Posted by: Hallie Levine | October 14, 2010

Abilis Walk on Sunday!

It’s only a few days away, so I’m going to do one final push promoting the Abilis walk…

http://www.abilis.us/walk/TeamProfile.aspx?tmid=Team+Jo+Jo&fpc=yes

It’s been kind of crazy for me, as I am chairing the walk again this year, but it’s so worth it. Abilis has been in our lives since Johanna was three weeks old. While she was still in the NICU, the hospital social worker registered her for Early Intervention. I was told to call the Connecticut hotline number when we got home so her services could start.

It was so overwhelming when she was first home. We’d had a hard time in the hospital getting her to take a bottle–sometimes newborns with Down Syndrome have difficulty learning how to coordinate sucking/swallowing motions. Johanna wasn’t able to nurse at all due to low muscle tone in her mouth, so I had to pump six or seven times a day for her to make sure she got enough breast milk. It took forever to feed her–sometimes an hour to take two ounces. I was beside myself.

When I called the hotline to schedule her first evaluation, they told me there was a huge waiting list for Abilis and it would take at least three-four months.

I completely lost it. I was screaming at them, tears streaming down my face, hysterical. All I had heard was how crucial Early Intervention was and the unsympathetic service coordinator on the other end of the line couldn’t have cared less. I honestly didn’t know what to do.

I finally took Johanna for a walk in her stroller, and while I was out, the hospital social worker called to see how I was doing. My mom answered the phone and explained what had just happened.

A half hour later, I got a phone call from Karen Feder, who was then running Birth to Three services at Abilis. She had somehow managed to get my name to the top of the list and they would be coming that Friday for an evaluation. She said to me, “Your child has feeding issues. There’s no way we’re waiting three months. This is an emergency.”

Karen showed up at my house with Carol, who is now Jo Jo’s occupational therapist. They spent almost an hour with her, showing me different ways to hold her, how to encourage her to lift her head, techniques to help work on feeding. They were overwhelming positive, cooing about how cute Johanna looked in her little flowered Ralph Lauren sleeper. I had been worried about how they would respond to her, how they would view her, but they didn’t seem to see her as anything other than an adorable newborn. At one point, they were encouraging her to look in the mirror, and when she finally did lift her head to stare at her reflection, Karen laughed,” Look at her! She loves looking at herself. Typical girl.”

I’ll always remember that morning. Abilis at that point did what no one else had done: they normalized our daughter, and they normalized her disability. When her therapists work with her, they don’t view her simply as a child with Down Syndrome. They view her as Johanna. That’s a rarity these days, even in the special education field.

Johanna gets four hours of therapy–physical, occupational, speech and play–a week. There is no doubt in our minds that this has helped her make enormous strides in her development.

So, please consider donating.

http://www.abilis.us/walk/TeamProfile.aspx?tmid=Team+Jo+Jo&fpc=yes

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