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The Exceptions

First time in an open space with her walker.

First time in an open space with her walker.

There are many times that families with special needs kids have to work a system. There are a lot of time constraints placed on our families because of the extra care our kids need. I won’t lie, sometimes we ask for a lot. It’s the nature of the job we have as parents who need extra. They just need extra and we do too. Then there are times we just need a little something that will make a small difference which can make the day just a little easier. Just a little.

I’m not talking about the big things; the things we have to fight for every day so our kids get services, proper medical/mental health care, or for them to have as equal playing field our kids can have. I’m talking small things. Giving us leeway with time, paperwork, appointments.

Even now, with both of my kids medically and emotionally stable, they still can have 5 extra appointments or activities around their special needs per week. Those five can be on top of regular things like lessons that the kids currently get each once a week. Specialist appointments, therapy of all kinds, ab work, ER visits, pediatric visits relating to special need, supply shopping (special clothing, special supplies for school, special food, etc), filling out and delivering paperwork for grants, scholarships, medication deductions. Calls to insurance regarding coverage, therapists for Apple Cart* changes, medication refills, and all the follow up phone calls that go along with arrangements of any kind. You know what I’m talking about.

So I do, I have to admit, I ask for exceptions. I admit to wanting to make things a tad easier when possible. One tiny adjustment sometimes can make all the difference. I admit to asking and liking exceptions. I also admit to not abusing exceptions. One small exception by a compassionate person can send me into tears because it means people get it. They get that something little can make a huge impact on my or my kids’ day.

A perfect example is the kids’ public school. Back in the day when Gage was on dialysis and when the kids both had multiple appointments during a typical week the kids’ school made exceptions. They would let me check them out in the window of time when I really wasn’t supposed to; that time period right before school let out. They let me anyway, recognizing that the kids missed enough school because of their disease and so this was their way to help. They also didn’t mind if I parked right behind the yellow fire line right in front of the school. We all knew this wasn’t a parking spot, but you know what? They didn’t care. I did though, because it made a big difference in the amount of time I could work and the kids could stay in school learning.

Another example is when Quinnlin was born and we spent months stabilizing her blood pressure, then Gage’s when he was diagnosed and a nurse made an exception every Monday for months. Ten, twelve months. She didn’t make us go through check-in, in fact we didn’t have an appointment at all. We would show up at the beginning of lunch for the office and she’d check their BP. As a new mom to chronically ill kids (who nursed) she wanted to do One Small Thing to help beyond what she “had” to do, beyond the rules of the office (which was part of a huge Children’s hospital). It made all the difference that first year. Not a huge thing to her, it took 5 minutes, but to me? Huge.

We don’t need the mountains moved. Sometimes we just need something small to make something else a little easier.

I just want to say thanks. Thanks if you’ve ever been a part of helping me or another family of kids with special needs in a simple way. I’ve learned that people who do those little things are the exception in many ways. You’ve probably helped me or a family like ours in a way you don’t think is much, but we do. We remember. We remember all the times we’ve had exceptions. Every single one.

* Apple Cart changes: when one change in schedule topples the cart…one doctor or therapist appointment changes and it has a domino-like impact on 4 other things that one has to manage.

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This is part of the NaBloPoMo program for people writing on their sites everyday in November.

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