I’m not sure Ivy qualifies as a special needs child.
For the last four months we have had a fairly ‘normal’ life.
Or normal, in comparison to four months ago, at least.
It’s funny how we gage things, isn’t it
Because
it’s not really normal that my, just turned three year old, understands what a canula is, that she barely flinches anymore as the needle slides in.
That she knows where her best vein is.
It’s not really normal that she can lie still for ten minutes, for a bone density scan or that she understands that a CT is noisy.
Life, for most people, doesn’t include an infusion day every month or blood tests, chest xrays, doctor’s appointments and a list of specialists as long as your arm but
is that special needs?
For some, yes.
For us?
It seems like a part of our everyday.
For others with special needs and carers who look after them, it may seem insignificant.
I look at all the different people in the world, I see them with all of their troubles, the issues that some children have and my heart breaks for them. It breaks for the parents
and I wonder how others see us.
We have had comments from people, who have children with greater needs, more obvious and significant issues, that Ivy is not nearly as… bad off as others.
She is not special needs
That we have no idea how easy we have it.
Then we have Mal, who is globally developmentally delayed and needs some help in his activities of daily living.
To the world he is a ‘special needs’ child. He looks different, he acts differently to the public at large. He evokes all of the prejudices, stares and comments that society can imagine
and yet, to us, he is just Mal.
He is a fine and healthy boy, has not had any time in hospital, he is treated as all of the other children are in our family. He is not afforded allowances just for his challenges. He goes to school, swims, plays hard.
He has experienced life to the fullest.
Just like everyone else.
He is not limited in his life.
Not limited by us, at least.
So is he special needs?
How do you make the definition?
Just because one fits into all of society’s ’boxes’ and the other doesn’t fit into any, neither of them belongs.
Also blogging at Three Ring Circus
They belong in all the places that matter, Tiff. I’ve got a special, special place carved out in my heart for each of them. And the world is the richer for having them in it.
If what you have been through with Ivy isn’t thought of somehow as “valid” by some in the world of special needs, chalk it up as the words of someone who is hurting to the point that they have nothing left to reach out with.
I know families who have been through more than I will ever be able to comprehend.
I know what what my family has lived through.
And I know families who have had the briefest brush with the world of medical challenges and special needs.
None of it is insignificant.
Every experience is valid, matters, and no one family is somehow “lucky” to have ever held the kind of fear we hold in our hearts for our children.
What we are is blessed. We are blessed that we have known such extraordinary souls as our children at all. And we are blessed to know each other, that we are able to encourage each other when our hearts are bleeding.
I know for a fact that my heart has been blessed by knowing you.
Hugs, Tiff.
~Michelle
So ‘normal’ to want to be recognized as an individual and part of the crowd at the same time. So ‘normal’ to want the same for our children.
As I read, I was thinking, there must be people, somewhere, some people who have a need or propensity to sort other people into ‘boxes’ – just like Ivy does with shapes.
I definitely struggle with the language and categorization of “special needs.”
I found this post to be espically true because I feel the same way about my son as you do about your kiddos. Brandon is just Brandon and that is how it is. I never really think of him of special needs but just my son who needs my help with things. I am going to write about your post on my blog today. It was very inspiring. Thanks.
Very well written post.
I have no problem with the “special needs” label for my boys.
Sure , Joey is just well Joey..there sure as heck is not another one of him out there. But without labels, categorizatons, etc. it would be very difficult to get some of the services that our very special children do indeed need.
Even though my daughter has a medical diagnosis which certainly qualifies her for the “special needs” label, I am often humbled by what other parents deal with. I was out with a bunch of women last night and talking about our struggles with speech. All these women have children on the autism spectrum. I know in the grand scheme of things, if speech is one of her largest problems we’re lucky. Of course, she’s only 4 so a lot is still unknown. However, there was a woman who has a boy with autism and cerebal palsy. He has many many issues and as she was discussing some of the problems he was having later in the evening I again felt humbled. However, Peanut DOES have her struggles and for me, they are very real and no less important.
I loved this. My KayTar sort of sits on the fringe…her once global delays have nearly caught up to normal peer development, her medical situation is not dire, though it isn’t normal either. She has no umbrella diagnosis in either realm. We just simply are. This is our life and it is what it is. Boxes are overrated, I think.
Thanks, everyone.
Your comments have been great, give me an insight to how others are feeling.