This is the seventh installment of the story of our journey with Maura…
Where did I leave off? Maura, seizures, preschool…
But eventually, even Maura got too old for preschool. She still hadn’t mastered writing the letter M, but she was turning six, was a head taller than half her class, and couldn’t stay in preschool any longer.
Honestly, looking back, we shouldn’t have bothered with the third year of preschool. She really didn’t make any progress, and she started dragging her feet every morning as we walked from the parking lot into the school. I think it all kind of got boring for her, as she was still trying to meet the same goals – draw a straight line, put the bead on the string, walk up and down stairs without holding onto the railing…
It was time to move on.
And that’s when we realized that things were about to get interesting.
I remember sitting in the Special Education Director (SED)’s office, asking about kindergarten, wondering what would best suit Maura – mainstreaming or some sort of special school.
Her response was “Don’t worry, we’ll meet ALL of Maura’s needs here.”
When I asked what the options were if this didn’t work out, again, she said “Don’t worry, we’ll meet ALL of Maura’s needs here.”
Yeah, I started to worry.
We got to be part of the Guinea Pig special ed preschool class. Lucky us, we were going to be the guinea pig special ed elementary school class as well! I looked at how they hadn’t had a child as disabled as Maura in the elementary school, and wondered just what they were going to do with her. I also couldn’t wrap my brain around the fact that there were NO options – the only choice was mainstreaming.
When I asked the SED about it, she got a bit defensive, saying that this would work, and I should be happy Maura was too high functioning to qualify for any of the self-contained special ed classrooms in the county district. Eventually, I figured out that her idea of “high functioning” was every so slightly more optimistic than anyone else’s.
Then we started going over IEP stuff. And I started to get more anxious about it all. First, when the SED was talking about how Maura could share an aide with another special ed student going into kindergarten. A child I knew well, a lovely child who was a runner and requiring as much attention as my own. The thought of these two children being in separate classrooms, with one aide running between them? It was ludicrous. Why in heaven’s name would you do that to some poor aide?
I smelled Budget. As in, “How cheaply can we manage these special ed kids?”
I put my foot down. Maura needed her own aide. Not a shared one. Yes, it was demanding of me, but a child who was somewhat non-verbal, who had epilepsy, who couldn’t zip up her coat, who was still in diapers, who had no sense of danger and needed close supervision on the playground? Share an aide? No, here I put my foot down. I insisted on her own aide – my one example was “What if she had a seizure on the playground?”
Not to mention, a shared aide’s logistics, trying to take care of two disabled kids without the power of bilocation was dizzying.
The SED relented on the aide, Maura would get a full time aide.
But then, it seemed like everything was getting a bit shorted. Maybe it was because we still didn’t have a label, that there was no example to go by in terms of how much Maura would need. Plus, I was supposed to have all my fears and worries eased by a program that wasn’t yet developed, with a teacher that hadn’t been hired yet, and a blueprint picture of what the proposed resource room would be like for Maura’s resource room time.
All while being fed a line of how ALL of Maura’s needs would be met.
I cracked spectacularly. On the poor little preschool teacher who was just trying to be nice by saying “Don’t worry, it’ll all work out.”
I looked at her and in a slightly hysterical tone, said “No! It’s NOT working out!” or something like that.
She tried to say something nice (but I think I surprised her – I was not one to fall apart in public) and I actually gave her the hand. YES! The Hand! With “No, I’m not talking about it here.”
Somehow, I managed to sob my way to McDonald’s to buy Maura a Happy Meal and myself something to. Then I sniffled my way home and stuffed my mouth with French fries while Maura happily watched some cartoon. The phone rang and the school’s number came up.
See, apparently, I was upset enough that the preschool teacher called the speech therapist who had worked with my other kids and knew me well, told her about my meltdown, and this speech therapist knew me well. Had been through a bunch of IEP’s with me. Had sent me off to Early Intervention with Maura. She knew I didn’t crack under pressure.
