Tag Archives: life

Feb 24 2012

A rebuttal of sorts

An article from the Huffington Post popped up in my Facebook feed, via a special needs parents organization.  The title – “Isolating a Child with Disabilities Can Do Life-Long Damage“.  On initial glance, I thought “Yes, good point.”  So I clicked on the link and read it (feel free to do the same thing.)

By the time I finished reading the post, I found myself disagreeing with the writer.  Because while I agree with the initial statement and the point of the post – which is getting our special needs kids out there into society – I realized that the writer came at it from a very one-sided position.

Her post was all about letting your different kid be normal, do normal things, not be held back by disabilities, and very pro-inclusion, whether that’s the school or social setting. Which again, as a theory, I do agree with it.  I mean, we’re notorious for not letting Maura’s disabilities hold us back from life.  She is dragged along everywhere just as much as our older three so-called normal kids.

My problems started when the writer – who I actually wondered at one point if she had any exposure to special needs kids – basically stated that parents avoided normal settings for their special kiddo because it was the more comfortable option…

…and I quote – “In an effort to make life as comfortable as possible, some parents will seek out special schools, groups, or activities catered to their children, so that they will only have to deal with children who share their disability.”

I call bullshit on this.

That’s right, I said bullshit.

The writer does have a disability herself, and alluded that her child also has a disability, which really makes me wonder how she can make a statement like that.  Maybe she’s really out of touch.  Maybe I’m the one who’s out of touch.  But I know for damn sure I didn’t choose a special school for Maura out of comfort.  I chose it  because they were the most able to deal with her wide range of disabilities.  I chose it because it was the best choice for my daughter, not for any narrow-minded feelings I might have.

Granted, I’ve experienced both a mainstream situation and a special school.  In the U.S., where we lived, there were no special schools for my daughter.  I only had one choice – mainstream at the local public school that wasn’t prepared to take on a child with moderate disabilities and had to do a classroom/bathroom modification, hire a teacher and aide, and out staff through medical training.  I worried that as she grew, she would get more and more distanced from where her NT (neuro-typical) peers were at, that she would become even more isolated than she already was.  Yet, there were no other options for her.  Mainstreamed with modifications was our only option.  An “option” that  doesn’t work for every child with a disability. (And yes, I’m putting quotes around “option” because by definition, an option is being able to choose, which requires more than one thing to choose from.)

When we got to Ireland, we found out that we got to make a choice between mainstreaming or a special school. We made what we considered the right choice for our daughter and have not regretted it.  While the special school does do academics, it isn’t the main focus, like at her old school.  No, the main focus is to get these kids as independent as possible.  They have cooking classes, go on outings to the store to learn how to use money, go to the library to learn how to check out books and videos, learn how to ride a bus, put on their clothes, how to use the toilet.  Things my daughter needs to learn.  Things they didn’t have time to cover at her mainstream school because they had to meet academic standards.

Here’s the ironic thing – while the writer of the article scoffs special schools, she then writes - “…children with disabilities need to be exposed to the same life experiences any other kid has. They need to be exposed to a variety of people and situations.”

Maura has been able to gain more life experiences through her special school than being mainstreamed because of the focus on life skills.  In a regular school, she wasn’t getting the same experience as the other kids because her special needs still had to be met.  She was pulled out of the regular classroom about two and a half hours out of the day at least for therapies and specialized education and diaper changes and medicine dosing.  Being in the same school building did not equate to the same school experience. At her special school, she has the same experiences as her peers, and actually more experiences than her sister does (Miriam is quite jealous of the cooking classes and swimming every Monday.)

But really, I think the writer of the article is missing a point – just like  none of my “normal” kids are alike and have the same needs, kids with disabilities don’t have the same needs.

It’s one thing to have a child with mild Asperger’s – which qualifies you for an IEP and extra help at school – versus having mental and physical disabilities plus medical needs, or in IEP terms – multiple impairments.  A child with mild Asperger’s can be held to the same standards as his NT peers, can be expected to get to class on time, should be able to choose his experiences just like his classmates.  I know this because my one son has mild Asperger’s.  It causes some quirks and bumps in the road, but  we don’t treat him as a person with a disability- we treat him as our very capable son with the amazing brain.  That said, when he needed extra help, we made sure he got it.  It wasn’t coddling, it wasn’t being over-protective, it was doing what was right for him in that situation.  Which gave him the skills he needed to be able to do those things independently later on.

