Fun with Mainstreaming! Part 1 – the medical issues

17 May

This is the eighth installment of the story of our journey with Maura…

I just had this memory of the Kindergarten Readiness Night, the one where all the parents go to learn about kindergarten.  Which honestly?  With your fourth child is more than redundant.  When it’s your fourth child who has special needs?  It’s practically pointless.

I remember sitting in this meeting as they told us all how much our children would grow and learn through the year.  How by the end of the year, my child would be reading a little, writing, doing simple math.

I had the good warped sense of humor to laugh about it.

But I also went up to one of the administrators afterwards and said “Listen, as an fyi, this sort of thing could be REALLY depressing to a parent of a special needs child.”  It was all basically one big meeting of “Things My Child May Never Be Able To Do”.

And the principal looked at me, all bright eyed and optimistic, and said “Oh now you don’t know!  She may surprise you!”

Sweet Baby James woman, have you NOT read her file? – is what I did NOT say.

But this sort of attitude is what I’d get with administrators.  The people who at the end of the day, made the final decision for my child.  These unrealistic ideas of what her abilities were.  My theory is that either they were just ignorant to the severity of her disabilities – which would be understandable at first – or trying to make her more “able” on paper so they didn’t have to invest as much in her.  Let’s face it, my kid, and kids like her, are pricey.  I can sympathize with that, I’ve got the medical bills to prove it.  And you know what?  Pretending she’s not that disabled gets us no where.

Anyway, this was the situation I was heading into with kindergarten – a principal who didn’t seem to get what we were dealing with, and a special ed director who wanted to label Maura as high functioning.

A couple weeks before school began, we met with the teacher, new aide, and special ed director to go over things.  I knew the teacher, knew she was awesome.  The aide seemed nice enough.  The special ed director was…well…the usual.

Like when I asked about getting staff trained for Maura’s seizures and the medicines that came with it.  She looked at me and said in all honestly, “Oh, do you want them trained?”

Hm.  Let’s see.  They’d have to administer Valium, rectally, while she was actively seizing…..oh, what the heck, let’s wing it!

No, I didn’t say that.  I just said that yes, I would love some medical training, especially as Maura had a tendency to have a seizure at school.  (They’re few and far between, her seizures, but the majority happen to occur during school hours – go figure.)  She said she’d look into it.

But it didn’t happen before school started.  Neither did she procure the item needed for diaper changing (which ended up being one of those comfy cots you find in nurses office.)  I was told it was because it took some time to decide on the proper piece of equipment.  That finally arrived a few weeks after school started.

Of course, that didn’t matter much because lucky us, we got the aide that had an aversion to diaper changing.

Maura had qualified for this special speech therapy program, the afternoon session, so for the first three months of school, I’d pick her up at noon (kindergarten was full day at that school.)  I would pull up every day in the drop-off circle, where Maura was usually wandering about and the aide sitting on the bench texting.  It sort of bothered me, as I knew it only takes a moment of not paying attention for Maura to get into trouble – or fall off the curb.  Not to mention, she has this tendency still to take off running to meet me (her current bus aide will not let go of her until she knows I can catch her, smart woman.)   So every day, I’d pull up very slowly, stopping before I’d get too close – so on the off chance Maura fell into the driveway, I wouldn’t run her over.  Because the aide was never within instant reach of her.

Then I noticed this trend of Maura having a full diaper during hand-off.   Which is just annoying when you have an hour’s drive ahead of you.  Some days, we’d arrive to therapy and her diaper would have leaked everywhere.  Or she’d be climbing into her car seat and I’d realize she smelled bad.

The first time, I gave the benefit of the doubt.  The second time, I got annoyed.  The third time, I wrote a note to the teacher (who didn’t realize Maura wasn’t being changed – changing Maura wasn’t her job, it was the aide’s, and we had all trusted her to change Maura.)  The teacher had words with the aide.  But between that and not showing up for a meeting until the very end and without an apology, plus the fact that she wasn’t doing her job in other ways…well…they found a new aide.

How I found out Maura had a new aide was when I arrived to pick her up, and a new person was with Maura.  The new person got to tell me that she was the new aide.  I left a little bewildered and unsure – I mean, surely one would expect the school to notify the parent that their not-really-verbal special needs child suddenly has a new full-time staff member? Is it unreasonable to expect some administrator to call me up and go “By the way, we had issues with the aide, she has been replaced, this person will be tending to your child’s needs from now on.”  Is that too much to ask?

