“Every child is different.”
“Believe me, you don’t WANT her to walk!”
“Well, if you wouldn’t carry her everywhere!”
“Oh, you first-time moms are so worried about milestones.”
“No baby is totally by the book.”
“Quit worrying! She’s fine!”
Except . . . she wasn’t fine. My daughter had such a severe developmental delay that she qualified for services from a state program.
But getting to that point? Not so easy. Getting our doctor, our family, our friends, ANYONE to acknowledge that she wasn’t normal? Darn near impossible.
If you’re new here (or have somehow managed to miss it, even though I say it All. The. Time.), you might not know that Annalyn was born seven weeks early. Long story short, I got very sick very fast, and at 33 weeks, she was delivered in an emergency c-section in the middle of the night.
I’m not even sure that’s relevant to my story, though. Because nobody can tell us why our seemingly healthy – and clearly bright (No, of course I’m not biased! Actually, I have test result after test result to prove that the problem was not her brain.) – daughter was significantly delayed in all of her gross motor skills.
Gross motor skills are the big ones – rolling, sitting, crawling, walking, running, jumping, kicking. You know, the ones that everyone asks about?
“So, is she rolling over yet?”
“I bet she’s crawling all over the place!”
“Uh-oh, she’s getting to the age when she’ll get into everything!”
Well, no, not really. She can’t get into everything if she refuses to move off her blanket or play gym!
And that’s just it: we didn’t know if she was refusing or unable to do the things we so desperately wanted her to do. She IS willful and independent and smart. So, I can totally see her little baby brain deciding, “Hey, I’ve gotten really good at this crawling thing now that I’ve been doing it for A YEAR. Why bother with the walking? It takes so long!”
Look. We might be lazy in this family, but we are NOT stupid.
Seriously, we’re not sure what the problem was. But we WERE sure that she had a problem. It was the doctor that wasn’t certain.
At nine months, she told us not to worry and that as long as she was standing and trying to take steps at one, she would be right on track. At one, however – when Annalyn was most definitely not standing or taking steps – the doctor told us not to worry and that we’d just give her a few more months. She said that if she wasn’t walking at her 18-month appointment, then we’d worry.
Then came our 18-month appointment. Still not walking. And the doctor was still not worried. Also – still not calling a specialist and still making us feel like overreacting, first-time parents.
Finally, after another month went by and our 19-month-old daughter was nowhere near walking, our doctor gave us a referral to a specialist and sent us to the children’s hospital for physical therapy.
The specialist couldn’t see Annalyn for SIX MONTHS. And the therapist at the children’s hospital apparently believed in tough love and leg braces. Both made Annalyn – and me – cry.
Meanwhile, family members were still “teasing” me, saying that she’d walk if only I’d put her down. (I absolutely did NOT carry her too much. I was a full-time working mom, for crying out loud. The kid was NOT getting coddled!) And at the same time, they were warning me to be careful what I wished for, because walking babies are such a handful.
Yeah, well, carrying your 90th percentile for height and weight 18-month-old into the library, store or doctor’s office is a pretty big handful, too.
Thankfully, as I complained about our problem to a friend at church (Because a child who doesn’t walk at an appropriate age is a problem for the nursery, by the way. Do you keep her in the crawler room with babies? Or put her in the toddler room and let her get run over? Oh, the dilemma.), she told me about First Steps.
First Steps is a Missouri state program that offers services to children younger than three. It costs – literally – 95% LESS than the children’s hospital and the therapist comes to your home for the therapy sessions.
It was a miracle.
Granted, the application and evaluation process was NOT a miracle. It was more like a pain in the neck. But it was well worth it (as were the other, seemingly continual evaluations we went through over the course of a year), because the therapists that worked with Annalyn made amazing progress.
She actually started walking – basically on her own – right around the time we were getting her enrolled in physical therapy. But even then, she was so far behind kids her age (and, honestly, kids up to a year younger than her) that she needed extra help.
For just over a year, she’s had weekly physical therapy sessions and the change is amazing. She’s so much more confident now, and let me tell you, not having to carry her (aside from the ever so lovely public meltdowns) is a miracle of its own.
Annalyn still falls a lot. And she runs about a quarter of the speed of kids months younger than her. In general, she’s slow and awkward – but she’s moving! She’s jumping and running and walking like a pro.
And I just can’t imagine she’d be the same girl if we hadn’t FINALLY gotten some help for her.
Throughout the whole process – including looking back and realizing just how oblivious our doctor was about her development from Day One – I couldn’t help but think, “If I’m THIS frustrated with our situation, I can only imagine the overwhelming feelings a family with a more serious issue has.”
- I felt scared. Scared that something permanent was wrong with her. Scared that she’d never be normal.
- I felt guilty. Guilty that we swaddled her for so long. Guilty that we didn’t let her climb on things. Guilty that I delivered her so early.
- I felt stupid. Stupid for being worried. Stupid for overreacting. Stupid for making a big deal.
- I felt desperate. Desperate for someone to listen. Desperate to FIX the problem.
- I felt lost. Confused. Annoyed. Protective. Embarrassed.
And if I felt those things, simply because my daughter walked late, I can only imagine what parents of children with other special needs go through.
That’s why, over the next few weeks, I’m going to be publishing a few guest posts from mothers of kiddos with special needs.
Maybe you’re going through something similar and need to know that you’re not alone. Maybe you know someone with this type of situation and you don’t know what to say, how to help. Maybe you don’t have kids and don’t know any kids, but need a reminder to be thankful for legs and brains and eyes that work.
I hope that, whatever your reason for reading my Special Needs Kids series, you’ll welcome my guest posters with open arms and warm comments.
Does anyone in your life have special needs? How has that affected your life?