Tag: autism

living with Autism (ASD)

.Reading time 23 minutes.

What is ASD

(Autism Spectrum Disorder?

ASD is a neurological disorder that affects how the brain functions.
The exact cause of ASD is not known.

The way ASD affects an individual can vary a lot from person to person.
It depends on how many symptoms a person experiences
and how severe each symptom is.

A person with ASD may find it hard to connect with other people.
They may:
· have difficulty communicating
· have difficulty with social situations
· repeat certain patterns of behaviour
· show interest in a limited number of activities and interests

These behaviours can happen at school, home or work.  Having ASD can greatly affect everyday activities.

Because no one person with ASD is the same, treatments and therapies are based on each person’s needs.

Definition above taking directly from: https://www.canada.ca/en/public-health/services/diseases/autism-spectrum-disorder-asd/about-autism-spectrum-disorder-asd.html

This boy loves all the soft fuzzy feeling fabric. He has his own style and loves to show it off.

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.

Took this picture today. He had been to OT this morning with two of his best buddies
and is refuelling with a smoothie before his EA arrives and they do some school work.

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.

Birthdays were so hard, Rowen would always be so excited for them but a big party was overwhelming
and he would often cry when people sang happy birthday to him.
We are learning to change up the parties (pandemic birthdays have been his fav)
but he is also learning to prepare for the singing.

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.

First week of kindergarten and all smiles. September 2019

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.

Pre pandemic times Rowen would sometimes get to bring his sisters or cousins to OT and it was a highlight for all.

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.

Living with Autism may have been a shock and an adjustment but we wouldn’t change a thing and love this boy!

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.

the “magic” of beginnings.

.Reading time 10 minutes.

Over three years ago we started a journey with our family that we could have never imagined. Our son was diagnosed with Autism and we began seeing therapists in Richmond. One of our main therapies was ABA, it was a therapy we were not familiar with and we were struggling to understand. Desperate to get help we made the tough decision of choosing a program that involved a commute to Richmond several times a week.

Rowen was so young when we started going to ABA. Lots of tough days, but now looking back I don’t remember tough days. I see how far this boy has come and how capable he is.

Over the last three plus years there were days I wondered what we were doing loading three little ones up to drive to an early morning session and one or more child would fall asleep on the way there, or trying to kill a couple of hours in Richmond unsure if we had time to come home before picking Rowen up again. However looking back over the fastest three years I cannot imagine not having these services in our lives. I say ours because it has been an amazing learning experience for our whole family.

At the end of July we had our last day at our ABA program and although we knew this day would come COVID helped to expedite the process. Unfortunately the program that has brought us so much success and joy, over the past three years, has closed its doors. We are so sad to see such an amazing resource gone.

Post Covid Lockdown when we were asked to come back as one of the first families, this boy was so excited to be back to one of his favourite places. Funny how you don’t notice the change but somewhere along the way drop offs became easier.
Running into the program not away from! This is huge (and a good reminder that we will get here with our new activities).

Rowen has left the program with a better understanding of his emotions and those around him, techniques to use to calm himself or others down when they need it, ability to ask peers to play and take turns and even how to win and loose. I am confident the skills he has learned from Bounding Higher he will use for his life and for that I will forever be thankful.

I am grateful for what this program has all brought to our lives in terms of growth and learning. We have met so many amazing people. I know with growth will come change and outgrowing things but it still feels bittersweet to be moving on from a place and people who have been such a big part of our lives.

During the same time this change was happening I started to consider what the school year would look like for Rowen, Grace and really our whole family. With a lot of contemplation and research we opted to take a year of homeschooling. I spoke with anyone who would talk about the topic but I also went to some of our main supports and people whose advice I respect and admire. Not only do I feel these people have lots of credentials and experience in the education and psychological field but they also know our family.

