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  • Writer's pictureCindy

Ugh... Seriously.

Y’all… We are having a week here at the Bey homestead.

It’s the time of year where the days are (finally) getting longer, and the snow is starting to melt… We’re anxious for spring, fresh air, time outside, and, if we’re being honest, the end of middle school. We’re getting antsy and want to be moving faster than the natural progression of time lets us. Yet somehow, we’re having a hard time fitting everything into the time that we do have. So mentally and emotionally, things are feeling a bit tense.

But the roughest part of the week came Thursday afternoon. We got an email from the person who coordinates Nolan’s services at the organization who runs the after school program he’s a part of (let’s call them Services Place). During the school year, Nolan goes to Services Place from 3:30-5:30 four days a week. During the summer, the program he’s in runs during normal school hours.

So in this email, we learned that Nolan has been more aggressive lately. Nolan’s always gone in streaks of more or less aggressive, so an increase isn’t necessarily shocking to us. But unfortunately, they’re putting his services “on hold” for the time being due to safety concerns.

I mean, we get it-- Nolan’s a big kid. He’s a strong kid. He’s not a kid who wants to hurt anyone, but he doesn’t have enough awareness of his own body (or strength) to keep himself or the people around him from possibly getting hurt. That’s a big part of why he’s always had 1-on-1 support in school and at Services Place (and the previous provider-- we’ll call them That Other Place). We don’t want to put anyone’s safety at risk, but we’re obviously frustrated about the situation.

Actually, this isn’t the first time this has happened at Services Place. We started with them at the beginning of last summer. Before that, we had services through That Other Place. When Nolan turned 13, he aged out of That Other Place, but since he’d only been there for about a year and a half and was still making progress at that point, they let him stay the extra 6 months until the end of the school year. We were super grateful.

We LOVED That Other Place. When they first opened, we had services through an organization that came to our home to provide services (we’ll call them Home Services). At the time, I’d heard they were fairly strict in their adherence to ABA practices (ABA stands for Applied Behavioral Analysis and is a type of Autism therapy) and did a lot of table-top activity. Neither of these things sounded like a good fit for Nolan, so I couldn’t imagine ever sending him there. Plus, many of the folks who worked with Nolan felt like part of the family-- why would we give that up?

Along the way, Home Services changed ownership from a well-known non-profit with a goal to improve employment opportunities for folks with disabilities to a regional health-care organization. Home Services was also based in another part of the state (almost 3 hours from here), and the new ownership was based in the same part of the state. Several months later, the State of Wisconsin changed the structure and funding source for the types of services Nolan receives in an attempt to reduce/ eliminate waiting lists. At that point, Home Services changed directions to focus on Early Intervention services instead of working with older kids and teens. At that point, we were left with few other choices, so we went to That Other Place.

Our time with That Other Place was great. Their entire focus was on Autism Spectrum Disorder in kids 12 and under. The kids were separated based on their needs to be sure everyone was getting the support they needed. And while every service provider seems to be riddled with employee turnover (that’s probably one of very few universal truths of service providers), That Other Place’s employees tended to stay longer than most. Staff was also trained really well, and it showed.

So we transitioned to Service Place, and things went well for a while. After we transitioned back into the new school year, though, they had a concern about aggressive behavior. At that point, we were put on hold for the first time. We were given the option of having someone come to our home 1-2 times a week, but without any structure, it was hard to see any benefit from those sessions.

At the end of the year, we did transition back to their facility. This time, we started with shorter sessions (90 minutes) and extended to two-hour sessions only after Nolan had settled back in. Things seemed to be going better, but since we’re not with Nolan while he’s there, we have to rely on what we’re told by staff (if anything) at pick-up each day.

And now we’re back on a hiatus. Right now the plan of action is to see if Service Place can secure funding for two staff members for Nolan rather than just one. Of course, this requires approval from the state, and we have no idea what to expect as far as that goes. We’ve got a lot of questions, and we’re working on finding out the answers for now.

Right now, we’re just reeling a bit. For me, it’s like the power just went out. Suddenly out of nowhere you find yourself in the dark. I’m trying to figure out just where I am-- which direction I’m facing and what furniture I might trip over if I try to move… Once my eyes have had a chance to adjust to the dark, I’ll be able to process things a bit more clearly and come up with a better plan of action. But for now? I’m still standing here in the dark going, “Wait, what?”

There are other service providers in town, but when we transitioned out of That Other Place, we didn’t choose them because Service Place was a better fit for us. We still believe that it’s our best option for Nolan. Yes we miss the amazing staff, structure, and support that Nolan had at That Other Place, but I’m not optimistic that magical combination exists for Nolan right now, so we need to make do with what we have available.

I do feel like some pieces That Other Place’s success could serve as a model for Nolan to be successful at Service Place. For me, the biggest piece of that success came from the structure they provided. Neurotypical folks tend to think of unstructured time as more relaxing than structured time. You want to relax on vacation? Don’t make any plans and just do whatever you feel like! But for Nolan and other folks with ASD, that makes you vulnerable to unpredictability. If I know what to expect from my day, I won’t be blindsided by something I’m not a fan of. Even if I have to do something undesirable in my day, at least if I know it’s coming I can mentally prepare for it. Honestly? I see both sides.

So at this point, I’m just rambling because I have no answers. I mean honestly? I usually don’t have many answers-- as a parent I often find myself making it up as I go, and I like to think a lot of us live that life… But all we can do is wait until we know more, have faith that it’ll all work out and swear about it in the privacy of our own home.

I know we’ve gotten through worse before, and we’ll get through this, too. It’s just hard to know that Nolan is such a sweet and loving kid, but we need to protect people from him. He’s not a monster; he’s just a kid. And I know that when we give him the support and structure he needs, our challenges decrease.

For now, I’m going to pet the kitties and find something ridiculous to watch on YouTube to clear my mind so that I can sleep tonight. I’ll leave you with my favorite picture of Frodo and Walter, too, because it’s always a bright spot for me. And maybe your week has been shit, too.

Frodo is... uncomfortable.

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