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.