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Following the leader

22 Jan

Maura has this weird habit in the mornings.  We get her up, we get her ready, etc…and then she follows me about the house.

I don’t know if she learned it from the dogs, or the dogs learned it from her, but on any given morning, I could be rushing about and have one child and two dogs hot on my heels.  We live in a split level house, and so it’s five stairs up to bedrooms, five stairs down to family room, main level in the middle.  Which means it gives Maura multiple levels to, say, hide her shoes.  I’ll go try to hunt them down, only to turn around and find a traffic jam of girl and dogs on the stairs.

It’s one of those little things that drives me batty.  Absolutely batty.  Every time, I’ll say “Wait here.” and every time she’ll follow me.  The dogs I can kennel or put outside at least.  But Maura will always follow.

Part of the problem I have with it all is that I’m trying to rush and hurry and get the thing we need quickly.  Maura doesn’t do quickly.  I will be down the stairs, grabbing the thing, and halfway back when I run into her as she tries to keep up.  So then I must herd her back to the main level.  If we’re cutting it close to the bus’s arrival, it’s especially frustrating, because I was trying to do that one quick last minute thing and now, time has to stop so Maura can follow me back.

Granted, when she decides to go get something, she can disappear instantly.  It’s one of her tricks.

This morning, I realized I reached a new parenting low.  Because after having to climb around both Maura and the little dog, and losing Maura because she was trying to find her new book to bring to school, and figuring out that it was the book she wanted to find, I told her “Wait here, I’ll go find it.”

I started down stairs, and she started to follow.

“No…stay here….stay here….stay….good girl.”

And I realized what came out of my mouth.

*facepalm*

Bad mom…bad!

 

The Elephants in the Special Needs Room

19 Jan

I posted about how inclusion/mainstreaming didn’t really work for us, and how going the dreaded special school/class has been the right choice, if not the popular one.

And boy, did I get feedback!  It was like I had just pointed out the emperor wasn’t wearing any clothes.  So many people saying “Yes!  Inclusion didn’t work for us either!  It’s not working for us! We need more options!”

Living in the world of special needs means, it seems that we keep so much to ourselves.  The most common feedback I get from the blog is “You put into words what I can’t say.”  and “I can totally relate!!!”   And I’ve realized, we don’t really talk about the elephants in the room.  Maybe because we’re too busy trying to keep them from stepping on tiny dogs and crashing into bookcases.

So I thought I’d point out some elephants.

SpottedElephant

#1  – My kid will live with someone FOREVER. 

This isn’t a popular thing to say.  “My child will age, but not mentally grow up.  She will need some sort of supervision for her entire life.”  Admitting that now means that I have had people tell me not to short-change my child.  “You never know!  She could become independent!”

Yes.  She could.  I would adore that so very much.  But the reality is, without some majorly miraculous mental growth spurt, we’re in this for the long haul.  And we must be prepared for that very real possibility.  And it’s okay if she has to live with us forever.  It just means we need to make different plans and have different priorities.  It doesn’t mean we won’t keep pushing her to reach her full potential.  It just means we’re more realistic about what that full potential is.

#2 – It’s hard.  It’s VERY hard. 

No, really, it’s hard.  Physically, spiritually, mentally hard.  And admitting it’s hard doesn’t mean we love our child any less.  It just means it’s hard.  I’ve got my chiropractor on speed dial.  I take Prozac to squelch my anxiety.  I quote SpongeBob.  I lock myself in the bathroom to have that good cry.  I realize with some terror that my child is nearly as tall as me and is just going to keep growing taller.  The word “puberty” makes me break out in hives.  Caregiving is hard.  Caregiving for a lifetime?  Is really hard.  But that doesn’t take any love away.  I will get all Liam Neeson “Taken” on your arse if you even imply I love my child any less just because I say it’s hard.

#3 – It can literally be a shitstorm.

We deal with more bodily fluids than an OB nurse.  Just last night, as I was going through comments here, I went “I smell poo.”  I went to investigate, and found my child, carpet, and bathroom covered in poo because Diarrhea Girl didn’t quite make it to the toilet in time.  After my initial crying out to God, I smiled at the girl, congratulated her for pooping so much, and cleaned everything and the girl up.

Because that’s just my life.  And so many others.  We deal with constipation, and diarrhea, and accidents.  We deal with vomit, drool, and blood.  We deal with things we’re not quite sure of, asking rhetorical questions like “What IS in your hair?” without really wanting to know.  And we do all this while laughing.  Because what else can you do?

