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Thoughts on schooling for special needs

21 Aug

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!

 

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23 Responses to “Thoughts on schooling for special needs”

  1. JO August 21, 2012 at 8:30 am #

    I’m so impressed with your ability to put it all into words. I’m usually left- mouth agape, mind grasping for the right words- especially at IEP meetings where I have to pick my chin up off the floor multiple times. And you’re right about FAPE- my daughter had an 8 hour neuropsych eval and when we took the recommendations to the school they smiled and said “these results aren’t relevant because they weren’t conducted in a classroom”. What?!?! So we got an education psychologist to evaluate her in the classroom with… surprise! The same recommendations! Then we fought for an entire year for speech services for my daughter who has a diagnosed speech disorder and a seizure disorder that specifically affects language function in a progressively catastrophic way. Navigating the school system is even more frustrating than figuring out the constant stream of medical invoices and navigating the insurance system. And THAT is saying alot!

  2. Amy DeRogatis August 21, 2012 at 8:36 am #

    I live in Michigan and I had a number of choices for my son Joe. In the end I choose to put him in a special needs classroom (basic) in a local public school that serves the international university population. For most of the kids english is their second language, so almost everyone there has some sort of challenge. Most parents of kids with DS choose mainstream classrooms, but I have found for my son that the being with his peers in a smaller classroom and forging strong friendships, as well as having people qualified to assess and meet his needs is superior to to a mainstream classroom. The only tough part of this decision was that it is not a popular choice among the DS community. Thanks for the post. You have expressed much of what I feel about the importance of choices for each kid, not just blanket choices for all people with the same diagnosis.

    • phoebz4 August 21, 2012 at 8:43 am #

      Yeah, it does depend on where you’re at. I’ve heard great things about Oakland County. In Washtenaw, where we were at, we had one choice – inclusion. I asked what my options were, and was told that “Don’t worry, we’ll meet all her needs here.” I asked what would happen if inclusion didn’t work out and was told “Oh, don’t worry, we’ll meet all her needs here.” One mom did push a bit to see other options and was shown classrooms for children with severe disabilities and “See, your child doesn’t require this, he’s too high functioning.”

      Sometimes, it really comes down to that one person who gets to make the choices for you.

  3. mimi August 21, 2012 at 8:41 am #

    Totally Agree! Been touting these very ideas to deaf ears!!! Sad thing is there are many parents who are causing these promblems because they are unable to come to terms with their childs disabilities! So they push for the “norm” in the classroom when the “norm” may be different for their child. Not saying we should abandon hope for children but we need to be realistic in the approach! Thanks for the blog it is wonderful!!!

  4. Courtney August 21, 2012 at 9:07 am #

    I agree completely with what your daughter and my daughter need to learn in life. I need Ella to learn how to look both ways before crossing the street, not algebra. I need her to be able to buckle her own seatbelt, which is turning into a more complicated thing for the precious baby than most of us even think about. I need her to understand she cannot just leave the house whenever she wants or walk up to anyone and ask to go into their house. I need her to learn how to dress herself, tie her own shoes, and not open the restroom stall door while Mommy is peeing because she is done and wants to leave NOW. I also feel guilty her father and I don’t attempt to teach her more, but like Maura, after a day of school and learning and excitement; Ella is done when she comes home. No other way to say it, she is done learning and wants to relax, and most of the time we let her. We don’t just let her, we revel in it and thoroughly enjoy our time with her. She is lightness, sunshine, happiness, and cuddles rolled into a curly haired, blue eyed beauty.

    • phoebz4 August 21, 2012 at 9:14 am #

      It is very hard to be both parent and therapist, especially when you’re handed a tired child after school. We need to have a chance to enjoy our children too – very good point!

  5. erin August 21, 2012 at 11:48 am #

    Just wonderin if you are paying privately for this school? It sounds wonderful but anything like that in canada costs money-usually a lot. As always love your posts:)

    • phoebz4 August 21, 2012 at 12:05 pm #

      NO! It’s at almost no cost to us (we pay for things like outing money and field trips of course.) They get some monies through the health care system and education system. But they also do a lot of fundraising.

