I can't believe it! My boy is celebrating his 19th birthday today. Never in my wildest dreams did I ever think we may see this milestone. I know that sounds terrible, but the ugly reality is that many kids with the health problems that he has (primarily the asthma and restricted lung capacity) survive into adulthood. I feel so lucky!
I can't even imagine how F feels. I often wonder if he has ever thought about his own life span or mortality or if he has felt that he was close to dying. I just have never had the courage to ask him. I've asked him before if he's angry about his disabilities. He has replied yes on some occasions and no on others. I would imagine like me it's a mixed thing. He only knows this life. He cannot miss what he's never really had. I know there was a time when he was VERY angry at the district for not providing him valuable services. I know at times he gets frustrated because he can never catch up he's so behind and it's harder now as an adult to make progress. I think he's done a fabulous job of making the best of everything he's been dealt.
Today I am grateful to say that I am blessed to have F in my life for these years. Thankful, for all he has taught me. My life is so much richer because of all that he brings to it.
Happy birthday, F! I can't wait to celebrate your 20th next year. I hope your day will be as special as you are. I love you to the moon and back!
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Tuesday, April 3, 2012
Friday, February 17, 2012
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.
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!
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!!!
Monday, February 6, 2012
What's Wrong with Him?
My son, F, will be 19 years old this April. F has cerebral palsy. He is described as a spastic quad. He sits in a wheelchair that requires a lot of space to accommodate. It's not one of your basic run-of- the-mill chairs that you can get from any medical supply place. It's a Quickie Iris. His chair tilts so he can comfortably look at the world from a reclined position as needed. He's got head switches attached to his head rest for his fancy future communication device. He has a custom molded seat to accommodate his scoliosis. He has footrests and ankle straps to hold those legs down so he can't wiggle forward. It has all the bells and whistles my spastic quad boy could desire. Except a motor and a way for him to control it, because not one person in his life ever thought he'd be capable to maneuver himself. I myself am still hopeful that he may get the chance and I think he is too.
F has cortical vision impairment. Which in a nutshell means the vision center of his brain does not work to interpret what his eyes see. So he has difficulty seeing in a new environment. His visual field gets cluttered when there are too many things in it. High contrast can be helpful with bright colors. He also needs visual consistency. He needs things to stay the same for him to recognize them. He is considered legally blind. He doesn't visually track well and objects get lost when he tries to follow them. But what he can do with his eyes is move them from left to right and right to left to assist us with his "yes and no" answers. He can with those beautiful green eyes look right into my eyes and I know he's looking right at me. I am thankful for his eye contact and that he can recognize our faces.
F cannot speak, but he has a lot to say. He has a thought and an opinion on just about everything. This is where I get frustrated with people. They seem to think that because he sits in a wheelchair and he cannot speak that he automatically has a low IQ and is deaf. This is false. He's a great listener and if you talk to him normally he might actually pay attention to you. He can tell if your genuine and care about interacting with him. If you turn up the volume and talk slowly you are not likely to win his friendship. F knows about a lot of things and he can communicate. You just have to know how to communicate with him. He answers yes and no with a head turn or an eye gaze. Right being yes and left being no. He has head switches that hook to a computer that has preformed statements that he can control to engage in a limited conversation. He has a low tech method of a flip book on his iPhone and iPad which is a layer of options that is specifically to assist the user in engage in a more layered conversation. He has to teach people all the time how to communicate with him and a lot of people just can't get it. It's not his fault if your not smart enough to catch on so don't blame him.
F is funny. He has the greatest sense of humor of anyone I know. He's sarcastic and will make fun of you, which I love. He's always teaching us to just laugh at ourselves. Most people don't get his humor. Usually most people just think he's happy because he's got that "look" that leads them to believe that there is really nothing intellectual going on upstairs. But those close to him we know and we get it. We will talk and laugh about it later! He loves books, music, history, science, he is a eager for knowledge. He has memory and recall too. For some reason when he used to go to school they didn't think he was teachable or that he remembered things. Of course, they had no really reason as to why they believed this to be so other than he has that "look" that people associate with very low intelligence.