With so much uncertainty and with the loss of our ABA program (and also our SLP because we received this service through the same program) we decided to attempt a year of homeschooling. We had a lot of reasons for going this route and most are unique to our family. One of the main reasons and benefits to opting to school from home was if I registered us with a Distance Learning Program I gained access to funding that typically would go to our school. This funding could help us hire a new ABA and SLP and start a new program. I was so excited, really seeing the results of the last three years I knew Rowen had more he could learn and we had more we needed before saying good bye to these therapies. (***When kids with Autism turn 6 they go from $22,000 a year of funding to $6000 so I had been worried about December and the loss of funding we knew was coming, we currently spend every penny and then some out of pocket). Accessing funding was a big incentive for us.

My first road trip with these three, and we made a stop at the waterfall. This transition isn’t just scary for the kids but for me too! However when we realized we could do it (and had fun watching waterfalls), it gave us confidence and hope.
Some transitions have been fun and easy like lazy mornings, no rush to get out of PJ’s and new treasures like Orbeez.

Fast forward to now, we have hired and started with two new therapies and therapists. Both companies are amazing and we are excited about working with them and the unique programs and goals we have come up with. However what I forgot to account for was how hard Rowen finds transitions, new people, new routines and expectations and unknowns; beginnings of something new.

The past week and a half have been challenging. Our kids have been so resilient during this whole Pandemic. During the summer we have had the ability to keep things as “normal” for them as possible and have also spent the last 4 months making things as much fun as possible. None of us have had big worries (I mean besides the obvious ones that come with living through a pandemic). We have had somewhat reliable/consistent work, safe housing, good food and access to some of our favourite places (beach, ocean, boat, farm etc). We have really been fortunate.

Tea on Tuesdays was one transition that was met with no resistance.
More time to bake and have fun in the kitchen has been a perk of our new schedule.
Learning new skills with Dad, like pickling! Not all learning takes place in books:)

Fall is here and has brought with it the reality that no matter what Fall brings we cannot isolate ourselves forever. We knew we would have to return to the world eventually and that it would look different. What I didn’t consider was the growing pains we would have along the way. I am so proud of Rowen (really all our kids) and his (their) ability to communicate his frustrations and feelings. However I am also tired and low on patience. The start of September has been a reminder to me to ask for help when I need it, take time for myself, take time to organize and prep and it makes for a better day and don’t be afraid to adjust expectations.

This coming week I am hoping to put all these reminders into action and start off feeling relaxed, supported and organized. I know that the more we go through the schedule the easier it will get. For now we are gonna enjoy the weekend!

As for the homeschooling part, that has been the easiest transition to make, and one the whole family is loving. Like all new things, we are working out the kinks and figuring out our rhythm but overall I am loving homeschool and surprised at how natural and “easy” this transition was. Looking forward to the fun field trips we have planned for the next few months as well as the group of homeschoolers we have met and are learning with.

Can’t wait to sharing our adventures with everyone and come back to blogging about our family! This may be the end of our old and familiar ways but it is the beginning of something magical.

Start of School Reflections

.Reading time 11 minutes.

With a new school year, and a fresh start for Rowen because we started a different preschool, I have been doing a lot of reflecting at the difference a year can make. I mean I know what a difference a year can make. I have had years of huge loss with family and friends passing away, I have had a year of divorce and going from married to single, and I have had years of going from single to in a relationship and becoming a mom. SO many changes, in sometimes what seems like short time frames, but when I look at Rowen and the progress he has made in the last year I am wowed and inspired by my son and his amazing attitude and hard work.

Sometimes we are so close to things that we don’t always notice changes or gradual progress but in the case of this year I can’t help but notice the changes.

Last year I had a very frustrated, slow to speak, emotional boy who was upset almost every drop off at school. He was not potty trained and to be honest it was on the bottom of a very long list of goals, he had not participated in a circle time, was an independent player and didn’t seem excited or happy about school. He was also prone to have meltdowns and was difficult to settle, plus snack time was challenging.

Fast forward to this years first month of preschool and we have a verbal potty trained boy who asks to go to school on Saturday because he loves it so much. The teachers mentioned he spent 15 minutes participating in circle time and made a friend with a boy from the older class. When I went to pick him up he was playing with two other kids and he is loving his therapies and has made a friend there as well who he asked to have come over and play. His meltdowns have changed and are more like age appropriate tantrums that are very infrequent. After his first week he is not only enjoying snack time at school but also stays for lunch!

