A new diagnosis

Hello everyone :)

In mid January, James received a new diagnosis - ASD (autism spectrum disorder). We've suspected this for quite some time and pursued the testing. We've had behavioural challenges with James that for awhile we (along with our therapists) believed were caused by James' significant speech delay. It makes logical sense why you'd have a fair amount of frustration when you have trouble communicating with others, right? Well, we've had help with the team at Holland Bloorview for almost 2 years now with getting James' speech generating device (his "talker" we call it). That has helped tremendously with lots and lots of practice and repetition at home, school and in therapy. But even with the talker, we've had significant behavioural trouble. At first we thought it was mainly at home, but when we probed further, we discovered there were behavioural concerns at school too. Other things that alerted us to a possible ASD diagnosis was during the summer, James became very interested on watching Olympic swimming to the point where months later, and even now - that's what James watches daily (he's now added NBA dunk highlights to his favourite list too!). Having very specific interests is characteristic of those on the spectrum, so this made us wonder more about the possibility. He loves tv more than anything (and significantly more than neurotypical kids). He will frequently ask to watch tv as soon as the day starts and will get quite upset when the answer is no. James also has some sensory sensitivities often seen in those with autism as well. He always wants his socks off and gets very irritated with dressing - certain types of fabric really annoy him and he really doesn't like coats! He has a love/hate relationship with music. There's really no in between - he either really likes it or wants the music off immediately (especially when Shae is singing Disney songs!). James can go from 0 to 100 which has made daily life rather challenging because you never know when or what will throw him off. He has some social and play skills that are behind developmentally & at 5.5 years old, James still is not potty trained (unfortunately he has no interest yet).

So there's some detail that helps to show how the ASD diagnosis came about. Those on the spectrum are sometimes non-verbal, so James' autism diagnosis could potentially explain that too. When James is 7 or 8, it is likely he'll have a 3rd (and hopefully final!) diagnosis - global developmental delay.

Mike and I are big believers in getting these diagnoses to help get more supports for James. He is not defined by these labels; they are a part of him and how he understands and interacts with the world. It's been helpful as parents to know about the autism diagnosis as we care for him. A daily struggle for James is the transition from tv time after school to dinner time. He will often have a meltdown and take a significant amount of time to calm his body (no matter how much of a transition/warning you give him). Appreciating neurodiversity and how James' brain processes things differently, has helped me have compassion for him in these tense times in our house. He's not trying to give us a hard time; he's having a hard time. Figuring out what sensory input he needs has helped (music on/off, weighted blanket, lots of hugs to name a few).

It seemed fitting to share James' autism diagnosis on Autism Acceptance Day - April 2. It can feel like an overwhelming experience as a parent to take on another diagnosis; find our way in a whole different community, supports, therapies, funding, the list goes on. We are thankful though for the timing of this diagnosis as we have transition meetings set up to prepare James to go to our home school in September. His autism diagnosis in addition to cerebral palsy, helps us advocate for more supports.

Often you'll see colourful puzzle pieces representing ASD as well as the infinity symbol. We had to get matching shirts for our first official Autism Acceptance Day.

Here's an assortment of pictures and video highlights of the last few months:

Celebrating Donna's 60th birthday

Pink Shirt Day supporting anti-bullying

Said goodbye to our fav OT of 3+ years, Kali

We recently started a new therapy on Saturdays called Therabounce which uses a trampoline. James loves it! Next weekend, James starts a spring session of horse back riding.

James' stander at school getting fitted to mount his talker

Looking back on 2021 & ahead to 2022

Hi readers! Happy New Year! We've neglected our blog in 2021 - my apologies! We're playing catch up. Here we go!

Last day of JK at Campbell's Children's School

James is in senior kindergarten (SK) at Campbell's Children's School - his second year. If you didn't know, CCS is located in the Grandview Oshawa site (our local children's treatment centre). They typically just offer a 1 year placement for JK and SK kids that have various special needs but occasionally kids get a second year. We feel very fortunate that James was granted this. The goal of CCS is to focus on therapy goals in and out of a small classroom setting. With the help of a multi-disciplinary team, the intention of CCS is to transition kids to their home school with the appropriate supports in place. I (Ali) have a meeting with James' therapists (speech, physio and occupational) in mid January to talk about his progress so far, update goals as needed and talk about plans for the fall.

2020/21 School Year (JK)

James' JK Educators

Some pics of school last year (JK):

2021/22 School Year (SK)

James enjoys taking the bus each day. Our bus driver, Steve, is awesome! They rock out to some classic rock tunes each morning. James loves it! James' teacher, Ms. Hibbs, is wonderful. She has really taken the time to learn about James' needs, specifically his communication needs using his talker. He also has great ECEs who are so key in helping him with so many tasks. The right supports for James is SO important. James gets along well with his classmates and really enjoys the group environment. He's been introduced to his very own chromebook at school & working on his keyboard skills. James needs to be pushed sometimes to do the work - but he can do it! His educators & Mike and I have had some chats about working through his frustrations and some behaviours that occur in the school day.

A collection of pics from this school year:

James has progressed so well with his talker. Over the summer, Mike and I really focused on using the talker ALL THE TIME! As I mentioned briefly earlier, we've had some behaviour concerns both at home and at school. Communication, we've felt along with his therapists, is a big contributing factor to his frustration. So of course, helping James express himself using his talker has been incredibly important. His speech therapist at Grandview was so impressed with his progress when she saw him in September. That was great to hear after focusing so hard on it over the summer.

James is seeing a private speech therapist, Sabrina, once a week who is very knowledgeable with his device and the program (Unity) he uses. She's the first SLP I've seen come with their own device to the therapy session to communicate with James. I'm so happy to have her on James' team, coordinating efforts with our Grandview & Holland Bloorview SLPs. We've learned that once Holland Bloorview approves the equipment needed following the trial period, their involvement is significantly lessened so private therapy is really important to continue to progress. Communication has been such a big focus of ours in James' development over the last 2 years especially. More and more we use the term nonverbal when discussing James' speech development with professionals. That's been an adjustment as parents. It comes with a significant amount of grief, knowing the hurdles that places before him and us, not to mention the obvious challenges of having cerebral palsy. We soldier on though, knowing that by using certain terms (nonverbal) we will get the supports that he needs. I get asked often if he says any words. He says "yes", "no", "more". Those are the main ones. He's said other words in the past and we still have hope that more words will develop with the help of our speech therapists. He definitely babbles a lot, or tries to sing in his own way so we see that has a good sign. He now uses his talker with vocabulary builder off, meaning all words are unmasked. Our private SLP encouraged us to do this and we've been pleasantly surprised to see how well he's done to still find the words he knows and uses often while also finding new words and expanding his vocabulary. We're encouraged by this!

James did 2 one week intensives at SMILE therapy for kids over the summer and he continues to go weekly for 2 hours as well. There's a big focus on strength training when he goes to SMILE. They push him & he responds well! In the video below James is using the Trexo - a robotic walking device that combines James' initiated steps with a robotic movement of steps. If you have a moment, check out the story of the Trexo here

They always find fun and new ways to challenge James. We are big fans of this team!

I have to include a pic of this cutie!