My Story-laughter and worry
I have three children. My youngest has been recently diagnosed with PDD-NOS, which as I understand it means he is autistic, but not autistic enough for the other 'labels'. This post deals only with the landmarks of getting a diagnosis.
I started seeking answers, when my son was just over three years of age. He was nonverbal, obsessed with trains, somewhat antisocial (except, interestingly enough with his sister whom is one year older than he) and displayed some unique personality traits.
In hindsight I see how I phrased my concerns incorrectly for the professionals I dealt with. I can also see how, unless you spend a great deal of time with him, you would not see what I was seeing. He is high functioning (I resent that term, btw, as it implies that those with stronger markers on the spectrum are at the bottom of some scale).
My doctor explained that some boys develop some skills slower, that as the youngest he may not feel the need to communicate (two siblings to pander to him and ask for him). He also told me (as if it would be NEW information to me) that each child grows at his/her own rate.
Discouraged, doubting myself and eating the 'I told you so"s I stopped chasing answers from the professionals. Instead I spent more and more energy working on one skill at a time.
I targeted one thing at a time, literally. And I worked on that one thing until I saw improvement. Then I picked another.
One of my favorite moments in parenting him as a pre-schooler is potty training.
My son would not potty train. He could care less if he was wet. He was too busy with his trains to bother with it. Encouragement did not reach him, sticker charts were ignored. I even resorted to bribery! I scoured the library and the Internet for tips on potty training. (Keep in mind, I am the oldest of four children, this child is the youngest of three children-it is not like I did not have any experience myself yet nothing worked.)
Then I discovered something amazing. Printable Iron On's! I created page after page of Thomas the Tank Engine iron ons. I then ironed them onto EVERY pair of underwear he owned. I also made a wonderful T-shirt with Thomas the tank going into a tunnel on the front, and coming out of the tunnel on the back.
I pointed out to my seemingly uninterested child that Thomas was on his underwear. I showed him the Shirt. I told him that if he learned to use the toilet I would GIVE him the shirt. I also told him (smiling) that Thomas did not like to get wet. I showed him the toilet and the seat for kids. I told him he could come get me and I would help him set up the toilet.
The whole time he was doing that blank look. He did not respond in anyway. Disheartened I left him at his train table and threw on the laundry.
I was still sorting out socks from the dryer when I hear the toilet flush. Surprised (the other children were at school and pre-school, so we were alone) I went to investigate.
My son was standing in the bathroom, pants off, underwear in his hand, feeling his underwear carefully. (I think he was making sure Thomas was dry!). He looked at me and held out his hand. (he would hold out his hand if he wanted something) I cheered "Yeah! you did it!!! awesome job!!" He grunted at me and held out his hand again.
I asked if he wanted a treat, he started to fidget (Usually, for him, a sign of being agitated. Fidgeting preceded many a meltdown) A drink? A snack? A Hug? (more fidgeting). He stomped over to where I had put the shirt, stared at it, then looked RIGHT at ME and held out his hand.
I was floored. I gave him the shirt, helped him to put it on (and his underpants and pants). He wandered off to play with his trains and left me standing there. It was the FIRST time he had demonstrated that he understood when I babbled at him. It was the first time I realized that it wasn't about what he 'could not' do, but more about what he 'could be motivated' to do. I cried. I giggled. It was one of those wow moments.
(At nearly 11 years of age he still wets his bed quite regularly. But he has not had an 'accident' during waking hours since the 'Thomas' day.)
This was a turning point for us. From that point I talked to him with the assumption that yes, he did hear me. That yes, he does understand. I don't push him to answer me although I do pause to give him time to respond.
Over the years, until his fascination moved to things other than trains, I utilized Thomas the Tank rewards to motivate him for many things.
Anyways, the summer before he was to enrol in kindergarten was the next time I took the plunge to find some answers. My son was using some words, but still not talking with phrases. He was seen by a wonderful lady at our Child Development Centre. She recommended that I place him in the preschool program over summer. (We felt that perhaps without his safety net of siblings and mom to guess at everything he might decided to speak some more. I agreed, thinking that at worse it will give me an idea of how he would do in a school setting).
Surprisingly he seemed to enjoy preschool. He did learn some small phrases although he tended to choose verbal communicating. He would not participate in singing or talking activities (ABC'S etc) but he did enjoy exploring this new environment.
School, however was a different story. I ended having to attend with him as his meltdowns were more frequent. Where the preschool allowed him to wander to a different station when he felt like it, in Kindergarten he was required to be with the class. He did start to talk some, but no one but myself and his sister seemed to be able to understand him. The school started him with speech therapy. (I loved this girl! She used trains and Thomas to motivate him, never talked down to him. His speech dramatically improved over the years, due both to his own development and to his speech therapist.
In grade one, his class had another child in it who was diagnosed with Asperger's. My son gravitated towards him. The teacher, with my permission, put my son on a wait list for a psych-ed assessment. In the mean time, the aid for this other child included my child in their skills training. (with of course, permission from the other child's parent.)
My son was struggling with the reading and writing part of the curriculum. The school placed him in the 'reading recovery program'. His sight words were phenomenal, but the mechanics of reading seemed to be stumping him.
There were less meltdowns at school and as such I was only in class with him twice a week. He had learned to participate in class activities, but screamed if they sang or played music. His vocabular at this point included words like 'pontificate, validation, experimental, inconclusive' yet he was unable to make r's, s's f's th's in the appropriate placement. The school tested his hearing again. Interestingly, with the part of the test where they check what range of sounds he can hear, he scored exceptionally high for pitches both higher than typical range, and lower than typical range.
The psych-ed determined that there 'is some sort of learning disability' and while he 'demonstrated many autistic makers' his overall scoring did 'not indicate enough evidence to be diagnosed with autism'. Their recommendations were to reassess in a couple of years, provide reading recovery and skills training.
Until this year, when my son asked me 'Are you aware that I am quite different from other kids in my class?' and told me that 'I don't particularly understand why my friends do some things and say some things' and later asked 'Am I retarded?' I was excited and worried. Excited because he was NOTICING things socially. Worried because I am not qualified, imho, to teach social skills. Not to a child who is literal to extremes and does not take information from one scenario and apply it to another.
So again, off to find some help. I had the speech therapist provide a complete assessment, including pragmatics.
With this assessment in hand I went back to the CDC, to the CLBC (community living) and the ministry of children and education. He is now enrolled in a pilot program that uses social scripting (based on winner's program) and is doing well. He also works with a behaviour interventionist once per week on conversation skills, social interactions etc. He has since received the diagnosis of PDD-NOS as well as pragmatic disorder.
OH! and last year he was diagnosed with dyslexia, and we started the Barton reading and writing program. He is currently minimal meeting expectations for writing and reading. With a modified language arts mark he is on the honour roll which thrilled him to pieces.
Hugs and Laughter
I know I have included very little personal stories about my son in this post. This was more a background.