Wednesday, July 18, 2007

Don't Be Afraid

Abfh has put up a really funny and thoughtful response to one of my favorite essays I use to try to knock a clue into the clueless, Welcome to Holland. If you're one of my friends without special needs kids, I recommend reading both essays. They are both wonderful gazes into coping with a life that isn't going as expected.

One thing I mentioned in my comment to abfh is that there is a basic attitude and ignorance problem in the "normal" world regarding not only autism, but special needs generally. The example that goes in context here are the parenting and childbirth classes I took when I was pregnant with Joey.

The textbook that came with the class does have a chapter on special needs children. It mostly focuses on problems with premies, but it also mentions things like Down's Syndrome. Autism isn't mentioned at all. The information is mostly about testing, and "talk to your doctor." Thre is very little useful information. The possibility of having a special needs child was only mentioned in passing in the class itself- mostly Down's Syndrome, and a mention that some kids might need some time in the NICU, especially if they are premature.

Why omit this very real and natural possibility? Why not bring it into the discussion, and let expecting parents think about preparing for the possibility? It's like being on a plane to Italy (you knew this part was coming, didn't you) without even having the suggestion that landing in Holland would be a possibility- and in fact, many excited holiday-goers have no clue that a plane routed for Italy could possibly land anywhere but Italy, or even that other countries exist. I mean, what if the plane lands in Lichtenstein (a country of which I am also fond)? I know a lot of people who have never even heard of Lichtenstein.

Wouldn't it be far better to note the possibility, so that we can at least take a peek at a tourguide of Holland before getting on the plane, or have an idea of where the embassy might be? But this is not the prevailing attitude "out there" in the "normal" world. Instead, instructors are concerned about frightening new parents "unnecessarily." Frightening them?

Standing in front of new and expecting parents, I think the first thing to say is "don't be afraid." The second is, "expect the unexpected." Even "normal" kids have "special needs." Some people just need more support than others to be able to survive and thrive. A child with special needs- born with them or otherwise- simply needs some extra support. How much depends on the need. What we should be providing is some basic resource information. OK, your kid has special needs... now what?

Parents who themselves have special needs seem to have a firmer grasp on the concept, because the possibility is so very present to them. For people who have never really dealt with special needs and disability, the whole idea is foreign. These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is. These things are not part of their world. When I spoke, once upon and a long time- over a year- ago, about the day the word "autism" came into my life, that is really how it felt. I had no idea. And folks, I'm a very educated person. I know why people think of Rainman when the word autism drifts in- its the only exposure people had, if they had that much. Nowthere's a couple other pop culture references, but no more real education out there for the general, run-of-the-mill Nellie or Nathan Neurotypical.

People with "special needs" and disabilities are different. Different is unknown. Different is scary. But why? Take the fear out of the possibility of having a special needs child. Special needs kids are kids, like all other kids, with their own talents and gifts to offer, and their own lives to live. Don't be afraid. All kids come with challenges.


Niksmom said...

Oh you are so right on about the prenatal teaching. In fact, after Nik was born, we still didn't really get any education or support from the NICU social workers. There was no parent support group in EITHER of the hospitals where Nik stayed. We were completely lost and overwhelmed and it took months for us to get our feet back under us at all. That has been the catalyst for me to get involved with the birth to three program in our state and to reach out to parents when I can.

abfh said...

Even "normal" kids have "special needs."

Absolutely. I believe every kid ought to have an IEP. Then identifying a child's most effective learning style would be just a routine part of a school's responsibilities, and you wouldn't have jerk administrators trying to do as little as possible because they're only dealing with a few "special needs" families.

Thanks for the link to my essay, and you're right about the woeful lack of information for expectant parents. Some teenagers and young adults with Down Syndrome are now getting involved in advocacy efforts to provide accurate information to expectant parents, so that the parents don't rush to the abortion clinic as soon as they get the prenatal diagnosis. How very sad that these teenagers are growing up in a society where they have to do that.

Joeymom said...

Personally, I see no point to prenatal testing until appropriate, high-quality and accurate information is generally and routinely available to expecting parents. testing ought to be for helping a parent prepare for the child, not destroy it.

Maddy said...

'These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is.'

......those people are........Brits!

Everyone in the medical profession is a doctor, no matter what the specialty and as for dentists! I'm not sure that we even have any.

The Jedi Family of Blogs said...

Right on!!

The fact that any mention of having a child with special needs is seen as "frightening" prospective parents shows the lack of value our society has for people with special needs. Sigh. We had no prenatal testing at all for Brendan. I had worked with developmentally disabled kids for many years & didn't find it a particularly scary outcome- especially in the light of the fact that it took me 7 years to get pregnant... my husband & I were very happy to get what we got, kid-wise. Also, we really didn't want to travel the slippery slope of one test coming out ambiguously & leading to the recommendation of another even more dangerous one. As it is, what we wanted out of the whole experience was to become parents- & that's just what happened! :) We're very happy to be Brendan's parents, special needs & all.