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.

Brendan Turns 2 years old Today -A Letter from Mommy (May 2nd, 2014)

                 

    

          I can’t believe I am sitting here writing you a letter on your 2^nd birthday. As with your first year, your second year has just flown by so fast. It makes me sad how fast you are growing up, but I’m loving every second of watching you grow. A week after your first birthday you went from learning to crawl for a total of 7 days to just standing up and going straight to walking.  You then became an Olympic runner, a professional climber to letting yourself up the stairs and to getting into all sorts of trouble. You then thought it was funny to walk around with your eyes closed which lead to many bumps and bruises all over your body. You were the baby who didn’t move to now you’re the toddler who won’t sit still. It is so funny how fast things change.

         A month after you turned 1 you were diagnosed with autism. Most kids who are 13 months old get to play all day and just be exploring toddlers. You were faced with a schedule that most adults couldn’t handle. You have to work so much harder than any other child your age. You are being dragged to countless doctor appointments, enduring up to 46 hours of therapy per week but you have taken all of these challenges and made them part of your life. You have made autism your superpower! Your strength has impacted so many people. You have taught me to look at life so differently. You have made me a better mom, wife, daughter and friend.  I have worked really hard this year to make sure that I have been your voice. Let me tell you my voice has been heard! Thank you for teaching me what true strength is, you are a fighter and you have made my heart fuller.

         You have developed such an amazing personality. Your organization, climbing and determination are the perfect recipe for laughter! No matter where we are you know how to get everyone to focus on you. Whether it’s your blonde spiky hair, your blue eyes or your skills with the IPad. You are so smart; your mind is always trying to figure things out. Even though you are non verbal you always find a way to get everything you want or need. You amaze others around you on how you communicate without words. When you want something you love to give kisses because I think you think that works best, and it does.

         You are 100% a momma’s boy and I love every second of it. Your favorite word is “momma”. You love your trains, puzzles, cars, tv, swinging, bubbles, farm animals, trampoline, running and climbing.  You also love being with daddy when he has his tools out. You LOVE being outside and you always want your sister to come and play with you. Not a day goes by when you don’t require a good soak in the bathtub. I have nicked named you the monster because you have NO FEAR. You make everyone around hearts stop because you do the scary things. I have learned to stop worrying and have accepted its what you love to do. Everyone tells me its part of having a boy!

You have so many limits when it comes to food but you somehow seem to still be in the highest percent of weight for your age. It truly stuns all your doctors how solid you are. You are obsessed with your chips, dried snap peas and your mum mum’s. I don’t leave the house without those in my bag. I wish I could eat as healthy has you do! Someday I will join you.  

Today is your birthday but to you it is just another day.  To me it is a day that has forever changed me. Thank you for coming into this world and making everyone around remember what life is all about. I love you more than words can express!

        

         Love,

         Mommy
PS. Even though you have no idea it is your birthday we are still celebrating like every other child does! Someday you will understand what all this excitement is!

Brendan saying the "s" sound

 

Brendan saying the number 9 & bye bye