Home » Why special needs is nothing to be ashamed of
I’ve gotten into discussions with well-meaning folks before about the connotation and usage of that pesky little phrase “special needs” a few times to date. In this society, it seems, having disability awareness about those with special needs can mean many different things. Not the least of which is openly thinking and saying cruel things about those with special needs, and sometimes, even, about those who say they or their children have special needs.
The truth is this …
My guys have special needs because they have multiple diagnoses that present them with challenges they have had to and continue to overcome. They don’t suffer from special needs or Rieger Syndrome or epilepsy, though the symptoms are hurtful and confusing and sometimes overwhelming.
I wrote the following in response to someone’s concerns about me using the term “special needs” to describe my kids:
I have three boys, who are wonderful, exceptional little guys. But they also have many diagnoses.
All three of my guys have a rare syndrome, and they are all diagnosed with autism. While one little guy has outgrown them, my other two guys are epileptic. My oldest is also legally blind, and has other varying diagnoses which I view as part and parcel of the rest (for instance his anxiety is something I consider to be a part of his autism).
My middle guy is very mildly autistic. He’s just different enough to get strange looks, and for the neighbor girl to not want to play with him. He’s also dyslexic, with other diagnosed learning disabilities.
Logan is my firecracker. He’s the exception to every rule.
Where Bobby’s vision has been severely impacted by the rare syndrome they both share, Logan’s vision is affected minimally, though still enough to be noticed. Where Bobby’s seizures rarely occur at school, or, when they do, pass quickly and leave him none the worse for wear (aside from anxiety), Logan’s do. He stops breathing during his seizures. He’s non-verbal and has way too many issues with impulse control to even minimally understand the idea of “danger, danger.
Our lives–mine, my husband’s, and each of these guys’, are impacted every moment of every day by the complexity and sheer amount of issues that they have.
How do I encompass all of the above, as well as all the nuances that I write about sometimes, into my writing without having another way to say it? Without having another way to accept it? Deal with it?
My guys have gone through stuff the typical child never will, They’ve gone through things most adults don’t have to deal with. They’ve dealt with life and death without having the emotional and social understanding to realize what it even means.
They have also dealt with the remarks of the odd person or two when we are out in public, who expect them to behave or look a certain way. I don’t want to give give every person I meet an intimate look at what it means to deal with all the above, not every time I meet someone. But I do want to have the opportunity to spread awareness, understanding, even advocate.
When I say “special needs” I am not talking about my child who is to be pitied, I am talking about my child who is to be understood.
Connotations are powerful things. Words mean different things to different people. As a mother, while I choose to sometimes list the different diagnoses that we deal with, I find it just as accurate to say that my children have special needs, because they do.
If Logan goes into a seizure, and if he stops breathing, he may die.
If Bobby gets upset over a stray comment he may go into a meltdown.
If Andy thinks that he isn’t good enough, he goes into a full-fledged panic attack.
Yes, Bobby is inquisitive and will question you, repeatedly, about things you really would rather not talk about. Andy is a charmer and talks with adults intelligently and empathetically. Logan, he’s a mischievous little guy whose giggle is infectious.
But I can’t take part of the package. They are not ‘just’ little kids, they are little kids who have dealt with the worst of what life can throw at them, and they have not only persevered, but thrived. When I say ‘special needs’ instead of acknowledging each individual diagnosis they have, that they deal with, I’m simply saying in a very simple way that my kid IS different. Because each of them are.
They know it, I know it. Every person we encounter in the public knows it.
It’s a very dangerous and closed-minded mentality to assume that only one point of view can be right. Sometimes, living in the trenches means that I will feel differently about something because emotionally, it is too hard to feel otherwise. I recognize this about myself. language awareness comes in many shapes and sizes, and there are lots of people who believe in various aspects of it without proscribing to the entire theory. The most important thing we can do is to keep the conversation going, and above all, to carefully look at where our ideas of language awareness stem from.
I leave you with the comments I shared over Twitter about my amazing boys, because they have many diagnoses, but to me the most important one is the one I gave them myself. My guys, you see, are filled to the brim with awesomeness.
My Bobby is #SpecialNeeds because he has#ARSyndrome, #Epilepsy, #Autism, #LV, and#awesomeness
My Andy is #SpecialNeeds because he has#ARSyndrome, #autism, #dyslexia, #LD, #ADHD, and #awesomeness
My Logan is #SpecialNeeds because he has #ARSyndrome, #Epilepsy, #Autism, #CerebralPalsy, and #awesomeness
How do you feel about this conversation? What kind of “special needs” does your kid have, and are you okay with saying they have special needs at all or do you prescribe to a different way to talk about your child’s diagnosis (one or many)?