On the flip-side, we have Maura.  Who is amazing in her own way.  But she needs lots of help.  She is not a typical kid.  She will never have typical experiences, because she doesn’t have typical reactions.  For instance, she loves movies.  When they make her happy, she squeals loudly with joy.  When there’s a sad scene, she will be overly-empathetic and burst into loud tears.

While we include her in everything possible, the plain fact is, she is different.  And her differences do factor into what experiences she can manage.  As she ages, she falls behind more and more on the developmental charts, which means putting her in with NT kids isn’t the best option for her.  Sometimes, she needs that “special group” the writer of the article scoffs at – because that’s the experience she will get the most out of, and have the most fun with.  Because a specialized group is the right choice for her.  Not the coddling one.

Really though, there are so many articles and advice columns about what to do with a child with special needs.  And the pressure that if you don’t do the right thing, you’ve failed as a parent and have failed your child.  I wonder how many parents have read this article and are now doubting their choices?  I wonder why, even as parents of kids with special needs, we feel the need to say “You should do it THIS way!”

My advice to parents – do what think is right for your child.  Trust your gut, and let them surprise you.  I don’t know your child well enough to make emphatic statements about what should and shouldn’t be done with them.  Choose the school setting that will most benefit your child and meet the most needs. If your special kidlet is great at sports, then put them on that soccer team.  If they like music, expose them to more of it.  At the playground, let them try things…even if it means you hovering around them in mid-heart attack (okay, I’ll admit, that one is tough for me.  Anxiety, a tall play structure, and a child with balance issues is an interesting combination. The compromise is I go out of view and have someone else play spotter.)

At the same time, don’t set your child up to fail – whether that means having too much help or not enough help.  Sink or swim doesn’t work with every child.  Sometimes, it backfires and the child drowns in their failure, doing more harm to their self-worth than if they’d had help floating.

Really, we all need to realize that the World of Disabilities is a large one, with many variables.  Tough love doesn’t apply to many cases.  Nor does one-sided advice.  Do what’s best for your child – that’s all any parent can do.

 

Feb 11 2012

Laundry Day

I found myself in need of doing lots of laundry today.  In the States, that would be throwing stuff into the big washer, coming back forty-five minutes later, throwing them into the over-sized dryer, wait another forty-five minutes, then whine a bit about having to fold warm clothes.

I miss those days.

This is my kitchen…

my kitchen

See there…to the left…that little white machine?  That my friends is my washer AND my dryer.  It fits about half of what my Maytag could fit.  It takes almost two hours to wash one load.  To use it as a dryer, I have found that the best way to get things dry is to take out half the load, put that half in a basket, then set the dryer setting for an hour for what’s left in there, wait the hour, take out the mostly dry clothes, put in other half, set for another hour…

Needless to say, spending four hours on one load of laundry just doesn’t cut it.  So I only use the dryer setting when absolutely necessary.

Instead, I use the drying racks or wash line outside.  As it’s not ideal weather for the line outside, I’ve gone with drying racks.  And as I have a cubic crapload of laundry to get dry today, I’ve taken over every available surface.

I have laundry here..

kitchen door

…here…

drying rack in bathroom, plus pants slung over shower door rail

…here…

little drying rack that you can hang off your radiator - perfect for socks!

…here…

living room door

…here…

dining chairs and radiator

…here…

Maura decided her duck needed a bath, so he's drying on the front hall radiator too

…and on the five foot seven inch drying rack in the upstairs bathroom…and shower door…

lots of clothes drying!

Hey, you can see one of our electric showers there…ooo…ahh…(It’s the box on the wall in the shower area…note that’s a sheet drying over the shower door…and the shower door doesn’t extend past half the bathtub length…that’s just how it’s done here.)

We won’t discuss what’s drying over the radiators in various bedrooms.  That would be unmentionable.

The nice thing is – with this much laundry hanging around, on the radiators, you don’t need any cotton/linen fresh candle or spray.  I’ve got it happening naturally!