F has no independent skills and relies on others for assistance with all of his daily needs. He has more patience than anyone I know. He has to trust in others to do some of the most important and personal things for him. He RARELY complains. When he does complain it's usually because he's uncomfortable or very fatigued. That's when he can crack the whip and get demanding. He's entitled to do so as far as I'm concerned.
F has health issues. He has chronic respiratory issues along with an asthma component that exacerbates things. The asthma thing always throws a twist on things since it causes sensitivity to odors, perfumes, air quality, the wind, etc. He has seizures which are uncontrolled by medication. He also has some GI issues as well. I have to say that these things have improved due to his new diet. He's on a very strict modified Atkins diet. He was too old to try the Ketogenic diet. This diet has improved so many of his health issues. He's more healthy and stable now than he has in a long time. His seizures have really improved. He's been feeling really good since starting the diet. He may even begin having his medications reduced for the first time in YEARS!!!
That's my son in a summary. We know from experience that the first thing people want to know about him is "what's wrong with him?" We don't think there is anything "wrong" with him. He isn't perfectly healthy or perfectly abled, but he's perfectly F.
F has cortical vision impairment. Which in a nutshell means the vision center of his brain does not work to interpret what his eyes see. So he has difficulty seeing in a new environment. His visual field gets cluttered when there are too many things in it. High contrast can be helpful with bright colors. He also needs visual consistency. He needs things to stay the same for him to recognize them. He is considered legally blind. He doesn't visually track well and objects get lost when he tries to follow them. But what he can do with his eyes is move them from left to right and right to left to assist us with his "yes and no" answers. He can with those beautiful green eyes look right into my eyes and I know he's looking right at me. I am thankful for his eye contact and that he can recognize our faces.
F cannot speak, but he has a lot to say. He has a thought and an opinion on just about everything. This is where I get frustrated with people. They seem to think that because he sits in a wheelchair and he cannot speak that he automatically has a low IQ and is deaf. This is false. He's a great listener and if you talk to him normally he might actually pay attention to you. He can tell if your genuine and care about interacting with him. If you turn up the volume and talk slowly you are not likely to win his friendship. F knows about a lot of things and he can communicate. You just have to know how to communicate with him. He answers yes and no with a head turn or an eye gaze. Right being yes and left being no. He has head switches that hook to a computer that has preformed statements that he can control to engage in a limited conversation. He has a low tech method of a flip book on his iPhone and iPad which is a layer of options that is specifically to assist the user in engage in a more layered conversation. He has to teach people all the time how to communicate with him and a lot of people just can't get it. It's not his fault if your not smart enough to catch on so don't blame him.
F is funny. He has the greatest sense of humor of anyone I know. He's sarcastic and will make fun of you, which I love. He's always teaching us to just laugh at ourselves. Most people don't get his humor. Usually most people just think he's happy because he's got that "look" that leads them to believe that there is really nothing intellectual going on upstairs. But those close to him we know and we get it. We will talk and laugh about it later! He loves books, music, history, science, he is a eager for knowledge. He has memory and recall too. For some reason when he used to go to school they didn't think he was teachable or that he remembered things. Of course, they had no really reason as to why they believed this to be so other than he has that "look" that people associate with very low intelligence.
F has no independent skills and relies on others for assistance with all of his daily needs. He has more patience than anyone I know. He has to trust in others to do some of the most important and personal things for him. He RARELY complains. When he does complain it's usually because he's uncomfortable or very fatigued. That's when he can crack the whip and get demanding. He's entitled to do so as far as I'm concerned.
F has health issues. He has chronic respiratory issues along with an asthma component that exacerbates things. The asthma thing always throws a twist on things since it causes sensitivity to odors, perfumes, air quality, the wind, etc. He has seizures which are uncontrolled by medication. He also has some GI issues as well. I have to say that these things have improved due to his new diet. He's on a very strict modified Atkins diet. He was too old to try the Ketogenic diet. This diet has improved so many of his health issues. He's more healthy and stable now than he has in a long time. His seizures have really improved. He's been feeling really good since starting the diet. He may even begin having his medications reduced for the first time in YEARS!!!
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