  6. Dawn August 21, 2012 at 3:14 pm #

    I am a special education/ resource teacher in Canada. There has been a huge movement in my division to “universal education” which, in my opinion, is another word for “mainstreaming.” I found it very amusing when you said that you were frequently told you that your child’s needs would be met in any classroom in whichever school they went to, as that was the policy of the board – and your opinion of that. We are told that this is what we are to tell parents who ask about special programming at individual schools. At my school – I have fought hard to establish and keep what I have called my “SIL” program, it stands for “Skills for Integrated Living,” luckily with the support of a super principal. I have a number of amazing educational assistants who work one-on-one with children in the special classroom where they spend most of the day. I have a sensory room and kitchenette built into the room. Integration is determined by the child’s ability to handle and benefit from it, and I work with classroom teachers to help them provide meaningful activities for exceptional students in their classes. I often wonder if I am doing what is in the best interest of my students (grades 6-8), and you have affirmed that. I always seek the opinion of parents, and with your post here being a bit more candid than what a parent might say to me in person, I find it very helpful.

    • phoebz4 August 22, 2012 at 4:29 am #

      I am glad to be of help!

  7. lacairre August 21, 2012 at 5:05 pm #

    Thank you for sharing you experiences as a parent! I am a special education teacher and have to say, many teachers sit asking your same questions! I ask them every day…

  8. Ellie Williams August 21, 2012 at 9:20 pm #

    I am a special education teacher at Greene County High School in South Mississippi. I see several things that you are absolutely right about. First this is the LRE. The IDEA states that students should be placed in THEIR least restrictive environment, NOT in THE least restrictive environment. For some students, inclusion is their least restrictive environment. For others, it is not. You are right that the parent’s signature is not absolutely necessary. What we do in our County is send a notice of the meeting time and date. We ask if the parents are able to attend, and if not, when would be a better time for them. If we get no response, we call and send another notice with a new meeting time and date (again asking if there is a better time for them). If no response is received, we send the third (and final) notice certified (again asking the same questions). Once we receive the card from the post office saying they have signed for the letter, but did not attend the meeting, we hold the meeting without them. We feel that after receiving three notices (one of which is certified) and still not attending, then they must not care about their child. At my school, we do our best to provide everything each child needs. Do we fall short sometimes? Sure we do, and we use these times to improve. We do not use the IEP to create loopholes to avoid having to do something or pay for something for your child. We try to put everything your child could possibly need into the IEP. (Yes, I know that our school would be considered a rare bird.) We have the inclusion setting for most of our students (which is NOT always the best). We also offer a GED Prep class for the Special Education students of ours who cannot pass the State Tests. Then we have a Daily Living Skills class for the students who cannot function in either of these settings. I hate to hear of Special Education being abused by anyone, whether it is the teacher, parent, student, or district. I am the Special Education Director at my school and am currently working on the degree I need to become the Special Education Director for the county. Heaven help them when I reach that position. I plan to revamp things to try and make them better for the students and parents, as well as clean house on some teachers that won’t do their jobs.

    • phoebz4 August 22, 2012 at 5:06 am #

      RE: loopholes. I’ve seen it done to myself and others in our district. The main perpetrator of said loophole was the director actually, when we pointed out that our children were getting shortchanged. It was the way the IEP was worded – that Maura would receive 15-30 minutes of OT up to 2 times a week. Well, she wasn’t getting a lot of OT, and the Special Ed Director was all “Oh, but we’ve fulfilled our obligation b/c she got 15 minutes of OT this week.” I was a bit annoyed by this (as my daughter has lousy fine motor skills, can’t write, can’t zip or button, etc.) So when it came time for the new IEP, I insisted on adding the “per day” phase.