Luckily, we went from having the “meh” aide to the “I trust you completely with my baby girl” aide.  The super-amazing, spoils you for all others aide.  I’d pull up to pick Maura up and the aide would be playing games with Maura, and Maura would be clean and fresh and sometimes, have her hair done up in some fun braids even.

Besides the aide snafu, we started off kindergarten with a seizure on the second day of school.  On the playground.  Fall over flat, full on short seizure.  Honestly, part of me almost laughed when the school called to tell me Maura had a seizure on the playground, as that was the exact scenario I used to the special ed director the spring before when she was contemplating Maura share an aide.

However, having a seizure at school didn’t boost any sort of medical training up the “urgent” list.  No, the school staff got to fly blindly with just the info I gave them (I found medical type forms online that I printed out, plus the pamphlets I made).   In October, we had another meeting with the special ed director, and again, I asked about medical training.  I was told once again that she was working on it.

It finally happened in November.  I had asked for this in May.  It took until November.  And then, it was only for three – Maura’s regular and special ed teachers, and her aide.  I was a bit flabbergasted and asked if shouldn’t there be more people there?  I was told the principal couldn’t make it as she had a previous engagement (and by the powers of a small town, I learned that it was a Boy Scout meeting.)  The special ed director assured  me that it would be a very rare day indeed that even two out of the three staff members would be out of the school on the same day.

The next Monday, the special ed director sent the special ed teacher and Maura’s aide to a conference.  Leaving just the one teacher who was trained in what to do.

Needless to say, I was not impressed with how the administration dealt with the seizure disorder issue.  I got the feeling it wasn’t taken than seriously, even with her having a seizure at school.  I knew nothing about seizures until Maura had one, and they are scary to deal with if you don’t know what to do.  I didn’t think it was fair of them to put a child like Maura into staff’s hands, expect the teachers and aide to deal with a seizure, when they hadn’t had any sort of training for it.  Let’s be honest, teachers and aides do not get paid enough as is – and now they’re supposed to be nurses too?

Then I caught wind of the fact that two other students who had medical issues had full-on medical plans, with 911 call sheets, plans on how to handle a medical emergency, who would stay with the child, who would call 911, who would do what.  All organized and multi-copied and thought out.

And yet, not even suggested to me by any administrator.

I read up on how my child should have a medical plan, and realized we didn’t have one.  Or so I thought.  Yet when I contacted the special ed director about this, she told me that we did have a medical plan – the little pamphlets I had made – and therefore, we were all in compliance of any laws.

I was a bit “What the hell?” about it all, as I didn’t consider the info pamphlets I made a “medical plan”.  But apparently, me trying to share information was considered good enough by the special ed director.   I got a bit grouchy over this and stated what I gave them was NOT a medical plan, that I wanted one for my daughter like what other students already had.

Looking back, I get even more annoyed.  My daughter spent two years in the special ed programs there, having several seizures at school, on staff who had no training, and no formal plan of action if there’d been a medical emergency.  The last year of preschool, I just stopped leaving town while Maura was at preschool, because I wanted to get there asap if she had a seizure.  Her medical issues weren’t taken as seriously as they should have been.  I know that now.  Having had a different experience with Maura’s current school, seeing how seriously everyone took her seizure issues, the principal familiarizing herself with all that they needed to know – I can now see how things weren’t done right with Maura.

Again, it wasn’t fair to the staff who worked with Maura daily, the ones who would be dealing with any seizures she had.  It wasn’t fair to me, to keep me from having more peace of mind when she was at school.  But also, it wasn’t fair to Maura.  She deserved better.

We finally had a meeting to create a medical plan in late January – five months after she’d had a grand mal seizure on the playground.

It was at this point of time I stopped playing nice.  I had tried being understanding, I tried seeing it from the other point of view, I had talked the ear off of the best friend who was a special ed teacher, to get her perspective, to see if I was blowing things out of proportion.  But I’d had enough.

I wasn’t ever rude, I don’t think so.  I just got blunt.  To the point.  Very direct.  I put out what I wanted – which again, was nothing that wasn’t within my rights, things that had done for other students, things within reason.  I didn’t ask for an verbal behavior therapist to come in and give Maura extra therapies.  I didn’t ask for a trained nurse to be staffed in the school at all times.  I didn’t ask for them to rearrange the classrooms so that it was epilepsy-safe, or had them re-do the playground so that it was full of cushions and soft landings.

