When Colton was 2 weeks old, we went to tour Easter Seals. We chose Easter Seals because we have a family friend that is a Speech Pathologist there and the location is convenient for us. We also know that it has a great reputation and all of the therapists have been there for a really long time. First, we met with the Coordinator. She took us into her office and talked to us about their services, etc. She also told us that we needed to apply for TEFRA Insurance ASAP. In the hospital, we found out that Arkansas is a great place to live if you have a child with a disability. TEFRA Insurance is a medical assistance program for families that have a child with a disability. From my understanding, it will cover all of Colton’s therapy sessions and will pay for him to go there full time for school, when we decide we are ready to send him. It will also help pay for the thickener I have to use in his formula and any other things he made need to help him walk, etc. (Ex: inserts for his shoes). You do have to have primary insurance that they bill first, but if anything isn’t covered, TEFRA will most likely cover the cost. The application is very long and detailed. She asked us to take it home and begin to work on it. We wouldn’t be able to officially apply until Colton was evaluated in Physical Therapy, Occupational Therapy, and Speech Therapy to see if he qualified for services. I had to have Colton’s Pediatrician fill out part of it, too. A copy of those evaluations had to be sent in with the application. So, we scheduled for Colton to be evaluated at our house at 4 weeks old. Next, we toured the facility. We met many therapists and looked at the different rooms they use for PT, OT, and Speech Therapy. We saw the school where kids go full time. They take babies at 3 months of age as long as they have an opening. We won’t be sending him for school since I’m staying home with him full-time, but we will take him up there for therapy in the near future. When he’s 2, we will probably send him to school full-time and he’ll get his therapy services while he’s there. Hunter and I both liked it. We thought that it would be a great place for Colton to go for his therapy services.
While I was sitting in the office and touring the school, my eyes kept welling up with tears. I just kept thinking...is this really what we’re doing? Does our child really need therapy services? How in the world did my life change so fast? Never in a million years did I ever picture myself doing this. I always drove past Easter Seals and saw it, but I never really knew what it was for…until now…until I needed it…until my son needed it.
The first two weeks of his life were such a whirlwind that I hadn’t really sat down to catch my breath. I hadn’t really thought about all of the things that we were going to have to do. I didn’t know enough about Down’s Syndrome to even know what to expect or what questions to ask. This was all so new to me. I walked through the halls and saw kids with all kinds of disabilities and it made me sad. Not because they weren’t cute and sweet, but because my child was about to be one of them. I looked at the therapists and I hoped they would love my Colton like I do. He’ll be spending a lot of time there as he gets older and I want them to look forward to seeing him. I want it to be a happy place for him. I want him to have friends and feel comfortable. I hate that he has to go do therapy all of the time and Weston never had to. Don’t get me wrong, I’m glad he gets to do therapy so that he’ll be able to crawl, sit, walk, talk, write, etc., but I also hate that he doesn’t just get to be a “typical” kid that usually learns those things naturally. It was a sad day for me, even though I did like the facility. Hunter and I walked out of Easter Seals and we both were a little emotional. I imagine it’s what people feel like when they’re searching for a nursing home for a parent…you know you have to do it, but it doesn’t make it easy.
On February 3rd, three therapists came to my house; a Physical Therapist, an Occupational Therapist, and a Speech Therapist. We all sat on the living room floor with a blanket in the middle.
The Speech Therapist started and immediately put on a glove so that she could play inside his mouth. She wanted to see how his tongue moved, how his palette felt, and how well he could suck. She did some other things that I can't remember, but she told me that Colton had a good suck. His tongue moved appropriately and his palette felt good. She scored him pretty high and said he would not qualify for services yet. The Occupational Therapist went next. She was doing things like checking his vision to see if he'd track toys or black and white pictures. She also wanted to see if he could hold onto toys with his hands because they don't grip like typical babies do. Weston used to grip my fingers so hard I'd have to pry them off, but Colton doesn't grip very well because of his low tone. It's something that most of us don't even notice a baby does naturally. She did other things, as well, but in the end, he didn't qualify for services. She did say that he did better at tracking black and white pictures than regular toys. The Physical Therapist went last. She immediately told me that he would qualify for services. She could tell just by looking at him. Due to his low tone, he pretty much just molds to whatever surface he's laying on. Most typical babies' legs are up toward their chest and in together (kind of like a sitting position). When you pull their foot down to straighten out their leg, it usually bounces right back up to their chest if you let go of their foot. Colton's legs are stretched out and open wide. He also lets his arms relax and lay on the floor. Gravity makes it hard for them to bring their legs and arms up in the air because they don't have the muscle strength. Very interesting to me. I never would've noticed that had she not told me. His core is very weak and when you sit him up, he just hunches over and melts. His wrists and ankles are extremely flexible and bend almost backwards. So...he definitely would need Physical Therapy to improve his tone. She said that it's pretty normal to only qualify for PT at first because OT is for more fine motor skills, which he doesn't even really need yet. Kids that qualify for Speech Therapy usually do because of feeding issues, which he doesn't seem to have right now. They all would type up their evaluations to attach to our TEFRA application in a few weeks. They all gave me ideas of things I could work on at home. For all of them, keeping things in the "midline" is extremely important. He needs to have his head straight and looking at me when we're working on his mouth or vision (tracking). I need to bring his legs up to his chest and keep his hips rotated in, not out. Pulling his arms and legs in tight, allows him to focus more when I'm working with him. When his arms and legs are just allowed to move and kick, he's not focusing very well. It all makes sense....just things I'd never thought about.
So, the Physical Therapist wanted to come to my house to do in-home therapy sessions every 3 weeks. She didn't want him to go to the facility because he's so little and could easily get sick (especially since it was flu season). She said we would continue to do that until he was 4 months old. He would be reevaluated in all 3 areas at 4 months.
I was very impressed with Easter Seals. All of the therapists were very kind and sweet to Colton. They did a great job of explaining what they were doing and why. I loved the suggestions they gave me in order to help him at home. They were honest about his abilities, which we liked. We want to know his strengths and weaknesses so that we can better help him at home. It was a good experience for us.
