What's next

As most of you know, we are sort of at a crossroads with Finley at school.  We have been told by her teacher that she thinks Finley is "young" and would benefit going to transitional next year instead of 1st grade.  While Mat and I have never really gotten over the shock of this idea, we have become proactive to help us in our decision making.

So far, the new year has been going well.. Finley is off on a running start.  She has been doing great with Kumon and has already made some great progress in her writing.  While I still see her getting frustrated when she writes backwards - or more that she isn't SURE it is backwards - I see it being less.  Honestly, we have no idea how she sees it normally.  I think sometimes the "correct" way of writing to HER looks backward, and that is why she gets confused.  Such a mystery.

Her 1:1 aide has been tasked in making sure group time becomes a little less taxing for Finley.  Finley now has her own calendar right in front of her that she can work with and that has helped a lot.  Circle time has become less of a stresser for her, and we are seeing better attention.  Her writing is improving, as is her kid writing.  The school is really trying to get things straight.

Coming up soon, Finley will be having an occupational and physical therapy evaluation.  You see, LCA isn't just about vision for a lot of kids.  While in Finley's case - and most kids with RDH12 LCA - vision is the only MAJOR thing wrong, there are some other things that come along with the diagnosis that affect other parts of the body.  For one - she cannot process vitamin A well.  She has very thin, stringy hair, very brittle nails, and is skinny as a rail.  She also has low muscle tone.  It is not terrible, but we have always called her "jello girl" because she is just floppier than Arlington.

As her teacher talked to us in December, the low tone came up because Finley doesn't have good trunk control.  She has a hard time holding herself upright in a seat for a long periods of time at school.  She is often seen holding her head up with her hand, or sliding down and laying her head on the table to work.  It takes a lot of back and muscle strength because she has to lean in, or lean over to see and she wears out quick.

I talked to the therapist, and they want to put some things in place at school, but also do a full evaluation to make sure they aren't missing anything.  They also made some suggestions for some things we can use at home as well.  Since we don't have hoseback riding lessons right now (which were a major plus when we were living in Connecticut) we wanted something we could use to also work at home.

Today, the products that were suggested to us arrived.  Finley was so excited.  Funny that she got excited about equipment, but whatever.  I think most of the excitement came from me blowing them up with the pump.

Here is what we got:

The yellow ball is for sitting on while she is watching TV.  It has "feet" on the bottom, but she has to balance it to keep from falling off.  That is probably going to be the most challenging - and most fun - one for her.

The red is for sitting or standing.  It is not flat - it has air, so when she sits on it, it does require some effort to get it to be still.  Again - this will help with her trunk.  She can also stand on this one to help with balance.

The blue one is to help get her to sit up straight.  It actually forces her to, which is going to be great.  This is the main one they will be using at school.

The little squiggly here:

This is for fidgets.  She will be using this only at home.  Finley is a very "handsy" kid.  She will put her hands all over your face.  It is a sensory outlet for her, but it isn't really socially appropriate anymore now that she is getting older.  This keeps her hands busy.  She wears it on her wrist and it gives her hands something to do.

So - that is where we are.  Tomorrow we have an appointment with her pediatrician to review her IEP and talk about what is going on in school.  I am hoping her pediatrician might also help guide us down this path as we decide what to do for next year.

Because I feel that no matter what - in the end - the decision we make will feel like the wrong one.