Tuesday, May 20, 2014

Mid May 2014 Update - It has been a really Rough 2 weeks (Brendan 2 years)(24 months)

     
              May 2nd was Brendan's 2nd birthday so I thought I would take him to do something fun instead of having therapy all day. So I decided to take him to a place called AirTime which is a place that has a toddler section with trampolines and bouncy houses. I had taken him there before and he loved it. He was a total wild man there last time. I took Sara his hab therapist with us and thought we could do a little therapy since outings are so difficult. We arrive right when it opens and we head back to the very back where the little kids section is. There is only 2 other little kids playing. I get Brendan out of the stroller and start walking toward one of the bouncy houses and all of a sudden he grips on to me and starts crying. I stop immidatly because I didn't know why he was crying, he was trying to get down so I put him down and he ran back to his stroller and crawled back into it the seat and even had me strap him in. I was so taken back by his reaction that I really didn't know what to do. I looked at Sara and said this is so weird I don't understand why he is so scared. As a mom my heart was crushed. I thought by taken him here  would fun for him but instead I scared him. That is the last thing I wanted to do. So I decided that we would leave him in the stroller and let him watch the other kids and see if that helps. Sara and I even took turns going in the bouncy houses and sliding down the slides. He thought it was really funny. But he still didn't want to get out of his stroller. After about 15 minutes I took him out and took him to the trampolines and started jumping with him. He finally started to laugh, he then realized that it was a trampoline and wanted to get down. He ran around with Sara and I and wanted us to jump. But I noticed every time he got close to the bouncy houses he put his fingers in his ears to block the noise. So I finally realized that the blower noise that fills the bouncy houses is what was scaring him. The noise is not loud at all but to Brendan it really was a big deal. I know it is a very typically trait for autistic kids to be extra sensitive to noise but prior to this he never had any problem with noise. This was a fear that I had and hoped that I didn't have to deal with.

         The next day after his birthday brought more challenges. He went from having very few tantrams to all of sudden having them non stop. Anything and everything would trigger them. He has also started to develop some obsessive compulsive behaviors which have really started to interfere with our daily life. So within just 3 days he went from being a child that I could take places and his autism was at times hidden to now having a child where is autism is front and center. I try and be a strong parent and I can usually take a step back and figure out the why and how I can help him. But all these new behaviors had me so taken back because they just went from a scale of about 3 to 10 in seconds. This was when I just had my own melt down. I know I am intitled to have these emotional break downs but it is still so hard to go through the daily struggles that autism families endure. I had to pull myself together because the next day we were having close to 50 people over to celebrate Brendan's birthday.
         Brendan loves trains. He plays with his toy trains all day everyday. Every time we have taken him to the train park he gets so excited when he rides the train. Having his party at the train park was unfortunately not an option. He is labeled as a flight risk. What I mean by this is he is a runner. He won't let you hold him, hold his hand or anything so his safety is always a big concern for me. Which is why is strapped in his stroller anywhere we go. So I thought I will get a train to come to our house for his birthday. I am a crazy Pinterest crafty mom so I went and got a little crazy with the decor and baking as I normally do for my kids parties. Unfortunately Brendan couldn't eat any of it due to all his food alleges but I had special cupcakes made for him. Which he didn't like at all. But how can you not give your child a dessert for their birthday. Maybe one of these birthday's he will decide to like them. I was so excited for Brendan to ride the train however when I went to put him on the train he started to cry and jump out. I was so shocked. He wanted everyone else to get in the train but not him. I was sad that he didn't want to ride the train but he got just as much joy watching the train go by with everyone on it. Brendan has no interest in opening presents. He doesn't understand the concept yet. So when he was sleeping that night Brian and I opened all his gifts so when he woke up in the morning they were all out assembled and ready to play. When he saw all of them it was like Christmas morning he didn't know what to play with first. He loved all of them.
               It is now the day after his birthday party Monday May 5th. I was looking forward to this day because his amazing developmental doctor Dr Gentry had called a team meeting with all his therapist and himself to meet at my house. Again who's doctor willingly makes house calls. It is so unheard of but I am so grateful he is on our team. Dr Gentry had some concerns about certain goals that some of the therapist had set for him so he wanted to make sure everyone was on the same page. But the first thing we had to address was his behaviors that had started this past weekend. I explained to Gentry what had been going on with his obsessive behaviors to his tantrums. It amazes me how Dr Gentry gets and understands Brendan's issues. So far Dr Gentry solutions have worked perfect for Brendan. My favorite part of his plan of action for Brendan was he said if Brendan could talk he would say,"I am the boss I am in control and I am going to have everyone in this room do what I want." This was the most perfect analogy because that is exactly how Brendan is. Dr Gentry spent 2 hours with all of us working with Brendan and making sure his next set of goals were age apprioprate . When he left I broke down in tears of joy. My tears were tears of feeling so lucky to have him in our lives. I truly wish everyone could experience this. Doctors like him are so unheard of these days.
          The days following our meeting I was using all the tools that I was given by Gentry. They were seeming to help but Brendan just kept having some really bad hard days. He would have a good day here and there but for the most part he was having a rough time. I am trying to break these obsessive behaviors and this was something that he wasn't having any part of. My days the last 2 weeks couldn't end fast enough. I had many days where I just felt so defeated as a parent. But I am thankful to have such amazing family and friends who help remind me that it is ok to cry when I need to.



2 comments:

Sarah Ann said...

Hi! I found you through Instagram and totally relate to this post! My daughter is on the Spectrum and is going to be four in two weeks. We too have struggled with sudden tantrums and behavior changes. Hang in there mom!! I grab hold to the fact that this is a phase and won't last forever! :) I know how rough it can be, though, and will be praying these behaviors subside soon!

Gina said...

Thank you so much for the kind words and support. From one mom to another it truly means a lot!