Dec 16th-Dec 18th New Speech & OT Evaluations (Brendan 19 months old)

         It is Monday night December 16th and I normally write my blog at the end of the week but tonight I feel that writing is what I need. Brendan had his speech evaluation this morning with a new therapist and in a new place. We are doing another evaluation because I need more proof to show the state that he needs more therapy. So I know in my head what the therapist is going to tell me about Brendan. I know he won't score good but for some reason listening to someone tell you doesn't get any easier. Now that I have been through a couple evaluations I know what to expect. They do a play base testing and go down a list of different skills. Brendan was being his typical self and jumping from toy to toy and wouldn't give the therapist any attention. She observed him for over an hour and also asked me lots of questions. The final report of the evaluation I won't receive for about 3-4 weeks. But she did give me an overall explanation of her thoughts. She said he is pretty much at a 3-6 month old speech skill level. There is one area that he is just barely hitting the 9 month level. However she said his problem solving skills are above his age level. Except he is a non verbal problem solver. But she isn't evaluating him on that level. Listening to her tell me that he needs so much help absolutely breaks my heart.  We leave the evaluation and I get in my car and just start crying. I spent the next couple hours crying. I know I try and be strong all the time but today was a day that I just couldn't be strong. It just really hurts when you have to keep hearing how far behind your child is. Again I knew that I was going to be told this again but it just crushes me every time. Later tonight we were all finishing up dinner and I decided to play peek a boo with Brendan. He hasn't actually covered his eyes on his own to play but he lets me put his hands up to play. All of sudden he initiates the game and puts his hands over his eyes to play peek a boo. I was so EXCITED. This was a big accomplishment. Then after he played peek a boo I started to clap with excitement. Well you all know we have been working on clapping with him for about 5 months and he doesn't even put his hands together yet well he started to pat his chest which we figured out was his version of clapping. I put his hands together to clap and what do know he claps his hands for a brief second. You all have no idea the JOY that this brings me. I am now of course crying with tears of happiness. Thank you to Brian who was behind me with the video. I watched the video about 20 times tonight and cried each time. I sent the video to his aba therapist and she tells me she is crying because it is that big of a deal to us. What an emotional day it has been. My mother in law told me that Brendan knew how defeated I felt today and this was his way of telling me,"mom I am going to be ok, I will figure all these skills out someday."Here is the video of him playing peek a boo and clapping.

He had lots of therapy Tuesday and Wednesday and he has been in a really bad mood. He has been giving his therapist a really hard time and pretty much does whatever he can to avoid them. He is at the point that whenever anyone comes over to the house he will just start crying because he thinks they are all coming over to do therapy with him. This has been a week where I just keep questions my self as a parent. I know this is the right thing to do for him but it just makes me so sad that he has to do all this therapy and not just get to be a typical toddler. I guess I am just having really hard week too. My emotions are out of control and Brendan is having a bad week so I think this is making it all that much worse. Thank you to my family who has let me just vent and cry all at the same time. He has one more therapy session on friday and then no therapy for a whole week. I am not sure if I am more excited or Brendan. I am looking forward to Christmas and seeing how Brendan reacts to his presents. I hope you all have an amazing Holidays & Merry Christmas!

Dec 2nd-Dec14th Brendan is now 19 months

         Wow I can't believe it is the middle of December already. Life is so chaotic and busy right now I have found myself not remembering what day or week it is. I have been spending every free second I get on reading through all the research I received from the Emily Center. This research will be a big part of proving my case to the state. Brendan has been busy the last 2 weeks. The week of December 2nd he was back at SARRC doing another research. It was only 3 days long nothing to intense and all went well. That same week we took Brendan and Haley to an event by the Greater Phoenix Autism Society. They had a autism friendly event at the movie theater. The kids got to see Santa and then they showed the movie Frozen. They made sure the lights were dimmed but not to dark for the kids and then they had the sound at a volume that the kids could handle. It was really neat to be around other autistic families. Most of us don't even have to talk to each other, we just look at each other and you just feel that connection. Brendan didn't stay for the movie because it was way past his bed time but Haley got to stay and enjoy the movie with other siblings. Haley hasn't been to a movie since before Brendan was born so she really thought this was special.
       Later that week Brendan got to make his 1st TV appearance. Our family felt extremely honored that they chose Brendan's story to share. I can only hope that his story touched other families. Plus Brendan looked so cute on tv you couldn't help but watch him.

