Our July was busy with C taking a 6 week bootcamp through the Metis-it covered everything from traditional crafts and food to writing a resume and finding a job and he got paid to do it and it was online. V took her careers and civics course for high school online (we knew we'd be traveling and opted for the online class-she'll take care of Gym next summer). H got some time to chill though and he and I did some paddleboarding.
V and I then went on our trip to WA between July and August.
This last school year was H's first year of HS. In elementary school we'd had some calls about odd behavior, outbursts, etc. When he started school I'd write a letter to the teacher each year about how to get along with him and eventually that letter turned into an IEP (Individualized Education Plan). The entire time we were kind of grasping at straws as the teachers and we shared what worked and what didn't. About 3rd/4th grade, the teachers said he should have a psychologist evaluate him. I read a book "Raising Cubby" by John Elder Robinson about a man with Asperger's raising his son with Aspergers and it was like a light bulb went off. All the seemingly random symptoms we were seeing fit into this puzzle.
In 2017 I put him in a waitlist for the region's mental health services, Bethesda (they also work with another organization here called Pathstone, which has also been vital in our journey). In 2018 he was evaluated over 3 sessions with a psychologist and questionnaires were filled out by us as well as the teacher he had in 2nd and 4th grades (same teacher who was amazing). The report came back, "flavors of ADHD and autism, but not enough criteria met for diagnosis." The teacher was amazed. So, we send the info on to the school, updated the IEP and went on our way. What we did learn was to consider ADHD because that wasn't even on our radar.
Fast forward to 2020. The world stopped and online school began. We got to see in person how H worked. It was like watching a bouncy ball. We saw the ADHD piece first hand. Around that time he also hit puberty. I've learned a lot in the last 3 years (more on that later) and puberty basically takes any smaller stuff that's going on and puts it up to a microphone. All the little things we saw before were suddenly amplified, not to mention regular teen angst.
Grades 7 and 8 we were called several times a week to come pick him up because he was basically so upset or frustrated he was yelling or staring into space. But when he'd do work, academically he was smart. He'd solve problems in ways other kids didn't. In grade 5 they were working with geometry and he put together a shape that met the criteria in the problem but the teacher with 20 years experience had never had a student do and technically it was correct even though it didn't match the answer key in the book. He even had a grade 7 teacher with him looking up the name of the shape online.
Transitioning to HS the HS worked with us, they worked with us to build a schedule, they had 3 learning resource teachers we met with several times, a social worker from the school called and recommended programs, it was a very different experience. So when they recommended we work to get a psychological education assessment done to find his strengths and weaknesses, we put our names on the lists at 6 different psychologist offices and saved up. An assessment is about $2500-$3500. You can get one through the school, but because H is high functioning, someone else with more needs would always be higher on the list and it could be grade 12 before an evaluation was done.
While we waited H started grade 9. Drama class was way harder than we imagined, working with other students was a nightmare. He threw a book at a teacher. He got so angry one day that they cleared all th students out of his class for safety reasons. He was suspended after pushing a teacher he'd had a good relationship with. The school had to come up with a "safety plan" to deal with the lashing out.
We started with our primary doctor to work on an ADHD diagnosis. Because of the level of symptoms and the problems they were causing at school, after trying all the behavior modification we could at home we finally decided to try medications. While we took him for testing and evaluation in December, we waited for a referral 3 months to a pediatrician who our doctor had good experience with prescribing ADHD medication. We tried all of them. One worked, but made him anxious when we went up in dose, one turned him into a zombie which was where we finished the first semester-racing to get 50-60 percents in his classes so he didn't fail and have to retake all the classes.
After first semester, we had done the evaluation but were still waiting on the report form the psychologist. We tried another medication that had less side effects but didn't seem to do a lot. We gave up on him doing his French requirement. Students here need one semester of French in HS (they take it from Grade 4-8) to graduate, but it's not necessary to get into university. What they don't tell you is you can get the requirement waived by the principal for graduation. We sighed with relief as we knew a) it would have been a struggle based on what we saw in Drama the first semester and b) he would get nothing out of it. He'd been taking it for 4 years and could barely have a short conversation. His brain was not taking to French. Instead we had him start the day in the learning resource room. He had the option to take an independent "life skills" class with the teacher but ended up using the time as he had 1st semester, as a place to chill out. While it would have been great for him to get a credit, he took 2 credits during the summers before high school so that we would have a buffer in his schedule if we needed it and this ended up being one of them. He used the period to get some work done from the other 3 classes he was taking and to transition between home and school.
