomplished already.
This small section took an hour. On the bright side I used enough muscle to feel like I was getting a mild workout. I still have a lot of floor to scrape. I'll just count it in my calorie burn for the day. I'll try to work on it every extra moment I have. I just hope it doesn't take forever because it certainly feels like it is going to!
I'm choosing to do all of this scraping because my son is sensitive to odors and chemical smells. I'm going to have to figure out just how to tape of the kitchen so we can breath and blow the fumes out the window during the project. So I am trying to keep anything that has a chemical odor at a minimum. It will be interesting just how slow this scraping moves along. I am seriously wondering what we were thinking when we came up with this hair-brained idea to take on the staining and finishing of the concrete. Like I don't have enough on my plate. There are not even enough hours in the day to get everything accomplished already.
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This small section took an hour. On the bright side I used enough muscle to feel like I was getting a mild workout. I still have a lot of floor to scrape. I'll just count it in my calorie burn for the day. I'll try to work on it every extra moment I have. I just hope it doesn't take forever because it certainly feels like it is going to!
Wednesday, February 15, 2012
Home, Private, or Public School... no matter what it's a tough decision!
My daughter, C, who is a sixth grader this year, has been home schooled since third grade. We are with a public homeschool charter which makes life a lot easier for our accountability. I have enjoyed having her at home and teaching her. She has grown much closer to her older brother during this time and they have developed a very nice friendship with each other. This year has been such a struggle for me managing and implementing both of their educations.
My son has providers who work with him here at home. He is special education and needs direct services for physical therapy, speech, assistive technology, augmentative communication, and his curriculum. He should use vision services and orientation and mobility, but right now we only have time and room in his schedule for those services and those are the ones he wanted most.
My daughter takes classes outside the home which has helped tremendously. She and I are struggling with our curriculum and our schedule. It's tough to get everything done that we need to. I feel like her education has just been falling by the way side. We know we need to make some changes.
We started discussing what our options were. We are looking at online curriculum that may offer more structure and less planning on my part. So far we are not having much success with the online curriculum and structure. It's just not seamless enough and she likes the feel of books not staring at a screen.
Public schools in our area are in my least favorite school district. I spent so long trying to get my son an education that I'm just not anxious to enroll C. The other big problem with our local schools is class size. There are just too many kids in these classes and on these campuses. I don't like that they teach to children to be great test takers, not great learners. Administratively, public education seems to work very hard to preserve the entity of public education, not educate children and create life-long passionate learners. Churn them in and churn them out seams to be the system.
Public charter schools seam to be more student and family driven, but they are still publicly funded and held to the same accountability as regular public schools. We love our local public homeschool charter. We love our supervising teacher. We love the flexibility and the accountability provided. There are onsite local charters that are a closed campus not independent or home study programs that we are considering. The one we are most interested in hasn't even gotten approval to open and it's only through eighth grade which would require a school change... so much to think about.
Private schools can be expensive, but smaller in class size. Administratively private schools are smaller so you have a much bigger voice. You choose the private school based on many factors. Class sizes can be smaller, as well as campuses. There can be many pluses. They offer a bit more flexibility than the public or public charter school because they are privately funded.
C and I had a discussion one day about school. During our talk I learned how much she loves the Bible and how she really thinks her friends are lucky to have a group Bible study and prayer included in their school day. I took what she said very seriously. We toured a private Christian school that we have many friends who's children attend and speak very highly of the school. There are only 85 seventh graders and approximately 250 middle school students. A huge difference from the 700 plus at the public home school that she would attend or the 1,000 or much more at some other middle schools with open enrollment. C loved this school. This is where her heart pulls her.
R and I are looking at all of our options to enroll her in this school. It would be a sacrifice from the ENTIRE family. A sacrifice financially... money is already tight. It's not remotely close to the house it would be a commute. F may be required to go with me to take her some mornings (it's a lot of work to get him up and out). There is just so much to think about.
My son has providers who work with him here at home. He is special education and needs direct services for physical therapy, speech, assistive technology, augmentative communication, and his curriculum. He should use vision services and orientation and mobility, but right now we only have time and room in his schedule for those services and those are the ones he wanted most.
My daughter takes classes outside the home which has helped tremendously. She and I are struggling with our curriculum and our schedule. It's tough to get everything done that we need to. I feel like her education has just been falling by the way side. We know we need to make some changes.
We started discussing what our options were. We are looking at online curriculum that may offer more structure and less planning on my part. So far we are not having much success with the online curriculum and structure. It's just not seamless enough and she likes the feel of books not staring at a screen.
Public schools in our area are in my least favorite school district. I spent so long trying to get my son an education that I'm just not anxious to enroll C. The other big problem with our local schools is class size. There are just too many kids in these classes and on these campuses. I don't like that they teach to children to be great test takers, not great learners. Administratively, public education seems to work very hard to preserve the entity of public education, not educate children and create life-long passionate learners. Churn them in and churn them out seams to be the system.
