As we get close to our yearly IEP meeting, I have been thinking more about this journey with this amazing kid.
This year, he is in a mainstream classroom most of the day. He still sees a speech therapist, occupational therapist and physical therapist regularly.
This year, we will do a three year re-evaluation. I am as eager for this meeting as I am dreading it. In this meeting, I hope we will determine if (and how much) he is gaining ground academically. I can read the IEP reports, but I can never quite tell how close he is to the standard.
Although I am fighting it, I feel many old fears resurfacing. I am a bit fragile and vulnerable.
Throughout the years, it's not uncommon for a fellow, well-meaning momma to tell me that parenting Anthy is no different from parenting any other child...that there are no guarantees. That each child's future is just as uncertain as Anthy's.
I have finally thought of a way to explain to everyone (or just you and the people in my head) why it's not completely accurate.
This is my perspective. I do not pretend to speak for anyone other than myself.
It's true that everyone's future is questionable.
I know that as well as anyone.
If you are raising a child with special needs (no matter what the special needs are), though, your question marks are bigger. Period. The more severe the needs, the bigger the question mark.
My question marks are bigger.
It's not a competition; that's just a fact.
Those question marks get heavy sometimes. I get tired and scared and vulnerable because they get heavy. That's not a pity party; that's an explanation.
I can know that he will be ok, AND I can know that his life will be tougher because of his disability. That's not a paradox, that's life.
I can rejoice in the wondrous child he is, AND I can grieve because he's eight years old and struggles to tell any coherent story about his day.
That's not capitulation, that's acceptance...what acceptance looks like to me right now anyway.
After reading this post, Liz, I was searching for the right word to express how much I admire your honesty. The word "courage" came to mind for I think it's not easy to lay open our lives for public scrutiny. I looked up the definition to make sure it fit my feelings, and dictionary.com gave me this: "the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear." I respectfully disagree with dictionary.com. Courage doesn't enable us to face our difficulties 'without fear.' Courage means we acknowledge those difficulties, curl up on the couch and hug our knees tightly, cry those feelings of fear and pain with our entire soul, then lay exhausted knowing full well that in a few moments, we will rise up, wash our face, put on water for tea (or coffee in my case), accept the rawness of our feelings, and move ahead. Others may depend on us to be strong, to always have that bright smile and encouraging word, but it takes an effort. And as mothers, as women, we need encouragement, too. I admire not your courage (by dictionary.com's definition), but where your definition of acceptance lies. And the peace to know that no matter what the outcome, there's always that cup of tea. XO
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