Sometimes I look at these things and think that they are not really a big deal, kids grow and learn and develop. This is how they are suppose to act. But then I think back to all the research I did, learning our whole family did, the appointments we went to, money we spent, referrals we needed and think this is not just your average kids learning and growing in a year.

This is a result of lots of hard work from Rowen, a team of people who have supported not only Rowen but our whole family and a group of friends and family who have been amazing! It has meant getting help sometimes for the girls to have child care and leaning on others.

We have truly learnt what they mean by “it takes a village” and about who is in our village and how well they showed up (or in some cases didn’t). It has been amazing, eye opening and in sometimes disappointing. We had hoped for more involvement and support by some, but it is others who’s support surprised us that really sticks out in my mind.

My grandparents went above and beyond to research and learn about Autism and where and what Rowen is doing for therapy as well as adapting things they do or give him with his best interest in mind. Not only did they learn but they shared about Rowen and even a friend they volunteer at the Thrift Store with emailed with an amazing therapy idea (which my grandparents offered to pay for). It isn’t so much about the money but when you realize how much effort and time someone has put in to learning about something important to us it really makes you feel loved and supported. Plus Autism is hard for younger generations to grasp, it is often super hard for older so to know it was my grandparents making such an effort is really cool.

My Uncle who is also one of Fraser’s good friends often asks how he can best support Rowen and always makes an effort to connect and play with him whenever he sees him, which has helped make him one of Rowens favourite people (the boat and the motorcycle help too).

The list and examples are endless but sometimes when I am frustrated that other people have grandparents that do childcare weekly, or have family who does weekends or even weeks so the parents can go on vacation or when I hear about family members paying for kids activities, etc it is easy to feel envious. However, in a moment of reflection, sanity and clarity I realize how meaningful and plentiful the support is that we get from our family and our friends. Support shows up in so many ways too… my mom often takes our laundry and returns it clean and folded, drops off home cooked meals ready to go, takes time off work to babysit and even went to tour Rowens centre for therapy and meet some of his therapists.

It’s funny how amazing and important Rowens team has become to us. These are paid professionals who really are above and beyond what we could have imagined for him. We see Keith from Little Buddies for OT and Megan, Rebecca, Declan, Erik and Natasha from Bounding Higher for SLP, BC and BI. This team has been a dream team from Day 1 and I truly believe without them we would not see as much progress as we have. If you would have told me a year ago this list of names it would have meant nothing to me and I certainly would not have believed they would all play such an important role in my sons life. They are so much more than paid professionals to Rowen and to us. I mean even our extended family speaks as if these people are a part of our family! They will never know how much they meant to us all.

I know this year has been one of big learning for our whole family and I am proud of all of them. I hope that whatever your September this far has looked like you are able to read this and feel some hope. Hope for possibilities of what your next year could look like or even a reminder to see how far you have come this last year. My biggest fear for myself or my family would be to stay the same so to look back and know lots has changed means I am living the life I want to live. With growth and change comes amazing things. Obviously there will always be growing pains but I like to believe the end result is worth a little pain.

As I look through pictures from the last year I am reminded, first how quickly we forget the hard stuff and second how far we have come. I could have never imagined taking my kids camping on a week long vacation with 8 other families. Last year I reached a point where I just avoided being around other families all together, we had to decline Birthday parties because it was hard to know how Rowen would behave and it was difficult on us. Just remembering the embarrassment or frustration we would have in certain social situations and thinking to where we are now and the confidence I have as a mother, but mainly because I have more trust and faith in Rowen and his abilities. This is just one example but there are many changes I know in our family that if you had asked us a year ago we would have never believed possible.

I am proud of the work Fraser and I have done to get here as well and the sacrifices we have made. Honestly I am tired, emotional and feeling a little of the September overwhelm but more than that I am smiling because I can see our hard work paying off in so many beautiful ways. I can also see my expectations and mindset changing about what’s important and what’s not and I like the “new” mindset.

Where we have been the last two months.