I was slightly mortified that she called and got to hear me sob on the phone to her about how I did NOT feel good about sending Maura to kindergarten. God bless that woman, she talked me off the ledge and said “What can we do to make you feel better?”
We went through some things on the IEP. Minor things. Tweaks here and there. I calmed down about it all, but maybe cried a bit more after we got off the phone because she was just so nice and helpful. (She is one of those people in Maura’s life who I will be singing the praises of until the cows come home…and then some…)
Maura’s IEP transitioning her into kindergarten was a bit ridiculous. I think we had 14 people there. Fourteen people. For one little girl. Who the special ed director thought was high functioning. She also kept saying “Well, IF Maura isn’t potty trained by the time school starts…”
I put the kibosh on that. “Let’s just plan for the fact that she will NOT be potty trained, that she WILL be in diapers.”
Yes, I had to argue over where my daughter would have her diaper changed. The SED thought that the bathroom in the classroom wasn’t a good place. Other students might notice then that Maura was in a diaper. No, it was more inconspicuous for her aide to walk her through half the school to the resource room to change her diaper. No one will notice that! (FYI – took one whole day of school for her classmates to notice she was in a diaper. Because kindergarteners, for all their goofy ways, are obnoxiously observant.)
There was also the matter of the school bus. We lived in a semi-rural area, so the bus route was about an hour long. Our house was the last morning pick up, but they’d then flip the route for the afternoons, which meant actually driving past my street to go out into the country and then back, making our house the last stop in the afternoon, meaning the afternoon ride would be an hour.
The SED took me to meet with the bus director, who showed me the harness they would put in so Maura could be seat belted in – a nice 5 point harness that she couldn’t undo. I was great with that part. I then asked about possibly switching the bus route slightly in the afternoon, so they could swing by my house to drop off Maura, instead of having her on the bus for an hour. (Especially as up to that point, no one mentioned the word “aide” when it came to the bus ride – which technically, they’re supposed to provide.)
The bus director balked a little, even though doing this would not take the bus out of its way, and only changed the route times by five minutes. They would be driving past my block anyway, all I was asking was that they’d first turn down my street, drop Maura (and my other kids, since they were there) off, then turn the corner and go back to the regularly scheduled route. Five minutes. Two blocks.
What the response I got was? “Some parents may think it’s not fair that she gets two short bus rides.”
Seriously? Not fair? I told him that if he gets those calls, he could give those parents my phone number, I’d explain how I didn’t think it would be fair if Maura had a seizure on the bus somewhere.
He backed off.
And then I played my trump card of “I’ll be fine with not having an aide on the bus with Maura if she has the shorter ride.”
So they made that minor change to the bus route. No parent complained.
I still hadn’t met with the district nurse about Maura’s seizures, the teachers weren’t trained in anything medical, the aide and resource room teacher weren’t hired, the resource room didn’t quite exist yet, there was no place for diaper changing, Maura still napped half the time in the afternoons,
there was no other option if all this failed…but apparently, we were ready for kindergarten in the fall.
Yes, there was no need to worry, Maura would get everything she needed.
No need to worry at all…
…well, I did still have one of the four best kids in the world. And a new-found self confidence. See, before Maura, I was not really what you’d call “confrontational”. No, I teetered on the edge of “doormat” sometimes. Then I started having children and that mama bear gene started to come alive. I had Maura and it morphed into something more. I came from a long line of strong stubborn women who were always polite, but also didn’t take any crap off people. I was always impressed with them, they were the women I aspired to become. And then one day, I realized, I’d become one of them. Thanks to a husband who believed in me and always has my back, to the older three children who kept me on my toes, and to Maura, who trusted in me in every way, shape and form.
Oh, I was still going to worry about kindergarten – and I underestimated how crazy it would be. I dreaded having to have more meetings over IEP’s and Maura’s issues. But I knew I had this. Failure was not an option.