A is for Amazing (and Autism)

My son is pretty Amazing. He is one of the most caring, thoughtful and sensitive little boys I know. I like to think all his great qualities came from me but I see so much of his Dad in him that I might not be able to take all the credit (most of it).

What three year old cries at movies, kisses his baby sister every morning and shares his favourite ice cream with his mama? He also loves to play pretend, is pretty good at being a dinosaur, loves to play lego, trains, read books, play play dough and to paint. He is an artist and isn’t afraid of getting a little dirty to create. Plus he is fearless in the water and seems to have found his second home at the pool. I couldn’t be more proud or in love with a boy than I am with my son. Besides being amazing he is also our first child.

So, as many parents would know, first borns are pretty special (at least that’s what Fraser and I, both eldest children, believe). Not only do they make us parents but they open our eyes and minds to a whole new way of thinking. For us Rowen has taught us patience, kindness, humility, to ask for help and so much more! He is my first at everything. First to crawl, walk and speak as well as the first to say “I love you mom” and a million other things. However being the first born also means we have never done this before and do not know what to expect or what is “normal” for each age, they are the practice child… lol!

From the beginning Rowen was very “easy”, however as he got older things became a little more challenging. Preschool is when we really started to notice some differences from some of his peers. I of course had my own set of concerns, raising a child was new to me, a boy was especially different (I grew up with 2 sisters and a single mom) and I wasn’t sure if some of my concerns were “terrible twos”, or just “a boy being a boy” or if there was more.

I did go to his paediatrician to express some concerns. After a little bit of research and some recommendations from friends I was working on getting Rowen a developmental assessment. I am not even sure I knew what it meant or if he needed it but it sounded like a good idea. Plus I had no idea what was going on with him I just felt like he was different than the “typical” toddler. Really what’s typical for a three year old?

Then the preschool called me in for a meeting and started to list a bunch of observations they had made and to ask if I would be open to Row having a one on one worker in the classroom I was a mess of mixed emotions. I was a little surprised, mostly relieved that I wasn’t being over the top with my concerns and I was so happy to hear them have a couple solutions to help make Rowens school more enjoyable for him. The idea of a one on one worker was amazing to us, it didn’t cost us a thing and meant he would have someone with him the whole time. It was surprising to me that any parent would say no or be upset at this amazing offering, but I guess not everyone shares the viewpoint of this being a gift.

The one thing I can confidently say is we are so impressed with our medical system as well as our preschool. We didn’t do a ton of preschool research but our main requirement was that it was a play based school. At the time, when we started thinking about preschool, we felt Rowen was no where near ready for any sort of academic learning or structured preschool. The only learning we felt was important was how to interact and play with kids and how to go to school, listen to another person besides us, take turns, share, clean up, snack independently, etc. I am so happy we took a a few friends recommendations and choose Reach. Not only were they super caring and empathetic when it came to our tough introduction to preschool (lets just say Rowen wasn’t excited about going to school). They also were so thoughtful and considerate when it came time to discuss the concerns they had about Rowen. I felt like it must be the most difficult job telling a parent their perfect child has been struggling especially if a parent isn’t ready to hear it but they have been only positive and supportive through the whole thing and I believe they are so much a part of all the successes we have had and will have with Rowen.

Rowens biggest area of concern are around communication and socialization. This was probably the hardest on me because I pride myself on having good and open communication but I also think our family is extremely social and that Fraser and I were extremely social. This was not surprising but always upsetting to hear that your child is acting differently than you had envisioned. I always expected our son to be outgoing and actively involved in lots of activities at school which is very much NOT the type of person Rowen is. This was hard for me to understand and accept. I had to mourn the ideas I had for my son and learn to love the son I have (that part was easy! He is super lovable). It’s not to say there are not times I hear of someone doing something with their toddler and think I wish I could do that with Rowen but I am better at adjusting my expectations and planning more appropriate activities and outings that I know he will love.

So, basically after hearing the teachers concerns and knowing my own I made a follow up appointment with the paediatrician, this time it was a full developmental check appointment. She was great, she went over lots of questions and listened to my concerns as well as the comments the preschool had. I honestly had expected her to have maybe a few small suggestions and say he is only 3 and that some of these things will just take time for him to outgrow. Instead she asked if I had ever considered he may have Autism. I was seriously shocked. The first appointment she asked and I said definitely not, as he appears so “typical”. But really what did I know about Autism and how it looks? After she explained that the main two areas people notice deficits with Autism are social and communication I did agree why she would think this could be it. I left the appointment with the plan to have an assessment done, which was essentially what I had wanted all along but now I was kinda in shock.

I quickly went in to see his preschool teachers and let them know about the paediatricians suspicions. Teachers were great, absolutely not surprised and agreed this was a smart plan. Again, I was very surprised but felt confident in my medical and educational professionals who have a lot more experience than I do.

Now it was our time to make some decisions. Should we wait for an assessment through the public system (guessing it is about a year but could be longer) or were we interested in private testing. I had left the paediatricians office asking for whatever was fastest and they put in the referrals for both (I guess I should discuss with the person in our house who has a job but it seemed like an easy decision to me).

