Lukas

Age: 4
Provincial Riding: Renfrew - Nipissing - Pembroke
This is Lukas he is a beautiful little boy who just turned four. He is a happy and healthy boy(although he gets a lot of fibre from eating books or even sticks much more than any foods I cook). When he was under a year old I noticed he would straighten his back and do circle with his hands and feet but was progressing right on par. He was learning words, he was walking, he loved making faces in mirrors. Then just before his first birthday everything changed, he had a regression. He stopped talking and yelled all day everyday and stopped sleeping if I was lucky 4 hours a day. His normal walk turned to a tip toe walk. He completely stopped making eye contact. He stopped wanting to cuddle or be close. My heart broke.

I brought this to his dr and she along with an RN who worked with her made all the proper recommendations. The next year nothing changed i waited hoping for a miracle. Although I knew my son had autism I just was forced to sit and wait for him to be diagnosed. He was 26 months old when we finally got the diagnosis, (autism, global developmental delay, PICA) I felt a relief like omg we can finally get help. Sadly all that really meant was we were on another list. We are still here waiting for a miracle.

We have gotten help along the way I must say although we didnít make it into ibi (even though I was told he would require about 40hrs a week). We have been blessed with another help though that I would have been lost without. Lukas has been in daycare since he was 2 1/2 we have integration services and speech along with OT monthly. Unfortunately his OT went on maternity leave and we stopped getting it six months ago. We did end up getting speech weekly in town instead of monthly in renfrew. Which is a 45 min drive away. He does get 1:1 support in daycare 3 days a week these services have done so much for my son. To be amongst his peers and having wonderful loving staff has made humongous changes, he used to give 0 eye contact or affection, he would scream and cry if children came near him. He actually yelled most waking hrs and barely slept I was exhausted. So was he. These supports he has gotten and my very crash course in raising a child on the spectrum has made huge changes. he is now quite happy makes a lot of noises but no proper speech thankfully gave up the constant yelling. He makes some eye contact and is much more affectionate he actually kisses me (which was the most incredible feeling)We are working on pecs slowly but not there yet. These services are all coming from family services infant and child development they have made the difference along with integration.
All that being said despite how far we have come and how hard we have all worked he has begun to throw tantrums and bang his head. He will even bang his head when he is laughing or mad so it isnít only out of frustration. Iím always trying to redirect him but it seems to upset him further. I am so worried he is going to end up damaging his perfect little head.

He is starting school in a few months and I am so worried. Without the proper support and supervision Lukas will absolutely hurt himself! He will run! He will eat something or he will self harm! He doesnít like change very much at all. With the changes to the autism program it making it impossible for us to see a light at the end of the tunnel. To know he wonít ever get a chance to get the intensive therapy that could help him. Or if he is lucky enough to get started is $20000 going to nearly be enough? Unfortunately it isnít.

There was of course flaws to the old system and it was failing him but this new program guarantees he wonít get the supports he deserves. I realize that the costs are astronomical and if I could I would do anything to pay for it but unfortunately, Iím a single mom I have 3 children and live in poverty. I do not have family to ask I was a foster child so we are alone. I donít drive so Iím constantly having to pay to get him to daycare or dr appointments. I will fight for my son every step of the way and spend all my hours and energy to help him. Like I mentioned though I have other children I feel a tremendous amount of guilt though because they get less of me because there brother gets all of me.

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