Having a child with special needs, makes most public outings nerve wracking for me. On the outside I might seem cool-as-a-cucumber, but on the inside I’m usually anxious. Having a child with severe ASD/ADHD/SPD/Apraxia, I never truly know how Apollo will handle the overall experience.
Halloween adds a whole different scope of potential complications for us — it’s dark (Apollo doesn’t like it when it’s dark), there’s so much unknown and potentially scary costumes, unknown sounds, etc.
This particular “outing” was our first local “event” we’ve participated in since Apollo was publicly shamed at a local park, and labeled a liability to the community on social media.
I tried multiple times to record a video about said incident, but was too emotional — you can read about said incident here.
Justin and I have decided that isolating ourselves, and our children (as suggested to us by others) would be giving outside influencers in-direct control over our lives… so we took our children “Trick-or-Treating”.
– Expectations –
Apollo has always exceeded our expectations (as his parents) on Halloween. Apollo doesn’t seem to care so much about the candy, as he does the overall experience. To the best of his ability, he used his words and manners to greet each of the candy-passers; and although we had a few little bumps in the road he did really great overall.
The main challenges that we faced this year had nothing to do with the scary costumes, the weather, or anything that you would “normally” expect on Halloween. Unfortunately, the main challenges we faced had everything to do with stereotypical expectations of the homeowners (or the candy-passers):
- People expect all children to say “Trick-or-Treat” — before they get candy.
Nobody even considers that the child might have a disability that’s a preventing him from talking – or saying “Trick-or Treat”. Even with prompting, there’s no guarantee they Apollo will be able to repeat the phrase in the moment, or to the extent that complete strangers expect. When children don’t say “Trick or Treat” they are often perceived as rude, lazy, entitled, a “brat”, etc., and parents are usually looked down upon for the child’s lack of manners.
- People expect children to only carry one bag/bucket in their hand when they are Trick-or-treating. Apollo carries his Gecko Bucket around with him everywhere for security, familiarity and comfort in an unfamiliar environment. I talked about why Apollo carries around said bucket here. Despite the perception of complete strangers, Apollo did not carry around his Gecko Bucket to double up on candy – or to be greedy.
- People expect kids to act like stereotypical, neurotypical, kids — Apollo’s atypical.
– One Halloween Challenge Explained –
At the very first house we went to, Apollo held out his candy bag, and when prompted (by me) he said “Trick or Treat”. Apollo happily accepted the candy from the lady and glanced down at his bag to see what he had received; and when prompted again (by me) – he said “thank you”.
Apollo’s disabilities aren’t visible, so we often get weird looks for prompting him to say each phrase. Apollo relies on familiar words and phrases, and prompting to communicate, and unfortunately “Trick-or-Treat” is a difficult and unfamiliar phrase for Apollo. Even with prompting, Apollo often greeted the homeowners with “Hi”; a greeting that has been instilled in his toolbox of familiar greetings. People often mistake our prompting Apollo (for what happens next) as exhibiting control, rather than helping him. We have become accustomed to the weird looks and judgement.
In this incident, we got more than weird looks for prompting, we got weird looks for Apollo carrying around his Gecko Bucket (a bucket he only puts his sacred “treasures” in). Apollo, being quite literal, only held out his candy bag for candy, but this didn’t stop the lady from asking “does he really have two buckets for candy”? The tone of her voice (apparent confusion and disgust) and body language made me feel like she viewed us as greedy in the candy department.
No, he’s not trying to double up on candy, he has special needs.
I didn’t say anything to the lady, but I thought the above phrase in my head, because I didn’t want to say anything to her in front of Apollo or Athena. However, after that we left that house, we asked Apollo if Daddy could carry his Gecko Bucket for him (to prevent further confusion at future houses); and although reluctant at first, Apollo agreed to allow his Daddy to help him.
– Blue Bucket for Autism –
I’m sure some of you have seen the blue “Trick-or-Treat” bucket proposal for autism awareness. I’m sure that some are aware of the mixed feelings/controversy/reviews on the use of said bucket for autism awareness; there are some valid reasons for and against the use of said bucket, but here are my thoughts on the topic as it pertains to our life.
I feel like there is a lack of awareness when it comes to MOST disabilities as a whole, and color coordinating buckets to bring awareness for varying disabilities is likely to just muddy the waters and create further confusion; I believe that if ASD gets their own bucket, then there needs to be a bucket for each disability. So where do we as a society draw the line?
Unfortunately, there are so many disabilities out there that it would be nearly impossible for everyone to keep up with everything. I mean, there are still people that believe that individuals with autism cannot be verbal or social — so how can I expect everyone to be informed of the underlying meaning and purpose of a certain colored bucket?
Instead of muddying the waters, and making color coordinated buckets for each disability — how about we work toward changing the culture surrounding “Trick-or-Treating”? I think it would be better to pass out candy to ALL children without judgement, without expectations, and simply enjoy the moment — enjoy seeing the kids dress up (or not, I don’t care if the kids even dress up) — enjoy the visitors and enjoy the Holiday for what it turns out to be.
I know for some, this change in culture might be difficult — I know it was for me. I used to live my life setting high expectations of EVERYTHING (often unreasonable expectations), and then would be devastated when those expectations didn’t become reality. Anyone else like that? I’m not saying don’t have goals, or expectations at all, but make sure whatever expectations you set are realistic and achievable.
Apollo’s taught me SO many things over the last 4 years, but as it pertains to this post he has taught me to slow down, to live more in the moment and appreciate all the victories that DO happen — no matter how big or small.
Halloween 2019 was a victory for us!