At 42 Degrees

At 42 Degrees

Monday, July 28, 2014

A Perfect Letter K.

The alphabet and Isaac coming up,...but excuse the pause in this abc programing for a minor rant,...or perhaps not so minor, I was very upset over the weekend to speak with a woman,...who insisted that parents who label their children 'Special Needs' make them disabled.

This woman threw the bombshell out there not me, and my first reaction was, "WHAT?" - because I frankly had never heard such,...such,...excuse the term,...but such twaddle, in drivel, or hogwash if we want to dive deep into the vernacular and that's just my opinion, but I can back it up,...because no label makes my son disabled: he IS disabled, as such he is not functionally verbal,...not to the degree of his typical peers,...and that reality can be labeled, unlabeled, painted blue, purple, poka dot, or covered in glitter,...and it is NOT going to change the fact, son cannot readily communicate! 

"AUGGGGH!!!" pardon the on-line venting,...but the conversation was not helped by the fact this woman had not ever met Isaac,...but in an honest response to a query about my children,...I mentioned my youngest child has special needs,...and BOOM,...this kind and caring individual let me have it with both barrels,...when I picked myself up off the floor,...I just dusted off the grimy gun power, and smiled, because with such an opening I knew the futility of attempting a rational conversation upon the subject, and if my quiet, "That's not how we feel,"  - disappointed the woman, then tough!

The whole labeling deal I realize is a hot-button issue in the special needs community,...but frankly I have NO PROBLEM labeling my son as 'special needs', his needs are unique and not typical, and in many instances our little guy's needs are a LOT more than his typical peers, but they are also a LOT less than many of the other children we come in contract: we have no braces to contend with daily, nor wheel chairs, or feeding tubes or oxygen tank. You want to try and tell any of those parents their children don't have 'special needs' - and I guarantee,...they would not have been so polite. Or maybe they would, because in the two short years we've been involved in the special needs community, I've met some pretty incredible people.

Autism and Apraxia don't define the sum of who my son is, but those labels do give us tools, in specific strategies to help our little guy communicate and get over those social challenges. Let's be real, if we don't know, can we help?

I get the focus that people want to put on abilities rather than disabilities,...and I am fine with that, but not to the degree that the disables are treated like they are something shameful.

My son is different, not less.

Apraxia and Autism are only a part of the whole which makes the wonder of what is Isaac, and as I try to type out this post and make it coherent,...I am simultaneously being schooled by my little guy in signing the abc's,...and let's be clear the letter M uses three fingers over the thumb: THREE and let the configuration be precise or you will be sternly corrected by a four year old, and then as we go along, I am informed that U stands for 'um-wella' - and  O, is for 'oooooh' - as in the sound Mama makes when something is 'cu-ute' - but my favorite letter is now K, and per Isaac's directions you have to get that thumb positioned perfectly between the first and second finger,...but K stands for kiss,...and I get a kiss from my little guy,...and boy do moments like these make life worth living.

Disabilities are a part of our lives that is a reality and we face it with as much courage and hope as we can - some days are easier - some days not so much and I find myself ranting on this blog.

Full well, I know, I can not change other's perspectives, and let's be clear: it is fine and mighty to have all the answers and all the solutions when YOU are not in the midst of dealing with a special needs child. Just try to go shopping with the likes of Isaac without a shopping cart and come back and tell me my child doesn't have special needs,...just the thought is hilarious,...and it all helps when dealing with the well intended, because I can only assume the misguided woman was well intended.

At any rate, the encounter reminded me,...why I worry so much for my little guy,...there are folks like that out there who want to diminish my son and his challenges, but while I may worry Isaac doesn't,...he's too busy perfecting the abc's,...and giving his Mama reward kisses because she can make the most perfect letter K!

Until I post again,...may God bless and keep you!

1 comment:

  1. I agree on the "Different, Not Less" thing. A flute is not a defective trumpet and a climber is not inherently "less" than a gymnast.


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