In March, the psychologist finally came back with a 32 page report diagnosing ADHD-inattentive (he was one criteria off from having ADHD
combined, which is inattentive PLUS hyperactive-impulsive type). As well as two learning disabilities having to do with processing- Specific Learning Disorder with impairment in mathematics (fluent calculation) and written expression (grammar and punctuation accuracy, clarigy/organization of written output). The psychologist also recommended additional testing to rule in/out Autism Spectrum Disorder (ASD) or Dysmorphic Mood Disorder (DMDD).
In the report were a huge list of books to read about ADHD and I read all of them I could get from the library and learned many different methods of ways we could be working with H at school and home.
In May we had a bunch of meetings-Metis Mental Health intake, Bethesda intake, Metis School Advocate intake. In between these intakes we were contacted by a second psychologist asking if we were ready to do the psychological education assessment. I told them we'd had it done but were looking for an ASD assessment and she said they do those, so we signed up for a date in the summer and the Metis Mental Health covered all the costs of evaluation (thank Goodness!)
The School Advocate confirmed what I suspected-that our high school was doing a great job and everything they could. Our second appointment with them in September, she did do a referral to another part of their division that works with transitioning students from HS into Post-secondary school and accessing supports there.
With the second psychologist review H was finally diagnosed with ASD. None of us were surprised and almost relieved that what we'd been seeing for at least 10 years was confirmed. The next report came with even more books to read. I'd just finished the ADHD books and dove into the Autism books (and am still diving in).
September came with a visit to the pediatrician. His current meds (which he took a break from over the summer) were not causing side effects but also weren't really helping. We'd tried all the traditional ADHD meds available. I brought her the autism report and we talked about how each of the trials of meds had gone. We've changed some things and so far things are going well this time. Adding the autism piece allowed for a slight tweak to alleviate some symptoms. This week H got himself up out of bed 3 of 4 mornings and one morning, saw the dishwasher needed unloading and just did it. We are trying this for 8 weeks then we'll go back to the doctor with some surveys of his teachers. V will be joining us as we're seeing some ADHD symptoms and would like to get a diagnosis before high school. We've learned a lot about how long things take over this process!
We had an incident this week that can help explain how this all plays out. I got an e-mail from H's science teacher that he's failing class with a 32%. After his evening bath, we lay down and I calmly asked what was going on and said nothing he said would get him in trouble. After a few minutes of various ideas (the teacher? the subject?) he exclaimed, "the chair! The chair is attached to the desk and it's so uncomfortable and irritating! Also the hard back hurts my back!" I asked him what chair they use in English as I've been getting reports through the school app with good grades from that class. "It's the same chair but English is easier, so I can concentrate and ignore the chair, but science is harder, so I can't concentrate past the chair!"
Most people with ASD have some sort of sensory issues. One of the pieces of ASD is that their brain doesn't process the information they are getting from their senses properly. For instance, many people have heard those with ASD can't stand itchy clothing or tags. That's because their sense of touch interprets those items as painful instead of just irritating. Many ASD people walk around with noise cancelling headphones. Their sense of hearing interprets sounds (even the sound of florescent lighting!) as painful and irritating. Add that to ADHD where small distractions can get a student completely off topic or unable to concentrate and a chair becomes a very big thing.
The good news is a chair is very fixable. But now we are 4 weeks into science class. So I've talked to the teacher about switching chairs and H and I will be doing a lot of science work over the upcoming long weekend so he can retake a test next week. H's IEP basically states that all deadlines are flexible and work will get done when it gets done. He still has to do all the work, but being able to work around various distractions is essential to his success in school. One thing his teachers have been great about as well is being flexible with how the work is presented. When written work is a challenge, sometimes he's able to present in person or take a video at home and submit it. In computer classes there are several modules. Instead of submitting 1 & 2 he submits a harder project that covers both assignments. He's still doing the work just in a different way.
I'm working with H on self-advocating. One of the things we've been warned about university is that they have supports, but as an adult, only the student can ask for them. Parents often are not welcome. So we are working a lot with him this year to ASK FOR HELP and verbalize what it is that you need.
So that's where we are at with H. Now that we have these diagnosis I've signed up with Learning Disabilities of Niagara, the Centre for Diverse Learners (basically LDN but a little further north) and Autism Ontario. H has tried a Leaning Disabilities support group for teens and will try outings with Autism Ontario for teens this year. I've joined a support group for parents of ADHD kids that is so helpful-there are moderators that present a topic at the start of the meeting, then we can all discuss issues we are having. I'm trying the Learning Disability support group this fall to see if it also is helpful. Sometimes parenting kids like this is lonely.
So, I think we are on the right track. Are things still hard? Absolutely. But I'm hopeful that with new supports in place we'll have a good year. The next step is formalizing his IEP so that he's officially a special ed student which comes with funding and legally enforceable accommodations.
.jpg)
