Last weekend we did the Autism Speaks walk, it was very inspiring. It was great to get out of the house and walk with others that are going through similar situations as our family. We walked with Joseph's consultant on our case with Capitol Autism, Nimantha. She had me laughing so much it was great. Capitol Autism cooked us breakfast prior to the walk so it was great to sit down with other families and employees of Capitol Autism and talk. I had to hold back my anger for Joseph's tutor Misty as she was there too but luckily we ended up losing her so we had a great time.
This past week with ABA was full of changes. First the lead on Joseph's case moved to Sacramento to go to school so due to the distance they assigned a new lead, Melissa. Melissa came over this week to meet us and it was a very positive meeting. As I ask everyone that walks through my door I asked about her background and her experience with autistic children. Melissa not only has years of experience but has her own personal experience with autism, 2 of her 3 kids are autistic. She is so sweet and Joseph took to her quickly. I look forward to what lays ahead with Melissa and I asked her some questions about her experience with Autism and it was great she is so open with me and honest. Change can be scary but sometimes it is for reasons other than you and I may know at the time.
On Wednesday Joseph had his MRI and it was traumatic to say the least. While in the waiting room a nurse came out and told us she needed to put cream on Joseph's hand and tape it on to help numb it which will help reduce the pain he would feel from the IV. Jason and I were trying to explain to her that Joseph is not a typical child he is autistic and placing something on his hands he will flip out, she quickly replied "I work with these kinds of kids all day long I know what I am doing. If you don't want him to be in less pain then I don't have to do it" We kept explaining to her how this wouldn't work and she was just so cold and literally heartless. So while in the waiting room with 20+ other patients and Jason holding down Joseph she puts the cream on him, while poor Joseph was in hysterics. Before she could even finish the 2nd hand he got the cream in his eyes and we just old her to forget it, this just wasn't working. So she left while our son was left in the waiting room with us in hysterics. He barely could breath and just kept saying "Go, Go, Go" and trying to take us to the exit. Then the sweetest nurse came out to get us, unfortunately Joseph is at a place now where if he sees a person in scrubs or an exam room he goes back to hysterics. I don't blame him at all!!! So when the doctor came in we decided to give Joseph a sedative drink to calm him down. Let me tell you it was the funniest thing ever, within 10 minutes he was laughing and pointing at the pig in his book. Yep my kid was a bit tipsy. They let me stay while they put him to sleep and I was sitting there with him talking to him and next thing I knew his eyes just closed within 4 seconds of them putting the IV in. It was the craziest thing ever.
Waiting for Joseph was so hard, either Jason or I have always been with him. I had to put trust in the doctors and nurse to watch over him like I would. About half way through I had them check in with the doctor because I was going insane not knowing. The sweet nurse came out and reassured me everything was fine, and it ended up being. As we left the MRI, we ran into the mean nurse and Jason stopped her and told her, maybe next time you should offer the cocktail sedative before the cream for autistic kids. (First time ever Jason mentioned the word autism and referred to Joseph in a sentence) Her response was great, "Well if your son ever has a MRI done again you can tell them that". Wow nothing like listening to parents and possibly helping future patients. Overall looking back with Joseph in hysterics and the mean nurse that combination just made the experience awful. Jason and I agreed there is no need to test Joseph further, we know he is autistic and we know his strengths and weakness'. We just can't put our little boy through this ever again unless there is an obvious medical reason for it.
I woke up sick with some virus on Thursday and was literally laid out for 2 days. It was no fun, but as I have said a million times before things happen for a reason and this is why I think I ended being sick and not able to go to work. On Friday, the tutor Misty was here and if you read last week's post you would know she was treading thin ice with me. I noticed about every 5 minutes Joseph getting upset with her and frustrated( he doesn't do this with the other tutor), anyways she asked him to do the signs for twinkle twinkle like this "OK Joseph we are going to sing Twinkle Twinkle now so sit down" and he didn't want to and he told her "no" (one of the few words he verbally says) and he came and sat with me. Just for the record this is not the proper way to work with a 2 1/2 year old. This is too structured for them at this age, it should be way more play based. After sometime Joseph requested balloons with PECS and she refused to give it to him because he had not done the twinkle song. I told her excuse me but when a child requests an item you need to give it to them right away and she replied "no" because he didn't do the song. Needless to say I was pretty mad on top of being sick. So I called the Consultant, Nimantha and asked her was I wrong? If I am wrong by all means I will own up to it. Wow, I was correct. With PECS if I child requests an item correctly you should give the child the item immediately otherwise you defeat the purpose of PECS and could set him back 2-3 weeks worth of hard work. I told her I was very furious with Misty's actions and the tone she took me was out of line. I ended up calling the office as well and spoke with the clinical manager who is Nimantha's boss', boss. She agreed Misty was out of line and I explained what happened last week and she told me " I am going to guess you don't want her back?" So another bites the dust....as my facebook status said.
Friday night we had our bi-weekly team meeting at our house scheduled and it was going to be arranged that Misty was being dismissed immediately from his case and not to come to the meeting. My darling teenager played a prank on me and says to me from another room "Mom, guess what? Misty's here" Oh the blood was boiling I was ready to politely ask her to leave, knowing me with the anger I had at that point it wasn't going to be nice like that. So who walks through the door.....Cheryl, the other tutor!!! Oh my child is truly rotten, ha ha. So during the meeting I made sure the one's that are left on Joseph's case are well aware that they understand what I am looking for and pretty much said if everyone runs things like Cheryl it will go smoothly for all. So now they are on the hunt for another tutor because unfortunately due to the amount of hours Joseph receives we can't have just her. So because I don't sit by quietly I will be in contact with Capitol Autism's hiring manager to ensure she knows exactly what our Little Joseph needs as far as a new tutor is concerned. They obviously need help in picking staff.
Wishing everyone a fabulous week!!
Jenn
Pictures for Autism Speaks Walk
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