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Ten Things That Have Exhausted Me As A Special Needs Parent

My son, the Lightning Kid, has Down syndrome. Every special needs parent's journey is different, and I've always felt that special needs parenting is pretty much like typical parenting, only with the 'volume knob' dialled up to 11. The views expressed and the experiences I describe won't necessarily be universally applicable to every situation, but hopefully they are edifying to all who read this.

    1. Fighting for Inclusion in the Classroom

    The model we have operated under, and we stand by the results, is that our child should be in the classroom with his peers as much as possible. When he struggles with completing work, some accommodations ought to be possible, and beyond that, he can be given more time to complete the work simply by sending it home where we, his parents, are happy to help. Every school year, we send the new teacher a letter that explains this approach and our son's history, strengths and weaknesses. There are best practices for compliance and behaviour management/discipline, etc. And every year that letter is summarily ignored and the first few weeks of school are spent advocating for inclusion when they pull him out to a resource room, dealing with the corresponding behavioural fall-out that happens when his access to peer models is reduced.

    It would be nice to be able to hit the ground running one year, without having to repeat this particular battle in the overall war for inclusion.

    2. Fighting for Inclusion in Extra-Curricular Activities

    My son, the Lightning Kid, just turned 11 as of this writing. Last year, as a 10-year-old, albeit a small one, he joined a swim team. The team had 2 programs, one nominally for 5-10 year-olds who were "comfortable in deep water & be able to swim on front and or back for 25m (1 Length of Pool)" and another for 4-8 year-olds who were "comfortable in deep water & be able to swim on their front and or back for 15 metres." The former group would train for 60 minutes per session, and the latter for 45. Based on our estimate of his ability and his age, we wanted him in the older group where he'd be among his peer group in age, size and ability. While his confidence in going 25m straight wasn't quite there yet, we figured with an hour a week his endurance would ramp up.

    After the first couple of sessions, the club wanted to bump him down to the younger group. We feared that mixing a 10-year-old in with 4-year-olds would be demotivating and discouraging while curbing his training volume to 45 minutes would result in slower improvement and argued our case but ultimately relented. He would go on to compete in a couple of their swim meets, and he wasn't the slowest swimmer in several events including breast-stroke. This sounds like a happy ending, but one has to wonder if a club that purports that they "believe that everyone can benefit from the pursuit of excellence, regardless of their level of swimming" would have put a kid without a specific special needs label of Down syndrome through the same obstacles. Colour me skeptical.

    Here's some footage from one of the swim meets:

    3. Re-fighting Old Battles for Inclusion in Extra-Curricular Activities

    It was a year later, and we re-registered the Lightning Kid for the swim team. Shortly before training had to start, we were informed his swimming level wasn't high enough to be able to complete single lengths of the 25m pool unassisted, and they wouldn't be able to accommodate him in the pool - they'd refund our registration fee, and he'd be welcome back when his swimming had improved. There had been no word of this at the end of the previous season, nor prior to registration. The club had evidence that he could complete a 25m length, from his race results, and we even shared our video of him doing so. In that video you can see him finish faster than the athlete in the lane next to him - was that athlete rejected from the club? It was extraordinarily difficult to find alternate arrangements for swimming lessons, but we managed to book an expensive, private lesson. The coach of the new swim school was so impressed by his ability, he invited him to join his group lessons, which had been listed as full. We would have been happy with this, but the new school did not have competitions, which was what my son wanted to do. After a couple of weeks, we managed to book a 're-audition' for the team he had already been a member of - and he had his first session yesterday. Even battles we've won don't stay that way.

    4. Assessments

    For the Lightning Kid's school to get government funding, their special needs students need formal assessments to designate them as such. This always feels superfluous to us, as Down syndrome is biological and genetic, and not something a human can grow out of. Still, paperwork is necessary when dealing with official channels. The trouble is, the assessments are performed during school hours - resulting in more pull-outs from the classroom. As parents, we also can't vet the professionals doing the assessments, nor see the reports before the school does. If the assessments are performed under less than optimal conditions, like under a time crunch, or if he's having an off day, the report won't reflect his abilities accurately, and it can lead to interventions that hinder the inclusion we fight so hard for.