.Reading time 24 minutes.

Lately I have been struggling with staying focused enough to sit down and write, staying awake while writing and finding a topic that I want to write about. I sit down and start to type and my mind is in a million places, I am tired and I have too much to say so I stop. However I have had one thing that has taken up a bit more of my time recently and that is Autism and learning about how it works and what our family is doing to make it a normal part of our lives.

Rowen my son was diagnosed with ASD (Autism Spectrum Disorder) in February and since then we have started to receive Autism Funding from the government and hired a BCBA to start an ABA program as well as an OT. Mind spinning yet? Mine sure was, all these abbreviations and how these programs work and how I use funding is all very new to me so I thought for those who are in similar situations or for those interested in what is happening in our life I would try to explain some of it and what I know and have learnt so far. I hope it is mostly correct… Lol, I am still learning and some of this is complicated to me.

GETTING A DIAGNOSIS

So first getting a diagnosis. For us this came as a surprise. Rowen seemed like a Neuro Typical (NT) child (this is one of those abbreviations that I didn’t know but I now see lots in chat groups with ASD parents).

Rowen was a little rough with his toys, had a few quirks (things like he would tense up and apply pressure to the point of sweating). But we kinda wrote it off as shy and unique, we figured he takes after his dad and possibly would find out he has ADHD. Then we started preschool and the transition didn’t go as smooth as we had hoped. By November the teachers had similiar concerns to me with some additions of things I hadn’t noticed.

So, the steps for us to getting a diagnosis looked like this:

1) Referral from family Doctor to a paediatrician.

I am not sure exactly how it all works but I believe every child is entitled to have a paediatrician but you need a referral. Both Rowen and Grace started out with a few minor complications so they had paediatricians from birth but Eleanor has never had one. What I did learn though is even though Rowen already had a Paediatrician to have a full developmental check up I needed a new referral. Each time you go into your Paediatrician you have a full 6 months before you need a new referral but for each different issue/ illness/ disorder/ etc you need a new referral. Seems like a lot of paperwork and a bit of a waste of time but it has to do with the way doctors are paid and the funding, etc.

2) Visit Paediatrician and have a list of your concerns as well as any other “professional” opinions.

In our case I had an initial visit and was kinda brushed off as my concerns seemed like typical toddler troubles. The next week when I went back in with a list of concerns from the preschool teachers it was taken very differently. I think it makes a difference to have a few opinions and observations not just the parent.

3) Have paediatrician refer you to Public or Private Assessment and do Assessment.

So here is where it gets interesting, there are two types of assessments. I believe the process is the same with both but we went the private route and never even considered the public so I am speaking from a purely private perspective.

In BC the government will cover your child to be assessed, but there is a wait list for this assessment. When we were referred they were guessing the wait list was a year but I was hearing lots of feedback that people waited the year and then waited up to 6 months more so totally 12-18 months. The issue with this is that children under 6 who get a diagnosis with this assessment receive $22,000 a year to be applied towards therapies and some equipment. So, beyond the fact that I wasn’t willing to wait to hear what an experts opinion was on my son it made no financial sense to me because once your child turns 6 the funding becomes $6000 a year and Rowen was 3 years old and I wanted to receive as much money as we could.

The other option was a private assessment. These assessments consist of a Psychologist, Paediatrician and Speech & Language Pathologist doing three different sets of evaluations. For us it included parent interviews, child observations and a few different standardized tests. At the end of it all each professional gives a written report of their findings as well as a diagnosis (or not). We were referred by our paediatrician to Monarch House in Burnaby. I didn’t do much research besides looking up Monarch House and then going in for a complimentary consultation. I think the consultation is a great starting place and was very thankful for that. I liked all the professionals we had and appreciated their opinions and had no issues with Monarch House. Since completing the assessments I have now seen how many options for private assessments there are and have seen some negative feedback about Monarch. I have also heard they are the most expensive private assessments and if money was a concern than maybe I would suggest looking around. In totally it was about $3500- 4000 for his Assessment. It consisted of one consultation appointment that Rowen and myself went to and then three days of actual testing.

