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  • Writer's pictureCindy

Thank You, But...

Today we spoke briefly with the board of directors of the organization where Nolan gets his therapy services.

(It's okay to be totally jealous of my amazing photo editing skills...)

Nolan has been receiving services with this organization since the beginning of summer. Before that, he was with a different center-based organization where he was thriving. But, of course, he aged out and needed to move on to the next step... Because forget where he is developmentally— we’ve gotta go by the numbers agreed upon by legislators who’ve never met our child (I’m sure that’s a different rant for a different day.)

He’s definitely still adjusting to the new center. It’s been a big change from the autism-specific center where he was to a new (to us) program that’s just one piece of a larger organization that serves a wider variety of individuals with special needs. Add to this change the fact that Nolan not only outgrew his dosage of medication during the same time frame, but also that he’s in the throws of puberty and all the hormonal good times that can bring... Let’s just say it’s been an adventure.

So what do we say to the people who run this organization? “Thank you so much for providing the services our son so badly needs...” Of course. But also, “Here’s some bullshit we need to address...”

Because unfortunately there will always be bullshit. It’s simply unavoidable in the fight for services. Funding and budgets are never what they should be... staff is difficult to recruit, train and maintain... And communication can be a nightmare— even when both sides try their hardest.

So how do we balance this to let them know that we’re grateful for what we get while also letting them know we expect the best possible experience for our son? That we don’t want to settle for just whatever we’re given? We’ve walked that line more times than we could possibly count...

For example, “Hey elementary school— thanks for giving us a Special Education teacher. But do you think maybe you could let her have enough paraprofessionals to be able to take a lunch break every day?” Or even, “Hey insurance— thanks for letting us be seen by an OT. But do you think we could do it more than these few times?”

You get the idea...

In all honesty, though, we’re super fortunate to have the services we do. Compared to a lot of parts of the country, we have laws and funding that are making a positive impact. Finding providers can be a challenge in some parts of the state (let’s face it— most of Wisconsin is not exactly urban, so resources tend to be spread out and sometimes more difficult to access as a result), but we’re blessed to have good providers available here. Plus we’ve got two top-notch hospital/clinic systems in town.

The board members asked some really great questions, though. And they seemed genuinely interested in what we had to say. They asked where things can improve, and we basically told them that you can never have too much structure, and that’s what can determine success or failure for Nolan and a lot of other kiddos.

Nolan’s case manager is also an autism mom. She also talked a lot about how challenging and isolating parenting a child with special needs can be. That’s definitely another post for another day (heck it could probably be a month-long series), but it was great to see several board members reflect on that. I mean, maybe with some understanding of that piece, they’ll understand why some of us go a little off the rails once in a while.

In general, it went well. And it was nice to not be so frustrated that all we wanted to do was focus on the bullshit. I know that isn't always the case, so I’m going to enjoy it any time I can.

And I didn’t even swear inappropriately, so that’s always a win.

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