I would still kill for an extra-large capacity washer/dryer set.

oh, if only it was a sunny day....

Jan 27 2012

Well there’s your problem!

As you may know, we recently acquired a cute little puppy named Zoey.

Zoey is a great little girl dog, has proven she’s extremely smart (by trying to hide stuff behind her back no less) and very loyal (one night, I was upset about something, and she came over to nuzzle me…awww…)

But we’ve had one problem with our fuzzy girl – and it happens every morning about 5:30 – 6 am.

bark.

bark.

Bark.

BarK.

BARK.

BARK.

whine.

bark.

Bark. BARK! Bark. BARK! Bark. Whine whine whine BARK! BARK! BARK!

Cursing. Stomping downstairs.  Letting puppy out to go potty.  Cursing some more.

We’ve tried to find ways to alleviate these early morning wake up and take the dog out for a potty break episodes.  Food and water dishes don’t get refilled after 6 pm.  Josh has tried playing with her and keeping her away until at least 11 pm.  We’ve taken her for long walks after 9 pm.

And still…

Bark BARK bark Bark BARK

We were getting seriously cranky around here.  Because when you’re staying up late to try to make a certain puppy tired, only for puppy to wake up at the crack of stupid every morning…well…you end up with two cranky adults cussing out a certain otherwise lovable puppy.  The thing was – we knew she could hold it for more than five hours.  A couple of weeks ago, Josh was out of town and I ended up falling asleep on the couch watching a movie.  That dog stayed happily in her kennel from 10 pm to 7:30 am without a single bark or whine.

So why?  Why could she not do this every other day?

And then…yesterday morning… I wake up at the usual 7 am time (after listening to bark BARK bark BARK, elbowing Josh, who got up muttering very bad words about the puppy and going downstairs to deal with her, allowing me to go back to sleep for another 45 minutes) and I hear Josh talking to Collin.

The father/son heart-to-heart went something like this -

“Oh for God’s sake!  If you’re up at 6 am, let the damn dog out so she doesn’t sit in her kennel barking!  Sean!  Get in here!  You need to hear this too!”

Yes, it turns out that the problem was NOT the puppy, but the boys – who are getting up earlier than their sleep-deprived parents, going downstairs at 6 am, fixing bowls of cereal and lunches, taunting the dog with the fact that there were humans with opposable thumbs who could open her cage and let her out but wouldn’t – instead, leaving her to cry yellow tears and cross her fuzzy little hind legs as they went along their merry ways back to their rooms to get dressed and ready for school.  And after they abandoned her in her time of need, she’d start calling for help – because once awake, she felt the need to go.

This morning however, there was no barking.  Some boy listened to their parents pleas of “Just let the poor dog out so she doesn’t bark us awake!” and let the puppy out of her kennel and outside to relieve herself.

Of course, I woke up at 7 am to Miriam talking to Sean and Maura at my bedroom door and thought “Odd, everyone is up.”  (Usually, the girls need a cattle prod to get out of bed.)

Turns out we need another rule – if you let the dog out at 6 am, you either need to keep an eye on her, or put puppy love back in her kennel.  Or else she will go up to the girls room and lick their faces until one or both of them gets up.

Oh well, I don’t care.  I didn’t wake up to barking this morning!  Here’s to more mornings being bark-free.

She's cute when she's not barking at 6 am

 

 

 

Jan 18 2012

Realistic Optimism

It was my therapist who dared to say it to me for the first time.  I had Maura with me during that session – cute little three year old Maura, being her happy self, wobbling about and probably sucking her thumb.  My therapist looked at her, and said “You do realize she’s probably going to live with you for the rest of her life?”

I blinked.  Then answered as matter-of-factly as she had stated the question.  ”Yes.”

And at that moment, I knew it was true.  I didn’t feel despair.  I didn’t feel grief.  I didn’t feel anger.  I don’t think I felt anything negative.

Just relief.

I know that sounds weird.  ”Why would you feel relived that your child was going to be too impaired to live independently?” one could ask.

