When All We’re Doing is Surviving it’s Nice to Know We’re Not Alone

IMG_1278One of the scary things about living in survival mode is that when you don’t take the time to lift your head above the mire, you don’t get to appreciate the fact that you’re not in your particular fight alone.

That’s right. There’s others out there, just like you.

For me, raising Hannah has been… well, a myriad of things. As a baby, she was quiet and very easy, but when she hit the age of three she discovered walking. Everywhere. She also discovered that if she walked away from the big lady who was trying to make her do something, she didn’t have to hear her. All. The. Time. So, she went from a quiet, easy-breezy baby with Down syndrome to a busy, stubborn, l’il-Miss-Independent toddler who fought me tooth and nail to stay close or in one place.

Hannah didn’t listen to reason, didn’t respond to behavioral rewards or punishments like time-outs or favorite treats. I was at my wits’ end trying to learn how to parent her as well as her older sister who had begun first grade in a brand new town we had just moved to, and her brand new baby sister. My husband was on the road for weeks at a time, so I was on my own with the kids, barely keeping my head above water.

As we plugged in to various therapies for Hannah, I learned of parent support groups that I thought I’d get involved in as well. I can remember being so disappointed when I realized I didn’t have much in common with these parents. Their children were much more high-functioning than Hannah was. Their kids spoke in short sentences, responded when spoken to, engaged in conversations, in entertainment, in play with other kids. Hannah didn’t. I felt even more alone.

It was the strangest thing to know that not only does my child have special needs making her different than other “typical” kids, but she was also different from the kids she was supposed to have something in common with. So I quit going to the support groups.

Hannah’s behavior spurred a conversation with a new friend in a new city who asked me if I’d ever had her tested for autism. Um, no. She already has a diagnosis. Down syndrome, remember? – Apparently it’s not unusual for kids with Downs to have a dual diagnoses with ASD as well. Huh.

It took less than 10 minutes with Hannah for the neurologist to say, “yes” to the question. No hemming and hawing, no looking for reports in a week or so. Just “yes”.

OK.

IMG_0656It made sense. All the years of making life better for Hannah her way finally made sense. Didn’t really change anything except that we could now describe her better. And look at me: I had figured out so much on my own with her! High five for me!

And then I discovered a priceless treasure. A support group online for parents of kids with the same diagnoses. I wasn’t alone. There were other people out there struggling like me. Wondering like me. Fearful like me. Proud like me.

Again, it didn’t change a lot outwardly, but inside? Where I spend a lot of my time? It lifted a weight I didn’t even know I was carrying.

So, no matter what we struggle with, what we face, what we must walk through, let’s try to remember that there is a really good chance that we are not the only ones. We need each other.  Not to fix things. Not to tell us how we’re doing it all wrong.

No.

To walk with.

That’s all.

I hope you find someone to walk with.

– love love

Shev

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