I have to say that we’re so thankful to Emily, the speech path that first saw Sammo.  She told us about Monarch house, wrote a letter to them on our behalf, and guided us through the early stages and gave us a lot of reassurance and helpful advice.

After we got the diagnosis, we then got busy learning about autism, telling friends and family the news, and went about figuring out the next steps.

If you break a leg, there is an established process and treatment.  You get referred to a specialist who takes X-rays and comes up with a treatment and rehabilitation.  With Autism, once you get a diagnosis, there is a myriad of treatment options ranging from nutrition, alternative therapies, behavioural therapies, diet supplements, hyperbaric chamber treatment, speech pathology, occupational therapy, etc.

In BC, we had to find a behavioural consultant, who would come up with a plan implemented by Behavioural interventionists or BIs.  A behavioural consultant may use ABA or some other form of treatment, but ABA is the only officially recognized form of treatment with scientific backing.

That said, parents are free to choose their BC, and may hire their own BI to implement the intervention, which could be from 8 to 40 hours per week!

Going back to our analogy, we are not experts in helping kids with autism, but yet we needed to make some key decisions about what direction to take for treatment.  If I broke a leg, the process would already be laid out… But now we needed to become experts on the difference between ABA, RDI, Floortime, and a bunch of other therapies… And make a crucial decision.

In the end, we found that we had to be Sam’s primary advocate and make the best decision we could.  Again, based on a recommendation, we checked out Reference and Regulate, sorted by David Loyst, a former speech path.  We just didn’t think that ABA was best for Sam, and found that r and r just made better sense in terms of getting to the core problem and would likely be a better option than having Sam sit at a table and learn things through ABA.

So we did our homework, asked our questions, and by November, had selected a behavioural consultant.  There was a lot of paperwork to go through with our family doc and the ministry to get funding sorted out, but by December Sam had started his first session…  3 months after he was officially diagnosed.

When Sammo was about 2, we noticed that he didn’t have as many words or communication as Erica at the same age. For Sam, we attributed his speech delay with the fact that he was the second child, boys talk later than girls, and he heard 2 languages while growing up, which may have confused him.

However, looking back, there were a few other personality quirks- he liked lining up his toys, spun the wheels on his toy cars, loved to run up and down ramps, and looked at his toys, especially airplanes at certain angles.

Just before his 3rd birthday, my dad suggested a speech pathologist to help Sam kick start his speech, so we looked into a) what is a speech pathologist and b) how do you go about finding one. After some searching on the web, we got some information and started to contact a few speech paths about coming in for an assessment and the possibility of working with Sam for a few sessions. It turns out that going the public route meant waiting lists, up to 4 months, so we decided to go the private route, at least for the first assessment. We found a speech path, Emily, that was willing to come out and work in our area, so we invited her out to come see Sam.

When she arrived, she had a few games which she brought out and engaged Sam with.  At the end of the session, we had a talk and Emily said that she saw enough red flags that she recommended we test Sam for autism. As a parent who knew next to nothing about Autism, this came as a shock to the system, although by this time, we saw enough to know something was amiss.

The troubling thing was that everything was ‘normal’ for the first 18 months or so.  I have a number of photos where he was making direct and sustained eye contact like a normal baby his age should.  I remember he had lots of babbling, but then there were a few signs.  First, he would be laughing up a storm in his crib in the middle of the night.  Second, he did have a few single words, and did seem to learn new words, but he never really could build on the vocabulary and form longer phrases… And although he liked being around other kids, he didn’t really interact with them or have much imaginary or novel play with his toys.

The next step in our journey was to find out how to get him tested for autism.  Again, we ran into the public/private system where the former meant long waiting lists (up to a year!!) and so it was an easy decision to go the private route through Monarch house. I remember we took a short vacation to Whistler to get away and try to make sense of all this. The hard part was not knowing what this meant and what the future holds for Sammo.  Could he live a full life and have a family of his own?  Could he attend post secondary?  Could he become self sufficient?

When Sam took the tests, it was over 2 days, first with a speech path, then a child psychologist, and finally a paediatrician.  It was hard watching him do the tests as it meant he was stuck in a small room separated from us (although we could still watch) which made him very upset.  He was asked to do tasks which we knew were beyond him, and this was tough because every parent wants to help and protect their child.

By the time it was done, we pretty knew what the results were…