Autism Spectrum Disorder

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”.

1stblog post ASD

We received the diagnosis last Tuesday and our lives have been a whirlwind ever since. Why did this happen to our 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.


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7 Comments Add yours

  1. Sharon Walker says:

    Way to go Johnny! 82 words… Fantastic! Keep up the good work!
    Andrew and Cynthia my love and prayers are with you always….the road ahead will be filled with challenges, but together, and with your love and amazing attitudes, Johnny and Princess have a beautiful bright future.

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    1. Cyn says:

      I really appreciate your words of support Sharon. You have always been there for us. We are learning to celebrate the little accomplishments because little by little he WILL get there 🙂 *hugs*

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  2. Deb says:

    Your son is absolutely beautiful and what a joy he seems to have brought everyone !
    You wiil definately learn more from him about yourself and what life is for sure. Enjoy each other. God Bless.Love Debbie Groat 🙂
    http://www.autismawarenesscentre.com/what-is-autism

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    1. Cyn says:

      Thank you for the very informative link Debbie and your loving words of support. I’m so glad we reconnected. Yup, he’s a heart breaker:)

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  3. Paula says:

    Cynthia, I was very moved by your story about Johnny, it touched my heart, thank you for sharing. I know I will look forward to hearing about Johnny’s and Princess’s progress in your next blog. I am on the Board of my daughters school and we are in process of setting up an ‘Autism’ unit (I’m not comfortable with the word ‘Unit’ I think it lacks soul and heart, so hopefully it will be changed to the Autism classroom or if you have any suggestions?).The reason I mention this Cynthia is; it is because of you writing your story that my view of how this ‘unit’ needed to be implement has changed. Your story has encouraged my to think about and see the needs of each individual that will attend the ‘class’. You have highlighted for me what parents need for their children, that their children are seen for them- selves as individuals and they deserve to be loved unconditionally for who they are and not to confuse a child’s behavior with their person. Despite the challenges you may face, no ‘diagnosis’ or ‘label’ will or should distract from Johnny’s or any child’s beautiful uniqueness. How lucky are your children to have you as their Mum! Look after and support yourself so you can look after and support your family. Love Paula

    P.S I thought this would be nice for all the ‘symbolic’ and biological Mothers. (No offence Fathers 🙂

    This is for all the mothers who froze their bottoms off on metal benches at soccer games Friday night instead of watching from cars, so that when their kids asked, “Did you see my goal?” they could say, “Of course, wouldn’t have missed it for the world,” and mean it.
    This is for all the mothers who have sat up all night with sick toddlers in their arms, wiping up sick laced with that days dinner and fruit juice saying, “It’s OK honey, Mammy’s here.”
    This is for all the mothers of Kosovo who fled in the night and can’t find their children.
    This is for the mothers who gave birth to babies they’ll never see. And the mothers who took those babies and made them homes.
    For all the mothers of the victims of the Beslan shooting, and the mothers of the murderers. For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely. For all the mothers who run carpools and make cakes and sew Halloween costumes. And all the mothers who DON’T.
    What makes a good mother anyway? Is it patience? Compassion? Broad hips? The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time? Or is it heart?
    Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time? The jolt that takes you from sleep to dread, from bed to cot at 2 a.m. to put your hand on the back of a sleeping baby?
    The need to flee from wherever you are and hug your child when you hear news of a school shooting, a fire, a car accident, a baby dying? I think so. So this is for all the mothers who sat down with their children and explained all about making babies. And for all the mothers who wanted to but just couldn’t. This is for reading “Goodnight, Moon” twice a night for a year. And then reading it again. “Just one more time.”
    This is for all the mothers who mess up. Who yell at their kids in the grocery store and slap them in despair and stomp their feet like a tired 2 year old who wants ice cream before dinner.
    This is for all the mothers who taught their daughters to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead. For all the mothers who bite their lips- sometimes until they bleed-when their 14 year olds dye their hair green. Who lock themselves in the bathroom when babies keep crying and won’t stop.
    This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and nappies in their purse. This is for all the mothers who teach their sons to cook and their daughters to sink a ball in pool.
    This is for all mothers whose heads turn automatically when a little voice calls “Mam?” in a crowd, even though they know their own offspring are at home.
    This is for mothers who put flowers and teddy bears on their children’s graves. This is for mothers whose children have gone astray, who can’t find the words to reach them.
    This is for all the mothers who sent their kids to school with stomach aches, assuring them they’d be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.
    This is for young mothers stumbling through nappy changes and sleep deprivation. And mature mothers learning to let go. For working mothers and stay-at-home mothers. Single mothers and married mothers. .
    Mothers with money, mothers without. This is for you all. So hang in there

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  4. Cyn says:

    Wow Paula thank you for the incredible comment:) *hugs* I think I have to get way better at looking after ourselves and taking time for “me”.

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