Tuesday, March 8, 2011

Fragile: Handle With Care

The Dancing Queen begins special education preschool tomorrow. She is already in regular preschool, but this program is through the school district and is designed to help her catch up physically to other kids her age.  Spending 1/6 of your life in a hospital bed will slow you down and DQ does not have the endurance nor the strength to do what most kids her age do. Then you add on top of that her DiGeorge's Syndrome, with really long fingers and deep webbing between the fingers and she can't perform the fine motor skills required of the average three year old.  Finally, you add hemihypertrophy and the 3/4 of an inch discrepancy she has between her right and left leg, balance is an issue. She does wear a lift (and has braces for her ankles, but those are related to her very first surgery back at 7 days old).  Anyway, there is a lot of work to do to allow my baby to catch up, so she is starting the new new school tomorrow.

All of this has me beyond emotional. I spent the entire IEP meeting last week in tears thinking about this. I've spent more time crying throughout the last week thinking about this. I balled on the phone with the Editor about this. I told her it was because I didn't like the thought of the Dancing Queen in the special education classroom, but I don't think that is all of it. I had thought that my emotional outbursts were due to DQ being grouped with other kids who are cognitively behind her because I don't want her thinking/socializing development stunted simply because she is weaker than the average 3 year old or can't do a pincer grip.  While that all that is a concern, I don't really think the teachers would be holding her back cognitively, nor socially.

I discovered today that my main problem is the way all of the teachers have been approaching this transition. I have learned that not only does my daughter need special education, but she needs a lot more help than I thought. She is even different than the kids in the special education preschool. She doesn't even fit in with her peers! It is frustrating and scary. If you can't fit in in special ed preschool, when are you ever going to fit in? It is hard enough to be a kid (kids are mean), but then you don't fit in anywhere?!? How is that possible?

I hear you saying: "But are they really singling her out?" I don't know, but it sure feels that way (and yes, it could be my own baggage once again).


The teachers discussed how DQ will likely need adaptive writing devices as she ages because she will not have the endurance to write. Maybe lots of kids can't write in school because they get too tired, but I doubt it.

When I learned the times for the class (8:55 am to 11:55 am), I freaked out because DQ wouldn't get back to her regular day care in time for lunch and if she doesn't eat right at noon, she won't eat because she will be too tired. None of the other kids have this issue. So, they had to accommodate it, which is great, but adds to my list of "one of these things is not like the others".

Then, when they gave us the tour of the school, they made a particular point of identifying all of the ways they try to minimize germs, specifically saying while nobody else has the immune problems DQ has, we do this and that.

I don't know how many times I heard that DQ will get special treatment above and beyond the other kids.  While it is great that they are taking care of her, it just reminds me no matter how hard we try to keep it all normal, she is not.

That was all last week. The straw that broke the camel's back though happened today when I was desperately trying to find out the logistics for tomorrow. I was concentrating on DQ catching the bus, getting lunch, what I needed to pack, and smack, they hit me over the head with it.  The Dancing Queen is the most medically fragile of the kids in the special education preschool.  Fragile . . .  I have never thought of DQ as fragile (except maybe when she is hooked up to tons of lines and I'm trying to hold her and I don't want to pull the lines).  But, fragile is never a word I would use to describe her.  The Dancing Queen is rough and tumble. She faces life head on. She doesn't care about princesses, she is not into delicate things, and all she wants to do is play soccer and swim (okay, she does like purses, but who doesn't?)

DQ's "medical fragility" has led the school to take her out of the classroom with the kids her own age and close to her own size. I was so excited that DQ would finally be around kids who were close in size to her, still bigger, but closer (at her regular preschool, all of the little girls, age 3, use DQ as the live doll they dress up). Yet, because of her fragility, the special ed preschool is now placing DQ in the 4 year old classroom instead of the 3 year old room.  There are less kids in the older class and the teachers can monitor her better and will be able to accommodate feeding her in that class versus the younger class. Part of me is happy that DQ will be in with older kids because the cognitive delay I was superficially worried about shouldn't be an issue, but . . . FRAGILE.

This "fragility" also persuaded the transportation department to move DQ up on the bus drop off schedule, for which I am grateful. But, who wants to think of their child as fragile or more fragile than the others? Seriously, a preschooler should not come with the label "Handle with Care". I am afraid they will be stand-offish with DQ because she is medically fragile. That is the last thing I want. We are set on allowing her to experience life. I just need to be sure that her needs are met while letting people know it is okay to let her do things. She might turn blue on you when dancing around, but she'll sure have fun doing it!

How do you teach people that delicate balance we play everyday?


  1. ((Hugs)).

    What a beautiful post. It should be required reading for everyone who will work with your beautiful daughter, and, really, anyone who will work with children with special needs...or for that matter, anyone who will work with children, period. You are so right; it's such a balance, and sometimes we tip too far in one direction, forgetting that this pulls the other side out of balance.

  2. It sounds like it might take them some time to get comfortable with DQ's situation but I would hope that as they get to know her they will find some of that balance on their own. Wishing you strength for the big day tomorrow

  3. I think that you and the Mad Scientist need to just continue treating the Dancing Queen like the three year old that she is. Let her do what she can and wants to do. The teachers are going to get to know her and they'll make adjustments. Enjoy putting her on the bus. Cry a little (or a lot). Take a few pictures. Look forward to her sharing the new experience when she gets home.



Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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