      But yeah, I know a district who could use you as their Special Ed Director 😉

      • elliecolson@yahoo.com August 22, 2012 at 6:12 am #

        I have a daughter with a physical disability, so I understand about getting her the PT and OT that she needs.
        Sent from my Cellular South BlackBerry® Smartphone

  9. umhbchelle August 21, 2012 at 10:40 pm #

    Wow. I am in awe of how you articulated this! I am a teacher, (tutor for struggling regular Ed students) and agree whole hearted-ly with you. Every child should get what THEY need to be successful in THEIR life, not the life I think they should have. Well said mama! (I pinned to pinterest so my teacher friends could see!)

  10. Christine August 21, 2012 at 10:41 pm #

    Preach it, sister! Really, it ought to be about what is best for the children.

  11. marpou August 22, 2012 at 3:31 pm #

    Thank you again for another wonderfully expressed piece of life that so many can relate to. I’m in Wayne County, and have encountered not only what you have detailed, but also the first respondent, Jo. Actually, all the folks. Anyhow, thank you.

  12. Ida August 22, 2012 at 9:02 pm #

    Well said! My thoughts exactly…just could never put it into words!!! My son Joey has Down Syndrome, so I am very familiar with IEP’s and really how ridiculous the whole process is for him. I wish his school was like Maura’s…life skills are essential for Joey – and by the time he gets home from school and daycare, he too is finished!!! I am glad that your daughter is getting what she needs!

  13. Neurotic Iraqimom August 23, 2012 at 8:26 pm #

    Im just about now entering into that process and its already scaring me! Your post is extremely informative especially for us first timers…I have my first Public school meeting on monday, and Im hoping, crossing my fingers that I will get my son into the school that I really really want him to go to…

  14. Amy McGinley August 27, 2012 at 8:48 am #

    I agree with you–AND, I’m a Special Ed teacher. The LRE is NOT always inclusion…and you mentioned all the transitioning that goes along with inclusion…you’re dead on again! I think I’ll copy your post and plaster it everywhere. Unfortunately, even though so many probably agree with you–higher up admins., i.e., our government, won’t make the necessary changes. Oh, and don’t forget about the ridiculous NCLB mandates that include students with special needs. Some students need to be assessed on life skills….reading instructions/directions, using public transportation, shopping in a grocery store. These are just some examples of things I think are important for the success of some of our students!

  15. janet August 27, 2012 at 12:54 pm #

    The one thing I really like about time in the home room is that the students get to know our children and know them for who they are. Many times they stand up for them and protect them

    • phoebz4 August 27, 2012 at 4:00 pm #

      Yes, that can happen. Unfortunately for us, we had an opposite reaction as well. Maura was walking someplace in the hall, crying about something, and one of Maura’s older sister’s friends stopped to try to cheer Maura up. A group of Maura’s peers were nearby and were all “Ha ha! You have to take care of the baby!” The friend told Miriam, who came home really put out about this.

      I thought it was a fluke. That maybe something got misunderstood in the story telling. But then that same week, I was at the girls dance class, and Maura was crying b/c she was tired and couldn’t understand why she couldn’t go dance with her sister (Maura’s lesson was first, Miriam’s was second.) As she laid their crying, one of her dance classmates, a girl who’d been in class with her for two years, who knew her, looked at her and said in a mean tone “Ha ha! You’re a baby!” My mouth literally dropped and I looked at another mom who had the same shocked expression. I said “Excuse me?” and the little girl got wide-eyed and ran off.

      When I told the teacher at school what was going on, she said “Oh, yes, we had that problem at the beginning of the year too.” I was really surprised, as I was not informed. Turns out another special ed student was also being made fun of similarly by his classmates. It was a bit sad – these kids were 7-8 years old and despite knowing the special ed students for two years, many still chose to make fun of them.

      There were others who were great – do not get me wrong. I have many more positive stories from Maura’s siblings peers, who were all pretty fabulous. But I was literally stunned into silence when the teasing happened right in front of me, and stunned some more when I found out that this was actually a common problem at school that was not addressed. Maura and the other special ed student may not have understood the teasing – but my daughter, her friend, the other SE student’s sibling knew. And it hurt them.

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