When Your Baby Isn't Hitting Milestones, You Need to be the Advocate
Updated: Oct 17, 2021
We didn't have the typical first birthday for our daughter. She wasn't almost walking. She wasn't babbling yet. And she did not want to touch her cake.
Her pediatrician had given her until twelve months to start babbling and sitting independently. And looking back, it was months too long.
Our daughter was sitting up off-and-on with support at six months, but as she grew, she could not longer keep herself sitting up anymore. She started rolling early at 4 months, but by 9 months, she was having trouble rolling over. At six months, she also wasn’t babbling much. She was only saying “woo” and “areuh” (a French babble, she’s half French) and making raspberry sounds. She didn’t start crawling until 10 months, and she was army crawling with her stomach on the ground using only one arm and one leg. We started to notice one of her legs was getting really stiff. When she attempted to walk or stand (with our assistance), she was on her tiptoes. And she had sensory processing issues with certain textures and with loud noises.
Our pediatrician told us to wait until her twelve month check-up before getting too concerned. A week before the appointment, still hoping everything was just going to magically click, I accepted that nothing had changed. I started frantically googling “developmental delays.” And then I found it.
“Signs of Cerebral Palsy: Delays in reaching motor skills milestones, such as pushing up on arms, sitting up or crawling.” I investigated further, and it was like the author was explaining my baby to me.
Looking back at everything we told our pediatrician, I was shocked and angry that she didn’t tell me our daughter’s symptoms were indicating that she might have cerebral palsy. I understand not wanting to freak parents out, but had we known and been told to get her evaluated, we may have started therapies earlier. At our 12-month appointment, our pediatrician still acted like we were overreacting. I told her that we strongly believed she had cerebral palsy. She was still shocked, but agreed. She said, “Okay, let’s get her evaluated by a neurologist.”
At her 15-month appointment, I sat with my daughter in my lap, her legs clenched straight and her toes pointing to the ground. The pediatrician walked in, and she finally admitted,. “I can see it now.”
Little did we know at the time, this was just the beginning of two-year-long diagnosis journey...
The take away is that you will know your baby better than ANYONE. You will probably know that something isn't right because your pediatrician tells you. Listen to that gut feeling. Take notes and videos and photos of behaviors that concern you and bring them up to your baby’s doctor. Raise your voice. You are responsible for advocating for your baby. And sometimes that’s going to be harder than you ever expected. You may question yourself, you may get angry, you may cry your eyes out, and your heart may break in half.
But in the end, the more you fight for your baby, the better off they will be.
Here is a reputable source for development milestones month-by-month: https://www.cdc.gov/ncbddd/actearly/milestones/index.html. If you suspect developmental delays in your child under three years old, get an evaluation from your state’s child developmental agency or a private clinic immediately to determine whether your child needs early intervention services (e.g., speech therapy, physical therapy, occupation therapy).
Ask your pediatrician who you should contact for early intervention services. You can also find resources here: www.parentcenterhub.org/services-ei/. Your child will be evaluated and recommendations will be made about whether therapies are needed. These services are usually free and/or covered by private insurance. The earlier you start these therapies, the better.
To all the mamas and dadas going through this journey, we see you. Remember to take care of yourselves too.
Sending you all strength and a giant hug.