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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Tuesday, May 11, 2010

What do you say when you can't say anything?

(I am going through drafts and finally posting them)

Truly, so much has been going on in our lives and most of it is something we cannot speak about for various reasons. So I log on to write a blog post and just log off. When our lives are enmeshed with others, we have to honor their privacy.

The school year is winding down for all of us, I am so relieved Meghan will have a break from her online school, because it means I will too. I have a constant inner dialog going with myself about schooling at home, "Meghan needs to interact with same age peers" and "Our school district CANNOT meet my daughters needs, and she is not safe in their care". I never set out to be a homeschooling mom, I never thought I would be, but until our district can clean up their act, I cannot entrust another child to them, especially not a child with special educational needs.

Meghan's alopecia has progressed on her left side again, she is nearly bald on that side. Before now she did not seem to notice, but I spied her with a mirror last week, and she was looking up at that huge bald spot with tears in her eyes. I told her she was so pretty, she smiled a tiny smile at me. My heart broke for her and I choked back my own tears, doesn't she have enough to deal with without this? Now I know that hair loss is not life threatening, and I know it could always be worse, but this is my sweet girl and she is sad about how she looks. A very insensitive person asked me why I cared, since Meghan has Down syndrome, and already looked different, who cared about her hair? Some people are just so clueless, truly. Meghan is a little girl first, and girls like to feel pretty. It is likely the hair will come back again, I keep praying for remission of her alopecia, perhaps if more joined me the prayer would be answered.

I am at wits end with Kara's obsession with food, I have taken to putting heavy objects in front of the fridge to prevent her from opening it repeatedly. She does not seem to know when she has had enough food and she is getting too heavy. I have asked her OT and ST if they have any suggestions to get her to stay away from the kitchen, they all say they are trained to help kids eat more, not less. Any suggestions? It is 12 hours of constant supervision and it is taking time away from her sisters. I am sure she gets weary of hearing "Out of the kitchen Kara" . I have taken to making her sit on the floor just outside of the kitchen to wait for her meals. She wrings her hands and whines if she does not get her food often enough.

1 comment:

KonaGold said...

Well of course Meghan is a little girl first! It infuriates me that people are so inconsiderate! She is a beautiful little girl, I think she looks just like Julia. I don't see down syndrome, I see a beautiful child. I remember how sweet and shy she was the one time I met her. You are so blessed. :)
As far as the food goes... have you tried fridge locks and cabinet locks? I have a baby proof handle on the pantry and a baby proof fridge lock- Aiden can open them, but Elijah cannot. Another idea, will she eat veggies? I hope this doesn't sound bad, but when one of my dogs was overweight, I learned that giving "empty" calories like veggies (by empty I mean fat free or low fat) would help her to feel full but not cause weight gain. Obviously Kara is not an animal, but I wonder if the same principal would apply? Does she eat fruits and veggies? Mine aren't very good about eating fruits or veggies... :P

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