Thankful for all the little things, above and beyond

Over the past several years, I’ve become part of a very special community, quite literally. I’m still finding my way, but I’m learning the ropes of being a Special Needs parent.

As I talk to others, mainly therapists, doctors and teachers, I’ve come to realize just how lucky I am to be part of this community in the Seattle area at this point in time. There are so many resources available here, and most importantly, funding.

When we lived in California, there was so little knowledge and the limited testing we could get our doctor to refer us to, we paid for out of pocket. It wasn’t until we moved to Seattle and took advantage of Applecare Health, that pursuing a diagnosis became possible. We’d never have been able to afford it otherwise.

Once we jumped through those hoops, we were able to get into therapy, get medications we needed, and see our doctors as often as needed. I actually have a bad habit of forgetting to schedule routine dental and well child checkups because we’re at the Seattle Children’s Autism Center so often, I forget he has other doctors.

We were sitting in the lobby for our third appointment of the week, second of the day, when my son’s social skill’s class instructor stopped by to chat. I asked what she was doing, because the social skills class was such a good program, and she mentioned ABA.

ABA was only recently required for insurance to cover, and all the providers are booked solid. Even so, she was excited to share about the new early intervention programs she and others were helping to create. Though I’m saddened we didn’t have access to these programs when my little boy was small, I’m so happy that others will. Early intervention is essential.

All the programs we have my little boy in at age eight have been life savers. I can’t imagine where he would be without them.

We moved on to talk about resources and curriculum they are using, and I brought up how much I love the SuperFlex books my son’s OT therapist has been reading to him. Because they’re part of an educational curriculum, they’re expensive and hard to get for parents like myself and schools with over stretched budgets.

She asked if I’d applied for Ben’s Fund. I’d heard of it, but didn’t think we’d qualify. We don’t qualify for Social Security or DDA. I also tend to think we don’t deserve much of the assistance we get because my son is so very smart and functional. (See my previous post on Parental Guilt)

Our doctor came out at that time and jumped into the conversation. So we are now applying for Ben’s Fund.

My son doesn’t need a lot of resources, but we do need special things for him, such as a Lycra blanket that literally wraps around his bed and gives him sensory input. We purchased a swing and trampoline to help with his sensory issues, and I went through an endless number of Chewigem necklaces before I started making my own with food grade tubing and laces.

We recently got him a little digital spell checker, the old fashioned kind from the 90s, to help him with his aversion to writing. We had to get him something separate from his phone so he wouldn’t be tempted by the distraction of all the other goodies on his hand-me-down iPhone. (Which I still haven’t figured out how to set the sort of child locks and timers on that I would like to)

We got him a cheap spelling device, though there is a more kid friendly version that costs a good deal more. It helps him, so of course, I’d like to get him one to use at school, but we have to prioritize. I got him the Lycra sheet instead.

We’d also like to get him a weighted blanket, a new swing, sound canceling headphones for when he’s over stimulated, among many, many other things that would help him adapt. Though every child costs money, a special needs child definitely needs things above and beyond.

These things add up. So, of course, I’m happily making up my wishlist for Ben’s Fund.

And while I am so excited for all the ways in which this will help us, I am also very thankful that this grant is available to other people who have children with special needs.

So thank you, everyone in the state of Washington who has pushed for better funding for health care and special needs. Thank you to all those who generously donate to special programs. Those of us who need these programs are so very thankful.

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