re-post from my blog about what happened to us as parents when we received the diagnosis for our son and then the plan of actions we needed to come up with to help him. Repost: http://wp.me/p1KVmo-c
Originally written on January 11 2011~
It’s funny how in life how three little words can change your life forever. “I love you” “It’s a boy!” or “Autism Spectrum Disorder”. We received the diagnosis last Tuesday and our lives have been a whirlwind ever since. Why did this happen to our 3 year old little boy? What do we do now? What IS this? What help does he need? How many forms so we have to fill out now? Do we switch schools? Who do we tell? How do you tell family? How much do you tell them? We don’t want him treated differently because he’s “our little Johnny”..he’s still our little boy.
I think I’ve suspected that Johnny had Autism since he had his speech assessment nearly a year ago when he was 2-1/2 and he was not talking. When he was 2 years old he started throwing toys in frustration and not wanting to play with us anymore. He lines up books on the book shelf as if he worked in a library. He walks on his toes when he’s super excited. He preferred playing alongside of children or by himself and didn’t do pretend play. I felt in my heart of hearts that something was wrong but he has such a passion for life….it can’t be?
We have been on a year long wait list to get a full developmental assessment at the hospital which finally happened just after Christmas. In the meantime Johnny has been in speech therapy, music class (he tries to play piano and other instruments and has natural rhythm) , swimming, 2 mornings of pre-school, gymnastics, and a special playgroup where they work on his social skills. The good news is that he has changed alot in one year and makes a lot of eye contact, smiles at people when they greet him, waves, enjoys playing alongside other children, laughs and runs around with them, and loves hugging and cuddling with his close family, He’s very smart and is always wanting to know what something is and what it does and understands alot of things and what we say to him. I can give him complicated instructions or teach him something new to help me in the kitchen and he picks up the new task quickly. “Princess” has been a real blessing because he is her rock star and anything he does entertains her and she has brought out another side of him. He worries about her and gets upset if we don’t put her in the car at the same time as him when we go out. Today I had prepared her dinner and I guess Mommy was not fast enough and I turned around and he had her spoon and was feeding her until after 10 spoonfuls it got a bit boring:)
What do we do now? In the long term, well he is on a 2 year wait list for Autism Therapy funded by the provincial government where he would get “one on one” therapy with a psychologist for 20 hours a week for 1 year or 2. It’s super expensive to do privately ($30,000 to $50,000 year) The first hurtle he has to pass to get the treatment is to be assessed by a psychologist to see if his Autism is moderate to severe because the government only funds treatment for these cases. The government did announce new funding to treat ALL cases of Autism in children under 6 but so far the agency that handles the treatment has not been given any direction or any new money. So fingers crossed that Johnny has a very bad day when he gets assessed so he can get a spot for therapy. They do not know what causes Autism and there is no cure. The therapy will help Johnny adapt to the unpredictable world we live in, learn to talk, be sociable and have have meaningful relationships.
In the short-term I was able to get him a spot in an integrated pre-school for special needs children that has a super long wait list which he’ll probably start in 2 weeks. I was going to be sending him to kindergarten with them but they had a spot open up in their pre-school where they will be able to give him one on one attention, create his own personalized program to help him, have an occupational therapist see him once a week since he wants to hop like a bunny so bad *smiles* and a speech pathologist see him once a week as well.
During all of this we got the best Christmas present….Johnny started talking again! 2 days before Christmas he said Mama and would call for me when he needed something. I was crying alot let me tell you in happiness. Then on Christmas Eve he said Dada. 5 days later he was up to 10 words he was trying to say. 20 days later he is now up to 33 words and he’s stringing words together. Everyday there are more words and today he made my 82 year old father’s day by calling him “Pa Pa” short for Grandpa. *smiles*
What I’ve learned going through this with Johnny and his little sister’s birth is that you have to remember to celebrate all the little things and enjoy all the moments and stop sweating all the big stuff or its easy to go crazy. Especially when my smart boy keeps insisting on making fire trucks bounce up and down instead of driving them on the floor over and over again but can take a little screw driver and change the batteries on his own toys all while I’m trying to nurse his baby sister.
I’ll try and keep folks posted on how things are going on our new journey with Johnny.