Welcome to the World of a Autism Diagnosis.
An autism diagnosis was not a planned part of my motherhood story.
Since before my son was born I wanted to teach him. I know how smart little children are and how much they can learn if parents just take the time. However things didn’t go so smoothly for us.
No matter how hard I tried, it seemed like I could not teach him. He was a late crawler, a late walker, a very late talker(were still working on this) and he was hard to control. I couldn’t reason with him, not even a little. Times he just plain ignored me.
However he was very smart, there was no doubt. He needed to know how everything worked. Thing is it was on his terms, he just would not allow me to teach him.
He did OK in the infant program at his daycare. He bonded with his caregiver. But when he was moved to the toddler room he did not adjust so well.
Every morning, involved him crying in the parking lot before we even got out of the car. The staff was little help in the new room. In order to leave I had to peel my son off myself and leave him there crying. The caregivers had just accepted this was how Wes was, and did little to comfort him.
Because of his allergies he could not sit at the group table instead he ate his lunch alone in a corner in a highchair. As a young single mom, who had never attended daycare myself, I had no idea this was not how it was supposed to be.
At the time we were trying to get him into speech therapy and had to go through the Children’s Development Clinic. There were countless forms to fill out. A packet was given to the daycare to complete. When I got that completed form I sat in the daycare parking lot that night and cried.
The comments and statements that the caregivers wrote crushed my very soul.
It read comments like “Wesley spends most of his time sitting in a corner with a toy staring into space. If another child takes the toy from him he does not get upset just begins wandering around the room” or “Wesley shows no interest in spending time with his caregiver, when shown books he refuses to sit”
They also talked about how he was unable to do puzzles. This was odd to me because he did puzzles at home all the time. How he seemed sad all the time, Wesley had always been a happy kid, until he started the toddler program.
After I read this report I was done. One month in this room was long enough.
Why would they allow him to sit alone and not engage him, even if he doesn’t respond right away, try again! These are suppose to be train Early Childhood Educator. Just because he didn’t fit their perfect cookie cutter child ideals he was being left in the dust. I could see he was being ignored because all the other children could talk and Wesley was never one to demand attention. So he was left to rot.
I called around and put him on a few waiting list for other daycare centres. I expected it to take months as good childcare is difficult to find in Winnipeg. However only a week or two later I got a call at work from a daycare in our local deaf center. They had a spot available for Wesley to start the next Monday.
I went into panic mode! I needed to give the other center 2 weeks notice or I would have to pay for that spot and this new one. As a single mom on a tight budget I couldn’t make that happen and still pay the rent. Not on such short notice. Plus I wanted to visit the centre, talk to the workers and make sure this was actually better for Wesley. Because they required a yes or no answer I had to turn them down. My heart just sunk as I sat back down in the chair in the lunchroom at work and fought back tears.
But God must have been watching down on me, a few minutes later they called back. They decided that because Wesley(being non verbal at the time) could benefit more than the other children on their wait list they would hold the spot for the two week period as long as I agreed to come down the next morning check out the center and give a firm answer. My heart just sung with joy! A daycare actually wanted my son because he was nonverbal, and they were willing to work with me.
The centre was everything I dreamed, it was slightly Montessori. Children who were not potty trained were cloth diapered, and they used a emerging curriculum. Children learned using things they were interested in. Plus they signed, and not baby sign, real ASL. What more could a mother ask for a great environment and the chance to learn a second language. I had been trying to teach my son ASL and it was starting to come along.
Wesley still cried when I left, but he was included into the group activities. They included him at lunch. They exposed him to more and more signs. He was understanding the deaf caregivers.
The children included him, they just assumed he was deaf and that’s why he didn’t talk. The caregivers helped them understand he wasn’t deaf, he just needed help getting his words out. When he would say something all the children would cheer ‘Wesley talked!! Wesley Talked to ME!!” They were and still are so supportive of him. Plus the daycare director put in a few words at the Children’s Development Clinic and helped get him bumped up the list.
An Autism Diagnosis – The Other A-Word
What I found out on that cold January day in 2008 almost paralyzed me. Dr. Bowman looked at me in the eyes and said, “Your son has many strengths, however I do see a lot of autistic tendencies.” I tried to reason with her, ” Wesley is not autistic! He makes eye contact, he loves being with me, he smiles! He bonds with people, autistic kids don’t do that.” “Ms.Dupuis, the autism spectrum is very wide. I will run a few more test, but I already have a good idea what they are going to agree with the autism diagnosis.”
I went on to ask about what Jenny McCarthy was doing with her son Evan. A few months ago I had just read the book, Louder Than Words: A Mother’s Journey in Healing Autism. I had seen Jenny promote it on Oprah and for some reason needed to read it. She shot it down saying it was not scientifically based. I asked if he would recover, they refused to give me real hope.
The autism diagnosis is really is wild card. No one knows what I child’s outcome will be.
We did the additional testing. I don’t know if it was more frustrating or comical. Every time the person conducting the test would turn around, he would do something she would have benefitted from seeing him do.
The results came in and of course as we expected, he was on the spectrum. We could choose between two provincially funded programs we could choice from. We could do either ABA(What is ABA?) or Floortime. However we were lead to believe that ABA was ONLY for families with a stay at home parents. We more or less mislead into the Floortime program.
Honestly for us Floor Time was a waste of time. It was producing NO results. Every time we would finish up the session they would tell me I was doing great. I would ask what more I could do and all they would say is:
=”Keep doing what you are doing.” or
-“I wish we could record you for other parents to watch and learn.”
Well I don’t know about you, but to me what they were asking me to do was insanity. They were asking me to do the same thing over and over and expect different results. This was frustrating to say the least.
Around this time I had started seeing dating a new guy. One day he called me at work after reading an article about a family who moved across the country to participate in the local ABA program. I told him I knew all about it, but it was for families with a stay at home parent. That’s when he stopped me and said
“Monique, these parents were both busy doctors.”
WHAT?!?!? So I got right off the phone with him and called St.Amant. They assured us they could work with Wes right in his daycare and I’d only have to miss work once every two weeks. We got the ball rolling and wow. Just WOW.
I’m not going to lie, we hit some bumps. One being our first tutor who was good at first, stopped took a turn for the worse. She fell asleep on a public bus during a field trip with Wesley’s daycare while she was suppose to be supervising him.
Then the next day feel asleep at a public park while she was in charge. When I found out about this I demanded she never come near my son again as she was neglecting him and putting his life in danger. I don’t think I have to go into detail about what could have happened to him
Now Wesley has a wonderful tutor who teaches him so much! She’s really an angel to us.
When Wesley was 5 months old I became a single mom. Things just did not work out between me and his dad. When Wes was a week shy of turning 3 I met my current boyfriend. Who in his own unorthodox ways teaches Wesley so much. As soon as I learned to step back and he was able to be more involved, he helped teach Wesley boundaries and respect. He helps me every day, I don’t know what I would do without him.
Now Wesley where is he today. WOW he is doing AMAZING. He can sign 100s of words, but is depending mostly on his speech. He’s still uses short sentences, but is improving everyday.
He can spell his name, count to 25, read 50 words(just started learning a few weeks ago and is just soaking this stuff up), knows his alphabet and what sound each letter makes. He plays with his peers, loves trains, cars, puzzles and Franklin.
I have ABA to thank, and also a modified Doman Technique, Your Baby Can Read and The Letter Factory.
I hope to come here and update regularly about Wesley progress and any new programs were trying.