When Something Isn’t Right

jami and lila

“Do you think it’s weird that she doesn’t walk at this point?” I asked our pediatrician.

“Some kids just walk late.”

By the time my daughter was 18 months, she didn’t really talk much or understand. She wasn’t walking, either. But, because this was the second child, I learned not to freak out about not hitting all the milestones perfectly. I’m not an uptight parent especially after growing up in a family with eight kids. But as time went on, something didn’t feel quite right. And finally, after I was told she was fine for the fifth time by the pediatrician, I decided to take matters into my own hands.

I studied early childhood education for a bit in college and knew that generally, if kids are not walking by a certain time, it can be related to hearing problems. I made an appointment with an ENT I found on the Internet a couple of months later.

They took a good look in her ears and said, “she can’t hear.”

Tears rolled down my face.

But it’s an easy fix; she just needs tubes. She can’t hear because her ears don’t drain like an average ear. There’s buildup, like glue, in front of her eardrum. It’s like she’s been hearing under water…probably more like tar.

She was almost two and couldn’t talk or walk, and it was something as simple as a five-minute surgery that could help her speak and walk.

They told us that after she got tubes, she would speak pretty soon after that. A month or two, and she’d be all caught up!

Although she did eventually start walking, her words never caught up.

I found it strange, but we waited. I gave her a year, and she never got there. At that point, I knew something was wrong. The same gut voice told me to pursue something further.

Not to mention, my daughter began exhibiting some strange behaviors, like tearing paper into tiny pieces for hours. In fact, all we had left were board books because she dominated the paperbacks! She didn’t seem to mind extreme cold or hot. She loved pushing furniture around the rooms constantly. She would stay up all night some nights busying herself because she couldn’t fall asleep.

I didn’t want to wait on the pediatrician, and everyone else to tell me she was OK … I had become disenchanted from people telling me my kid was fine when I knew she wasn’t.

I began Googling how to get my child evaluated for special needs in Kansas City. Children’s Mercy and KUMed both took about eight months to get an appointment. I called and called, sometimes, not getting a return phone call. Eventually when I did get someone and explained what we were experiencing, they told me it was probably just her hearing, and they wouldn’t be able to even evaluate her at this time.

I cried on the phone to strangers. Was I supposed to just do nothing?

In that same season, I was also trying to get her into a preschool. I really wanted her around other kiddos her age so she could learn from them. However, she wasn’t potty trained, and she didn’t have much to say that anyone could understand. I wasn’t even sure if she could understand what people were saying to her.  No preschools that we were interested in would take an unpotty-trained child with a possible special need.

It’s a lonely feeling when you feel like no one will help you find out what’s wrong with your child. She didn’t fit into the “normal” category, and she didn’t fit into the “needs help” category, so where does she fit?

After a desperate message for help sent out on Facebook, I found The Children’s SPOT at St. Luke’s on the Plaza where they help kids with moderate to severe delays in a preschool environment.

A glimmer of hope surged through my body.

When I called, they were surprised a doctor hadn’t sent me over. Not to mention, we didn’t have a diagnosis.

“We’ll evaluate her and let you know,” they said. Two hours later, they determined she was severely delayed in most areas. .. “I can’t believe no one would help you.”

She began going to school there immediately – three hours a day with two therapists in a classroom of six special needs kids.

Joy welled up within me when I dropped her off the first day. She finally belonged somewhere.

Still not satisfied,  I called Children’s Mercy again, crying with frustration again to the director. “SOMETHING IS WRONG, and we really need help!”

(I know, I did a lot of crying! I’m not even a crier.)

Finally we got the number of a doctor who would help us, unsure if insurance would even cover his evaluation. After months of waiting, I felt like I was being heard for the first time in years.

“You’re right. She is developmentally delayed. Operating at about an 18-month-old at age three. Let’s get to work.”

Lila never fell into any particular category. Her blood work looks great. “I’m not going to give her any labels for the sake of labeling,” our doctor told us. “Come back in a year.”

 “And in the meantime?” I asked.

Keep doing what we’re doing.

Here we stand, even now, knowing that our little girl looks perfectly normal but does not function normally alongside her peers developmentally. Of course it’s difficult to feel like we have no solid label to take comfort in. To Google. To fix.

But as we move along in this journey, we’ve learned that labels aren’t the most important. She has a place in this home. She is well loved. We don’t need to fix her. When we don’t need to fix her, we get to just enjoy our sweet girl who has taught us so much about what it means to love life.

It doesn’t mean we’ve stopped trying or stopped looking. This is her last year at the SPOT before she goes into kindergarten and is re-evaluated in April by her special care doctor. We look forward to knowing if with older age, something is more identifiable. In the meantime, nothing changes, except for maybe her school district and her increased brightness in this world — as well as our thankfulness that she is our daughter.

An encouragement to other parents: if you think there’s something wrong with your kid, listen to that voice. Other people don’t know what you see in your home and what you feel. You have nothing to lose by pursuing it. Maybe $60 for an appointment? Or perhaps the risk of looking like the illusive over-concerned parent?  It’s worth every cost to your pride or bank account.

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Jami Nato is a wife and mother to three with one in the oven. When she’s not blogging or speaking, she enjoys not doing laundry, drinking margaritas (when not prego), and long walks with usually screaming children. She blogs at From the Natos.
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5 COMMENTS

  1. Thanks Jami – it’s so refreshing to know I wasn’t the only crazy mama sobbing on the phone with receptionists, nurses, and doctors. The frustration was overwhelming in the months before our son’s diagnosis because no one seemed to have any way to help us. But we kept fighting, just like you, and finally got in with a specialist and I never regret a moment of those tear filled phone calls. Lila’s a sweetie (well, from what I can tell from your blog and instagram! haha) and you’re an amazing mama. <3

    • it’s so funny how you feel so alone in that struggle, but then you hear other people’s stories and think, i’m not the only one! nice to know there’s a kindred spirit out there. 🙂

  2. Jami, you are doing such an amazing job being Lila’s mama. Thank you for writing your story. I also had to kick in a lot of dr’s doors and cry on the phone to get my sons help. It can be such a lonely, frustrating place to be in. But suffering begets amazing fruit and God fills in the gaps.

  3. Your fierce and courageous love for your child is inspiring. God has given us such a refining gift in motherhood, hasn’t He? He makes us stronger and braver and more persistent in prayer and action than we ever knew we could be.

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