When you can't speak...You can't tell

I came across this article yesterday on Yahoo.  I'm sure many of you did, if you didn't, the link is below.  

http://www.hnva.net/teacherbully/#caught

I'm wondering how many people were shocked and appalled? It saddens me to say that I was not shocked by one thing that was brought forward by this article and Mr. Chaifetz's video.

I have my own stories about the education system and the treatment of my son. Not all of my son's experiences in the special education system were positive.  If they were he wouldn't be finishing out his high school years at home with me.  If I'd more clearly understood the process maybe I would have done things differently or him. I don't mean the IEP process. I mean the process at which IEP team members work together to point the finger at my child for his failure to progress with their assigned goals. I will say that I didn't feel  that educating my son was of interest to many of the educators who participated on his IEP team.  I can count on one hand the number of individuals who actually believed in my son's potential and wanted him to be his best.  He had been in the education system from the time he was four years old until he was placed at home for health reasons at the age of fifteen.  

When my son was seven, the district assigned him a new health aid.  They reassigned the the aid that was with him by saying she really wasn't qualified to meet his health needs.  She was attentive to detail and she cared about my son.  The new aid talked negatively in front of my son about me and his health needs.  She continually remarked to our part-time nurse, who went to school with him, that I was over-protective and she didn't need help transferring  him.  She was overly confident and disregarded many, if not all of my concerns, regarding the care she provided my son during his school day. My internal bells and whistles begin going off.  Between the nurse's reports and my gut feeling I was beginning to worry.  Yet, I didn't have enough sense to call an IEP.  I was stupid.  

Fast forward to a phone call I get from the aide.  She said something happened to F's leg while she was moving him.  She thinks his hip popped out of socket (since his hips are dislocated).  I immediately go to the school I transfer him out of his chair.  He's shrieking in agony and pain.  I discover his left thigh is so swollen.  I contact the doctor's office.  They send me with him immediately to the ER.  Upon evaluation we are told his femur is FRACTURED!.  He's in so much pain.  They medicate him and send him to x-ray.  What I see on that x-ray makes me sick to my stomach.  Not only is his femur fractured it's broken into two pieces sitting side by side.  It was like a horror movie x-ray to me. The doctor's cannot set his femur due to the cerebral palsy.  They give us scripts for pain meds.  Tell us to move him every hour .  They give us a foam pad and a strap to stabilize his leg to cut down on it's movement.  He's at risk for blood clots, pneumonia, and skin break down.  My heart is broken, so is my husband's.  We are FURIOUS!!!

To this day I often think about this injury and what that was like for him.  Unable to speak to get the aide's attention.  Although, I have my doubts that she would have noticed anything that he said if he could speak. When I do think of it I feel sick and emotional. F and I do not talk about this accident.  I can't even imagine what this nightmare must have been like. His communication skills are improved enough that we could likely isolate what occurred, but I don't. Some things are just better being left unknown. 

In a nutshell, we never find out what really happened to F's leg.  We suspect that when the aide had him in a stander she forgot to unstrap either his knee or ankle, possibly both, and moved him alone.  Pulling on him with such force to remove him from the equipment that she snapped the largest bone in his body.  My son suffered physically and emotionally from this experience.  He's unable to speak and he was terrified of new nurses of returning to school, of being transferred to and from equipment.  It felt like an eternity for him to recover emotionally enough to return to his full-inclusion class.  

The aide still has her job.  My son encountered this aide above five years later in a summer program.  He showed up at school, heard her voice and become emotionally hysterical.  His current aide at the time called me to tell me he was crying uncontrollable and she'd never seen him this way.  She couldn't calm him down.  I went to pick him up walked in the class saw the aide who broke his leg and knew what he was upset about.  I called the supervisor and you know what her attitude was?  It's been long enough it's time for us to get over it.  REALLY?  Your going to tell a child who was severely injured and traumatized that it's been long enough get over it?  

And yet I continued to send my son to school year after year... until I got smart. I look back now on my son's emotional state through his last years in a special day class for the severely disabled.  He was withdrawn, depressed, emotional.  I can't help but wonder what happened in that classroom.  I will never know.  It's taken a good two years of being at home working with individuals who treat him with love, respect and dignity, as all human beings should be treated, for him to return to us.  

F said Bye... with his voice!

This young man is really piling on the vocal milestones lately.  A couple of weeks ago, while I was out running the dogs, he and Caroline were out for a walk.  He said "mom" really loud.  She looked up and saw me coming towards them.  I couldn't believe that he could see me from that distance since he is considered legally blind with no functional vision.  However, his vision impairment is the type that familiar is what he does see.  He walks the same path on their walks and he knows what I look like.  It's not unrealistic for him to have seen me.  But to say "mom" was so surprising.  Caroline said it was clear as day.

