September 9th-16th Brendan 16 months old

     
This week we started all new therapy for Brendan. I was extremely nervous on how he would do since he is doing more hours of therapy in a row than he has done prior. Tuesday was our first day, we started at SARRC(southwest autism research center) jump start program. It is a 6 weeks course for parents and the child to start learning how to teach and model aba(applied behavior analysis) therapy. There is only 6 kids in the program at one time. Our group has 1- 6 year old, 2-5 year old, 1-4 year old, 1-22 month old and then Brendan 16 months. We found out that Brendan is their youngest child ever to enter this program. The first hour of the day the kids all go in a classroom with a couple therapist and the parents go in a room together to do some educational learning of aba therapy. Then we watched on a big screen TV each child goes in a small room with a therapist. We have someone explaining to us what the therapist is doing with our child and why. It was really fun to watch how your child is with other people when you are not around. Brendan over all did pretty good. He had a couple moments of small breakdowns but overall he did well.
       After sarrc on Tuesday we had a 2 hour break so Brendan squeezed in a little nap and some lunch. Then he started his at home aba therapy, which will be 2 hours at a time. Katie his new therapist was amazing with him. She knew just the right way to give him his space but still interact with him. He started to catch on really good with how the aba process works.

       On Thursday we headed back to sarrc for another day of learning. Brendan had woke up at 4:30am for the morning so he was already sleeping in the car on the way to sarrc at 7:30am. Of course I had to wake him up so he started therapy not in the best mood. But after he woke up he just jumped right into what the therapist was asking us to do with him. Thursday's at sarrc we spent the first hour with therapist giving Brian and I one on one training with Brendan. He did really well for us. Then we spent the rest of therapy again in a class room learning the next steps to aba. Later that day he had aba therapy with Katie and Brendan just did so good. The excitement I felt after such a great week of therapy is something I want to feel all the time. I know this sounds crazy but after just a week of new therapy he has already made big changes. But again my fear is the regression. But for the moment I am going to enjoy the progress he has made.

Brendan's food limitations has me doing constant research and constant searches for foods he can eat. I was on a mission to find him cookies he could eat. I came across a company that had 3 different kinds of cookies that were free of all of Brendan's food allergies. So I ordered them since nobody in AZ carried them. His 3 boxes arrived at $10 a box and you get 12 small cookies in one box. I had try one and honestly they were really not that bad. Brendan who is not great with introducing new foods grabbed the cookie out of my hand just started to devour it. Again this is moment for me to watch my child light up when getting to eat his first cookie. It brings tears to eyes because I want him to be able to have those experience like every other child. You can't put a price on those experiences. He has also started to eat better with table foods so we are trying to get him off his prescription formula. We introduced coconut milk and again surprisingly he liked it. So this week we will hopefully get him off the formula. Here is the link for the cookies www.cybelesfreetoeat.com

 

         On Friday night I received a phone call from the state(altec long term care) letting me know that I will be having Brendan's medical interview assessment. I have been waiting for this call for 3 months. I have been preparing all the paper work and medical letters etc that I needed for this interview. The first time I had this interview it was a complete disaster. The interviewer backed me into corners made me think Brendan could do tasks that he couldn't do, they lied about policies etc. Which I believe is partly why he was denied. I have had my amazing parent mentor Trisha and Cynthia from Greater Phoenix Autism Society preparing me for this moment. I needed to know every single law behind all my rights because you have to make sure the state doesn't walk all over you. Sunday night Trisha spent 2.5 hours of her time on the phone with me going through all the questions and making sure I was prepared to fight. She knew how nervous I was so she offered to come over Monday and sit in on the interview with me. So she not only spent all sunday night on the phone with me but then left her own son who is in therapy all day to come and support me. I couldn't say enough thank you's to her for the support. She just kept saying to me us Autism moms stick together and we all help each other out. I wouldn't have the knowledge I have right now with out these women's help. The state will do whatever they can to not get you services. It is truly sick and cruel how they put us through all of this so our kids can get help. I was up majority of the night sunday going over and studying the state laws. This morning comes and its time for the interview. I was so nervous because this next hour of an interview determines whether or not my child gets more therapy. I feel like it went good. Trisha said that I officially have received my warrior badge in the autism mom circle. I was extremely emotional during the interview because all I want to do as a mom is to help my child but I was being dragged through the mud and questioned on every little thing. Now I sit and wait to see if this time around he gets accepted. Today has been such an emotional day for me. So I am happy that it is coming to an end.
          I am ready for another great week of therapy and I am ready for my little man to make even more progress! Thank you to everyone who has signed up for the Walk For Now Autism Speaks walk. Thank you to everyone who has purchased shirts to support our walk. You all are the ones that when I have these bad days help lift me up and remind me that I can get through this. We love each and every one of you!