Wednesday, March 21, 2012

Day 21-Today is the day

Today was one emotional day.  I've been prompting people for a few days now to find a way to spread Down Syndrome awareness for World Down Syndrome Day and my family and friends did not disappoint.  I teared up quite a few times today reading what people had to say and I could not be more proud to be part of such an incredible group of people. 

Then this afternoon we had Tera's annual review for Early Intervention.  Basically what happens is we meet with all of her therapists and her coordinator and they all share where they think Tera is in various areas.  Since she currently receives developmental, physical, and speech therapies, each one of those therapists discussed how delayed they think she is and why they think that.  At today's meeting we also had an occupational therapist present that had just evaluated Tera this morning.  After each therapist talks about what she's currently doing and what she's close to doing, her coordinator asks us what our goals are for the next year.  This is really difficult because as much as I know about Tera and her skills, I'm not that knowledgeable on what I should be expecting of her and it's not like we have another kid to compare her to (which is usually an advantage). 

After thinking for a few minutes I just asked her therapists what they think is reasonable for her in the next year.  What we ended up with is that we hope she'll be crawling on all fours, pushing herself up to sitting, recognizing more objects by name, using some signs and increasing the sounds she is making.  I know there are a ton of other things too, but I just can't remember them all right now. 

Finally, we decided on what frequencies her therapies should be at.  For now, her physical therapy will stay at once a week, her developmental will increase to once a week, her speech will stay at twice a month for six months and then increase to once a week, and we're adding occupational at twice a month for six months and then increasing that to once a week.  I have no idea how this will all work, but we'll figure it out. 

I was fine during the meeting, and I was fine right after.  But about an hour later it kind of occurred to me that we shouldn't have to have this type of meeting.  She should just be progressing at a normal rate and not have to have a meeting with seven adults deciding how far behind typical kids she is.  But it wasn't even really that.  It was the fact that no matter how well she's doing, there's always going to be something else she needs to improve on, just to catch up.  And this was exactly my fear a while back.  According to her therapists, developmentally and physically she's about 33% delayed.  The occupational therapist placed her at about 15% delayed, and in speech she's about 50% delayed.  It's not the numbers that bother me, I really mean that.  It's more that despite all the things we think she's doing well, and she is, there's just more things that she's not doing yet.  I'm not in anyway concerned about the present or the future, it's just a reality check again and it kind of threw me off for a while. 

I think I actually do have more to say on this, but I'm too tired to keep typing.  It's been a long day and I need sleep. 

Thank you to everyone who participated in World Down Syndrome Day, it reminded me once again how special Tera is, and all of you, and made the feelings I was experiencing this afternoon, a lot easier to deal with.

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