Another Piece of the Puzzle

I remember a year ago being at our local library.  Gavin was overstimulated and although I sat him down with a book he would run around the stacks making loud train noises.  I was doing homework (finding books on Cinderella's around the world) and my husband was at work.  I had no where to leave him so I tried my hardest to go fast - but my fastest wasn't fast enough.  A young woman came over and started to angrily tell me that my son was interrupting their study session and could I keep him quiet.  I told her I was doing my best and that I needed to do school work too.  She got angrier and demanded that I leave.  I told her that I had a right to be at the library and if she wanted me to leave the Librarian would have to be the one to ask me to leave.  She said, "okay" and went to the Librarian - at which point the Librarian came over and told me that several people had complained about my son.  I told her that I was doing my best, asked if I was being thrown out.  She told me "no" but that I needed to control my child.  I began to cry at this point and said that until they had a secluded area for children then they would have to deal with small children making noise.  I wanted to throw my library card in her face as I left, but I held onto my dignity (just barely) and walked out.  A few days later after calming myself down and getting some great advice I went back to the library and firmly told the Librarian that my child has special needs, and that he has every right to be at the library as any one else.  Since then each time I am at the library my gut twists when I see that particular librarian.  I do my best to keep Gavin quiet and find myself rushing to find what we are looking for.  They recently added a literacy center, and I want to stay longer but I find myself afraid of the noise they make.  Gavin had a meltdown this past week when we were there.  He was tired, overstimulated, dealing with strangers (two little girls joined the table to play an ABC game) and wanting to go where he wanted to on the game board.  I picked up my screaming son and took him outside.  He took about fifteen minutes to calm down, but when we went back in he was able to pick out a book and quietly sit down.  

I wish I could say that experiences like these don't happen often - unfortunately they do!  For the longest time I wondered if it was poor parenting on my part.  Why can't my son sit still?  Why does he have to touch every single item on the grocery isle?  Why does he flip out when his schedule changes?  Why doesn't he talk and act like the other kids his age?  It wasn't until he was in preschool and his teachers called me in for a special meeting to ask permission to begin testing him for an IEP.  They recommenced that I take him to a neurologist and a geneticist and a psychologist.  I was a bit surprised.  His pediatricians never said anything when I complained about his lack of development.  With the school backing me the doctor seemed to listen and we heard for the first time the word "Autism".  The doctor said he couldn't give a definitive diagnosis, but he was pretty sure that Gavin fell within the Pervasive Developmental Disorder range of ASD.  I remember my stomach falling out. 

From that point on we started the never ending trips to the doctor.  I remember having a conversation with one of my sisters and saying that I just wanted to find out what was wrong with my son.  She became a bit defensive and said "Genevieve, there is nothing wrong with your son, he just learns outside the box".  I took that statement to heart.  He does learn outside of the box - but at the same time there IS something wrong with my child.  I have felt defensive when family and friends have asked why I was going through all of this testing.  Why was it so important that I get a "Label" for him?  "There is nothing wrong with him, he is just unique."  I wish they could live in my shoes for about a week and then ask me why.  No, I don't WANT there to be something wrong with my child.  NO, I'm not looking for things to be wrong with him.  I just want to figure him out.  Find out how he ticks.  Find out how I can be a better mother for him.  Help him succeed. 

I discovered another piece to the puzzle that is Gavin about a week ago.   I'm not sure when the first time I came across the term Sensory Processing Issues (I'm sure it was after reading blogs about kids with PDD-NOS), but I know that as I watched my son grow I often wondered if there was any such term.  I remember how he would howl and lift his little legs the first time he went out into the snow. Up until last year he would hop from one bare spot to another to avoid the snow!  He has certain clothes he won't wear because he associates them to hair cuts.  He has many other quirky little things - that I could write for hours about.  Most of them make me smile - like how he loves trains.  I know that if we are going to the library we will leave with a book about trains (even if we have read it a million times already).  When we are at the store he turns into a little engine, moves his hands like the wheels, makes the whistle noise and follows the tiles in a straight line.  He doesn't stop for anyone.  Most of the time he gets those indulgent smiles from people, but other times I find myself defensive.  About a month ago I brought it up to his Occupational Therapist at school.  She had me fill out this huge questionnaire and had his teacher fill it out as well.  Last week during a meeting to see if he would qualify for an IEP during Kindergarten they mentioned that it did appear that he has SPD.  I think I need to get his OT to get that down in writing, and I want to talk to her about what we can do at home for him that we aren't already. 

Another piece of the puzzle - We now have a diagnosis of Pervasive Developmental Disorder - Not otherwise Specified, ADD/ADHD, and now Sensory Processing Disorder.  Why is it so important to have these diagnosis?  I'll go into that more in-depth in my next post!!!!