living with Autism (ASD)
Definition above taking directly from: https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd/about-autism-spectrum-disorder-asd.html
I decided to start this blog post with a definition because the reality is the Autism we live with in our home most likely doesn’t look like any other person you know with ASD. ASD covers a broad spectrum of people and abilities. Just like “typical” people, people living with Autism are all unique. The definition above, although broad, gives us a starting point for what is all classified under the Autism Spectrum.
If I can say one thing we have learnt since receiving our sons diagnosis, 3 years ago, it is to accept each other for our uniqueness not try to change it. We may be slow to adjust and embrace some of this but in our own home we have 5 very unique and sometimes clashing personalities that all bring so much to each others lives. How boring would it be if we were all the same. However some of these unique characteristics can come with bigger challenges.
April is Autism Awareness month and I like to take this opportunity to educate and share with others our experience with Autism. I like to think that I share all year long and am as open about our experiences as possible but I also know as Autism has become more of our “norm” I sometimes forget to share and explain what has all gone on or how hard we are working for things that come so naturally to others.
Currently our son is 6, and this is a pretty important age for kiddos living with Autism in BC in regards to funding. Under 6, families with a diagnosis have access to $22,000 a year for specific and certified professionals and therapies or programs. I would like to add this is not “free” money and it actually takes a lot of work to even access it. I know for my very first year accessing and using funding took me many hours of online learning and even nights of submitting bills, paperwork, sending emails, etc. Like most things with more practice and experience I have gotten more familiar with using our funding but it still involves a lot of paperwork on my end. Obviously the work is worth it but so often in our society we think of government fundings as hand outs and this is not one of those cases, it has involved countless hours, some tears and a lot of hard work on our end.
For us, the last 3 years were spend researching, applying and hiring/seeing an amazing team of people who supported our whole family. These people became like family to us and helped us with developing goals, communicating to school and even working on things within our home. They were our biggest cheerleaders and supports, they came with me to any school interviews, went above and beyond at making Rowen comfortable and building relationships with him.
One big thing with Rowen is that he cannot be forced into doing anything. He needs to be comfortable and feel safe with someone, which takes time, before he will do any “work”. Anytime we would introduce a new person into his life it would take time to build that trust before they could even start working on his goals. This might seem reasonable and to be expected but here is where the budget matters. Most of Rowens team charges from $130-$160/ hour so if you are spending a couple hours a week with each therapist and you need a couple weeks to build that trust its a lot of $$$. Just like in life when things don’t work out or therapists change you start all over again, and cha-ching cha-ching the whole process sure adds up.
So Row’s birthday rolls around and he turns 6. At 6 it is assumed children are now entering the education system and a lot of the supports and programs they were receiving and using funding for are now expected to be accessed through school. In fairness I think it is also believed that early intervention has such a big impact (and I completely agree, as I think Rowen is a poster boy for the power of early intervention). Basically when they turn 6 and enter school, it is expected that kids might not need as much support because they have been learning skills from their previous therapies that will help them transition. In theory this is all sounds reasonable and good. Except depending on your needs you might not be able to easily access these resources through the public school system. Like most publicly funded programs the waitlists are long, and the services are shared through out the whole district. So Rowen would not be seeing an SLP or OT weekly at school he would be lucky to see this person once a month or less.
Wanna know the magic number we get now? $6000 thats right, it goes from $22,000 to $6000. This is a complex funding plan and there are many factors, like now a lot of his funding is being allocated to whatever school Rowen is registered with. Essentially the school will get “extra” funding as he is a child that comes with extra needs. Again in theory this is fantastic news, Rowen needs help, Rowen carries funding that will help with costs to get said help, Rowen succeeds.
The reality is all kids have needs, our school system is set up to be efficient, budget friendly and educate the majority. So lots of kids can fit into that mold, but would they be more successful with a different school model? I think possibly, but unfortunately we are working on big picture and sometimes that means individual cases get a little lost. Throw in a pandemic and additional strains on the big school system and it is an opportunity for kids like Rowen to slip between the cracks and get lost, or missed. Not because teachers don’t care or because public school sucks. I think it has more to do with the way our systems are set up, that education has so much to consider and there are many needs within a school system, budgets mean making sacrifices and in a school those sacrifices can include limiting supports to kids who might be able to excel if given the right resources.
In our school district there are 24 elementary schools, 7 secondary schools and nearly 16,000 students. That means the funding all goes into a big pot for the district and although I believe our child’s school receives the funding specific to the students attending it isn’t necessarily spent on Rowen, but instead they must determine the needs around the school. So, if you have a school where maybe a lot of kids are undiagnosed but require help his funding would be going towards getting access to support multiple kids, or maybe there is a child with more severe needs who’s funding isn’t enough to support the needs he or she has then Row’s funding could go to help support that child. I absolutely am of the belief that each child should receive what they need to be successful and a teacher who is supported in her classroom is going to be much more effective at teaching but we do not live in this “perfect” world. We are all just doing our best and like at home when we have to make decisions regarding our finances and how we can best make our money stretch and please our household the school districts are also trying to do this on a much larger scale with way more people to please.