The answer is that at that point in time, no one bothered to address the big polka dotted elephant of “she may not catch up” in the room.  We all knew it was there.  It was hard to miss it there.  But instead of addressing the elephant of possibility, people tried to cover it up with blankets of “Hope!” and “Maybes!” and “Who Knows?” , and threw a lot of “Have you tried this?” at me as a distraction.

In the beginning, we were told that maybe Maura could catch up by kindergarten.  That her delays were just that – delays.  There was a time I got caught up with all the “You MUST try THIS!” hype thrown at parents of children with delays.  I tried the supplements and special toys and therapies.  The therapies did help a bit – but progress was still at a snails pace.  Still I was told “Well, you need to do PECS!” and “What about sign language?” and “Have you tried this NEW therapy?”

Do you know how overwhelming it all is?  Do you know what kind of blame and guilt a mother can put herself through because her child doesn’t catch up despite shoving fish oils down the child’s throat while watching “Signing Time” videos in hopes that they would produce words?  Only to show up to evaluations and have little progress made?

I remember those days vaguely.  At first, I spent too much money looking for the magic toy that would stimulate her brain just right so that something would spark within there.  Then it was trying to find a label for her issues, so I could then find out how to fix them.  And with that came  the fights with insurance companies to pay for doctors or therapies – plus fighting with places to get the actual therapy.

It was frustrating, expensive and depressing.  Which is how I ended up with my own therapist.  Who one day said “Hey, there’s a big polka dotted elephant in the room – have you noticed?”

I had to admit, I knew the elephant was there.  I just never wanted to look at it.  Part of me wanted what everyone else kept saying to be true – keep the faith, keep doing all you can, and your child will be the one to beat the odds and become normal once again!

But once forced to look at the elephant…well…the elephant wasn’t that scary.  The idea that Maura could live with us forever wasn’t either.  Maura was a delightful child, who loved going places and trying new things.  She was easy going and able enough.  It wasn’t “ideal” – but I knew it could be worse.  If I had to live a lifetime with a child, Maura was an ideal candidate.

Admitting all this was a bit of a relief.  I could look something once unthinkable in the eye, confront it, and walk away unscathed.  It wouldn’t be the only time I’d have to deal with Harsh Reality when it came to Maura.

It also meant that if she didn’t progress far enough between evaluations, that I hadn’t failed.  We also didn’t feel the need to cram a thousand therapies into our lives.  We could enjoy life, teach Maura at her pace and give the attention the other three children in the house needed.

It seems like though, that when I tell people Maura will live with us forever, I’m admitting to giving up on Hope.  You MUST have Hope!  Hope keeps you alive and moving forward!

Which is true.  But Hope can also cause you to have your heart broken time and again.

If we had held on to the Hope that Maura would catch up by kindergarten or so, like we’d been told time and again, we would have been setting ourselves up for some intense heartbreak.  Because not only did she not catch up by kindergarten, she was further behind than we’d ever dreamed that first year of therapies.

Maura started kindergarten with the mental age and capabilities of a two year old.  She was not potty trained.  She could not speak in sentences.  She needed a full time aide to be with her, to do things like change her diaper, open her lunch containers and be by her side if she had a seizure.  Maura starting kindergarten was traumatic enough for me – it brought me to tears a few times.  I can’t even imagine how much more traumatic it would have been if I had held onto the Hope she’d have caught up by then.

All that said – I haven’t given up hope.  I just don’t believe in the shiny happy feel good Hope!  I am realistic about my daughter, but always optimistically realistic.   We work with her to achieve as much independence as possibly while planning  for her long term care.  We challenge her to prove us and everyone else wrong, while realizing that in some instances, we’re right.

See, we can teach her things, and help her be more self-sufficient.  But we can’t do anything about her maturity, or lack of.  That portion is out of our control.  In many ways, Maura has the independent streak of any 8 year old, coupled with the immaturity of a 3 year old.

There was a day a couple of summers ago, when Sean and Maura were out in the front yard.  Sean had a long rope that he was twirling about.  Maura – in true puppy form – started laughing and chasing the rope as Sean dragged it across the lawn.  Josh watched them for a moment and said “Yeah, she’s going to live with us forever.”

And then we laughed. Because sometimes, all you can do is accept something with a laugh and make the best of it.

