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!

With Shae now in JK at the local school in our neighbourhood (Whitby Shores), I've been meeting a lot of parents with kids her (and James') age. James' bus drops him off at Shae's school so I can walk both kids home together. This has meant many from the school community have gotten to know James as well as Shae and I. We've also had some park meet ups with some kindergarten families which has been fun. One mom in particular, Kerby, has taken an interest in James and we've had some talks about James' needs. She was amazed at the cost of all things adapted (vehicles as an example). Even as something as basic as a sled, when you purchase an adapted version is $1200 Canadian (thankfully I found cheaper options in the US- but still expensive). Kerby's husband, Jeremy, had his second open heart surgery in November and they experienced a lot of love from their community. They wanted to give back so Kerby asked if she could organize a fundraiser to get James a sled this Christmas! After posting some pics about James and sharing them on stories on social media, support was raised to buy James his sled in just 6 hours!

We were blown away by Kerby's willingness to organize this for James & the support from so many (and so quickly). There are a lot of good people in this world! Thank you to all who donated and of course to Kerby for organizing! The sled arrived just in time for Christmas and freshly fallen snow on Christmas Eve - couldn't ask for any better. James loved it as you can see from these videos:

It's difficult to talk about 2021 without mentioning covid. James was a close contact at school at the end of November and his class had to learn virtually for a period of time. We quickly learned that he was a positive covid case. And just a few days later, Mike and I tested positive too. Amazingly, James didn't develop any symptoms other than some GI trouble near the end of his quarantine time. Mike and I definitely felt ill. It basically felt like a bad chest cold & flu combined. The shortness of breath we experienced (Mike especially) was the worst symptom. Shae somehow managed to not get covid! She was a trooper for getting many swabs and being out of school for over 3 weeks to isolate. We're on the other side now thankfully. Health is never to be taken for granted.

The best part of 2021 was seeing my sister and brother-in-law in the summer. They visited from the UK. We rented a cottage for a week in Muskoka and had the best time together as a family.

I know it's a little late to talk about summer when we're in the middle of winter but I'm playing catch up! James went to camp at Grandview for multiple weeks last summer and had a great time. One of his best buddies he met there was a boy named Andwele or "Dwele" he's often called. He was so sweet with James. Even though he's about 3 years older, they bonded so well. We met up at a park once camp was finished and hope to meet again soon. When kids (and adults) make a deliberate effort to connect with James, it certainly does not go unnoticed.

James & Dwele

Other 2021 memory highlights:

- Shae's preschool graduation

- Mike and I celebrated our 10th wedding anniversary

- Shae's first summer playing soccer

- lots of fun at the park, beach & zoo

- hangouts with cousins, grandparents & great grandparents

What's ahead for 2022? The biggest one is figuring out James' September school plans. There will be many meetings ahead to make sure James has the supports he needs to succeed at our home school, Whitby Shores Public School, in September. With the recent announcement of returning to Stage 2 in Ontario & doing virtual schooling, we are relieved to hear this does not impact James' school. He goes back to school tomorrow. Shae will be home doing virtual school (and Mike too!) It's an odd start to 2022 to say the least.

Thanks for your interest in our lives :) We feel blessed to have so many supportive people around us.

A much needed update!

Look who's on the Grandview Kid's home page!

Our Grandview Kids ambassador!

Hi everyone! It has been a long time since we posted an update. In fact, this is my first post of 2021 - is it too late to say happy new year?! Probably! I will try my best to write about all the happenings throughout the last number of months but keep in mind - if you like the day-to-day chronicles of the Wilson's, follow Ali on Instagram at @alisonlorene to see my [almost] daily stories and occassional posts.

After spring break, Campbell's was closed like all schools across the province so we took the opportunity to do our first ever intensive at SMILE (sensory motor integrated learning experience) therapy for kids in Vaughan. An intensive just means going every day for multiple hours. We did 2 hours a day for 4 days in a row last week and James rocked it! He worked so hard. The last day they gave him a superhero cape and a t-shirt that says "I can do hard things". Boy is that ever true of our warrior.

