Usually the Parent Perspective feature addresses experiences at sensory-friendly programs, or spaces that are not specifically geared to children with special needs but can be pretty welcoming anyway, either depending on the needs of the child or with modification. To make programs and places that aren’t geared to my kids more friendly to them, we tote around a “toolkit” that includes mostly fixed items (fidgets, gum, a water bottle, writing implements and a notebook or pad of paper, coloring or activity books, and, aspirationally, headphones, but those seem to go missing so we have a backup pair that lives in the car, which also go missing ALL. THE. TIME.) and rotating items (current favorite books, snacks, maybe a deck of cards or portable game like Spot It.). Sometimes the tool kit saves us, sometimes it gets ignored. If we don’t bring it, it’s a good bet we should have.
I have noticed more questions and comments here and there from both of our children that make me wonder whether we need to address the topic of the D word. Or D words, more accurately. Both of our kids have Diagnoses. There is a cocktail. And for those conversations, I think we need a different sort of toolkit. Autism Speaks recently shared an article from The Mighty on the topic of how to have a conversation about an autism diagnosis. The advice can be useful for starting a conversation about any kind of diagnosis, not just autism. PBS separately enlisted a panel to provide some advice on the topic. UCP provided guidelines, as well (geared by age and whether you are speaking to the child or to someone who does not have a disability). There are also a variety of books on the subject. Some of the advice is conflicting, which isn’t entirely surprising. We have a book geared to kids on explaining special needs, which we have not used, and we are on the lookout for more. My impression is that the one we have sort of starts off from the perspective that there is something “wrong” if there is a diagnosis, or at least that others will think there is something wrong with you if you have one. I absolutely do not want to give that impression, and I don’t want to utilize a book that allows the impression that someone else’s misunderstanding defines my child. I think we have to find our own paths as we figure out how to proceed.
The whole topic is still wide open for our family, but the issue is growing, and needs to be addressed sooner rather than later. With every little (and big) question from either child, it seems like there is a bit more urgency. For now, we are putting together our own toolkit. It may or may not include a book, or a visit to one of the many sensory-friendly programs we tend to frequent. It will certainly be focused on promoting positivity, support, empathy, strategies and tools. I can never understand what either of my children feels precisely, but I can always aim to support them. I can always be on their team, and let them know that I can help them use their tools and strategies, and help them come up with new ones when the old ones don’t work. I can make sure they have input and ownership over their own services and paths as they grow. I can cuddle them or leave them alone when they are overwhelmed, at their direction. I can remind them that they have many strengths. I can tell them that they have value and are important. I can acknowledge their frustrations rather than minimizing their emotions and challenges. I can be a fierce advocate and cheerleader. I can listen. I can love.
Shoreline Special Parents 