Public charter schools seam to be more student and family driven, but they are still publicly funded and held to the same accountability as regular public schools. We love our local public homeschool charter. We love our supervising teacher. We love the flexibility and the accountability provided. There are onsite local charters that are a closed campus not independent or home study programs that we are considering. The one we are most interested in hasn't even gotten approval to open and it's only through eighth grade which would require a school change... so much to think about.
Private schools can be expensive, but smaller in class size. Administratively private schools are smaller so you have a much bigger voice. You choose the private school based on many factors. Class sizes can be smaller, as well as campuses. There can be many pluses. They offer a bit more flexibility than the public or public charter school because they are privately funded.
C and I had a discussion one day about school. During our talk I learned how much she loves the Bible and how she really thinks her friends are lucky to have a group Bible study and prayer included in their school day. I took what she said very seriously. We toured a private Christian school that we have many friends who's children attend and speak very highly of the school. There are only 85 seventh graders and approximately 250 middle school students. A huge difference from the 700 plus at the public home school that she would attend or the 1,000 or much more at some other middle schools with open enrollment. C loved this school. This is where her heart pulls her.
R and I are looking at all of our options to enroll her in this school. It would be a sacrifice from the ENTIRE family. A sacrifice financially... money is already tight. It's not remotely close to the house it would be a commute. F may be required to go with me to take her some mornings (it's a lot of work to get him up and out). There is just so much to think about.
Tuesday, February 14, 2012
Hiring a Paraeducator
F's current paraeducator, who is a college student, has found that her college schedule is too hectic to continue working with F. He loves what she brings to the table, but has felt that she has had conflicts in meeting his educational needs as per the job description. So here we are in the middle of our school year posting for a new paraeducator.
I'd like to fill the position as soon as possible, but I know that it will take time to find the right person. I'm discouraged and frustrated. I wish communication had been better between his current paraeduator so that we would not be in this position at this time. I realize that I'm responsible for my part in the lack of communication. I'm just seriously overwhelmed while wanting to respect F's space so that he didn't feel that I was being to invasive in his lessons and his learning.
Hopefully, our posting will get responses. I don't want to be discouraged. I especially don't want F to be left behind again, by the education system.
Praying we find the right person for him very soon!
I'd like to fill the position as soon as possible, but I know that it will take time to find the right person. I'm discouraged and frustrated. I wish communication had been better between his current paraeduator so that we would not be in this position at this time. I realize that I'm responsible for my part in the lack of communication. I'm just seriously overwhelmed while wanting to respect F's space so that he didn't feel that I was being to invasive in his lessons and his learning.
Hopefully, our posting will get responses. I don't want to be discouraged. I especially don't want F to be left behind again, by the education system.
Praying we find the right person for him very soon!
Monday, February 13, 2012
The Kitchen... what were we thinking?
If you have read any of my other posts, you know I have a full plate. I'm the primary caregiver of my son, who is severely disabled. I homeschool (probably not very well these days). I started this blog (which is quite therapeutic in many ways, but time consuming). I have a house to maintain (no cleaning lady or ladies...even though I WISH!). I'm a taxi driver to my daughter and all of her activities. I seriously can barely keep my head above water. So I have managed to convince R (the hubby) to help me start on our kitchen remodel.
When will we ever get the time? With our life, NEVER! So it was time to just stop talking and finally start doing. A couple of days after having friends and family over to ring in the New Year we finally had the last of chasing people around that darn oversized island. So we woke up one morning with no plan figured out how to take it out and did just that. The problem, it left a huge untiled spot in the floor that was about 2 feet by 4 feet. Just enough to stub a toe on. Not to mention the pipe hole that is in the floor because of the electrical that came to the island. We found some old tile in the garage filled the spots to make them level and threw a rug over it.
We woke up this morning. Began our regular duties. Then I pulled back that rug and asked R whenever are we going to do this floor? Then out came a mallet and long screw driver. Then he brought out a larger mallet and crow bar and we got to work. All while managing F's care. Poor kid watched basketball or whatever sport he chose (he didn't complain) and he gave us four hours of demolition and clean up. Now we are left with the remaining vinyl that needs to come up and all of the adhesive that has to be removed. We still have some tile in the bottom of the pantry, behind the refrigerator, and the small strip in front of the stove. We still need to throw the rug down to cover the hole from the electrical that came in to the island. Stage one is done. Now we have to move into action because I can't stand the way it feels under my bare feet!
We have not liked the kitchen set up since we moved into this house (it was brand new). The builders put in an oversized island for the size of the kitchen. There is so much we'd like to change about it. R tiled the kitchen for me two years after we moved in to cover the cheap vinyl put in by the builder. But that darn island in the middle took up all the space. We've talked for years about the things we'd like to do, we've just never had the time.