You know, it’s a shame that four years later, I’m still feeling like I have to defend myself for asking for what I did ask for.  That somehow, asking for a medical plan like other students had was being “demanding”.  That I was not being understanding enough when there wasn’t any place to change Maura’s diaper for the first several weeks of school (have you tried changing a diaper with the kid standing up?  It is not a long-term solution, especially when you’re squeezing her bum into a size 7 diaper that juuuuust fits.)   I was asking for basic needs to be met, for her serious medical issue to be taken as seriously as they did all the food allergies (which I have always complied with happily – no peanut butter sandwich is worth another child’s life.)

But I know that the special ed director would probably have a different story, how she tried her hardest and we weren’t understanding enough.

Except we were only halfway through kindergarten and there was more fun to be had.

And by fun, I mean frustration.

But mama got a new pair of kick-ass boots and wasn’t afraid to use them!

Miriam and Maura, first day of school.  That little face?  Is the reason why I do what I do.

Miriam and Maura, first day of school. That little face? Is the reason why I do what I do.


11 Responses to “Fun with Mainstreaming! Part 1 – the medical issues”

  1. Christine Stimson May 17, 2013 at 8:23 am #

    I was reading the part about Maura having a full diaper when you picked her up for school and felt like it was being described particularly vividly – I could practically SMELL the diaper. Then I realized that I COULD smell it. My little guy had filled his diaper.

    • phoebz4 May 17, 2013 at 8:42 am #

      lol! Yes, I didn’t get that vivid in detail!

  2. saracvt May 17, 2013 at 9:22 am #

    I HAVE epilepsy. Have had grand mal seizures since age 13 (I’m now 42). Fortunately they’re rare now; they weren’t always. When I was in school, I even had multiple seizures in one day. Know that even the most well-informed adult doesn’t do what they’d planned when confronted with seizures. I remember (I was told about it later) the time in high school when I had a seizure in Spanish class and the teacher went running down the hall in hysterics, while my friends began to calmly move furniture out of my way and kept me safe. A seizure is a scary thing, so I’ve been told (I’m the only one who’s never seen it), so I make sure everyone around me is aware of my disorder.

  3. Caitrín May 17, 2013 at 9:30 am #

    Soooo, I have read your last few posts and can’t help but wonder why in the world you are moving back to the states if she is being so well cared for in Ireland? If my daughter was getting the superb care that Maura is I wouldn’t leave for anything, especially if I can’t guarantee we would be getting the same level of support and care in our new city. I know you miss home and family of course, but I would stay.

    • phoebz4 May 17, 2013 at 9:39 am #

      Because at the end of the day, we have four kids to consider, not just one. We also have six family members to take into consideration, plus Maura’s long-term needs. The older kids want to move back to the states, and what’s best for Maura is having family around, not beloved siblings 3000 miles away. And while her school needs are met, after spending 6 hours in the ER over constipation here, we realized we also need to be someplace with excellent health care. Seattle has a wonderful children’s hospital from what I’ve heard from friends.

      Plus, maybe I could find some wealthy philanthropist up there in Seattle who could donate funding to start a special needs school in the area….gee…who would fit that Bill? 😉

      • Caitrín May 17, 2013 at 11:20 am #

        I get it:) Maybe Mr. Gates will too….

  4. denverlori May 17, 2013 at 10:35 am #

    I’m the parent of a 2E kiddo (I too have ass kicking mama boots). I also work in the SSN department of a middle school. I assure you we are trained regularly on seizure disorders, administering the proper medication, and providing appropriate care. I am thankful for a school nurse who takes it all very seriously so I can care for our kiddos with the best possibly information available. Keep kicking ass sister! 🙂

    • phoebz4 May 17, 2013 at 2:12 pm #

      See, I knew there were programs out there that takes this stuff seriously! Thank you for doing that!

  5. BobS May 17, 2013 at 1:59 pm #

    We had a hard time finding a good school for Emma who was born with Spina Bifida. She is in a wheel chair and is functioning about 1 1/2 to 2 years behind her age. All the programs were so so, or to far to travel on the day that I work, Michelle can’t drive because of seizures. We ended up just keeping her at home and home school with our other kids. Its so frustrating when all those people who only spend a small fraction of their time with your child think they know better than you.

  6. Nancy Spivey May 18, 2013 at 11:38 am #

    This is very painful to read. I am so sorry you and Maura had to work so hard to get what she needed. Imagine if you were not such a conscientious parent!?!?!

  7. My Dance in the Rain July 2, 2013 at 8:02 pm #

    I don’t think I could have remained so civilized after all you had already expereinced, I would have snapped by the second month of waiting.

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