February 14th 2019, Valentines Day, one of the worst days I've had in a very long time. This was the day our IBI therapy provider gave us the call telling us our therapy would be ending come April.
I am the mother to an amazing little 6 year old boy, Kolby. Kolby is the light in many lives. I can honestly say he has truly brought a ton of love to our small northern town.
Kolby is funny, caring, empathetic and playful. Kolby happened to be diagnosed with moderate to severe, non verbal autism at the age of 3. Before having Kolby, I honestly didn't know a whole lot about autism, I didn't know anyone personally who had severe autism and I sure never envisioned that one day autism would play a major role in our family's life. Our journey after the diagnosis started with lots of research, and a TON of referrals.
Thankfully speech therapy began shortly after Kolby's diagnosis. I also decided to hold Kolby back from starting school, since he was still not toilet trained and because we were in the process of different testings and evaluations. Speech therapy was amazing, Kolby didn't gain any actual speech but he did learn how to communicate his needs and wants by pointing. (something as simple as pointing was a HUGE milestone in Kolby's life). Once Kolby did start school at the age of 4 going on 5, (still being non verbal and not toilet trained) speech therapy followed him into the school setting. The one therapy we were still waiting for was the big one, the miracle therapy we read so much about. IBI- Intensive Behaviour Intervention. IBI finally entered our lives a few months after Kolby turned 5.
Before IBI entered my sons life, Kolby was having meltdowns daily. We couldn't go anywhere as a family, restaurants were a huge no for us. I was scared to leave Kolby alone in a room with his younger brother. Kolby's self injurious behaviours were growing, his fingers were constantly swollen and raw from biting, he would pinch his own legs, and hit himself in the head when frustrated. Life just seemed overwhelming.
Within a year of IBI we have seen DRASTIC changes in our little boy. IBI worked intensely with Kolby 3 days a week, year round even in the summer. Kolby's team was increasing hours but had to do it slowly to make the transition easy on him.
Some of the main goals with IBI were to desensitize Kolby to toilets, since he had a huge fear of them. They worked on eye contact, listening skills and worked on getting Kolby to react to hearing his name being called. The last few months of therapy they worked hard on getting Kolby to use PECS- Picture Exchange Communication System.
I have seen huge improvements with Kolby since IBI has started.
He is able to stay more focused on tasks. He is able to sit long enough to work on a puzzle or even sit and listen to story with his little brother. This is a huge accomplishment for Kolby.
Kolby is able to look me in the eyes now when he is being spoken to. He is able to understand that when I say "Kolby" I am wanting his attention.
Kolby is still not toilet trained but is no longer afraid of toilets. He is able to be around them, he is able to put toilet paper in a toilet and flush it. This might not seem like much, but even being around a toilet being flushed would cause a meltdown.
The biggest gain we have made thanks to IBI is the work they put into teaching Kolby and our whole family PECS. Kolby has his own book with pictures of different activities or objects. He is able to use his PECS book to request wants and needs which in turn has decreased meltdowns and self harming behaviours.
Kolby has even found a little bit of his voice since working with IBI. He is able to echo some words. I have heard my son finally say "Love You" for the first time in 6 years all thanks to IBI.
Some other future goals we had planned to work on with IBI included further toilet training, nail clipping (it has to be done when he is in a deep sleep) and hair cutting (also has to be done while alseep or while he is restrained which causes major stress to everyone involved).
I cannot put into words how much of Kolby's growth we owe to Kolby's IBI therapists.
The new OAP will NOT support my son whatsoever. The new budget will not even come close to giving my son even a portion of the therapy he relies so much on.
Kolby NEEDS IBI, he NEEDS this routine and he NEEDS it from TRAINED therapists by his side. I can already envision the regression coming his way.
Please hear our cries, we are fighting for our children, for their lives, for their future.