Where we have been the last two months.
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
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
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
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
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