#4 – Our sense of humor is different than the average person’s.

And by “different”, I mean, we’re kinda awful.  But we’ve earned that awfulness.  We earn it every day.  It comes from dealing with a combination of ridiculousness, bodily fluids, stress, and love. We have to have this black humor or else the tiny terrorists win.

#5 – We spoil our children, and we don’t care what you think about it.

I spoil Maura.  I can admit that.  I have always admitted that.  Not so much that she’s uncontrollable, but more than I would have if she’d been born your average every day girl.  I spoil her because I can.  I spoil her because she just gets so delighted with things, that it’s fun.  I spoil her because she goes through so many more hardships and struggles.  I spoil her because we don’t know what her lifespan will be, so I want every day to be her Best Day Ever!  – which may be as simple as getting hot cocoa together or snuggling in my bed watching a movie.

#6 – Our normal is not normal.

Our lives are so beyond normal that it isn’t even a setting on the television.  Our life was barely normal before we had Maura.  We gave up on any sort of normalcy after she came along.

And we’re okay with our not normal life.  Even though at the same time, it would be nice to have a break from said not normal.  We don’t want pity or platitudes about doors closing and windows opening, we want acceptance and the occasional child-wrangler.

#7 – Puberty is the scariest thing that will happen in our child’s life.

Seriously.  Puberty.  Enough said.

No need to stare...really...

 

 

Sometimes inclusion isn’t the right choice

16 Jan

This morning, yet another article about the wonders of inclusion for special ed students popped up in my social media.  It was about myths and misunderstandings about inclusion, dispelling those ideas of how inclusion is interruptive to the other students or costs more, or how it shouldn’t be seen as a fad.

All in all, it was a good article.  Yet once again, I realized that the choice we made for Maura is not the popular one.

When we lived in Michigan and Maura was about to start kindergarten, we were told inclusion was the only choice.  There was no other place suitable for her.  The district’s special school was for those with severe physical and mental disabilities.  We were actually told to be thankful Maura didn’t qualify for the special school.  And yet, the local school was unprepared for a student with Maura’s many needs.  Highly unprepared.  And yet, it was our only choice.

This is something those who sing the praises of inclusion don’t always witness first hand – a child with moderate disabilities going to a school that isn’t ready for such a challenge.  But neither party has a choice in it.  Inclusion will happen.

While we were uncertain of how inclusion would work for Maura, everyone told us how inclusion was the best option.  As we didn’t have much of a choice in the matter, we went ahead with it.  And it seemed to work.  Maura had many lovely wonderful staff people working with her, and school went as smooth as it could while behind the scenes, we fought with the administration for silly things like proper medical plans and seizure training for the staff.

Her second year in inclusion, I began seeing trouble with it.

First was the fact that because Maura was a special ed student with many needs to be filled, she actually had a busier schedule than her regular ed peers.  She transitioned more times per day than the average student.  She had more to do, because she had to spend time in regular class settings, but then also go for speech and OT and special ed time.

Maura was exhausted.  She’d come home and spend the evening screeching at us if she didn’t get some sort of rest time.  I couldn’t take her out in public because she was too tired and would have melt downs.  But because she was in an inclusion program, she had all these goals she had to meet.  The only way to cut her work load at school was to cut out things like art and music – classes she actually enjoyed and could participate in.  So we kept up the pace.

The second problem I discovered was that inclusion didn’t make Maura’s regular peers  more understanding of her.  Instead, in first grade, it became a “thing” to laugh when a special ed student cried, and call them babies.  It happened in front of me once, and it happened in front of my older daughter’s friends, who quickly told her what happened.  When I talked to the general ed teacher about it, I was told that this had been an ongoing problem all year.  All year.  So much for acceptance.

The third problem we discovered was that because Maura had such a full schedule, between regular academics, special ed academics, and therapies, she didn’t have time to learn a lot of what she really needed to learn – life skills.  Yes, we would work on these things at home as well, but she spent the majority of her waking hours at school, and was exhausted by the time she got home and not in the mood to learn anything.

By the time we moved to Ireland, I was sort of over the mythical wonders of inclusion.

And yet, we tried to get Maura into a regular school in Dublin as well.  Because special schools had the stigma of being for the “worst cases” in our minds.  Inclusion was the ideal.  Inclusion would help her mature and grow in ways a special school couldn’t.  Inclusion was the thing we should fight for, or so every website and article about it told us.

Luckily, the principal at the local school was blunt with us – they didn’t have the resources for a child like Maura.  But he got us in touch with the right people, and a spot at a special school was offered.