Today when Mary, his paraeducator, was leaving at the end of lessons he said "Bye" with his voice.  Not his Maestro, with his voice!  We are going on over a year of intense speech therapy and he is starting to say words!  Of course, I always miss  hearing them.  F hates to do anything that would impress me in front of others.  I'm good with that.  Let him have his independence.  He and I have been joined at the hip for way too many years with me hovering and doting on him... speaking for him.  I'm happy to be in the background.  I'm happy to hear others tell me about his progress.

You go son!  I'm cheering for you to be all that you can be, without my help!!

All this progress just stirs up so many conflicting emotions that I cannot even begin to speak about without welling up into tears.  Emotions such as elation, joy, pride, love, etc. Words come into mind such as deprived, cheated, denied, mislabeled, discrimination, unteachable, unmotivated, ... that stir other types of emotions.  I must over-ride those negative emotions with the positive ones and forget about the past.. but sometimes it just so hard not to think about those "what if's."

Being married is hard…Even harder with special needs child

Being married is hard. It's a life of compromise and acceptance. As couples grow together they change and grow as individuals from the life they experience together. There can be stresses of money, bills, parenting, schedules, work, just making time for one another, and the normal duties around the home. These "normal" marital circumstances have been the cause of more than one divorce.

From where I stand looking at the world around me, it seems that couples manage to keep things together and happy by investing in their relationship.  They have common ground in their likes and interests.  They plan for their families together.  They spend time together doing things away from their kids.  Many couples have date nights and weekends away.  I think it helps keep them close.

Our family has division.  It's a divide and conquer process.  There are no date nights.  There are no weekends away together.  There are nights that we divide our time between one child or another covering each child's activities.  There are weekends away with the one child who travels for trips or swim meets etc.  There is no bonding couple time.  There is no working on our relationship.  There is no us time.  There is division.

I'm not really sure how we've managed to coexist and keep our family intact.  I think that the two of us still enjoy each other's company, although we have grown into two very different people than who we were when we entered this relationship.  I'd say how we've grown, and who we've become, has a lot to do with how each of us has dealt with the circumstances  which we've been given.  I know normal married couples grow and change as they grow old and raise a family together and sometimes finding their common ground is challenging too,  this is not unique to my marriage.  What is unique to my marriage is all the unspoken stuff.

When I say unspoken stuff I mean, how we cope with the turmoil of emotions that surround the loss of our daughter and the challenges and struggles brought into our lives by our son's disabilities.  The emotional baggage and heartache that comes with those two things.  I think we've both made the best of it through the years, but there is so much that we don't speak about.  Each of us copes very differently based on our personalities and who we've grown into as adults.  They do not mesh for more than a moment hear or there.  At times, it's almost too painful to speak of.  Other times each of us are in two different places that don't mesh.  There is anger and resentment at times.  There's resolve to make the most of what we have.  There is just being plain grateful to have life and experiences.  But they rarely, if ever, come at the same time. That husband of mine is the only person who knows what I've lost along this journey and how painful it has been and the price each of us has paid.  There is no explanation necessary for random tears.  I think at times the random anger is mistaken as being directed at the other... but that can be due to what is mistaken for normal marital stress and discord.

It's like the continental divide in my home the majority of the time.  So much unsaid business... the good and the bad.  Yet it is our common ground.  Now throw all that other regular marriage baggage on top of it and you've got a recipe for disaster.  Yet here we are 25 years later still plugging along... but we've reached a place in that divide where the gap needs to close and it seems almost impossible.

Anger... it happens on occasion

F and I had a moment this week one we'd never had before.   One morning, F coughed significantly after his shower bringing up a lot of phlegm.  I didn't have suction or a toothette.  I told F I'd swipe his mouth out, but please try not to bite me.  I have never risked sticking my finger in his mouth, because he reflexively would bite on anything in his mouth.  On this day I cleared his mouth and he did not bite me, a first!  We talked about what it felt like compared to a toothbrush or toothette.  I even put his two fingers that could reach his mouth in.. and yes in the past he'd bite down on his own fingers.  It was a new thing for him and he was intrigued.

During my run yesterday, I was thinking about F and his new milestone.  I was thinking about how much he's  benefited from speech services.  Twice a week he's been working on speech for over a year now.  His face muscles have strengthened.  He rarely, if ever, drools anymore. He's making new sounds "mmm" and "nnn." He says "yeah" more when I talk with him.  How I wish in my heart of hearts that I had known what he needed.  That I had followed my intuition and worked harder to gain knowledge about the school system.  If I'd only payed more attention.  When I think of this I am overwhelmed with the huge regret that washes over me... I feel angry.

