Thoughts on schooling for special needs

Maura ready for school, Fall 2011

Ah, back to school time.  It should be about getting a new pair of shoes and a cool new backpack.  But for what seems like a long time, I’ve not cared for the school process when it comes to Maura.  All the meetings, paperwork, double-checking things, did this get done?  And don’t get me started on the Emergency Contact stuff.

Maura’s done special ed preschool, mainstreaming in a regular classroom with special ed support at our local school, and now she’s at a special school for kids with moderate disabilities here in Dublin.  I feel like we’ve had a well-rounded experience when it comes to schooling types, and yes, I have definite opinions about it all now.

Opinion #1 – Parents need to have choices.

When Maura started kindergarten, we had one choice – mainstreaming.  Between accordance to the Least Restrictive Environment and due to the lack of special schools in our county, this was it for us.  Which was a bit daunting, especially when, upon hearing that Maura would be mainstreamed, one school professional (who is now retired) said “But we don’t have the resources for her!”

It was true.  They didn’t.  They had to bring in a lot of resources for her and a classmate of hers.  Like a place to change diapers, a special ed teacher, one on one aides, medical training for staff…I had to push at the special ed director for a medical emergency plan for Maura even after she had a seizure at school (and even though they had these plans for two other students with medical needs.)

Instead of having a place where everyone knew what to do, we all became the guinea pigs.  Maura started special ed preschool in a brand new class that was being formed for our district (before that, they shipped the special ed preschoolers to the neighboring district’s program.)  So we were kind of used to being the guinea pigs.  But at the kindergarten level, it got to be a whole new ball game.  And by ball game, it was more like rugby, with a lot of emotional hits.  I’ll be honest, the transition was so frustrating in so many ways that one day I broke and found myself sobbing on the phone with the speech therapist (who was amazing and talked me off the ledge.)

When we moved to Ireland, I was surprised that I had a choice of schools.  You’re still allowed least restrictive environment, but it’s a choice, not a “sorry, this is it”.  Schools were more upfront about their abilities to handle my child.  Back in Michigan, I had a special ed director assuring me that ALL of Maura’s needs would be met.  I’ve since learned that if someone tells you that, get a shovel because you’re getting handed a pile of something.  In Ireland, it was “Listen, we don’t have the resources, but we’ll do our best to hook you up with those who can help you.”    And they did.

I didn’t have a ton of choices here, but I had choices.  I could choose the environment best suited for my child’s needs.  Instead of sending her to a school where they had to scramble to meet her needs and figure out what to do, I sent her to a school that was already set up to meet the challenges my child would present.

Opinion #2 – Life Skills are Important!

In Michigan, because of being in a regular school, Maura learned a lot of regular things.  She still had to meet certain academic standards.  She still had to do math and reading and social studies, even though they were modified to fit her learning curve. She also had special ed time every day. She had to fit in OT and speech.  I may have insisted that they not cut her out of music (she loves music).  There was lunch and recess and bathroom breaks.  She was a very busy girl at school.

But for all the academics, she wasn’t learning life skills.  Like how to zip up her coat, cross a road, or brush her hair.  Sure, we did all of that at home.  But when you have a child who takes forever to learn things, it would be nice to have help in this.  Not to mention that by the time she got home from school, she was slightly done for the day.  I couldn’t take her out at one point because she was so exhausted after a full day of school that she just turned into a shrieky puddle of tired girl.

On the flipside, her special school here has a primary focus of life skills.  Their mission is to prep this kids for adult life as much as possible.  Which means learning how to dress, how to clean themselves, how to cook, how to interact with the real world.  They go on outings to buy ice cream and learn how to ride the bus or train.  They have cooking class once a week – which not only helps them learn how to make stuff, but opens them up to trying different foods.  They go swimming every week.  Swimming!  Maura adores it and has actually learned how to swim a bit.  For the kids who aren’t toilet trained, they work with this aspect as well.

It’s funny – we started toilet training during the last month of school.  They thought it wasn’t going well because Maura wouldn’t pee at school.  But we had amazing success at home for her.  I’m pretty certain she’ll be trained within the year.  We said last year that if all she learns at school is how to swim and use the toilet, it would be a success.  Instead, she’s grown SO much.  Unfortunately, she also thinks she can cook and has done bad things to my kitchen.  But it’s a small price to pay for her learning how to read “push” and “pull” and how to cross the street safely.

I’m always as honest as I can be about Maura – she’s gorgeous, full of personality, but let’s be real.  Math skills aren’t high on our priority list.  It’s great that she can count stuff, but what I really need is for her to pee in a toilet.

Opinion #3 – IEP’s and FAPE Suck

Let’s just be honest.  The whole IEP process is soul-sucking.  I know, I’ve done a lot of them, for each of my kids (they all had speech issues, comes from my side of the family.)  I’ve also NOT done an IEP for 18 months.  And it’s been bliss.

Why do IEP’s suck?  Because at the end of the day…they’re just false security at best.  I learned this the hard way when I thought Maura was shorted on OT and was told “Oh no, see here?  How we wrote this out?  This, dearie, is our loophole.”  (I paraphrased that.  No one actually called me “dearie”.  I would have responded with “Listen you hag..”) And then there was the time the special ed director told me that my signature was not necessary.  I said “Pardon?”  It’s true.  Parental signatures technically are not necessary.  Encouraged…strongly encouraged so I’ve been told after taking that tidbit to the superintendent.  But not necessary.