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| There's that oversized island in the messy kitchen |
We've talked and talked about what to do with the floor. We have finally decided that finishing the concrete would be the least expensive. Money is tight right now for many reasons. So we keep talking and talking about colors, acid wash, etc. I've got a Pinterest board dedicated to concrete. So finally it's settled that's our plan. Again, we have the problem with time. There is just never enough to do it all.
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| The start of the removal |
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| What a mess! |
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| Taking a moment to document. |
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| Trying to clean up so we can have dinner. |
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| Four hours later, the kitchen is clean, but the floor feels gross. |
Come back to see how it progresses. Next step scraping the floor down to the bare concrete. We have the remainder of the vinyl to remove and the adhesive. I'm sure that will be more than four hours of work.
Favorite Quote of the Day
I signed up for the daily email form the website thedailylove.com. It came highly recommended by a friend. I will admit I'm enjoying it very much. Thank you, Chris ;)
In Today's Quotes this morning was the following:
"The greatest gift you can ever give another person is your own happiness."
- Esther Abraham-Hicks, an American inspirational speaker and best-selling author.
This is so often forgotten. I think there are times when we think our happiness is dependent upon others. We allow others to influence our happiness, but ultimately we are responsible for it.
My son, F, during some of his most isolated times still found happiness. When he was stuck in the education system with individuals that could not communicate with him along with being isolated he would sleep. There were times when he was awake that he was very joyful. Those were the moments everyone remembered. He had other reasons for sleeping during his day like boredom, fear, and stress, but when he had those moments that he could seize to be joyful he did.
My husband has had a tough few years due to stress at work and personal struggles. I think trying to find his own happiness has been a part as well.When we are struggling we influence those around us emotionally and not usually in a positive manner. I can see the influence I have when I'm not feeling my happiest and I'm struggling to find joy. I understand what he goes through. I just don't have the influence of an outside employer adding to the burden.
How we choose to handle those emotional struggles is what sets the example. We are, each one of us, a single choice away from finding the path to our own happiness. Whether that means changing jobs, remodeling a kitchen, meeting a new friend, doing something for ourselves (like running, starting a blog), etc. It's recognizing that there are ways to bring joy into our lives and we are responsible for it, not other people. When we find that happiness we can then give our best selves to those we love.
In Today's Quotes this morning was the following:
"The greatest gift you can ever give another person is your own happiness."
- Esther Abraham-Hicks, an American inspirational speaker and best-selling author.
This is so often forgotten. I think there are times when we think our happiness is dependent upon others. We allow others to influence our happiness, but ultimately we are responsible for it.
My son, F, during some of his most isolated times still found happiness. When he was stuck in the education system with individuals that could not communicate with him along with being isolated he would sleep. There were times when he was awake that he was very joyful. Those were the moments everyone remembered. He had other reasons for sleeping during his day like boredom, fear, and stress, but when he had those moments that he could seize to be joyful he did.
My husband has had a tough few years due to stress at work and personal struggles. I think trying to find his own happiness has been a part as well.When we are struggling we influence those around us emotionally and not usually in a positive manner. I can see the influence I have when I'm not feeling my happiest and I'm struggling to find joy. I understand what he goes through. I just don't have the influence of an outside employer adding to the burden.
How we choose to handle those emotional struggles is what sets the example. We are, each one of us, a single choice away from finding the path to our own happiness. Whether that means changing jobs, remodeling a kitchen, meeting a new friend, doing something for ourselves (like running, starting a blog), etc. It's recognizing that there are ways to bring joy into our lives and we are responsible for it, not other people. When we find that happiness we can then give our best selves to those we love.
Sunday, February 12, 2012
Parents of Children with Special Needs
Sometime ago when I was really struggling and blue, I was given a kind gesture by a friend. It was a grief workbook/journal. I realize that this friend has the best of intentions, and unlike most people, she acted on them. It is really a rare occasion when a friend reaches out to me. I'm sure it's just plain awkward for people. They don't and can't relate; therefore, it's hard for them to even begin to think of what they could say or do. So doing nothing is the easiest choice. Well this friend did something. She brought this grief workbook to me. I flipped through the book. It's quite a workbook. Covers all the stages of grief that a person goes through. To this day it sits on the shelf and hasn't been cracked since the day she delivered it. I never intend to crack it. I DISLIKE workbooks. I don't care to ever read another book on grief. That was so 14 years ago. But the point is she did something, but didn't know what to do.
