I don’t spend a ton of time thinking about my children’s special needs or differences. Until I’m forced to.
Lately I’ve been forced to a lot. Between IEP’s and new dx’s for my babies, I’ve not really been given a choice.
On a lonely or especially hard day, it can creep up on me. Those days are just for me. To weep, to morn, to settle my heart. I will call on my friends who are on the same journey or lock myself in my room at night to indulge in my favorite tv show or just check out until I feel better and stronger. Ready for the next day.
But when it’s not on my terms it can be really hard and kind of scary. My children’s differences have been front and center lately and I have to admit that I’m worn down. Facing this world and broken systems…New therapies. New therapists. New schedule. New demands. Now we have a lawyer and our options feel limited. I’m beginning to question the path we are on.
We want to mainstream Eli. We believe in him. But I’m losing hope in the system. I’m losing those big dreams we had for him.
Eli is a smart and capable child. He is also nonverbal and still delayed in many skills.
I’m going to be really vulnerable and say this right here, right now- I’m scared. I’m scared that when we are done fighting, Eli will be treated differently. That we will be looked at as “those parents” that are fighting a lost cause and forcing our child into a traditional classroom where he doesn’t belong. My mind races with thoughts about parents complaining- resentful about his special needs or different behaviors, the extra help he needs…Will he be viewed as a burden or distraction? As annoying? Will they just ignore him because that’s easier? Does he really belong?
And don’t get me wrong. We aren’t fighting because we are unhappy. Eli has been well loved and his team of teachers and therapists have been nothing but wonderful. But he is about to start kindergarten and we have to increase rigor- at home and school.
There are times I question why I’m pushing so hard. Why we spend so much time and money on therapy. But the fact remains that I have a child with special needs who is nonverbal. If I don’t fight, then I have no hope left in my heart that anything will ever be better for him. And he deserves every opportunity. All of my children do.
It would be untrue if I told you I believed Eli will talk. We continue to take him to therapy, so I suppose somewhere deep in my heart I hope for it. But I’ve turned to different fights. Bigger fights.
How do you feel about mainstreaming special needs?
This summer we are taking a break. No therapy except some ABA and riding lessons. We all need a break and time to regroup, find hope. Last summer was full of just as many emotions (mostly grief over our move to Alabama), and this summer needs to be family, pool, crafts and ice cream. I never thought I would feel the weight of special needs the way I feel it right now, and I only pray that we are making the right decision for our children.