For us we considered public school but after doing some research we knew that if we were able to give Rowen a different education that might be able to better support his needs then we should and would. It was actually a big picture decision for all of our kids because although we have one child with an ASD diagnosis we actually have three kids who we want to be given the best opportunities at school. With this in mind and seeing so many teachers frustrated with the limited resources in a classroom, we actually realized this impacted not only the child with special needs but all kids in the class. If a teacher is being pulled away by a challenging student it might mean she doesn’t have the time or resources to help a student who is maybe bored or excelling and looking for a challenge. So, in the end we opted to attend an independent Catholic school. While we do pay tuition our school is also partially publicly funded and is also supplemented by the church. Again this is a funding game, and one that is important because it means the school is operating very differently than a public school board. It also means our tuition was what we considered to be fairly reasonable.
Last year was our first experience with elementary school and it was with Rowen entering Kindergarten. It far surpassed any of our expectations. We were so thrilled with our choice in school, the open communication we had with everyone at the school including the principal, vice principal, learning assistance teacher, classroom teacher and his EA (education assistant). This was a big deciding factor in our school choice. Rowen can be easily distracted, requires many body breaks in his day (sitting still is exceptionally hard for him), he has a really tough time with fine motor skills (his muscles work very hard to write, pen to paper) and he can be very easily overwhelmed or overstimulated in busy or loud environments. When he is feeling overwhelmed he will often breakdown or go hide. This can be very hard to dealt with, often requires someone one on one with him and can be time consuming if it was taking a teacher away from the class. One thing we knew he wouldn’t have at a public school is a dedicated EA, at his independent school he would have one for as long as he needed one.
I love that our goal was to not have an EA for Rowen, but for as long as we felt it was beneficial and necessary he would have one. Rowen has come so far in the three short years since his diagnosis largely because of his own hard work but also because of all his amazing supports.
A giant chunk of his funding was about to change and that would mean we either contribute the difference ($16,000 a year) to continue his programs or find a school that would have enough supports for him and us. I think we did that as best we could! Not only did his school have amazing teachers, his teachers appear to be supported by the school and all the programs they could afford to fund. The school has an active PAC with yearly fundraisers that generated good funding, as well as a healthy church parish that help with funding when needed. I have been amazed at watching the school work so seamlessly at finding ways to make sure everyone (parents, staff and students) have what they need. It has been really cool to watch and something I hope my kids will learn as a life lesson from attending a place where this is just part of the culture. Hi school even employs a private OT to visit weekly and it was an option to have a half hour session in school (we would never receive this at public school).
So after ending last school year from home (enter pandemic) we were very nervous about how this school year would go. Rowen had adapted so well but lots of things were unknown about the 2020-2021 school year. We knew how important routines were for Rowen and also dependability and all of those things were changing quickly in this new world of ours. In addition to Rowen we had Grace entering Kindergarten and we were worried about a pandemic year at school being her entrance into elementary school. It left me researching homeschool options.
We ended up deciding to take the year and give our kids as much predictability and safety we could. It also had me back to learning a whole new funding game…. homeschool funding works a little different than traditional brick & mortar schools. So our homeschool actually has contributed roughly $11,000 towards services Rowen was already receiving. Again, not “free” money and certainly had to meet strict requirements. It has meant that our homeschool has helped fund our Speech and Language Pathologist weekly, our OT weekly and we have a private EA who works with Rowen from home 4 hours a week. This has been huge in helping have a successful year of homeschooling.
If it weren’t for a pandemic we would not have considered homeschool. However after experiencing this year it has given me a whole new vision of what school systems provide and don’t provide. I love the way we have been able to tailor the kids learning to reflect their interests, our local community, industries and ecosystems and also so much flexibility. We do not do much work from a desk, however we work from a table, outside, in the garden, on the trampoline, at the beach, on the boat… I mean school is not defined by a building or a space. We have flexibility in school hours, and even days. Why not do some school on a rainy Saturday afternoon, sun looks good on a Wednesday we can head out to a park and “skip” school that day. We aren’t really morning people so school starts a little later for us now and that works great, we eat and play in between and we see how we feel and check in with our bodies! It hasn’t been all kumbaya but we are trying to find joy in a year that has been challenging. We miss out friends and our school but we are registered for September and I am confident that the kids I am sending in September are a little more mature, little more secure and feeling prepared for the world out there waiting for them.
Overall living with Autism has been a big learning curve. The learning has been as a family though, it has taught us how to embrace and build on each child’s interests and talents. Instead of trying to make them fit our image of what we thought they would be like we are learning how to support them to find their own interests and strengths. We are all learning that not everyone is the same and that although some things we think should come naturally and easy don’t always and that’s okay. We are learning to accept when others are different than us, to not judge and to find ways to support others. It is okay to he emotional and we are learning appropriate ways to express our emotions. We are also learning ways to calm down or relax, ways to ask for and give space when we need it and just lots of overall life skills. I am so proud of all of my kids, living with Autism is something our whole house lives with and learns from and for that I will forever be grateful for.
If you ever have questions or want to chat about our journey and what it has looked like for us please feel free to message.