Quick Update
Emma has a Psych eval next wednesday for school, she is also going to have her hearing and vision screening tests- I have been on the phone non stop trying to expedite this process to get her into therapies ASAP. I think they are starting to realize that when it comes to my child, I will call 20 times a day until someone answers my questions.
I also have spoken to an attorney regarding My rights and her IEP, not that i think it will go to that extent, but atleast now I know where we stand. The schoolboard has been very nice, but not very quick- meanwhile Emma is 3 weeks into school with no idea of when we are going to start (they are saying months- I informed them that that was not acceptable regarding her therapies- They moved her to the top of the list and we have an understanding now.)
Please keep her in your thoughts and prayers- This has been a very trying and emotionally draining time. Her behaviors seem to go in circles, and right now we are full fledge in rages and ticks. Its hard on her, and on our family.
we are going tomorrow to by a crib net- Hopefully then she will atleast be safe while she is awake for hours upon end at night.
I cant wait to sleep without checking on her every hour- But I am sure I still will.
I did have coffee with a neighbor of mine whos son is Autistic (how cool is God?!) and walked away feeling a bit better. Even though our children on two totally different ends of the spectrum, it was nice to just vent and talk about things that I knew she understood (not to mention TONS of coffee and cake!) God always provides, and that is just amazing to me.
He holds her in His hands, and I am secure in that promise.
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I think for the last year I have been in denial. I always knew that Emma Grace was slower, and developmentally regressed, I honestly always suspected she was autistic. But for some reason this is hitting me like a ton of bricks. I watched her today, wondering what the future held for this precious little girl who has fought so hard to be here. I watched her body move in ways she couldnt control, her mouth make sound that were not typical for a 5 year old. I watched her scream - in a high pitch voice as if she was talking to someone who isnt there- she does this all day long, as if it is a basic part of her day. I watched her play with her toys in the only way she knew how- In groups. All of the spongebobs together, all of the mickeys together, all of the barneys together. I tried to see the world through her eyes. Its hard for me to imagine what her world looks like.
Tonight as we put Emma in bed, I found myself just welling up with tears. My 5 year old daughter still sleeps in a crib. I cant explain what that does to me. I find myself angry and bitter towards those who have “normal” children during the day because I spend my day with a child who often stares right through me, and it breaks my heart. I listen to people tell me that I am so blessed that she has come so far, and they are right- We are greatly blessed- But it doesnt erase the pain of knowing what she will never be.
Up until recently I put those thoughts in the back of my head. I thought school would be her saving grace. If she could just be around other children, she would find herself again and things would be okay. I am not sure they will ever be okay.
Im going to take some time off blogging. I need to do this for me, but more importantly I need to find her the help and the support. I need to find support. I need to be around parents who are going through the same thing, parents who can help me when my daughter wont stop banging her head on the floor- I need that right now. She needs that right now.
I will still update, but emotionally, I only have so much to give- and I am running dry.
And with that, I hope it shows you a glimpse of what families with autistic children go through on a daily basis. I watched it and realized that as much as I dont want my daughter to have this, she does. It was so very evident. Its one of the hardest things a parent can face- A child whos world is so grey and distant. I would give anything to play dolls with my daughter, to sit and read books and color. But with every negative, there is a positive- I am thankful that she can now look at me and call me Mommy- even if sometimes she is looking through me- It still does my heart good to hear it.
Until later, be blessed.
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