Friday, October 11, 2013

Day 11 of Down Syndrome Awareness Month!

Unfortunately due to some computer issues last night I was unable to write a Day 10 post for this month, but it was out of my control and this has been a long week, so a break wasn't an altogether bad thing.

What I was doing last night while I was waiting for my computer to start working, was filling out the beginnings of the paperwork for Tera's transition to Early Childhood in February.  For those of you who are unfamiliar with the system, kids with physical and/or developmental delays are eligible to receive therapy services from birth to age three on a sliding fee scale with the rest of the cost covered by the state; this is called Early Intervention.  Tera currently receives occupational therapy once a week, speech once a week, developmental therapy once a week, and physical therapy twice a month.  Early Intervention has also covered the cost of her orthotics.  Each state and county vary in how much they provide and what hoops you have to jump through to get services.

We have been lucky because we haven't had to fight for anything for Tera.  We were also lucky that even though she still had to be evaluated when she was about three months old, she automatically qualified for the services because of her diagnosis.  Every six months we meet with her coordinator and her therapists at our house to either write her goals for the year or to discuss how she's progressing and whether the goals need to be rewritten or replaced.  I have read many, many posts from other moms who dread these meetings.  They either have coordinators or therapists who aren't supportive of their child or they get discouraged at their child's progress.  Once again, we've been lucky.  That's not to say that Tera has always met her goals when we meet, but we are very fortunate to have therapists who have always been very positive about her progress and who really highlight all her successes in the prior six month period.

At her last meeting in August, we started the process of discussing how the transition process would go for us and Tera in the next six months.  At the age of three, kids transition out of Early Intervention and in some cases, they move into an Early Childhood program.  This is what Tera will be doing.  We have already attended one conference on this and the options ahead of us can be overwhelming.  There are other possibilities for preschools or preschool-like programs for kids with special needs that vary in the ratio of kids with special needs to typical kids or sometimes in the types of services they will receive.  

One of the things we learned at the conference we attended is that as much as possible, you want your child to be in a least restrictive environment.  Basically that means with as much time spent with typical peers as possible.  We also learned that Early Childhood is actually the most restrictive environment.  I was really concerned about this until I realized that Tera is with typical peers the entire rest of her day, and has been since she was six months old.  I'm not as concerned about that anymore.

The part that worries me is that I won't know what to fight for, for her.  We were told Early Childhood follows Early Intervention and I never really questioned it.  There have been times when I have underestimated what Tera was capable of and I'm scared that I won't know that I should push for more (or less in some cases).  There are so many options out there for her and I just want to make sure that she gets enough of what she needs, but not so much that she can't show everybody what she's really capable of.  I would love to see her in a typical classroom when she actually starts school, but I can't even begin to express how worried I would be about her getting teased or not being able to keep up.  On the other hand, as I said, she's really only ever been with typical kids so I would hate to see her separated from everyone else her age because she may be delayed.  Clearly some of these concerns are more about a few years from now, but the fact remains that we are all getting ready for her to move on to the next step.

This Tuesday Tom and I will meet with the transition coordinator from SEDOL (Special Education District of Lake County) and I will bring the seven page packet that I filled out for Tera.  My understanding is that they will explain how the rest of the process will go, we'll schedule her evaluations to determine her need/eligibility for services (OT, PT, and ST), and we can ask any questions about the next few months.  I struggled on some parts of the paperwork for this meeting because I feel like Tera is capable of more than she shows sometimes.  Some parts were also tricky because I felt like what they were asking is common with many two year-olds; DS or not. I know when we're talking face to face we'll be able to articulate a little better what she can do and what she's still working on.

Until then I'm looking forward to a fun weekend with an extra day off to spend with my little family, and lots of silliness with my girl.  Tomorrow morning we have Tera's swim class so we'll see if I can get her to replicate what she's been working on in the bathtub...


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