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Wednesday, January 13, 2010

"What Do They Call Children Like This Today?"

There seems to be a lot of concern these days about kids being re-educated not to use the word “retarded”, which has become one of the most used of all derogatory words aimed at describing someone or something that is really unintelligent.

I understand the argument against using this word, but if you are not going to label kids who are “behind the curve” with this word than why not use it for a descriptive word? One of the funniest (and intelligent) things I’ve ever heard was an autistic child calling a mainstream kid “retarded” when the kid said something really stupid.

Years ago an older lady, who was lost for an expressive phrase, referred to my son as "retarded". Then, nervously, she asked, "What is it they call children like this today?" This well meaning lady had lived in an era when the word “mentally retarded” was the universal label placed on everyone who had any type of learning disability. In her day if you were less than normal on the Bell curve you were “slow” and if you were too slow you were “retarded” (which is actually synonymously redundant). So back to her question, “What is it they call people like this today?”

I like the label “special needs”. Again, the argument against using the term is why I like it most. The argument against it says, “It’s too broad. All kids have special needs.” Having four of them, I couldn't agree more. And I think that’s why I like this label best. Instead of totally segregating these children, this term lets them be part of the group while allowing helpful consideration for their limitations. It also allows the rest of society to remain empathetically comfortable around these children. Everyone can relate to having special needs…we all have them. Again, let me stress that this whole game is just semantics and is only helpful if it is helpful to the parent and the child.

I can remember the panic that overtook me when the doctor diagnosed Jake as “developmentally delayed”. Later it became “developmentally disabled” then “Severely developmentally disabled”. When he stopped breathing he had an “apnea seizure disorder”. When he became extremely sensitive to touch and sounds he had “sensory integration disorder”. When he could not speak he was “ankyloglossitis non-verbal”. When his eyes crossed he had “strabismus”. When the bones in his legs began to bow he had “osteoporosis”. When he spent his entire day lining up objects, he had “obsessive compulsive disorder”. When he could not sit still for one moment, he had “attention deficit disorder.” When he received the diagnosis of “autistic” it had to be supplemented with “pervasive developmental disorder non-otherwise specified.” When we participated in Special Olympics I noticed their label of preference was “intellectually challenged”

Pretty soon, the labels and diagnosis became mundane and almost comical. So when someone would ask, “What’s wrong with your son?” I could either reply with, “He is severely developmentally delayed and intellectually challenged with a history of apnea seizure disorder mixed with sensory integration, ankylo-glossitis and a bit of strabismus added to his obsessive compulsive disorder and attention deficit disorder and a slight autistic bend into pervasive developmental disorder non-otherwise specified.” Or I could just say, “He has some special needs.” To which most people could comfortably reply, “Don’t they all honey.”

4 comments:

  1. I LOVE your blog. My brother has severe Cerebral Palsy, seizures, literally no stomach (surgically removed), vision impairment, etc. For a long time I used to just say his diagnosis was "the works." So I get you on this issue! :)

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  2. Hi Greg & please say a hello to Kim for me,
    I am a mum of 10 soon to be 11 come the end of the year. We have a son that we say has "Special needs", like you I too prefer this "tag", "label" as Sam's list is not quite as long as Jakes although they do sound very similar in Sam has Tuberous Sclerosis, Autism, epilepsy, intellectual impairment & after that I just didn't really listen to any more labels or changes to the tags they had already given him....because Sam is Sam...he is not all those other things first...he is Sam...same as Joe & Paul don't like pumpkin....they are all themselves..all special...all individual...yes not liking pumpkin is a lot easier to handle than smearing faeces in to the carpet that many times that I started cutting squares out of it 'cause I just didn't think that I could scrub it clean enough any more ( we now have non slip hospital grade floor covering in Sam's room...lol..)
    Thank you for your blog, you are a gifted writer & am sure you have helped many others through your blog
    God Bless you & yours, Robyn

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  3. My sister just directed me to your blog. I'm not sure where she came across it (although with your mentions of Bob Kauflin, I'm thinking you go to a Sovereign Grace church???) but she and I both have children with "special needs" - they actually have the same syndrome which, at birth, we had NO idea was hereditary. Anyway . . . I just have to say how AMAZINGLY our stories are alike - yours and ours. My son just turned 21. He has a different diagnosis but the pool story - omg!!! We had an almost exact thing happen to us with my son. Also, with the mall story. Wow. All I can say is THANK YOU!! Thank you for sharing your thoughts in such a profound way - always beautifully written!! The Lord bless you and your family!!!!

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