I don't really struggle with grief. Grief rears it's ugly head periodically through my life. It wreaks havoc and leaves. It's a rolling hill up and down. That's how grief is. I no longer grieve over the lost hopes and dreams I had for my son. To do so would be a disservice to him. He is who he is. I love him just as he is. I can honestly say I wouldn't change him if I had the power to do so. He has helped shape me into who I am. He has changed my perspective on so many things. I wish I could change the things that bother him about himself, for him, not me... make sense?
What I struggle with is being overwhelmed. Overwhelmed by his care. Overwhelmed by the fact that there are times when leaving the house and buying groceries is a monumental task. Overwhelmed trying to keep up with all of his needs educationally and medically. I am overwhelmed by the isolation. I'm overwhelmed by the juggling of duties. I'm overwhelmed that I can't maintain friendships very easily. I am overwhelmed by the fact the stress could take years off my life. I'm overwhelmed that I'm having bad hair, because I can't get time in my schedule to get to the hairdresser. I am overwhelmed by the strain it puts on my marriage, because it's hard for his dad to live this secluded life. Yet, my friend thought I was overwhelmed with loss. She couldn't be farther from the target. I'm just stressed and overwhelmed. So in the process of trying to help her understand I did a little research. I came across these websites and articles about raising a special needs child. They were quite enlightening.
I have copied and pasted them just as I sent them to her in an email. I think there was some part of each one that captured a piece of my struggle. I hope there may be a piece that could help someone else educate about their struggles raising a special needs child.
http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html
http://psychcentral.com/news/2009/02/19/parental-stress-with-special-needs-children/4219.html
http://www-e.openu.ac.il/geninfor/openletter/ol17/12-14.pdf
http://www.post-gazette.com/pg/07129/784323-114.stm
http://www.webmd.com/balance/stress-management/caregiver-advice-cope
http://www.and-so-i-write.com/2010/07/do-parents-of-special-needs-kids-invoke-self-isolation/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403651/?page=3
http://severedisabilitykid.blogspot.com/2011/01/dear-new-parent.html – I love this... My favorite lines are “And no matter which choice you make, someone will tell you that you are wrong.Then you will lose many friends, and some family.”
If that last one couldn't be more true. I've had friends tell me I'm wrong. I'm wrong for how I handle situations. Wrong for how I handle my stress. Wrong for not putting myself out there so that others will be more open to helping me. It all comes down to the fact that the burden falls on me to make it easier for other people. Well guess what? I'M TIRED!!!
I don't really struggle with grief. Grief rears it's ugly head periodically through my life. It wreaks havoc and leaves. It's a rolling hill up and down. That's how grief is. I no longer grieve over the lost hopes and dreams I had for my son. To do so would be a disservice to him. He is who he is. I love him just as he is. I can honestly say I wouldn't change him if I had the power to do so. He has helped shape me into who I am. He has changed my perspective on so many things. I wish I could change the things that bother him about himself, for him, not me... make sense?
What I struggle with is being overwhelmed. Overwhelmed by his care. Overwhelmed by the fact that there are times when leaving the house and buying groceries is a monumental task. Overwhelmed trying to keep up with all of his needs educationally and medically. I am overwhelmed by the isolation. I'm overwhelmed by the juggling of duties. I'm overwhelmed that I can't maintain friendships very easily. I am overwhelmed by the fact the stress could take years off my life. I'm overwhelmed that I'm having bad hair, because I can't get time in my schedule to get to the hairdresser. I am overwhelmed by the strain it puts on my marriage, because it's hard for his dad to live this secluded life. Yet, my friend thought I was overwhelmed with loss. She couldn't be farther from the target. I'm just stressed and overwhelmed. So in the process of trying to help her understand I did a little research. I came across these websites and articles about raising a special needs child. They were quite enlightening.
I have copied and pasted them just as I sent them to her in an email. I think there was some part of each one that captured a piece of my struggle. I hope there may be a piece that could help someone else educate about their struggles raising a special needs child.
http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html
http://psychcentral.com/news/2009/02/19/parental-stress-with-special-needs-children/4219.html
http://www-e.openu.ac.il/geninfor/openletter/ol17/12-14.pdf
http://www.post-gazette.com/pg/07129/784323-114.stm
http://www.webmd.com/balance/stress-management/caregiver-advice-cope
http://www.and-so-i-write.com/2010/07/do-parents-of-special-needs-kids-invoke-self-isolation/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403651/?page=3
http://severedisabilitykid.blogspot.com/2011/01/dear-new-parent.html – I love this... My favorite lines are “And no matter which choice you make, someone will tell you that you are wrong.Then you will lose many friends, and some family.”
If that last one couldn't be more true. I've had friends tell me I'm wrong. I'm wrong for how I handle situations. Wrong for how I handle my stress. Wrong for not putting myself out there so that others will be more open to helping me. It all comes down to the fact that the burden falls on me to make it easier for other people. Well guess what? I'M TIRED!!!
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