    We opted to undertake these assessments privately. We have the financial privilege to do so, and I need to acknowledge that, but we're not really that much wealthier in time to get these done - rather than sacrifice school, we sacrifice our self-care and the Lightning Kid's extra-curricular activities to get this done.

    Then there are the results... what can a physiotherapist describe in terms of the gross motor deficiencies of a kid who can do cartwheels, martial arts, swim, bike, run, climb, etc.? The speech therapist said his "expressive and receptive language were informally assessed, as formal assessments are not normed on this population." (The Down syndrome population).

    5. Advocating in Social Situations

    The Lightning Kid was playing at the park. He was interacting with some girls and before I knew it, one of the girls' mother was asking me if I was his parent and explained to me that he had been spitting in her daughter's face. I apologized and removed him from the park. It was only as we were walking away that we realized how implausible the story was - he can't really spit, as in expectorating, much at all. It's been a challenge when it comes to brushing his teeth, there's a lack of oral motor control that makes it hard for him to expel the used toothpaste. He might have had some spittle fly out while speaking, or possibly have blown a raspberry, which is easily avoided by simply moving away and creating space. But we're so paranoid about the "otherness" of his label, and we're hyper-sensitive about being perceived as being the problem when kids have a disagreement that we apologize instead of advocating for him. And there's the added bonus of feeling guilty about it afterwards.

    6. Defending Mischief

    The few times there have been problems at school, it usually boils down to pretty garden variety mischief. Sometimes he's done something not quite age-appropriate, sometimes it's a situation that several kids have initiated, then escalated, but only the typical kids were able to stop before getting caught or use their advantage in expressive speech to shift blame.

    In school or any structured environment, rules do need to be followed, and we don't expect exceptions for our son. Still, we know he stands out due to his label and diagnosis, and there's a certain amount of interpreting mischief as a symptom of his disability rather than the kind of mischief kids can get up to. Indeed, when his typical peers engage in similar behaviours, the calls home are briefer and simpler.

    7. Down syndrome Isn't Autism

    I fully support the Autism community. They have a lot of the same struggles that the Down syndrome community does, so there can be a kinship there, however, Autism diagnoses are on the rise while Down syndrome is becoming less common (due to pre-natal testing and termination), so the general population seems to see most intellectual disability as Autism. The interventions and tools for Autism are often ill-suited to Down syndrome, and sometimes people expect problems like sensory issues that aren't there. There are individuals with a 'dual diagnosis' who have both Autism and Down syndrome, and there are also individuals with even rarer disabilities - the parents of these kids probably have it even harder. Still, having to re-direct professionals with good intentions and keep them from trying to fit square pegs into round holes can be draining.

    8. The R-Word

    Thankfully, this is becoming increasingly rare, but when I do encounter it - and it's especially frustrating to hear it in a professional environment - I feel like a bit of my soul has been sucked out.


    9. Seeing The Toll Ableism Takes On Him

    We've noticed as he's developed into a pre-teen, that the Lightning Kid is a people pleaser. There are times when he gets plenty upset and can scream and yell with the best of them, but we're noticing a trend where he tries not to make waves. A lot of parenting can be wishing for more compliance, but when you sense your kid is glum, and he can't express the complicated, nuanced emotions he might be going through as the only one of his kind in his peer group, it can break your heart.

    10. The Monotony

    There's a common thread running through these examples, where the world isn't properly built to accommodate our son's differences. Most of these examples are simply variations on a theme, and some are outright repetitions of the same struggles simply exported into other environments. Half the examples come from the last 40 days. These challenges will continue to repeat, and sometimes I put these stories out into the world, in the hopes that the world will change a little to make space for my son.

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