Written May 2016, Updated October 2017
I am writing this blog post not as a teacher or doctor, but as a Mom of a child with special needs. But my thoughts overflow occasionally into writing. And this is one of those moments! Our 8 year old was diagnosed with PDD-NOS at age 4 by a developmental specialist. His current diagnosis is high-functioning autism, or Aspergers. And he is incredibly awesome.
Below I am sharing 6 things we think about differently in our home, and a bit about how it affects our daily life.
Bryce’s sister is younger than him and competitive. Nothing gets by her when we give Bryce extra screen time for a “reboot” or other behavior modification. We have told her about Bryce’s diagnosis (we have told him too) but to be honest I am not sure she cares or understands what its means. She loves to annoy him. And in a way, I am very thankful for that. They have a very silly, playful sibling relationship.
Another common thing that tends to happen when a sibling has a diagnosis, is that you also worry for the other sibling. But a clear benefit (in my mind) is that having 1 child with a diagnosis makes the pathway a little clearer for the other child. Our daughter has had anxiety with ADHD type behaviors for years and when the time came to pursue a diagnosis we knew which doctor we needed to see. The family dynamic is already a little different than a "typical" family, so adding a diagnosis to the family doesn't feel life-altering.
One of the scariest things for me when we moved from Minnesota to North Carolina was starting over with friends. Our friends in Minnesota had grown up with Bryce and accepted our family. But starting over there is a big insecurity over “Will he be invited to playdates and birthday parties? What do they know of Aspergers? How much can I talk about it with my friends before I get annoying?” Thankfully, most our new friends are either open to understanding more, or they have a friend or family member on the spectrum and understand a bit about us.
I also think it takes time. Time investing in others, and others investing in us. Our community group through church knows Bryce quite well now, and so when he comes to community group with us it just works. Often he just wants to go sit it in a quiet spot playing on technology...and I'm okay with that. I've learned that sometimes you need to give them what they crave, and let go of your own expectations (for how engaged they should be with other kids, how much screen time they should have, ect).
“What age are the counselors? Is there structure? How would they handle a meltdown?” We tried a VBS that didn't go well at all, but we found one at a smaller church (without the crazy loud rock music) and for the past two summers he has enjoyed going to it. We also have discovered half-day camps through a local park & rec that employ teachers. It is really great for me, because I can explain his diagnosis to the teacher without fear and they get it. It gives him some structure that he needs in the summer, and it gives me a little time to work.
The key to happy camps for Bryce has been picking topics he would enjoy. I would never send him to a football camp (it just isn't within his area of interests), but he LOVED his art, lego, & cartoon camps. And the kids that went to those camps go along well with Bryce because of their common interests.
See this post for more thoughts. Vacations take a LOT of planning. Some typical questions I ask myself include: "What will he love without being over stimulating? What foods should I pack so that he doesn't shut down and just drink liquids?" It is not that I want all the decisions to be based around him. But when he is having a difficult time it affects everyone in the family. Sand, water, rock mining, places with maps: those are all good on our list!
I try to prep him with where we will be staying. For example we are going to the mountains soon, and I explained the house is shaped like an octagon. But I realized that wasn't enough, so I pulled up a photo of a similar house from an MLS listing and then it clicked for him. Him mis-visualizing how a cabin looks or what we will do when we get there can really impact our family vacation. I also know that the last day of vacation will feel "off" for him. His anxiety increases at the change, or he might be saying goodbye to friends and family. So we try to show an extra amount of grace on those last-vacation days.
We live in a very sports-oriented area. That can be a little awkward at times. We are currently in our second year of parkour, and last year he did a season of non-competitive soccer (and loved it!). We have also considered swim team for him because he loves to swim. I'm not sure how the winning & loosing of swim team will go for him, but we won't know until we try it. Our school offers clubs after school, and I've also found this a great way for him to interact with peers without it being competition focused (right now he is in Lego club!)
In the area we live in: it is expected that children will go to college. When you have a child with a neurological difference or disability you take it a year at a time. For now Bryce is advanced in math and struggles with reading and spelling (though at the moment he is on grade level!) With his aptitude for drawing and 3D visualization, we encourage him that he would make a good architect, engineer, or city planner someday. When the time comes if college isn’t in the picture we will help him find training for a suitable job.
I also ask questions I can't answer like: "Will he drive a car? Will he live independently? If he goes to college will he live at home and commute?" And while it wouldn't be good for me to obsess over these questions, I do think its good to prepare and think through the possibilities.
I just added this section (pt #7, felt it should go here!) I find myself celebrating the little victories more. "He understands his 2's times tables!" and "He loved open gym Friday night, which means we have a way to get date nights!" Other things on my list include: him learning to shower on his own, him showing empathy to others, passing the "deep end" swim test, writing in his journal for school, and making friends independent of our support.
Do you have a child with unique needs? What kind of differences do you encounter?