Today was a very hard day for this mommy. I found my breaking point. I knew having a special needs child would be challenging, but I don't know that anyone could have prepared me for what it is really like. Things with Jayen's school has always been below standard for my expectations but things today seemed to sink to an all time low. First day back from break and I received a text message from Jayen's teacher informing me that she forgot she had a dentist appointment the same day and time she scheduled Jayen's parent teacher conferences. I was a little confused since we scheduled it three weeks ago. After texting back that Matt was scheduling work around this conference she decided to call. I was taken back by all of this. Wasn't this my son's teacher? Isn't she supposed to be teaching my child right now? Who is supervising him? Who is teaching him? I appreciated the heads up but why when the kids were in the classroom?
I was on the phone nonstop with every facet of "help" that Jayen is receiving. I feel sometimes we need a little less "help". After the appointment with Dr. Melmed, I emailed school informing them that we will need to change Jayen's diagnosis for our previously scheduled IEP transition meeting. The school psychologist emailed me back today asking if I had the paperwork they gave me at our last meeting for his OHI diagnosis; the same paperwork I turned in over a month ago, told the teacher was in Jayen's backpack, came home two days in a row still in the backpack, then physically handed to the teacher and asked her to give them to the case manager. Nope I turned those in. She can't find them anywhere and is requiring me to have it filled out again. Sure, let me drag three kids to the base clinic once to drop it off and once to pick it up because you can't communicate or keep track of my paperwork. The psychologist, on her own volition, faxed the paperwork to Dr. Melmed's office. So when I received the call from his office telling me that since we didn't wait for the official paperwork they would have to charge $20 to fill it out, I refused. This was not my mistake and I should not have to pay for it. I will get the paperwork filled out by Dr. Easter again and drag the kids to the base; guess my bon bons will sit at the house and melt waiting for me!
After I spent the entire morning dealing with school, during Jayen's therapy I called the ABA company to see what the hold up was on getting Jayen services. We had a referral, a prescription from the doctor, and prior service so this should not take this long. The representative we had been talking to was out of the office for the week, so we were directed to another. She was willing to look into for us. As she was looking she wasn't sure if we were informed the center they were building close to us had decided to change its deliver model and would no longer be doing in home sessions. WHAT!?!?! For three hours a day, five days a week, you want me to bring Jayen to you. YES, yes, I have nothing else to do or other children to take care of. NO! How is that best for Jayen anyway? You are supposed to be looking at his behaviors in his environment and applying your scientific approach to changing these behaviors. How is trying to recreate those behaviors in an unknown environment with different antecedents and consequences the most appropriate environment for ABA therapy? When my bon bons are gone, I guess I'll start looking into new ABA therapies. The few I've called already have a four month waiting period.
By the time Jayen was done with therapy and we picked Dalan up from school, I was done with the day. I had to send a quick secure message to Dr. Easter informing him about the paperwork, so I asked the kids to go upstairs and go to the bathroom before naps. It took me a matter of minutes to log in, send the message and log out. But in that time Thing One and Thing Two decided that the laundry room looked so much nicer than the bathroom. Jayen crawled on top of the washer, dumped the laundry detergent everywhere, then proceeded to the bleach; his clothes are obviously ruined. When he tried getting down everything was too slippery due to the detergent and he fell leaving an amazing scratch and bruise on his side. I was furious and wasn't sure where to even start with this mess. I didn't know if the bleach was on their skin and burning them, on the carpet, where they had even dumped it. I called Matt in a panic. I just needed him to talk. I just needed someone to make this life go away. I'm not sure what I wanted or needed him to do, but I just couldn't handle anymore of this day. He could hear my desperation through the phone and left work. I just couldn't take anymore of this. I want to leave this place and go HOME! (add stomping foot and uncontrollable sobbing on the floor) Something has to give!
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