We were told at the last day of assessment that Rowen would have an ASD (Autism Spectrum Disorder) Diagnosis and they would follow up in 1-2 weeks with all the official paperwork and next steps.

4) Apply for Funding

Next step was contacting your local Ministry of Child and Family Services Office. They will ask you to email or send in copies of your three reports from Psychologist, Speech and Paediatrician as well as a signed copy of the Autism Application. I think that was it but my social worker from the Ministry was great at listing all the things I needed to send in and your funding starts the month you apply so if you apply March 20th the funding should be good as of March 1st. Funding years are child specific and based on the date of your child’s birthday. This will all be explained to you in your meeting with your social worker. Once your funding is accepted you are mailed a copy to sign and mail back to Victoria. Then you can spend! You are responsible for tracking and decided the amounts you request to be put aside for each therapy or service provider.

5) SPEND WISELY

So after the diagnosis and funding is all in place things get hard! This was by far the most overwhelming and difficult part for us. I think the thing is it is all new to us and there are so many different programs and therapies we would like to try. There are many challenges I have faced with trying to make a decision on what is best for Rowen while still considering our whole family life. Reality and waitlists are some of these challenges.

Reality is one thing, where are they located and can I physically commit to driving and commuting to programs plus is it fair to the rest of our family (like we cannot spend all our time, energy and money on one child’s programs at the cost of our other two kids).

Waitlists are another challenge. Maybe you find some programs you want to do but can you get in? And does the times they have available work for your family.

For us we have had no prior supports from any professionals so it is all new and had no where to start for guidance or recommendations. We had heard and been told you will want a BC and you will want to do ABA, we didn’t even know what that meant.

My biggest suggestions is ask a million questions, rely on feedback and word of mouth suggestions from friends, family and other parents. But also know that no two kids or two families are the same so what works for one may be very different for another.

THINGS WE HAVE LEARNED

So what have we learned this far…

ABA is Applied Behaviour Analysis is a theory and way of teaching. It uses analysis of how people learn behaviour and applies them to teach or train behaviours we want, or even to stop behaviours we don’t want. One example is encouraging behaviours by using positive reinforcement. This is simplified and my interpretation of ABA, but there are lots of articles and information on ABA as well as different approaches.

Not every ABA program is the same. Some have more flexibility and all have different policies.

Ask questions like

  • Can you cancel the program at any time or is there a policy for notice (like you must give 30 days notice)?
  • How long have your BI’s been with the program? What kind of staff turn over do they have?
  • What happens when your child is sick, for holidays or vacation time?
  • Do they allow you to pack a snack or lunch?
  • Do they work together with other programs? ABA, OT and Speech. Can you add on extra of any of these that your child may be needing?

For us we ended up following up on a friends referral to check out Megan MacKay and I am so thankful we did. Rowen has started ABA just twice a week to start at Bounding Higher. His BI is a male which I thought was pretty cool, and seems to have already developed a really great relationship. I really love their space (its big and bright and clean), I like the way each child is one on one but they do have some interactions with the other kids. Plus they are willing to work together with the OT Program at Little Buddies, which is where he starts in May once a week for an hour before his ABA.

All of our therapies are located in Richmond at the Pacific Autism Family Centre (above pictures are from the Center in Bounding Higher) and it is amazing. They have quiet spaces I can sit and read or whatever while Row is in therapy, they have a big lending library and lots of games, etc as well as a nice little gift shop so you can support the building and all the amazing programs it is home to. If you have not checked it out you most defiantly should.

I never thought I would have to be so budgeted but we definitely know we will surpass that $22,000/ year amount of funding and be out of pocket for some expenses so we want to make sure we are being wise in the therapies and treatments we pick and the people. For this reason I have included the hourly rates that our professionals charge (on average or recommended rates) just to give you an idea of what we are looking at. It was surprising to me at what these programs add up to be (a couple of thousand dollars a month!). So as great as the funding is, for lots of families this is a very difficult and sensitive topic. Talk about one of your most important investements. Any decision around big spending is always difficult but when it comes to spending on your kids its probably the most important thing any of us will ever have to do.

