I don’t need easy, I just need possible…

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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.

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Lila-One Day Old

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.

Beth getting down on Lila’s level.

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.

Kilbrey helping Lila strengthen her core muscles on the ball.

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.

Lila getting ready to crawl

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.

Lila learning to drink from a cup

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.”

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4 responses »

  1. I KNEW you would take this journey as an adventure, I am so proud of you, as always. Lila is so lucky. But you know it’s true, you are pretty darn lucky too!!!!! Luv ya always!

  2. You would be an awesome therapist. Physical, speech or occupational!!! Lila is very lucky to have you all as her parents. Eager to learn about her development is great for her and you.

  3. I don’t know what your life journey will be, but the timing of this post if very poignant for me. Last weekend I went out for dinner with some friends. The pub that we went to had unbelievably delicious food, and a “local” sing along featuring a very talented pianist and his friends and family. My husband and I had a great time singing along with the crowd and meeting new friends. On the way home, I mentioned to my husband that I had been impressed with a young, very handsome couple with Down Syndrome. The young woman had the voice of an angel, and spirit of a rebel and the face of a movie star. Her boyfriend was an athlete, a big, strong guy who spent all evening with his protective arm around his girl. When I mentioned the Down Syndrome part of the description, my husband had no idea who I meant until I described the couple.
    My husband, a PhD psychologist and father of three, saw only a good looking couple having a great time with the music. There was no “diagnosis” in his reaction to the pair.
    I wish you a similar evening for your child.

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