Pictured: Robin and her boys
When you look at this photo, what do you see? Maybe a beautiful family enjoying a fall morning. What was taking place was a photographer trying to get a picture of my boys holding hands. I had to jump in and show them what we wanted. I had to open their hands and fingers and have them interlock them. Everything needs to be displayed or taught.
Every year, there are the same struggles and sometimes new struggles. Some years, there are big accomplishments and joys to celebrate, and some years, there aren’t. As a mom with two boys with significant autism, it’s hard, especially in the years when there are more struggles and less to celebrate.
We are in this season now. My oldest son is now 17 years old. We have had some good years, but this past month has been exceptionally difficult. We have been experiencing unexpected behavioral challenges with no rhyme or reason that we can see. He is also non-verbal, with some speech but very limited. I can’t imagine being 17 years old, unable to communicate what I’m feeling and what I need, and often not even knowing what I want or need. At 17, almost 18 years old, I moved two hours away to go to college—such a difference between my son and me.
My boys have grown up in the same house, with the same two loving parents, with Sunday dinners with extended family, and everything else the same. We sometimes go to a new restaurant, and the boys occasionally get new ABA or speech therapists or doctors, but overall, our lives are boring and predictable. That is one of the most challenging things about autism: the unplanned for no reason changes. We are working through as best as we can with his school team and home ABA and neurologist to support him best. We are always planning the best that we can.
What we have been able to plan for him and his brother is establishing a special needs trust, STABLE accounts, and the start to other related financial and legal needs. We know they will both need lifelong care from us and caregivers to help us along the way.
Our family struggles are like many autism families that I talk to every day. The Autism Society of Mahoning Valley wants to help families with more needs. Our inaugural Sophia’s Gift Wine and Chocolate Dinner on February 16 is the kick-off fundraising event to start a new fund to do just this. We hope to continue to educate families on legal and financial needs for their families, help them financially with the costs of these often costly services, and establish an emergency grant fund. Join us and help to make this dream a reality!
I always say that most autism parents aren’t able to work or are unable to work to their full capacity. Not because they don’t want to but because their children’s needs require experts and expensive care. If they don’t have family or friends that can provide care so a parent can work, then they need to have a high-paying job to be able to. Or, as most do, they work part-time instead of full-time or if married with one income instead of two. This isn’t just until the child is 12 years old, but for many of us, it’s forever or until they move to a supported caregiving home.
Together, we can help bridge one of the gaps for autism families to ensure more families have needed professional legal and financial services. Go to our website to buy your tickets or to sponsor today – https://autismmv.org/sophias-gift/