Wednesday, October 7, 2015

What Homeschooling a Child with Special Needs Means

As  I talk with friends who home-school 'typical' kids, I've come to realize some interesting things. Our days are vastly different. I cannot fathom their days nor them mine.  But I found a new friend who has a son who is incredibly similar to John. And hearing her talk about her struggle and what the day looks like for them made me laugh and tear up with joy. Because I'm not alone.

And I thought I was. 

It was then  I realized I didn't know any of this stuff about home-school and special needs kids before I became a mom that home-schools a kid with special needs. Homeschooling a special needs child was  some vague notion about a mom with a child with Down's Syndrome or Cerebral Palsy. Certainly not me. Oh, how God laughed. There are things I didn't anticipate or even give a thought to in regards to home-school and a special needs child.
What I did not anticipate was a child that was so needy I'd cry with anger and sympathy for myself and empathy for him.  I did not anticipate needing Sensory Breaks in the swing, on the trampoline, in the tent or BodySox. Those breaks eat into our day. And while I *know* that he does so much better when he takes those breaks, it doesn't mean that I have stopped watching the clock and trying to guess when we'll be done. I did not anticipate having to work one on one so much with him that I then worry and feel massive guilt about the time I miss with the girls.

I also never anticipated the sheer amount of guilt I'd harbor. That it would make me scream. That it would make me stand in the shower and sob.
Homeschooling a child with special needs means I wash the same set of clothing and pajama's for 8 months. And when the weather turned cold yesterday I started to sweat and stutter as I tried to casually suggest he wear pants instead of the same pair of shorts he's worn since April.

It means that I get pissed at him every day. Every day. I get angry that he has these needs. Why can't he just wear clothes? Why does he have to swing before, during and after math, science and reading?(Hello Sensory Processing Disorder.) Why can't he just Stop bargaining. Stay at the table. STOP TALKING OH MY LORD JUST STOP TALKING. (Hello ADHD) Why is he asking about lunch/dinner/if I'll wash his clothes/are his pajamas clean? AGAIN. (Hello anxiety.) Why can't I simply read his journal? He truly worked hard on it and now I can read only about half of what he's written. (Hello Dyslexia). And after I've gotten angry at him? I get angry at myself because what kind of monster of a mother gets that upset with her child who cannot help feeling/doing/saying any of things??

ME.I do all that.

Homeschooling a child with special needs has made me needy, lack confidence in all areas of my life and crave acceptance. I want my husband to systematically acknowledge all the things I've throughout the day; from school to house work and dinner. I've gained 15 pounds and need to be affirmed every day that I still look OK. I need every person I know to be completely accepting of my son, what we are doing and all of my choices. I hope fervently that I hear, "Excellent! You're doing such an incredible job! I know this is hard, but you are working on this and it's getting better. I'm so proud/impressed/in awe of you," every time I tell someone about a new therapy we are trying, a change I've seen, if I'm considering or not considering medicine, that essential oils are starting to sound less crazy to me or that I've decided to live on a farm in Greenland because I heard that might help.

And yet.

I do love this. Somehow, amidst all this craziness, all this chaos and all these tears, I see that this is what we're supposed to be doing right now. For unknown reasons (well, to me. God certainly knows), this is what our life is meant to be. At the end of each day I am spent. Emotionally, physically and mentally I'm useless. But if I look back on the day I can see glimpses of what we're fighting for. I see John completing 2 pages of math, accurately, in 10 minutes. I see him taking a Sensory Break when he needs it, not when I demand it. I see Violet grabbing John and squeezing him tight to relax him, then reading his history to him. I see Sarah asking him to play a math game and the two of them having a blast. These are small moments, but I cherish and cling to them as the day ends and I start to worry about the next day.

Nobody told me this stuff. (And there is so much more.) But even if somebody had told me?

We'd still be right here, doing this.