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10/30/2012

Its going to get difficult...

Natalie hasn't had a physical therapist in several months. The place she goes for all 3 types of therapy (also including occupational therapy & speech) has been having a hard time finding a physical therapist that is good & will actually stay longer than a week.

Working with special needs kids all day is alot more demanding of a job than you might think...

Since she hasn't been receiving "PT" there its been pretty much up to Mike & I to make sure she keeps going with work and at the very least... she doesn't regress before she can start seeing a professional again. (& by "Mike & I", I mean me, since he works all day) So I take her to the park and try to get her to use her walking toy (which she has completely lost interest in), swing her on the swing for a break and some fun then back to more work taking steps up and down the stairs to the slide.

Often at the park Natalie and I get other children who want to play with her or want to know what shes doing. Its becoming more difficult to explain "her" to children since shes getting older.

I was swinging her on the swing today when a little girl asked Natalie if she wanted to go slide with her (let me just add the slide is up several stairs and across a little chain bridge). I told her she couldn't slide yet & the little girl asked me why. I told her what I usually tell children, "Shes just a baby". She looked me dead in the face and said "No, shes not a baby, shes big like me!" It was so sweet the way she said it, but I admit it broke my heart a little. I told her she was right, Natalie was big, but that Natalie couldn't do all the big girl things that she could do yet. She didn't understand so I tried to explain, but failed. The little girl asked me why I took Natalie to the park if she couldn't do stuff & I didn't know what to say. I just told her because she likes being outside & she likes to swing. The whole conversation kind of caught me off guard really & we ended up leaving sooner than I had originally planned.

I dread this step. This growing up and the stage children get into where they know something is different, but they don't know why or how to handle it. I wish I could just let her play at the park. I know I look like one of "those moms" that's always holding her kid and is afraid to put them down and let them get dirty, but I'm not. I put her down and she goes for the nearest thing and pulls it down on top of her or tried to eat it or hits it with whatever she might be holding... She doesn't know how to climb on the couch yet & she certainly hasn't figured out how to safely get down once we put her there (she just crawls off face first!).


I know what allergies look like or when a rash needs to be medicated, but what her Pediatrician cant tell me is how to raise her.

When/how to potty train a child who cant walk or speak or climb on the potty?

How to discipline a child when your not sure they understand the word "no"?

How can I get my child to not eat dirt even though she clearly knows it tastes awful?

Where is the line between protecting her from herself, and just being overprotective?

How do I explain to other children that shes different, even though she doesn't really look like it?


She is no longer a baby, she is just different. She is perfectly imperfect. My wonderful wonder.

Not having a diagnosis doesn't help because when adults ask me whats going on with her, I have to explain that I don't know. Children with down syndrome typically progress faster than Natalie currently is.

One day at a time.

Whatever steps are next, I know they will be difficult. I also know that they will be rewarding.
I wish I had the innocent, happy spirit my daughter has.

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