Last week we had our first meeting with early intervention. It lasted about 2 hours and consisted of a coordinator and her director coming to the house for us to complete paperwork, talk about services, and come up with goals for Gigi. These services in the state of Massachusetts are covered by health insurance and the state will pay for whatever health insurance doesn’t cover. We will use the services until she turns age 3. I don’t have the highest expectations of these services mainly for the reason that they typically don’t have much experience with children with Down syndrome. They told me last week that currently they have only 3 children with Down syndrome that they provide services for. They also commented that in the past there would be more at one time, but with the new blood test that is detecting Trisomy 21 so much earlier prenatally, parents are making the decision to terminate. Dr. Skotko at the Mass General Down Syndrome Clinic also alluded to the fact that our therapists may not have much experience with Down syndrome and therefore recommended that we supply them with this book, which he said would also be beneficial for us to have ourselves so he will be sending us a copy:
So during last week’s meeting, the coordinator took notes while the director played with a sleepy Gigi for about 5 minutes. She tested her to see if she would do things like make eye contact and turn her head to follow a toy and then a light. She also put her on her tummy to see how well she could hold her head up. Then they used a grading system of some sort to assess her. They commented a few times that they really didn’t know how to grade a 5 week old. She scored below average and right now I’m not worried about it because she’s only 5 weeks old and who knows what scoring system they used. I see positive changes in her everyday, so to me she’s growing and learning and developing. Part of me wanted her to score low because I thought maybe that would get us more services. I’d rather that then have them say ‘she looks great call us in 2 months’; she has Down syndrome, she’s going to be delayed therefore I don’t want to delay therapies.
Next we developed goals for her to reach by 6 months – 1. hold her head up while playing and sitting and 2. develop social skills (make good eye contact, respond to people socially, etc.) The next step is for the actual occupational therapist to come visit, assess her and then decide if we need weekly therapy or twice a month. This person will also be our actual therapist and we’ll meet with her in a few weeks. By then Gigi will be 2 months old. No need for speech therapy or physical therapy just yet because she’s so little, but the OT will call them in when she feels the need.
So this will be interesting. I need to do a lot of educating myself in order to make sure Gigi is getting the services she needs. The good news is that the Down syndrome clinic at Mass General has their own OT, ST, and PT who will assess Geneva when we see them (next appointment is at 4 months) so we will be able to see if our regular therapy appointments are beneficial. Again, I’m a little skeptical, for the reasons I stated above and also because after the coordinators left I looked over the paperwork and they spelled Down syndrome as ‘Downe’ syndrome.