I'm angry that my son has missed out on a chunk of his life that he could have worked hard and made progress if he'd had access to what he needed.  Angry that I didn't know how to get him those services.  Angry that I believed the picture that was painted of his future and all that it WOULD NOT be.  Angry that I listened to someone, who had initials after their last name that I didn't have, and believed they knew better about my son than I.  Angry that he has to work harder than he might have had to work when he was younger.  Angry that perhaps he may have learned to speak a few words with intensive speech that could be understood by more individuals than just his family.  Angry at myself.

Then I have to let it all just wash away.  Otherwise it will eat at my heart and impede my ability to move forward and F deserves so much more than a bitter angry mother.

My son the hopeless romantic?

Yesterday, I learned something about F. Perhaps I've always known, but just didn't put a lot of stock into the thought.  My son is hopeless romantic I was informed by Mary, his new paraeducator.

"What?" I say.

Mary, "Yes, he is indeed.  I realized that when we read The Hunger Games together during the Peeta and Katniss parts."

A hopeless romantic... who knew.  So I ask F,  "Is that why you wanted The Time Traveler's Wife?"

He replied "yes." (I thought he was just being kind and polite to his sister sharing her interests.)

Me, "So that means that you really do want to see and read that horrible Twilight series... not because you want to make fun of how big Edward's head is, but because your a hopeless romantic???"

He replied, "yes" vocally and with his head turn.

He finds my shock and awe reaction completely funny. My head is spinning... really?  Twilight?  I think I'll throw up.  I am not a hopeless romantic.  The thought of listening to that entire Twilight series book/or movie is a tortuous thought. Of course, I would do it for him, but he knows it comes at a price of me making fun of it the whole time.  I'd do almost anything for this boy.  The first novel was BORING and the only entertaining part about the movie was comparing Edward's giant head to everyone else's.  I love a good tragedy with lots of suffering and agony, yet both of my children love a great love story.

This enlightening news brings me back our reality. My son will never marry or have children. He likes the pretty ladies.  He's always had a way with them.  Men and boys really have never had a lot to do with him with the exception of a few.  F is a guy through and through. He loves sports and loves anyone to sit and talk sports with him.  He loves a great action flick and just about anything with fighting and a weapon.  But this hopeless romantic piece tells me his heart may yearn for companionship in a way that he may never receive.  It saddens me so deeply.  I realize if I could enlarge his world and the people that he meets, perhaps I may be wrong... I just don't want to get our hopes up.  People can be so disappointing.

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.

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!!!

Introduction

It starts with the title. I've been given a lot of lemons. There are times when I feel a whole truck load has been dropped off at my house. I've had to make a lot of lemonade. I feel like I am constantly making the best of things.  Porcupine because advocating for my son has resulted in me becoming outright prickly to get things accomplished. Professionals talk a good talk. If I am not careful I can head down a path that I don't want to be on. It can be distracting from my goal. It becomes a matter of focus.

I'm in my early 40's. I have two children.  I have had three.  I've been married to my husband for 25 years.  Although my husband and I have stayed married our relationship, for many, many reasons has been up and down and very rocky.  At times, I'll admit almost at complete meltdown almost beyond repair.  We've lived apart for periods of time throughout our relationship, but have managed many times to pull it together.  We have had more than our fair share of heartbreak, heartache, and tragedy together and it hasn't always made us stronger... but we are working on it.  

In 1993, our first child was born healthy and suffered an illness shortly after birth.  This illness forever changed the course of our lives.  Our son F, had encephalitis as a newborn resulting in severe brain damage and disabilities. In 1995, our second child, Cienna, was born healthy and shortly after her birth, three weeks to be exact, she was diagnosed with bilateral retinoblastoma.  A rare children's cancer of the eye.  She would only live to the age of three years and eighteen days.   

Losing Cienna to cancer was and still is my greatest tragedy.  I think I can speak for my son and husband and say it was for them as well.  Cienna was our joy.  She helped put F's disabilities into perspective.  Losing her caused all three of us to lose a part of ourselves.  It would be a long time before we stopped just going through the motions of life. 

Then after two years of grief, we stepped back into living again.  It began on February 22, 2000, when our daughter, C, was born.  From the very first day she came into our lives she was a ball of energy, vibrant, and full of life... and HEALTHY! LIfe has been a whirlwind journey ever since.