When we actually went in to the private practice for our consultation (we went to Monarch House but there are lots of good private options) I was so impressed and sold on a private assessment. Here are my reasons:

  • Today is February 25th and we have finished our assessments (like seen all three professionals; speech and language, psychologist and paediatrician) and are still waiting for confirmation that paperwork is complete and we have been added to the public wait list. And part of the reason the private assessment took until now is because we were away for 5 weeks, otherwise this would have been finished by the end of January. So we are essentially finished our private assessment faster than we could even be put on the wait list for public. This is insane to me for many reasons.
  • To get funding and fast tracked for help we need a diagnosis (or it certainly helps). Also, the funding is higher before a child turns 6 so if we waited a year for a diagnosis we loose a year of funding, the private assessment costs $3,500 but the year of funding we will now get is $22,000 so easy math says spend the $3,500 and get $18,500. Obviously every family is different but in our case we are waiting to see an OT and Speech, both privately because it was faster, and we would be paying out of pocket for these. Just the OT I was anticipating to be about $500 a month minimum (once a week, $120 a hour). Now all of this can be paid for by our funding! At best guess we would have spent that $3500 easily within 5 months of seeing SLP and OT.
  • I am impatient. I want answers now, it is our child and even on trivial things I don’t like to wait, I certainly wasn’t interested in waiting when it was something so important. I react, I do not take time to digest… everyone is different in this way and some people like to wait because it takes them that long to digest this information and prepare.
  • Early intervention is known to be extremely effective. In a lot of cases the earlier the better the results, Rowen is extremely high functioning and on the very low end of the spectrum so we are hopeful to get lots of support now and set him up for as much success as possible by the time grade school starts. Up until now we are on some public and private wait lists including at school for a one on one worker but I believe now he should get one almost immediately. This is really going to help us get on track for help.

I don’t want Rowen to think he’s different from any of our other kids because he isn’t, they are all different and all special. This doesn’t change anything about the way we treat our kids because they for the most part are all treated the same or we have the same expectations in terms of values but it helps us to understand when he is struggling or having a tough time and it gives us help we have needed but didn’t know how to get.

It has also been big for us because we now know that Rowen most likely has ADHD and possibly anxiety (typically diagnosed at an older age). ADHD usually means that the child might act 1-2 years younger in maturity, this is huge for us in decided whether to hold him back a year for school. Also on top of some of the challenges we have had with Row, he is also one of the youngest of his class with a late birthday (November 21) and he is a boy (which means also a little slower to mature). All of this information is so helpful when we think of our expectations for him and our decisions with regards to schools and where to go, when to start kindergarten, signing up for team sports and other organized activities, etc. I just recently learnt that when it comes to public schools they no longer hold children back, in my mind and based on one recommendation I had thought we would do kindergarten and then possibly just redo another year if needed. Public funding is tight for education and regardless of what is in the best interest of the child each child gets one year in each grade, no redos! However if we choose private, then we could do Kindergarten twice, I am not a fan of the all day kindergarten and so this means I could even just do the first year of kindergarten go for half days and then gradually build up to full. We just really want to make the best choices for Rowen and help him to be successful. I really feel like we are totally on track to doing this and doing it fairly well (obviously it will come with challenges and emotions) for a couple of rookie parents!

I really am feeling beyond blessed right now that we have the luxury of flexibility and time. Fraser is just coming off of 8 weeks of paternity leave and I stay at home with the kids. On top of that his job is very flexible with time off and allows us the ability to often both be at appointments or to take last minute cancellation appointments easily. Plus we get to spend a lot of time with our kids! Not only that we are fortunate to have been able to afford some of the private stuff for Rowen and had the luxury of choosing how we want to proceed, I am aware that not all families are as fortunate as us or are possibly in different positions that make things a little more complicated. For all of these things I am so grateful.

Rowen will be getting his official Autism diagnosis within the next two weeks and then the planning will start to happen with our family. We are excited to build a team of support for him and for us that I know is going to make life a little easier around here and I cannot wait! We are all about being proactive and setting up our kids for success whatever that might look like!

So, if you have any ideas, recommendations, questions please let me know craeplain@gmail.com. Thanks for listening and taking interest in our family.

Want to leave you with a thought my girlfriend reminded me of the other day, that we set expectations for our kids that we don’t even expect of ourselves. Kids are human, sometimes they won’t have perfect manners, sometimes they have bad days, sometimes they feel so much emotion and show it inappropriately but so do we… so next time you find yourself judging try to think of that. I know I am going to try really hard to do this!

6 Replies to “A is for Amazing (and Autism)”

  1. Great read Carly. You are truly an amazing parent. Looking forward to finding some time in the next couple weeks to hang out. Hopefully a nice sunny day and we can maybe take a few photos. 😉

    Liked by 1 person

  2. This is such a great attitude and mindset to start your journey with him 💖
    There will be some tough days ahead, but so many more will be filled with joy and laughter and pride at everything that he is and what he contributes to your family and to the world.
    A is definitely for Awesome and Amazing 😊

    Liked by 1 person

    1. Andrea couldn’t have said it better! Rowan is so lucky to have you as his Mama! As my Kindergarten students once explained, you are the definition of what we all call a “Superstar Mom”— the one who will do anything and everything for their children to make everyone happy. That, and they go above and beyond like no other. You are one amazing mom Carly! Your positive attitude and love for your children is an inspiration to all moms! Thank you for being you! All the best in your amazing new journey! 💕

      Liked by 1 person

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