I have attempted to sit down to write his January blog about 15 different times but somehow I never seem to start it. My life has always been busy since Brendan's diagnosed but somehow the last 2 months life has seemed to have gotten even busier. I get asked the question all the time from family and friends of how I can manage to do it all and usually my answer is, " I just get it done." But lately I feel like my head is just barely above water. So I apologize for being so behind in my blog updates.
I don't even know where to start because I have so much to catch you all up on. Right before Christmas Brendan received his communication device which is an iPad mini. This has an app on it that allows him to tells us what he wants. It basically talks for him. As you all know he uses PECS(picture card system to communicate) so this is basically is his PECS cards now uploaded on to this device. This is an actual iPad mini and eventually he will be able to use it to play his games and youtube videos but right now he doesn't even know that it has the ability to do that. We are trying to transition him to this device. It has been an adjustment for me as well. I am still learning how it all works. This device is actually going to get him to use more language and hopefully someday we will not need it. My dream is someday he will talk! The state actually purchased the iPad mini and also purchased this very expensive Touch App for Brendan!
Brendan has a huge love for Mickey Mouse and even bigger love for Minnie Mouse. I had seen that Disney on Ice was coming to town and I really wanted to take the kids to see it. But as it has been for so many other events that I have wanted to go to, I think to myself there is no way Brendan can go. He isn't able to sit on my lap. He doesn't even let me hold him, he is what we call a "flight risk" he runs and runs and runs and doesn't care who or what is in his way. But this time I thought I am going to see if there is any possible way I could make this happen to take the kids. I called US Airways arena and asked for the special needs/handicap supervisor. I explained my situation to her, I wanted to be able to keep Brendan in his stroller as if that would be the only way we could enjoy the show. However I was afraid that where the handicap sections were that there would be the bars in front of them and since his stroller is much lower than a wheelchair I just didn't think it would work. She was so sweet to me and talked me through all my options and was willing to help in anyway she could. She offered for us to come down to the arena with his stroller to test all the sections out. I thought perfect that is what we will do. Well she called me back about an hour later and said that they actually had front row seating as an handicap option. I was so excited because I knew if anything Haley would be so excited! So that is what I eneded up buying for us to go as a family and enjoy the show. I picked a Friday morning show knowing that it would be less crowded and more than likely a lot of younger kids. I knew there was a chance that Brendan wouldn't be able to handle the show. So we took Haley out of school, Brian took the day off work and off we went to the show. We got personally escorted down to our seats through all the secret behind the scenes hallways. Haley was in heaven. We got their with just a couples minutes to spare. The show starts and with in 5 seconds Brendan starts crying. Lately he has been showing so much sensitivity to crowds, noise and lights. I try to calm him down but nothing was working. I get up and take his stroller into the tunnel area where the Suns players come out of. Thank you to all the staff who allowed us to stay back under the tunnel. As long as he was under the tunnel he was ok. He could see a little but not much. I sat on the concrete floor in front of him to make sure he stayed calm. Brian stayed in the seats with Haley so she could enjoy the show. The intermission came so I thought I would try this again. I went back to the seats while the lights were on but he then started to cry so back I went to sit on the freezing cold floor. lol. About 10 minutes into the second half I look over at him and he is completely sleeping! How he fell asleep with all noise is so crazy to me! Thank you to US Airways for helping us make memories with my kids. They were so great and easy to work with!
The following week Brendan needed to go down to the school district to get an evaluation. This was needed because he is in the state early intervention program, they require it gets done before they turn 3 years old. At 3 we have the option to put him into a developmental preschool with the public school system. However I had no intensions in putting him into school yet. We are actually applying for what is called an ESA(Empowerment Scholarship), which is a scholarship provided by the state for you to use toward any kind of private school. Your child has to have an IEP or an MET with the public school system in order for you to qualify. If you choose this scholarship then your child will not be able to attend public school only a private school. It can also be used for home schooling and some Aba therapy. This is what we are choosing to do for Brendan. We don't plan on enrolling him into school for at least another year. He is getting all there therapy he needs at home so there is no need to start school. So I needed the public school to evaluate him because that is what I had to turn in for my scholarship application. The evaluation lasted 3 hours and was super nerve racking. The part that was hard is that I had to keep quite about the scholarship he was applying for because the school system could of really messed everything up for me. So this was all super stressful for me. The evaluation report came back Preschool Severe Delayed and Speech Impairment. This was actually the worst diagnosis you could get at his age in the school district. The school district doesn't give your child an autism diagnoses until the age of 5. Which I know is stupid but that is the way the system is. Even though a developmental doctor has given him the diagnoses it is not accepted in the school district. But I got all the paperwork I needed for the scholarship so fingers crossed it all gets accepted.
Just last week we had the pleasure of having Aaron Blocher-Rubin the CEO of AZA United which is where Brendan gets his 40 hours of habitation therapy with come and visit us at the house. He came during one of our monthly HAB M meetings. He wanted to video tape Brendan and observe him. I was excited for him to come and see how great he was doing. Well that morning Brendan was in kind of a funky mood. So I was keeping my fingers crossed that he would do good. Well that didn't happen. Brendan was a complete NIGHTMARE!!!! He had so many big melt downs while he was here and he just didn't want to do anything for us. So I was of course totally embarrassed. I know this wasn't the first time he has experienced this but still not something you want to happen to you. So the visit was a big disappointment.
Overall Brendan is doing pretty good. We have encountered lots of new issues lately but this is all what being a parent to a child with autism is about. He continues to show improvements in other areas so that is all I can ask for. Brendan has such an amazing team of therapist. I am so lucky to have each and everyone of them! They invest so much time into him and they are always researching and thinking of ways to help him even on their own time.
We are also lucky enough to have Brendan's story featured in North Phoenix Family Magazine in their February issue. They asked us to share his story and resources to help spread awareness to other families. This is my passion, I want other parents to get educated and know that they can get a diagnoses early! Thank you for letting us share our story. Here is the link to see our story http://northphoenixfamily.com
