It has been 15 months since I started the process of getting Emily a communication device. She went through all of second grade and half of 3rd grade without her permanent communication device. I could have had a baby, open heart surgery, recovered from open heart surgery and an appendectomy in that amount of time.
My daughter cannot talk; at all. She cannot come into the kitchen and say “I want milk”, she can’t say “I want to go out and play” she can’t say “mom, my stomach hurts” so what we live with is one huge ass game of charades. We do use some PECS and have used TapToTalk (until last week) but those are just one word meanings and My daughter has A LOT to say but with no way to say it she acts out, banging her head on the ground or the wall, smacking herself or others, screaming, crying and kicking. It isn’t her fault, she doesn’t want to act out but she has no other way to get her needs met. Here’s an example, the other day she wanted popcorn…no prob she can get that herself so she got the popcorn and then opened the cabinet with the bowls but she’s too short so I got her a bowl, opened the popcorn, put it in the bowl and gave it to her. She began to cry and I said but you asked for popcorn, eat your popcorn. Then she started to sob and I became angry because I thought she was just being a damn brat crying after she had gotten what she wanted. Finally, through a series of exasperated motions I understood that she wanted the pretty bowl and I had given her just a regular plastic bowl. I gave her the pretty bowl and she was so happy, and smiled eating her popcorn….meanwhile I was standing there wondering WTF just happened.
Emily had a device, it didn’t work for her so we decided the iPad would be best so that she could have programs for both communication & ABA. This was in November, I was told it could take a few weeks. OK so there were the holidays, then we moved and yes, I should have emailed the day we got back from break but I spaced it. I email on the 11th asking about her iPad and was told they didn’t get my case choice (I sent that to them on 11/22/2010 but she said she didn’t get and asked that I resend it, so I do and then wait. Nothing and then I call…nothing. SO comes to yesterday and I send an email asking what is going on? Radio silence. Today I call and the receptionist actually connects my call. Turns out she hasn’t ordered the iPad yet and still has no email from me. I told her to stop talking, that my daughter can’t talk and so neither could she. She was stunned, I could feel it. I told her to forget it, that I was going to the state and reporting her and her agency for violating my daughter’s rights. I get off the phone and send an email to both her and her director. The email wasn’t mean but it was certainly direct. I get a call minutes later telling me that the device will be here Friday maybe Monday depending on the weather. I thank her and she said she had to because she didn’t like getting yelled at and I said told her there was nothing, nothing at all about this process that I liked. I hung up the phone.
I will never understand why people make me bitch them out. I will never understand why things have to be so damn hard, I will never accept my daughter being treated poorly and if you treat her that way I promise you that I will fight you back.
Ahhhhhhhh releasing it all is soooooo nice.