For over two years, we have been sitting on a waiting list for specialized Section 28 services. Section 28 services provide an individual with a disability with a worker(s) who will help them with behavior management, community involvement, and activities of daily living. There is a subdivision within Section 28 that is referred to as “specialized” and that is because it is overseen by a BCBA and requires more training.
When we got the call that Brian’s name was coming off of the waiting list, we were ecstatic.
But then reality started to sink in. The reality that we were going to have another human being become an intregal part of all of our lives anywhere from 12 to 30 hours a week.
It’s weird. It feels sort-of foreign. Brian received thirty hours a week of in-home support when he was in preschool….but that was a lifetime ago.
We would never turn down this service. We will always do what is best for Brian and it would be silly to wait two years to then say, “No thanks”. But it doesn’t stop us from really reflecting on what this is going to mean for our family.
Another person, a stranger at first, will become part of our family routine. Eventally, we will have to trust them to bring Brian in the community to work on social and safety skills and to help him become a part of the community he lives in.
Another person will spend more time with Brian than we do. I feel a twinge of jealousy at that. With both of us working full-time and him visiting his Dad every other weekend, time spent with the boys is sacred. Especially the time that isn’t devoted to feeding, working on self-care, homework, and so forth.
It always feels strange to invite workers into your home. There’s always a part of me that feels I need everything to be perfect. That our house has to be spotless, which it never is. That Brian’s multiple folders I keep on services, communication boards, visual schedules, and so forth need to be always organized and ready, which they never are. I feel like we all need to be well-coifed and not hanging out in our pajamas, with our feet up, watching cartoons. I feel all of this is a reflection of me as a parent.
It’s weird to imagine how we’ll balance our sacred time as a family of four to the time Brian is with his new worker. And it will take some adjustment to find that perfect balance.
Last Friday, after a day or two of my husband and I talking about all these changes and both of us doing a lot of self-reflection, Brian had an episode. There was an unexpected change in his routine and it took him two hours to calm. It wasn’t a huge meltdown with aggression or even self-injurious behaviors- but he was out-of-sorts for an entire two hours. And two hours of on-and-off whining, crying, and yelling just wears me thin, particualrly when I had so much to get done. I can’t even imagine what Brian was feeling. And I just thought to myself, this is when we are going to feel so blessed to have a worker. First of all, if we had a worker- they probably could’ve finished the routine Brian wanted to do. Secondly, even if they couldn’t, they would’ve been able to give Brian 100% of their focus to help him work through it. Unlike me, whose brain was on when am I going to enter my work notes into the new program, when am I going to finish cleaning before my LuLaRoe guests get here, when was I going to find the time to make dinner in the midst of this, and why hadn’t he calmed down yet??
When we applied for this service two years ago, Brian was in a really rough spot. We had aggression and self-injurious behaviors galore. We really needed help. Right now we feel pretty good. However, it’s just a status quo kind of good. Things could be even better. Brian could shower 100% independently. He could tweak some other self-care skills to be more appropriate. He could learn more play skills so when he’s off of screens, he’s not just pacing around. He could learn to make himself some basic foods in the kitchen. More emphasis could be placed on him using his AAC device. He can be safer in his community. He can participate in after-school clubs with typical peers. He can access the YMCA, the Owls Head Transportation Museum, and other community buildings with his worker. He can work on using money in real-life situations. And the list goes on and on of things he could work on. He can become more independent.
We’re his parents. We want to be “just” the parents sometimes. It’s hard to be the teacher, the behavioral analyst, the occupational therapist, the speech therapist, the transportation, the advocate, and so forth. Sometimes we just want to be the parent. And this service is going to allow that.
These are amazing things and will open up doors of possibility for Brian and will also change our homelife, for the better. So, even though it feels really weird right now, we’re ready for the weirdness and the future of possibilities.