www.youtube.com/watch?v=d9bXJCXxdJs&sns=em

    Brendan made some huge progress this last week. He had some mornings that he actually slept in until 6, 6:30. On Monday morning Brian went and got Brendan and brought him to me so I could snuggle with him in my bed. Brendan actually found the remote for the tv on my bed and put it in my hand after he put it in my hand he POINTED to the tv. You all have no idea how exciting this was. We have been working on him trying to point for the last 8 MONTHS. I was screaming with excitement and of course Brian is like you better turn the tv on now. lol. I was just so excited that I didn't even think to turn it on. But I did and I had a happy little boy. I was giddy all day and smiling from ear to ear. These are the things that I used to take for granted. Now I can't even explain the joy it brings to me. He has since pointed at the tv 2 other times. However he is only doing it about 40% of the time so he is close but not close enough to say he is actually pointing. So we are working really hard to get him to do it all the time. He also this week started to wave  ,"hi & bye." Well sort of he will keep his hands down by his side and just slowly open and close his hands. It is so cute when he does it. We don't get to practice it much because every time I say,"bye bye" he starts to cry because he thinks I am leaving. He is SUCH a momma's boy! In this video you have to watch closely but he moves his hands a little.

Brendan has had a nasty little cold the last couple days so I am trying to get him to rest this weekend because next week is an even crazier week. We are putting 2 weeks of therapy into one because he wont have any therapy the week of christmas. He is also getting new speech & occupational evaluations next week. I have to get these on my own to add to my appeal for the state.

Brendan has been obsessed with watching, "Mickey Mouse Christmas," he is trying to say,"Santa, but it sounds like Danta."

       

November 25th-Dec 1st ADOS test (Brendan 18 months)

     

          After our crazy week last week I was really hoping for a little break mentally. Well first thing Monday morning we headed to the Melmed Center for Brendan to get the ADOS(Autism Diagnostic observation schedule) test done. He hasn't had this test done yet because when he was first diagnosed he showed significant signs of autism that they didn't feel the test was important. But most kids get this test before getting diagnosed. His doctor wanted him to take the test for 2 reasons one to provide the state with more evidence to help my case and then the other reason is to get a better idea of his level of autism. I was able to sit in and watch the test however I wasn't allowed to say or help in anyway. As she started the test she set up some problem solving games. Then of course he walks away because he was uninterested in what she was doing. So she tries to call his name a couple times and he doesn't even turn to look at her, it was like he couldn't hear her. She told me to try calling his name which I did and no response. The test went on for about 45 minutes and then she told me to give her a minute while she figured his score out. The scoring of the test was 0-28 and the higher the number the more severe of autism they have. I knew by watching the test that his score wasn't going to be good. He scored a 20, which puts him in the severe category. It crushed me when she told me his score because I had felt like he has been improving but when comes down to it he hasn't made much progress. So then I immediately when into thinking like is all this therapy and money we are spending going to be a waste, what kind of future does this mean for him. I kinda just went into freak out mode inside even though I was acting calm from the outside. His doctor said this is just more proof to the state that he needs all the services we are asking for. She is right but it still just hurts. After we left the Melmed Center he had just enough time to sleep in the car get home to eat before his next therapy session. Monday was a long day for him but he actually handled it really well.
           On Tuesday his aba therapist came over and I was catching her up on his ADOS test. She helped me feel better because I had told her what he did too even score the 8 points and she said that if he would have taken that test 3 months ago he wouldn't have even scored those points. She is right the points he did score is actual things he has learned with therapy. She felt positive that he is making progress so we are going to keep doing what we are doing. So since it is a holiday week he had lots of therapy packed together over 2 days. I am glad he will have a good 4 days of no therapy. My little boy really just needs a break right now. He has been through so much so its a break that is truly needed for him.
     Our tv segment is supposed to air on either Monday or tuesday night on channel 15 news. I will hopefully know by tomorrow. But if not they said it will be on their website if you miss it.
        I really hope that everyone had a fantastic Thanksgiving! I am just so grateful for my amazing and supportive family. I am thankful for my husband who works his butt off to support us and then for my healthily beautiful kids. I love every person who has reached out to help us!!!!!