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Don’t Ring the Doorbell, and Mark Your Lifelong Calendar for June

One of the first things I tell a new direct support professional interviewing to work with our family is to not bother ringing the doorbell. Just come on in and join the family.

My twins, Isaac and Samuel, have had Medicaid Waiver services since they were 7 years old. They are now 22. While some staff stay with us for multiple years, the average length of employment is between 6 months to 2 years. Multiply that by the number of staff we have on our team at any given time (minimum of 4, currently 8) and that adds up to a lot of people over the course of the last 15 years. That’s a lot of people who become family nearly instantly.

It didn’t take me long to realize that when a person is working in your home on very personal things like hygiene skills with your children, the social barriers need to break down very quickly. Direct support professionals have seen us at our best and our worst. They have been there for monumental meltdowns and epic firsts in goal achievement and everything in between. The first time Samuel took a bite of pizza without deconstructing it into piles of toppings, cheese, and crust, I took a picture and texted his worker. We had been working on that specific sensory aversion for months and I knew she was the person who needed to know immediately. Not many people would appreciate the significance of taking a bite of pizza, but she sure did.

Part of the reason that our staff are unable to stay around for more than a few years is that they are mostly college students working on degrees in special education, recreational therapy, psychology, occupational therapy, nursing, speech therapy and the like. Our family is often the job that gives them their first practical glimpse into their future careers. The day-to-day support that my sons require can be daunting at times and it’s a true blessing to be able to hire individuals with such a strong motivation to learn. The strangest phenomenon of having mostly college-aged staff is that my sons are now older than many of their staff. When they were 7, the relationships were more like those of teachers and students. Now, it’s something more akin to a peer mentor. It’s amazing to experience this change in mindset in real time and to see our direct support professionals enjoy my sons as peers and work on skill acquisition with such tender respect.

In the end, Team Soderstrom is a permanent appointment. Tenure as an active employee of the Autism Society of NC may end, but our door is always open. Every worker knows to mark their lifelong calendar for the month of June and be on the lookout for the invite to the boys’ birthday party. It’s a gathering that has morphed into a reunion with a Happy Birthday theme, but I wouldn’t have it any other way. We have maintained close connections to so many of our past workers. To see one from 10 years ago walk into our backyard as if they never left is a blessing. To watch my son open his arms wide and say their name even after years have gone by is something truly special. To meet the spouses and children of former staff is a sure sign that our family of friends will continually grow. And for a mom who worries about the lifelong support her sons will require, this ever-widening circle of friends is more valuable than anything else I can imagine.


Amy Soderstrom is a parent and a former Autism Resource Specialist with the Autism Society of North Carolina.

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