Hello! Thanks for stopping by! I am here to tell you a little about this amazing little boy we named Taiten or “T A I T E N” as he spells loud & proud. He is a happy, curious, busy, 5yr old who has many passions.
Our Autism journey began at a Pediatrician’s appointment with the wonderful Dr. M in October of 2014 (Taiten was 15months old) with a check up on a possible leg length discrepancy. During this appointment the typical milestone questions arose and based on my responses realized that we were falling a bit behind. We left the appointment with a suggestion from Dr. M to do a self referral to Wordplay as soon as possible. I can still hear the persistence in his voice when he said ASAP. Fortunately, we were able to get into our local Wordplay office within two months. The SLP administered a M-CHAT and sent in a referral for an ADOS in January of 2015 at the age of 18months.
In March 2015 I took it upon my self to get his hearing tested to ensure that we weren’t missing something. I had concerns because he wasn’t responding to his name but would cry and start head banging at the sound of the vacuum. The test came back with no concerns with hearing impairments.
Then in August 2015 I booked him an eye exam… only to find out he had no red-retina reflection in his right eye. My heart shattered into a million pieces. I knew one of the possibilities of what that meant was a tumour because my father had a brain tumour removed at 40 and the again at 51 (February 2015). Luckily, it was only a cataract. His surgery in January of 2016 was successful and he was fit for an intraocular lens. By this point I was thinking his lack of eye contact was possibly from is inability to see from his right eye. I can’t say I was in denial of him potentially having Autism, I knew there was something… but I wanted to take the steps to ensure we had everything covered before we got the call.
Fast forward to June 2016 (1 month before his 3rd Birthday) and we received the call for our assessment. He was assessed in late June and the official diagnoses came in October 2016 on the severe end of the autism spectrum, non-verbal, with a motor speech delay, with a potential of global developmental delay. He was approved for IBI (under the AIP).
During the time while we awaited IBI we were fortunate to be able to take part in Sudbury’s new JASPER (Joint Attention, Symbolic Play, Engagement & Regulation) Pilot. The pilot ran for 12 weeks over the summer where we traveled an hour into the city two days a week, to stay for a duration of 2-5 minutes the first few weeks. I was frustrated, to say the least. I wanted to be able to help my son but what was he learning in just a few minutes. I was a little skeptical… but boy was I wrong! By the time we hit the end of the 12-week session he was sitting for 20-25minutes with some redirection, be played more purposely with toys, he was able look in the direction on a point and even point himself!!! Those skills he learnt in that short block of time had me inspired! Being able to take part in that pilot let me get to know my son so much more. This program was an asset in my opinion, and I am grateful we received this early intervention.
Meanwhile, as we waited for the IBI call, I took a few workshops our regional providers offered. More Then Words, Parent ABA Class and a feeding workshop to broaden my knowledge on everything Autism.
Fast forward again to September 2017 and the day before my 33rd Birthday I got the CALL! It was seriously the best birthday present to date! This is also the year that Taiten started school. I was ecstatic! At this point our transition from daycare to school was unsuccessful and he was only attending school for 3hours a day with little to no inclusion in the classroom. There were just not enough resources to make his day successful. (To think that as back in 2017… I’m terrified on what will happen now with the Hiring Freezes and little to no ASD qualified staff in the rural school system).
We have been in service now since November 2017 at 24hours a week. His ABLLS assessments are amazing, he has come such a far way from the pull ups and the one-word mands. I could write a whole book on the amazing things that IBI/ABA has done for him. We are toilet trained day and night. We make 5-6 word sentences. We can read more then 100 words, we can probably spell more. We are working hard on fine motor to be able to write. We can undress and dress ourselves (even socks, just recently). We wear our glasses! We’ve come to understand the emotion of being sad and when to ask for breaks. We strive on first and than and offer choices. We know the names of our family members if someone asks (so good to know in the case of an emergency). We know our birthday; how old we are and which province we live in (still working on home address, town and phone number). We've made so many gains I fear for regression, as just recently one of my son's therapist was let go. He didn't even have a chance to say good bye. We came back from a break over the March break and she was gone before we got a chance to see her again. :(
You’ll notice I write WE because his journey is our family’s journey and I will do everything in my being to continue to support my son and others just like him. Even if it comes down to be a full time professional protester because I will quit my day job! I also write WE because I know my ASD tribe will be right behind me with the same concerns. Drop the age cap (Autism doesn’t just magically go away at 5, 6, or 18), make services based on the needs of the individual child (it’s a spectrum for a reason), and don’t forget us rural and francophone families (nous méritons une chance aussi!) It makes me ill to my stomach thinking that literally a child diagnosed 10 assessments after Taiten has still not received any services (this I know). I can’t speak for every parent, but my immune system took a crash following the announcement in February and my body is still in fight mode.
In closing am extremely grateful for the services our province offers. I am proud to be from Ontario, please don’t let me regret that! It’s not too late to make it right!
#PauseThePlan #NeedsBasedFunding #WeAreThe100Percent