James has really grown up this past year in so many ways. School has really contributed to this. I posted a little about Campbell's Children's school in our September 2020 post. We have felt so thankful that James was accepted to Campbell's and he was recently accepted to attend next school year as well! Kids typically get a 1 year acceptance; only some get 2 years. His therapists really believed (as well as Mike and I) that another year would really help him achieve the goals we have set to make the transition to a mainstream classroom at Whitby Shores Public School more successful for grade 1. James gets weekly physiotherapy, occupational therapy, and speech therapy built into his school day which has been fantastic. This is all publicly funded. James connects so well with his therapists, teachers, ECEs and kids in his classroom. There were certainly some adjustments in the early weeks of school but overall, he has done really well.

In the first couple months, I often heard that he needed a little snooze mid day!

They are such great encouragers!

James loves taking the bus to and from school! Our bus driver, Roger, is the best!

We've been really impressed with James' learning throughout the school year. He recognizes 32 sight words right now!

I take James out of school every Wednesday afternoon to go to SMILE for 2 hours (one hour of physiotherapy and one hour of occupational therapy). It is so beneficial for James and if you've been a regular follower of the blog you'll know that we are frequent attenders of the clinic and big believers in the SMILE team. They are such fantastic therapists who love James and believe in him big time! Check out the large variety of exercises they do with him with lots of neat equipment:

In the last post I updated about James' hips and the S.W.A.S.H brace that we tried out. Since then, James has had another hip x-ray and we settled on the Maple Leaf brace that James sleeps in every night. The brace is used to help with proper alignment for his hip joint. We hope that it will improve the migration percentage of his hips (the percentage of which the head of the femur is outside of the hip socket or the acetabulum). As it stands now, James' right hip is at 58 degrees and his left is at 49 degrees. James will continue to be monitored yearly by Dr. Camp, an orthopaedic surgeon at Sick Kids. We really hope James will not need hip surgery in the future although having a higher level of CP like he does (level 4), puts him at a higher risk. The good news is he is not in any pain. X-rays are necessary to monitor the migration percentage because kids don't always show any signs of pain even with extreme hip dysplasia.

Eric trying out the maple leaf brace with James

Getting fitted for new AFOs

In September's update we explained the steps we've undergone with Holland Bloorview's augmented communication program. After we were unsuccessful with the high tech device we tried with James, he started school using the first system we started with in May 2020 - the core board. A couple months later, a communication book arrived which was the low tech version of the Unity system we had tried in the high tech form. The regular and repetitive use of "James' words" as we say has really helped develop James' expressive language. He's learned the motor plan of the communication system (knowing where to find the icons/words). In late February, our speech therapist with Grandview (who James sees during his school day) and our speech therapist at Holland Bloorview both agreed that James was ready to try the high tech device again. After nearly 2 months of regular use, submitting videos & many meetings with our speech team, we're happy to say he has been approved for the high tech Unity device! This has felt very satisfying since it's been nearly a year since we first started with the Holland Bloorview's augmented communication program. Here's a photo of the device. This is with vocabulary builder on which means that not all of the icons are displayed - Just the ones that we're working on currently with James. As you can see there is a specific placement for each icon. This is the main page. Each icon is like a file folder that has other icons and pathways to chose from. James has really gotten the hang of it!

Here's some videos to show you how James uses the device. These are 2 of many others that we submitted to Holland Bloorview to show his successful use of the device during the trial period.

Here's a compilation of other photos over the last number of months - birthdays, Halloween, Christmas, Easter first trip to the dentist, etc! There's a lot to catch you up on :) Some highlights:

We tried a walker called the "kidwalk" for a number of weeks. We learned it's not the best for James. We're still looking for one that James can use more independently.

The nimbo walker is what we use at home the most. We're continuing to practice regularly and work on his endurance.

It doesn't feel right to end without an update about Shae. She and I spend a lot of time together since the Wilson boys are at school. Shae loves going to preschool two mornings a week. She's full of energy and spunk and we have no concerns of her starting JK in September - she will love it! She loves wearing dresses, singing Frozen & Daniel Tiger songs (she knows all the little jingles!), dancing and going to the park. She has a lot of love for her brother.

She has a big love of birthdays so celebrating her 3rd birthday in November was a blast! I love this video of her so enjoying her family sing her happy birthday!

Thanks for reading :)