WHO works with Rowen and what do they do?

So first I should start off saying that we use our Autism Funding to pay for these people listed below. However for children under 6 you must employ people and businesses that are found on the RASP (Registry for Autism Service Providers List). The list is really a great place to start your search when looking for any of these professionals. Here is my interpretation and description of what each professional does. I have gone and had consultations with more than just the people we hired, keep in mind these people spend a lot of time with your child (and you will also develop relationships with them). So as easy as it is to think I will just hire whoever is available or maybe closest proximity to me I do encourage you to do a bit of research.

BCBA Board Certified Behaviour Analysts

$130/ hour

This person is the one who oversees our BI and manages our ABA Program. They may not directly work a lot each week with Row but they are observing and definitely the person our BI would refer to and have to report to.

We have chosen Megan MacKay at Bounding Higher as our BCBA (and she is also an SLP). I was told that BCBA’s can be hard to find or that they have long waitlists so I do feel extremely fortunate that we found her. I like her philosophy and holistic approach to ABA as well as her straight forward communication with us.

This is also one of our highest paid people on Rowens team, so this is a person you want to be prepared to ask questions at meetings and utilize their time wisely because their time adds up fast.

BI Behaviour Interventionist

$25/ hour

This person is the person working directly with your child and implementing the plan you BCBA has laid out. I definitely think they are an amazing resource to teach or train you as a parent on techniques they might be using and having success with. Make sure to ask questions and develop a relationship with your BI! Our BI was picked and provided for us by Megan and Bounding Higher.

OT Occupational Therapist

$120-160/ hour

Occupation therapists help to develop life skills (such as feeding, hygiene and dressing) and in our case we are seeing an OT for help with sensory related things like self regulation and organizing behaviour.

Sensory is an interesting and difficult area for me to understand. Our family has asked lots about it and I don’t feel I have a great understanding of it yet to be able to explain to others. I do think my son is searching and seeking sensory input… he likes things like spinning and swings, loves jumping, deep pressure and doesn’t like things like lights on, clothes specifically tags, shoes and socks or busy crowded places. We are starting to learn things that help relax him and organize him so he can be calm and have better attention.

Defiantly very interesting and if you want more info please look online there are many great resources and if you know Rowen you will read a lot of these things and think “WOW!” because some of the articles sound like they are actually describing Rowen.

I would say this far OT is Rowens favourite favourite favourite activity and therapy. It has been all about play and observing and learning what he likes and doesn’t like and he loves it. We have been waiting to get into Megan Eastwood in Ladner as she came extremely highly recommended, she is close by and I happen to know and love her family already, plus one of my besties (who is an OT) just started to work with her. So it seemed like a natural fit but so far we have only been able to get in on a two day two appointment over spring break, so nothing consistent is open yet to become a regular client. With that in mind we are starting with Keith at Little Buddies in May. I just met him this week and am very excited for Rowen to start because Keith has also come highly recommended and I have a feeling Rowen is going to thrive here.

I wish we had unlimited resources because I would be putting in a sensory room in our house and would be hiring these amazing individuals for a couple sessions a week. I love both Megan and Keith and would want to do as much OT as possible. This is when the hard part about where to spend your dollars comes in. I don’t have pictures of the OT’s we see sensory rooms but this gives you an idea of what they look like and why Rowen loves them.

SLP Speech and Language Pathologist

$130/ hour

SLP’s specialize in working with language development but may not have much experience directly related to Autism and language development. If you have chosen one off the RASP list then they must have at least a year of experience with Autism.

I hope this has helped you to see a little glimpse into our life and what we have been busy setting up and learning about as well as gives you some tips if you are starting your own journey with a child on the spectrum. I am happy to answer any questions or chat if you need to, please just message:)

The support I didn’t mention was the numerous friends and family members who have been amazing supports with babysitting our other kids while we have had many appointments, sending interesting articles or even just taking an interest in what is going on. We have been extremely blessed with our friends and family! Read More

A is for Amazing (and Autism)

.Reading time 20 minutes.

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!