Wednesday, September 23, 2009

ITAP Program Assessment

In addition to Early Intervention, Chris and I had initially had Colin evaluated at the Infant Toddler Assessment Program at the local Children's hospital. This program is similar to Early Intervention except that it entails a developmental pediatrician who also follows his progress. Essentially, without actually speaking to each other, the two teams monitor Colin's progress to make sure he stays on track.

Colin had been assessed by Early Intervention initially when Colin was about 4 weeks old. Based on how well Colin was doing, our "team" made a recommendation for physical therapy 2 times a month and developmental therapy 2 times a month. Fortunately, we were able to alternate the 2 so that Colin was getting one type of therapy a week. Miss K (physical therapist) has felt that Colin's physical progress has been good and because of this, wants to move his sessions to once a week just to make sure he continues to stay on track (only a newer recommendation).

When Colin was about 2 months old, he was also evaluated by the ITAP program. It involved a speech and occupational therapist, a nurse, and the developmental pediatrician. Based on the therapists' 5 minute evaluation, they recommended Colin receive PT once a week. Other than that, it was just some explanations as to what Down Syndrome was, what it meant, and the recommendation that we should continue to follow up with the team.

I was initially nervous about the discrepancy not knowing what to do. However, Miss K felt that Colin was doing well and that we were doing everything we could on a daily basis, so it wasn't necessary to increase to once a week then. Also, Miss D was doing PT as part of her developmental therapy. As you've seen over the past few months, Chris and I, as well as friends and families, make sure they do Colin's exercises when they spend time with him. He is certainly not neglected in doing the things he needs to do.

So, yesterday Colin had his check-up with the ITAP program (every 3 months when they are under a year old) and I still have a bad taste in my mouth. We walked into the room and put Colin on the mat on his stomach because I knew they would want to see his head control. He did so well holding his head up high, looking around, reaching his arm out in front of him. The OT immediately picked him up, sat him up (which he did well with) and then tried to get him to support himself with his hands in front of him in a sitting position (which he is not able to do yet). She flipped him around a few times and was finished. Then, the speech therapist stuck her finger in Colin's mouth for 30 seconds and was finished.

The OT then sat back in her chair (after not saying anything to us) and then immediately asked me why we didn't follow their recommendation to have PT done once a week. I felt like we were being reprimanded and answered everything I just explained earlier in the post. After that, she scribbled some notes, asked if we had any questions, and dismissed us. I was steaming so Chris just asked why the speech therapist did what she did (since neither explained what they were doing).

The nurse asked us a few questions, plotted Colin's numbers, and based on the small amount of things Colin is not doing, told us that he falls on the minimal end of the scale for his age (mostly because he can't sit on his own, not really putting his feet down to bear weight when holding him, and because he's saying vowel sounds but not consonant sounds).

After all of this, the developmental pediatrician at least made us feel like we were doing something right. She told us that Colin looked great, we were doing a great job with him and reinforced that we should continue to do things we are doing with him.

I know that Colin can't do every single thing right now because some things are more difficult for him. I also know that Colin is doing more positive things than negative things and every single negative thing was emphasized with none of the positives being reinforced. Chris and I feel that Colin has come a long way way from when we first found out that he had Down Syndrome and from when he was first having some difficulties with head and neck control. I feel that he is doing new things every day and working on the things that he isn't doing as well.

I also know that the point of the program is keep track of his development and to try to work on the things that he can't do as well. However, considering the fact that we are #1 new parents and #2 new parents of a child with Down Syndrome, there could be some positive things said to us.

Phew, got that off my chest...


grandad said...

Good for you my daughter!!! Its a good thing this is a "family" blog as I have a few choice words to say, but won't. Colin is doing GREAT as are you and Chris. Everyone to date has been extremely positive except those nitwits from yesterday. Keep up the good work that you both are doing!! :) Grandad

Jorie said...

You said it Mr. W!

great grammy said...

love you my great grand son

Jennie said...

I hate evaluations too, Kelli. You're doing great!

Natalia said...

You're all doing AWESOME, Kel! XOXO

Debbi said...

wow! sorry that they were so cold with you. I have been flipping through your blogs, and if how colin is right now could be shown to these people back at this time, they'd be eating some humble pie!