There is a sort of survival mode that kicks in the day you find out your child has some sort of diagnosis that you never expected. For us, that moment came the same day we got the final test results from Lila’s pediatrician. The day we knew that Down Syndrome would become part of our life-long vocabulary. Your first feeling is disbelief. The second, fear. And for me, the third, was a desire to jump into action. To figure out how to make the best of the situation you never thought you would find yourself in.
When Lila was a little more than 24 hours old, Charlie left the hospital to go home and take a shower. On his way, he stopped at Siskin, a Chattanooga-based learning center that specializes in special needs children to find out if they had a spot for Lila. We were both committed to doing whatever we could for our new little girl.
Right away, I discovered the reading about the genetic qualities of Down Syndrome did nothing for me. Those descriptions, as well as our visit to the geneticist one week later, only held percentages and statistics of what Lila, in their opinion, would never do. I am not interested in that nonsense. This doctor met my child for 3 minutes. How could she know what her life would become? So I started scouring the internet for new therapies and early intervention methods. I would not wait for a referral for TEIS (Tennessee Early Intervention Services). I called their office and set up an appointment. I did the same when I hadn’t heard from the therapists who had been assigned to Lila. I know there is lots of paperwork that comes with state-funded programs, but I refused to sit back and let that keep Lila, and her Mommy, from getting to work in the first weeks of her life.
The first thing we incorporated into Lila’s daily routine was the practices of oral-motor placement therapy. Basically, the idea that in children with low tone, which usually comes with DS, you have to train and strengthen their jaw and tongue muscles through exercises and eating methods, to help with their speech clarity later in life. We feed Lila sitting up with Drop-In liner bottles (Hello, 1982, right?) which makes her jaw muscles work harder and get stronger. It also helps keep fluid out of her inner ear, warding off ear infections. A few months later, we started incorporating pre-feeding exercises. A short routine we go through before Lila eats solids.
As you can see in the video, she thinks they are so much fun!
Lila sees an Early Interventionist from Siskin once a week.
The first time we met Beth, she said, “Lila, we are going to be best friends.” I knew I was going to like her just fine.
Kilbrey, Lila’s physical therapist, comes to our house once a month to teach Charlie and me how to help Lila reach her next milestone.
She’s already helped Lila learn how to roll from tummy to back and back to tummy. See?
Now, we are working on sitting up and getting into the quadruped position for crawling.
We also see a feeding therapist once a month to make sure that Lila’s first introduction to solid foods lays a good foundation for her eating skills in the years to come.
We’ve learned that “sippy cups” are a four-letter word for kids with DS, so Lila is learning to drink from a big girl cup and soon, will start with the honey bear. The muscles you use when you drink from a straw are so important for speech and the honey bear encourages that movement instead of the suckle kids use when they drink from a sippy cup.
In those first days after Lila was born, I was so fearful of the months and years ahead. I thought they would be full of scary days and sad times. Boy, was I wrong. I love being able to take part in Lila’s therapy and learning more about how to teach her take the next step in her development. I’m even taking a 12-hour DVD class that therapists use to become certified in Oral Motor Placement Therapy.
My advice to anyone just starting out on a journey similar to ours… you can do it. Not because you have to, but because you want to. Because to our little Lila, we WILL make all the difference. I’ve said this to myself so many times since Lila was born… “I don’t need easy, I just need possible.”