I could never be accused of sharing too many personal things about myself. I’m definitely the person who would rather hear about what’s going on in your life than to tell you what’s going on in my life. I don’t want to appear ‘needy’, so I don’t share. Even when things have gone really badly, I haven’t shared. Even though I knew that my daughter had special needs, I didn’t share. Today, I’m going to tell you why. Why I didn’t tell anyone my daughter has special needs.
For three years.
I’m new to being the “mom with a special needs child’. Not because I have a new child or because something happened to one of the children that I have. Actually, my special needs daughter is almost 4 years old. However, because we lived overseas and away from all of our family and friends, we didn’t tell anyone that she had problems until she was 3 1/2 years old.
Why did we say something then?
Because we were returning home for medical leave. And people were going to meet my daughter.
Here’s the thing. When you look at my daughter, you won’t know that there is anything wrong with her. She will run up to you and give you a huge hug and demand that you carry her and play with her. She is the most outgoing, loving child that I have. (And that’s saying a lot!)
If she is so awesome, then why did we wait?
From what I’ve learned, it’s something that most parents of special needs children have gone through. Lack of support.
So here’s the story. Right or wrong. Good or bad. It’s in the past now, so it can’t be changed.
When Shiloh was a baby she missed every milestone. Every.single.one. Teeth, sitting, standing, ‘talking’, and then real talking. Rolling over, walking, all of them.
But when I mentioned it to people, they insisted she was just a late bloomer. “She’ll walk when she’s ready”. “She has three older sisters who talk for her”. “She’s being carried too much.” So many ways to explain away my very valid concerns.
It didn’t help that we were in a country, where the doctors don’t do anything for special needs children.
Every time we tried to tell someone that something, something invisible, was wrong, they had an excuse for why we were just imagining it.
We stopped telling people.
So the constant screaming, whining, holding for hours and hours at a time was all done in private.
The months that it took for me to figure out ways to help her go out in public without having a breakdown…
The two years that I didn’t even go anywhere for more than an hour…
The almost three years that I didn’t sleep more than 4 hours a day…
The going on four years that I haven’t sat through an entire church service more than 5 times….
Knowing that she required a certain kind of sippy cup, filled with a certain kind of milk. That she wouldn’t actually eat enough food to stop her from being hungry, let alone properly nourished. It was all done with just my husband and me.
The hours of crying (by me) because I hadn’t slept for days, but I still had other children to take care of. Alone.
The moment that I almost lost my faith even though my entire life is devoted to sharing that faith with others. Alone.
The sad thing is not that I had this happen (I’m not that self-centered…). The sad thing is that I’m not the only one. All over the world, parents are being told that their concerns about their child are not real. The very moment when they need to feel the support of those around them, they are being pushed back as overly-cautious.
My heart breaks for those people. They need a hug, a shoulder to cry on, a friend to watch the kids so they can sleep for a few hours. Someone to help them research solutions, keep track of things that are working, make note of things that are not working.
And instead of getting support. They are being ignored.
This is NOT a ‘poor me’ post. I’m not asking for your sympathy. I’m asking for your action. The next time a mom turns to you and says she thinks something is wrong, ask her how you can help. If you know a special needs family, ask them what you can do to support them.
And please remember that not every special need is visible to the untrained eye. Parents of special needs kids work very hard to make sure that their children can have the most ‘normal’ life possible, so the very well-behaved special needs child that you meet for 5 minutes at church, might be a very big handful the rest of the week (story of my life). Nowadays, my daughter’s favorite place to be is anywhere, but home. So she’s pretty well-behaved in public (as well as any child with a developmental level of just at 2 years old), but behind closed doors….!
It’s so sad that friendships have ended, over 80% of people with a special needs child who previously attended a church have stopped going, that families have been unintentionally ‘shunned’ just because their needs were ignored.
I’m done being silent. I’m doing everything that I can to help educate people on how they can help my daughter (still hard to ask for help for me).
But I’m also doing everything I can to bring awareness to those who are sitting in the shadows begging for someone to send a little kindness and support their way.
What are you doing?