Which is what we have chosen to do.

 

 

Jan 11 2012

What to do, what to say…

All this blog traffic has got me thinking,  ”What shall I blog about?”

Do I blog about how for the first time in…um…yeah…I not only got my Christmas decorations up in a timely manner, but I also took them down in a timely manner?  (Okay, today.)  Which is a huge accomplishment in my world.

Do I reach down into my inner depths and come up with something thought-provoking?  With Spongebob on the telly?  Yeah, that’s not happening.  One cannot think deep thoughts while Spongebob is crying over not being able to go to work.

Do I try to clear up misconceptions about what people are saying about how I view Maura all over the interwebs?  Tempting…but again, Sponebob the Brain Cell Killer is on tv.

Do I talk about how to sit on the couch today, I had to move a laptop, three penguin dolls and a lunch box? Or how Halloween decorations are now on my table because I put them in the Christmas storage boxes “for the time being”, and now need to find a new box?

Maybe I should talk about this puppy, who is attached to our ankles at all times and wants one of us within sight at all times.  Separation anxiety much Zoey?  Or how good she was at Show and Tell today, shaking Mim’s hand when asked, and then stuck her paw out for another “shake”.  Or how worried I was that she’d pee in the school, but thank goodness didn’t.

Or I could just post this picture of Miriam’s hand, which in her new-found love of astronomy, she decorated with a slew of stars…yeah, I think I’ll do that.  Genius doesn’t happen every day you know!

note the fingernails, each painted with a different sparkly color.

 

Jan 4 2012

Getting to know…ME!

My blog has been receiving tons of traffic lately (which I’m still blown away by), so here’s a little “25 things about me!” thing.  enjoy!

1. I hate getting my picture taken.  I think I look goofy in most pictures.  Just trust me when I say I’m much better looking in real life.

2. I’ve had psoriasis all my life.  I tend not to get worked up by that fact, except when I’m really itchy.

3. I have developed a warped sense of humor, thanks to life and stress.  It’s how I deal with things.

4. I hate mayonnaise.  So I moved to a country that puts it on everything.

5. I love glitter nail polish.  Love it.

6. I met my husband on the stage of our college’s theatre.  It explains our life and children.

7. I’ve been married 16 years.  I’ve been watching Blue’s Clues for 15 of those years.

8. I was born in the backseat of my grandfather’s Mercedes.  It’s one of my favorite things about me.

9. I once danced on stage with the band Train.

10.  My oldest had inherited my penchant for sarcasm.  And I’m proud of that.

11. I suck at all sports.  Badly.  3 1/2 years of P.E. in high school nearly did me in.

12. Four years of French never stuck.  But I have a freakish memory for inane details, like the outfit I wore when I met my husband.  Or conversations with friends from 20 years ago.  And phone numbers from my childhood.  Basically, as long as the memory isn’t in French, I’m good.

13. I love Gene Kelly.

14. My youngest and I love the band Great Big Sea – to the point I’ve taken her to three of their concerts.  Yes, they are that good live.

15. In everyday living, I deal with adhd, Asperger’s, epilepsy, developmental delays, cognitive impairments, apraxia, anxiety, sensory issues, and probably other things that I’m forgetting.

16. As a child, I couldn’t pronounce s, sh, ch, j, g, z, and r.  As an adult, I impress the hell out of speech therapists because I speak so clearly.  Get me tired, and my r’s are the first to go and people think I’m from New York.

17. I hate being cold indoors.

18. People think having kids is what made me crazy.  I let them think that.  Silly people.

19. I grew up in Chicago, have lived in various parts of the U.S. and am now living in Ireland…just a few miles from Bono…who I am not stalking…really…

20. I’m near sighted in one eye, far sighted in the other, and have astigmatism in both.  Even my eyes have to be weird.

21. I have a LOT of opinions that I don’t share, and random odd babble that I do.

22. I love the beach.  I’m just not that big on swimming, tanning or water sports.

23. There was a drug bust down the street from the church after our wedding rehearsal.

24. I taught myself how to sew, knit, and crochet.  Not in that order.

25.  I used to hate my name.  I’ve grown to appreciate it over the years.