Ryan

We are knee deep in school and this year is a huge transition for our family.  I have more then half my kids in school and I feel lopsided when I leave the house Monday through Friday.  It just seems strange not to have my helper Ryan by my side.  Sitting by the fire friday night with some friends, one said to me, “Katie you have such a bigger story you are not sharing.”  I thought to myself, true…..I do.  Just like everyone else there are layers to my children and I that I have not shared.

 

Since school started I knew I wanted to write a post about my son Ryan because he is my success story.  Ryan 2 years ago could not answer how old he was.  Often cases he would not answer a question at all.  He could not sit in a chair and concentrate when a teacher read a book.  When I laid with him at night to put him to bed he would talk and I would listen…. he was not talking to me…..  He was talking to the characters in his head.  As I listened closely I could here the games and movies that he loved so much being played out by him as he was trying to go to sleep .  Weird right?  Not weird enough for me to make a change unfortunately.

 

Ryan also had a constant smell of vomit on his breath.  He would cry every night in pain because of his reflux.  I asked every week or so as I dropped him off at preschool how he was doing because I knew…..  I knew something wasn’t right.  The teacher always smiled and said he was a good boy and he was doing just fine.  The end of the year came and we got a call from the school.  My husband went to the meeting and we were told that we might want to have Ryan evaluated.  I was devastated…..  I asked multiple times how he was doing and never did anyone tell me he was a problem.  I knew though…..  I knew something was wrong.  I was waiting for someone to tell me what to do.

I took Ryan to the Kindergarten Screening to have him evaluated.  He had trouble in an area or two but they felt he was within his age group.  I still knew….there was no way Ryan was going to succeed in school.  I started searching…..grasping really for anything.  I needed a pill or a cure and I needed it quick.  I was scared and for the first time in my life I had to make decisions.  I had to make big decisions that I believed in, because honestly everyone else thought I was out of my mind.   Through my friend Steve I heard about Gluten and so I tried it.  The vomiting STOPPED!  He no longer had vomit on his breath.  His eyes began to open and I no longer saw the haze that constantly covered them.  We then took away Dairy and he was a new kid.

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I went the next step and had him evaluated by National Association for Child Development.  They give me a quarterly program for my daughter and I knew they could tell me what was wrong with my son.  I took Ryan to meet Ellen our Developmental Therapy Evaluator and I watched for 30 mins.  In that time she took my son and was able to break down his deficiencies and provide me with a full background of his problems.  First and for most he is stemming and that needs to stop, she told me.

i came home that afternoon and realized that was all my son was doing.  His form of stemming was a favorite video game and he would play that game in his head 24 hours a day when he was not actually physically playing the game.  He was a great kid, he never was bored or asked me to engage him because he was engaged in his head 95% of the day and he was happy.  Very Very happy.  I had no idea!  I was beyond devastated and over whelmed.

Well that day life changed and it changed fast.  He was no longer allowed to be involved  in that behavior. I had to follow him around the house, the backyard, the basement and  keep him out of that place.  I had to tell him to stop stemming and I had to remind him that what he was doing was not normal behavior and it was not allowed in our house.  He was MAD.  He was beyond MAD and my house turned into a very frustrating environment….. I was tired and so defeated but Ellen’s words kept running through my head she told me if I did not stop this behavior…if I did not remove everything he memorized from my house he could become so bad and become so far gone into his head that it would be very hard to reach him.  She told me that kids with these problems often don’t speak.  They are so wrapped up in their own self stimulation that they do not need the world around them.

Yep that was my son!  He was sick…..whether you call it Autism, Aspergers, Auditory Processing Disorder, Severe ADD…..he could have been diagnosed with all of them but I chose to believe in NACD.  I chose to trust Ellen and thank God I did because my son, the son who could not play appropriately with friends.  The son who was unable to remember what he was taught from day to day.  The son who would behave so badly in public that I stopped taking him in public.  The son who would line dinosaurs up around the basement and tell you anything and everything you never wanted to know about them is in school!  He is in a typical school with typical children being taught by a typical teacher.  Yep!  We did it.  We still have work to do and he has to maintain an unbelievably hard diet of fresh foods and meat, but after 2 years of homeschooling, word cards, listening therapy, massage and sequencing activities Ryan is in the 1st grade and he loves it.  My son hated school, he hated anything about leaving his house.  He plays with kids and every day he comes home and thanks me for letting him attend his school.

I am writing this because I am proud.  Ryan and I worked hard and we continue to work.  I guess for me it is kind of a reminder of how far we have come.  It was hard, so very very hard.  I remember looking at Ellen with tears in my eyes that day she targeted his problems and I asked if he was going to be OK.  She looked at me and said,  “Everything is fixable Katie, with hard work.”  There were no promises.  She gave me a program and told me to do it and when the progress wasn’t there she changed that program and gave me another.  She knew I was scared and she gave me the encouragement I needed to push on.  I am forever thankful that I have her by my side because she believes in my kids and she taught me how to believe in them as well.

My hope is that Ryans story helps others.  I hope it inspires parents to never stop looking.  There is hope for our children, all of them.  It is not easy, and programs are hard work….but as I tell any mother I talk too the difficulty now is much easier then the difficulty the future will bring.  Ignoring a problem just causes that problem to get worse.  Believe me I was there, living in disbelief and hoping for a miracle.  My miracle came in the form of a baby and her name is Grace.  Because of her…..I became aware and I knew I had to become the expert on all of my children.  I am forever thankful for Grace….she not only saved my life but she saved 2 of her brothers lives as well and because  of her we have Ellen.

Tonight I am so proud of my Ryan.  He has a long way to go…..I mean he is only in 1st grade but in my eyes he has already moved mountains.

I love to hear other success stories.  Please share what worked for your kids!  If you are struggling I would love to hear from you too.  I love to share what worked for us in hopes that it might help you.  Please write me a note or leave a comment!  I really think there is strength in numbers….if I had not reached out to others I would not be where we are today , a work in progress!

Happy Monday!  It is gonna be a good one.  I can feel it!

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About Kathryn

I am a mom of 6, 5 boys and 1 beautiful girl. We live life to the fullest, as best we can! Some days are good and some are bad but we push through and some how have a smile on our face at the end of the day! We have a little bit of this and a little bit of that in our family including Down Syndrome and Gluten Intolerance.

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