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Back-to-school time is about second guessing yourself for special needs parents

Jill Marshall is a native of New York, living in Culver City, California, with her husband and two daughters. She is passionate about special education and has recently returned to work, helping special needs families receive the services they need. She strives to be the person she needed, when she started this journey with her own children, 12 years ago.

Some parents get giddy when Target starts putting their back-to-school stuff out in the middle of July. I believe it might be Staples that has the commercial where parents are dancing to the Christmas song “It’s The Most Wonderful Time Of The Year,” while buying back to school items. I am the exact opposite. I avoid this task, until I can’t anymore.

The last thing I need is another festive reminder that the first day of school is around the corner. It’s not that I don’t like school. I just don’t like what comes along with it, when you have children with special needs.

My calendar is already reminding me of my upcoming meetings, making me realize I have a 7:45 a.m. meeting with my child’s case manager and new guidance counselor. I think even my calendar is surprised that there is an event at that time. I know that this will be an easy, quick meeting, as our middle school case manager is my guardian angel, but it’s still a meeting. Meetings cause the anxiety that I swear, to my therapist, I don’t have.

Maybe my calendar is shocked because I made a decision at the beginning of the summer that my kids would just be kids over the summer. There would be no therapies, no meetings, no evaluations and no doctor appointments. I’m sort of kicking myself now, because my calendar is yelling at me with reminders, but I think I made the right decision. I think. Did

That’s the thing with having these kids. I am the decision maker when it comes to all of this. Yes, my husband is involved, but when it comes down to it, I make the final call.

Typical children don’t come with an instruction manual, so there definitely isn’t a manual on special needs kids. Any special needs parent knows that one size does not fit all. I’m not an indecisive person by nature, but I’m always worried if I go right, I should have gone left. If I choose up, I should have chosen down. It can drive you insane.

It’s not so much the middle school. I was beyond surprised with how well they run their special education program when we entered school last fall. Again, our case manager is my teammate. If there is a bump in the road, we talk and she smooths it immediately.

It’s the elementary school that has made my hair gray. I’m not kidding when I say we got a new principal, who doesn’t know anything about special education, and my hairdresser had to buy more dye.

I have been called aggressive, knowledgeable, intense, smart, obnoxious, intuitive, educated, bitchy, nice, outspoken, articulate, funny, serious, loud, caring, passionate. And all of that is 100% correct, because when you are advocating for your child, you are all of these.

There is nothing like knowing what your child needs and fighting for it, only to have someone say you are wrong. Then you foolishly second guess yourself — which is exactly what they want you to do — and speed dial your lawyer, who says you are absolutely right. She then sends a letter, and only then does the school and/or district untie their hands. By that point, you are depleted, tired, angry, relieved and content, while smirking a tiny bit, because you won this particular battle.

According to my calendar, my younger daughter is being evaluated by a neurological psychologist in two weeks, for dyslexia and dysgraphia. It’s a four-part evaluation that I spread out over a few days, so she wouldn’t be overwhelmed.

(Side note: A neurological psych evaluation costs $6,000, and insurance doesn’t pay for it. After two meetings and a battle with the school district, I was granted the evaluation during the very last week of school.)

In March, we found out my older daughter has a genetic disorder. While we are relieved we finally have an answer, further testing has to be done. She had been to so many doctors that she was starting to wonder if she was really OK, and I couldn’t let her go down that road. (She is OK, thank god) My calendar tells me my appointment with that doctor is in three weeks.

Maybe I made the summer decision for myself also. By the end of the last school year, I was completely exhausted. Our kids are only as healthy as we are as parents, right? I’m pretty sure my brain needed summer vacation, just as much as they did.

So, tomorrow, I will be at the middle school at 7:45 a.m., refreshed, ready, with just a tad of anxiety. And Thursday I will be at drop off with a lot hope, hope that we have a smooth school year, hope that my calendar keeps reminding me of all those meetings and appointments, and hope that my hairdresser has enough dye to get me through the year. I guess I need to make that appointment, too.

Back to school: It’s a long one, but I hope it gives the parents with kids with special needs a voice. And I also hope it gives the parents with typical kids, a window into what we go though. After all, it’s all about inclusion.

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