I’m almost embarrassed by my reaction to the special school the first time I visited it.  I looked at the students there, and thought “But Maura is my bright beautiful girl!  She doesn’t belong here!”   And then I went home and cried a little, because part of me knew that Maura was really actually disabled.

See, inclusion can give this idea that your child, with all their struggles and difficulties, is still somewhat normal.  That normal is still within reach.  They could learn how to blend.  They could be part of that normal group of kids.  It’s a false sense of security, even for those of us who are quite aware of our child’s challenges.  I also realized that despite being part of the “special needs community”….I hadn’t actually been around that many people with disabilities.  Most of us haven’t.  And yet there I was, in a sea of varying disabilities, for the first time in my life. It was overwhelming – I was able to admit that.

The second time I visited the school, my husband came along, and I was able to actually see the school for what it was – a place that could be very good for Maura.  The principal explained how while they did cover academics, the primary goals were life skills, preparing these children for adulthood.  Including potty training.

I allowed myself to get hopeful that this would be a good choice for Maura.  And it was.

What we learned at our time at a the special school was that inclusion isn’t for a lot of kids.  It might work for a few years, but as they age, they grow further away from their “regular” peers.  The gap widens.    At the special school, Maura’s peers were actually her peers.  She had a group of kids around her age, who were at her level.  She got to really be part of the community in the school.  Everyone knew everyone, and everyone was understood.

Maura still didn’t learn to write.  But that was okay.  She learned how to use the toilet thanks to that school, and let me tell you, toileting trumps writing ANY day.  She went to school functions, and discos, and outings, and birthday parties for classmates.

I also got to see how children like Maura could grow up. Her school was for ages 7-18.  I was amazed at how much the older kids could do, and that gave me hope that Maura would be able to get to that level someday.  I watched the teens tease their friends like any other set of friends, or comfort one when they got nervous.  In the walls of the school, they were the normal ones.

Maura’s time in the special school dispelled some of the myths of “Inclusion is always better” for me.

One was the idea that inclusion will help a special ed student mature more, because they will have their “normal” peers to model proper behaviors.  Yet as it turned out, Maura was one of the more immature students in her class.  She was also the last to be toilet trained.  I think it was because the special school’s goals were based around preparing these children for life after school, instead of meeting specific IEP goals or academics.

Another was the idea of special therapy times.  Maura had speech several days a week when she was in the inclusion program.  The special school didn’t have a speech therapist in house.  Instead, the entire class program was built around communication skills.  Her speech grew during her time there despite the fact that we didn’t do a single session of speech therapy the entire time there.

Mostly though, there’s this idea that sending your child to a special school means hiding them from society.  This was the furthest from the truth.  The students went on tons of outings, to learn how to use public transport, how to shop, etc.  They were known.  And the school was known as well.  When people asked us what school our kids went to, we’d mention Maura’s and the reaction was immediately “Oh!  That is SUCH a good place!”

And it was.

So when we moved back to the states, we didn’t want to throw Maura back into inclusion.  We had realized that for her, it wasn’t ideal.  We found a school district with a life skills program.  Maura is in a special classroom in a regular school, where she spends most of her day.  She is thriving.  Which at the end of the day, is all we want as parents.

I think, having been through all the school options for a special ed student, that the biggest problems we have in the U.S. when it comes to our students with special needs is that there aren’t options in most cases.  Originally, the problem was that students with some needs were thrown into special classes or schools, and left to rot.  But now, we have the LRE (least restrictive environment), where you’re kind of forced to try inclusion because it’s the only option.  And when it’s the only option, it’s not really an option.  In Ireland, we had the right to inclusion, but it was an option. The idea of the LRE had to be explained to them.  Seriously.  The social worker reading Maura’s forms had to ask what LRE stood for.

I am thankful that we found a place for Maura where we could have the option that was right for her.  No amount of inclusion in the world will make Maura normal.  But at least in her special class, she has the chance to learn the things she needs to learn.

So my advice for those of you who have a child with moderate disabilities, who aren’t sure about inclusion for your child and are offered a life skills program, or special classroom is this – give it a chance.  Take an honest look at the program, and what your child truly needs.  Special schools and classrooms don’t equate to giving up on your child.  It might be actually giving your child the best chance at meeting their own full potential.  It could be the best choice.  It was for us.

IMG_3592

Maura, waiting for the bus, wearing an Irish school jumper. Because she misses wearing school uniforms, lol!

 

 

 

 

 

 

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