IEP’s are a crazy-making process when you have a child who needs a lot of help.  I have sat in a conference room with fourteen others trying to figure out what Maura would need  for the next year, usually with whatever new IEP form the people in charge came up with for that year.   Some people expected it to be all done within an hour.  I laugh at that time frame.  I spent four hours one year ironing out details only to not have all the details ironed out.  Only to find out after the fact that oh, I was supposed to have them all ironed out before I left the meeting because ending the meeting meant I agreed to everything.  Which would have been nice to have known BEFORE the meeting.

IEP’s are the time to make your case, why your child needs help.  The more help your child needs, the more details, the more crazy making.  I’ve decided they should be held at the local bar.  Some might have agreed with me, but sadly, we were certain the superintendent wouldn’t go for it.

But imagine, sitting through hours of a meeting, thinking you’ve covered every base only to hear “Oh, sorry dear, see this loophole? HA!”…and they wonder why we parents get so insane at times.

(Okay, so no one ever said “HA!” to my face either, which was very smart of them…)

And the thing is, sure, it’s a legal document and you can use it against the school district if they don’t honor it…but how many people are willing and have the money to take it that far?  And win or lose, if you pursue legal recourse, you’ve burnt bridges in your district.  And that can affect how your child is treated.  I know more parents who want to fight, but don’t want to piss off the people working with their child all day, so they stay silent.

As for the FAPE – Free Appropriate Public Education – again, that’s a false security they throw at you.  You hear “Oh, this means they have to do everything I want for my child!”  What it really means is that some else chooses what they think your child needs.  Their definition of what your child needs will vary from yours.  I’ve heard parents go “But…but…there’s the FAPE, they HAVE to provide this!”  No…not if they think it’s unnecessary.  On one side, you’re being told by society that you’re the expert on your child.  Then you walk into the school and are told “Oh, no you aren’t, sorry, we know what’s most appropriate, you know jack squat, we win.”

It’s all crazy-making.  Even to me – and I tend to have a good attitude and open mind when meeting with everyone. Imagine if you have less of a sense of humor or insight into the system.

Opinion #4 – Our system needs rethinking

When we came here to Ireland, I didn’t know what to expect from the special education system, but from what I’d gathered, it was similar to ours.  After years of learning the system in Michigan, of figuring out the laws and loopholes and lingo, I came armed with all sorts of information, ready to fight for my child. Instead, it was “Oh here, we have a place for her, drop in any time” and a stream of people coming to meet with me at my convenience at my house. I even had the social worker asking me if I had enough personal support.

It was all ridiculously easy and eye-opening. Everyone here was surprised that I didn’t really have choices and options in the States.  They were dead certain that in the U.S. of A., special ed students would have it so much better.  Which found me explaining how it depended on your individual school district, Least Restrictive Environment, the lack of special schools for kids who aren’t severely disabled.  The Irish system is not perfect, but I haven’t had a panic attack or burst into tears because I don’t know what’s going on with Maura’s schooling either.  And this is without doing an IEP or depending on FAPE or LRE or any other jumble of letters.  It just happens.

Now that’s not the case everywhere here.  I landed in a very good system that works with special needs people of all ages.  It makes me wonder why there aren’t more systems like this in the U.S., a system where the needs of special children are met, without loopholes, without the need of a correct diagnosis.

It’s great that the schools in the U.S. offer therapy in the school building.  The Irish are impressed with that.  But for kids with more moderate disabilities, it may still not be enough.  Maura got a lot of speech therapy in Michigan.  Both in and out of school.  She had some awesome speech therapists who helped get her as much speech therapy we could fit into the school day.  Here, she has no speech therapy in school, yet she seems to be talking more.  When she started here, she really had just 2-3 word sentences, two of those words being “I want”.  Here she’s moved up to sentences of 3, 4, 5 words.  She even surprised her teacher one day when, as they were sitting in the darkened sensory room, she said “I want the light on please!”  (and yes, like good teachers, when they figured out it was Maura who said it, they turned off the lights to see if she’d say it again – and she did!)

There is something about a special needs classroom that – if done correctly – can be better than inclusion with therapy.  One of the problems with inclusion is that your child (or at least mine) spent a lot of time going from one room to another.  In a special school, she’s like a regular student in the fact that she spends most of her time in one classroom.

Case in point – in Michigan, a day for Maura could be – arrive at school, go to homeroom, spend 30 minutes there, then go down to resource room, spend 1 hr there, go to recess, come in, go to resource room for a diaper change, go to homeroom, go to lunch room, go back to resource room, go to music room, go to homeroom, go to speech room.

Here it’s – go to classroom, spend majority of time there in the morning, go to recess, go to lunch, back to classroom, one “special” a day like cooking in the kitchen, dancing in the activity room, or a trip to the sensory room.

With inclusion, our kids are expected to deal with a lot more transitions than a regular student.  Which is ironic as a lot of special kids aren’t great with transitioning.  In a special school, they don’t have to go here or there and be on a different schedule than their peers, which is probably less confusing as well.  And the classroom is designed to fit their needs, including a sensory break area, where they can go and chill out if need be.

I understand that 30 years ago, it was imperative to push for least restrictive environment.  The problem is that now, we’ve swung from one extreme to the other.  Before LRE, kids who didn’t need to be in a special school were shoved in there, and weren’t allowed to reach their full potential.  But now we’re shoving kids who need lots of help into regular classrooms that aren’t equipped to deal with them – and they’re not allowed to reach their full potential.

We need to find balance.  We need to have more choices.  We need to stop trying to shove square pegs into round holes.  We need to realize that a “free appropriate public education” doesn’t always equate to reading, writing and arithmetic, but should be about teaching the child what they need to learn to be as successful at life as possible.  We need to rethink our idea of special schools and realize the potential they have for filling in the gaps that some of our kids are falling into in inclusion programs.

And that’s just a few thoughts about that.  Heaven forbid if you get me really going on this subject!