~"“Re-examine all you have been told. Dismiss what insults your soul.” ~ Walt Whitman
What really annoys me is when people refer to me as a "special needs" parent. I really don't like that title-and I really don't care for the word "special" in this sense. ( I wrote about this here (way back in 2009)) I'm really not sure what to make of it. There are posts upon posts about what it is supposedly like to be a "special needs" parent..you know the kind that tell people how "we" (those of us doing all this special kind of parenting) need all kinds of understanding and crap like that because of this, that and the other thing. But most importantly, how we will do anything for our kids because WE LOVE THEM-*sigh* and THAT is the part that really bothers me. Hey, I get that maybe some friends or family might not know how your time is spent-that they might even need some help in understanding that you have a lot on your plate. What I don't get is having to justify what you do because you love your kid. To me, it reads like an apology. Both for your actions and your kids disability. "Sorry I can't go out with you tonight, my kid has O.T.-but I don't mind!.. because I love them." I don't need to explain that I love my kids or that I would do anything to help them. Shouldn't that be a given? *sigh* Why isn't there ever anything good in these posts like-"give these parents candy"..or"-pay for a nanny so they can take a vacation"? I mean thanks for the understanding, but what I would really prefer is fat and sugar laden chocolate rich carbohydrates and maybe 24 hours alone with my husband without anyone knocking on the door asking us "what are you doing in there?" Any day.
After almost sixteen years of parenting, thirteen of those years spent navigating spec. ed in two different states..four kids with very different needs and neurologies..reading numerous different blogs and talking with many different parents..I have come to this conclusion...Parents with kids that have disabilities apologize an awful lot. Not because they have anything to be sorry for-but because (and this becomes ingrained) asking for anything for our kids sometimes becomes such a production number..that you wind up feeling thankful for any crumbs that you do get..No, we don't apologize for our kids-(never!) But it is as if sometimes we have to apologize for their needs...
"Thanks so much for the 7 1/2 minutes of o.t. that your "assistant is giving my son every other week-I do know that your schedule is full(and that the school is stretching the law very thin by hiring you to oversee your "assistant"-but that you are hardly ever present) and I really appreciate your squeezing him in!"
We also spend an awful lot of time justifying what we need for our kids..
"Yes I know that my girl is very quiet and well behaved and not a problem..and I understand that unless someone is really watching her, they aren't going to see that she is a hair away from a panic attack, and that the teachers have soooooo much on their plates that they don't have the time to look out for a child that "appears" to be o.k-especially as there are kids whose needs are very evident......but all the same-she does have an actual diagnosis and really needs someone looking out for her!"
I'm tired of it. Tired of wasting time fighting for things that should be givens- services that are required by law.So..in lieu of writing a yet another "special parent" post..I'm just going to make a statement. It is my belief-my statement. I speak for no one but me-from my own experience.
Here goes-
As parent-like any other parent-my kids needs come first. I will do whatever needs doing to ensure that they grow into responsible, critical thinking, decent and kind independent (to the best of their ability) adults.This has nothing to do with disability and everything to do with it being my job as a parent. My methods may be different-but, it is all (like any other parent) for the same result.
My kids do not need to justify their needs or existence to anyone. EVER. They are human beings-and, like any other human being- deserve to be treated with dignity and respect. Nor do I need to justify, apologize or make any excuses for the time that I spend working with them. I am their parent-again, that is my job.
My kids are my greatest joy. I am not sad, bereft or disheartened because of autism. Do I wish things were easier for them? Yes. What parent wouldn't? Parenting kids with disabilities can be rough. I would never say it wasn't. The world is not particularly kind to those with disabilities-otherwise they wouldn't be called disabilities. However-I don't want sympathy-nor a super hero cape. These are the kids I have always known-this is the parenting I have always done. I don't know how to do it any differently.
I could probably go on and on...but this post is already getting too long. What can I say? I'm home with four kids and I am finding it very difficult to concentrate, I guess-in a nutshell-I'm trying to say that we are all in this together. Parenting is hard. Everyone has their own definition of what hard is-and to some, the grass is always greener...or browner from their perspective. I'm not in a contest-I just want the world to be a good place for my kids. ..and candy.
3 comments:
"I just want the world to be a good place for my kids" Yes to this 1000 times.
Plus candy (!) and wine for me too :) xx
Very interesting perspective and I like what you say. I too have done the 'understand how busy you are, thanks for squeezing him in' thing to a professional recently. Sigh. Then again I do it to keep them sweet, so they'll 'squeeze' him in again if necessary! Shouldn't have to do it but like you say, we'll do ANYTHING to help our kids. As would most parents of any child.
Wine and chocolate for me too please!! xx
Kathleen,
I understand and agree with the sentiments you've expressed here, but...
You said, "Shouldn't that be a given?"
Yes, it should, but history proves otherwise. Historically, individual survival depended on having kids that would later support the needs of the parents, especially the widowed mothers. Historically, the "great minds," even those that are still recognized as "great minds," recommended eliminating people with disabilities--especially children with disabilities--from society as unproductive members, including Plato's Republic. Even Jesus Christ was lauded for his ability to cure or heal the disabled.
Parents with children with disabilities are apologetic, because they're made to feel as if they're asking for too much. Our society, our government looks at the cost/benefit ratios of helping people with disabilities. They're looking for a return on their investment and do their best not to give more than society is likely to receive in return. But the language is so couched with political correctness and euphemisms, most people, including the ones who create the policies, don't realize that this is what they're doing.
We must fight for our children's rights individually and those of us who can fight for "everyone's" rights as best we can, because the fight is not yet one. We carry with us an ugly, terrible legacy. We've come a long way. But the peace has not yet been won.
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