This blog explains how Brendan was diagnosed with autism at 13 months and it will also follows his day to day experiences. His journey will explain how and why getting early intervention works. He will go from being non verbal to verbal to not needing any more therapy. He will define the odds and prove that getting diagnosed with autism at such a young age helped him live life like a normal kid. As a parent always listen to your gut!
I have decided that every couples months Brendan just needs to take a vacation from therapy. Since we have come back from vacation he has been working harder than ever and making lots of progress. A break definitely works for him to just let go and have fun! Brendan has been introduced to lots of new skills the last couple weeks and he has exceeded everyones expectations. I normally over load you with lots of words but today I am going to over load you with videos of Brendan!
June 17th we packed the car up with not an inch of room to spare and headed to Carlsbad for our first stop. Brendan did amazing on the car ride over. I couldn't of asked for anything more from him. We spent our first night with friends who live in Carlsbad, so it was super fun getting to catch up and let all the kids play. The first night in the hotel Brendan figured out how to climb right out of the pack n play. Yes he is like spiderman when it comes to climbing. He can climb anything! So getting him to sleep was not fun but I absolutely expected this to happen.
We got up on Wednesday and drove to San Diego and went to Sea World. We arrived and the first thing we did when we got in went to customer service and let them know that Brendan had special needs and we needed to make sure he would be able to stay in his stroller during the shows. Otherwise we wouldn't be able to see a show. He won't just hang out and sit with you so this was our only option. They never even questioned me and gave us a tag so Brendan's stroller would be considered a wheelchair. It was a lifesaver, we were able to enjoy the shows in the handicap section. It was a little awkward, we did get a lot of stares. But oh well we did what we needed to so the family could enjoy the day. Brendan spent a great deal of the day in the stroller playing with his iPad. There was a little kid section that he got to get out and play. It was like a big water/trampoline area. Brendan was happy to be free and run. He was running and playing and did a little quick interacting with some other parents around. I noticed he kept hanging out in this one area so moved to be closer to him. I had a mom come up to me and say,"your son is such a sweet happy boy". I responded and say,"wow thank you so much." Thank goodness I had my sun glasses on because I started to cry. To have another mom and a complete stranger who knows nothing about our daily struggles with Brendan tell me that, was such a special moment for me.
On Thursday we headed to Lego Land with my brother, sister in a law and my nephew! This place was great for my daughter and my nephew. Unfortunately all the rides Brendan couldn't sit on my lap so I know he wouldn't just sit next to me so there wasn't anything he could go on. There was a toddler play area with little houses that he could build with big legos. He actually went up to a little girl stacking blocks and stacked a block for her on her tower she was making. I was so excited to see him playing with another child. But after he stacked the block for her he purposely knock it down and the little girl started to cry. Yep that would be my kid. Oh well it was a plus to see him with another kid playing. In the toddler section that had a small train ride. Well once Brendan laid eyes on the train that is all he wanted to do. He would just watch the wheels of the train going around. When it was time to get off the train he cried. So we got back in line foe the train but he doesn't understand the waiting part. He would have rode the train all day! Lego land was a success!
This would be the little girls tower he knocked down!
Friday we packed up the car again and headed to Huntington Beach Hyatt Regency to meet my family to celebrate my grandparents 60th wedding anniversary. We arrived to the Hyatt and wow what a beautiful place! We were all so excited to be reunited with my whole family! We had plans that night to get pictures done with everybody and the we were going to have dinner celebrating their anniversary! We headed to pictures and has soon as we get to the area of the hotel where we were doing them Brendan started to get fussy. I get him out of the stroller to get in the pictures and he starts to have a complete melt down. We were in this kinda of big hallway area and it was super windy. Well Brendan wanted nothing to do with getting his picture taken. I felt awful because he was totally ruining the everyone's picture. We ended up just letting him have his train, passie and blanket in the picture to just try and keep him from running away. My first thought was it was dinner time so he was hungry. I really didn't know what was going on. He had been so good right up until the pictures. So I haven't seen the pictures yet but I can almost promise he will be crying in all of them. We headed to dinner and he was great. It was late so I packed his jammies and he ended up falling asleep at dinner. We had so much fun at dinner with everyone. I have the most amazing grandparents I could ever ask for. I can only dream to be just like them someday. They are a big inspiration to me and I absolutely love them so much! They are everything to me!
Saturday we were up early as we normally are and we decided to head to the beach. The beach was just right in front of the hotel. I was fully prepared to go to the beach knowing that I wouldn't be there very long if Brendan didn't like it. We took him to the beach a couple weeks ago and he was not a fan at all. I sat him down on a big blanket with his iPad and he was good. He sat there and just played the iPad. I don't even think he looked up or knew he was sitting on sand. Well after about 20 minutes or so the wind started to pick up and he jumped up in my arms and started to cry. I didn't really know what was going on, I thought he was cold because I was cold on the beach. It was still early and the sun wasn't out yet. I took all the towels and wrapped them around him and he pretty much cried himself to sleep on me. As he slept on me I started thinking that the start of his behaviors both related to the wind. The night of pictures it was super windy and then he was fine on the beach until the wind came. This is the joy of having a child on the spectrum. You have no idea when and what is going to trigger there sensory system. I would have never thought wind would bother him. When he woke up he was crabby so we left the beach and went to the hotel to swim. The pool had 3 different watersides. We took Brendan down the smaller one first and OMG he laughed the whole way down. Well from then on we must have went up the waterside stairs 50 times! Brendan just has no fear!
Brendan is sleeping under the towels!
We spent the next 3 days at the pool 99% of the time. We did go walking around Huntington and did a little shopping. Overall Brendan did so good on our trip! A couple little hiccups but nothing we couldn't handle!
Today we had an appointment at the Melmed Center. I always get super nervous for these appointments because so far every time we have gone I felt like more new issues and diagnoses were brought up. But as I was thinking about the last 3 months I was actually going into this appointment knowing that he hadn't had any big regressions and he was making some progress. So for the first time we left the appointment with no new diagnoses!!!! He told me to keep doing what we are doing!!!! That was a great feeling!
June 17th, 2013 is a day that I will never forget. Today is the 1 year anniversary that has forever changed our family. The day that Brendan's doctor gave him his official "Autism Spectrum Disorder" diagnoses. The feeling I had that day is something no parent should ever have to feel. Just thinking about my emotions on that day literally makes my knees weak. This past year has been such a roller coaster ride of up's and down's. I have watched Brendan make progress, regressive, cry, fight, fall asleep during his year of therapy. We have had some amazing therapist and some not so good therapist come in our lives. But we finally have the most amazing team working with Brendan. When you spend close to 50 hours a week with them they actually just become part of your family. Brendan's therapist treat him with so much love and care and I couldn't be more lucky. They even treat Haley with the same love and care.
I want to thank all of our family and friends that have supported Team Brendan this year. We had one of the largest groups at the Autism Speaks walk in October. We ranked in the top 10 of the donations raised. I couldn't have been more proud to be part of Team Brendan. I am so excited for this years walk which is on October 26th, 2014. I know we will have an even bigger team representing Team Brendan! We also were part of the Autism Society of Greater Phoenix bowling charity. We were definitely the largest team! We all had so much fun bowling and our team won so many amazing prizes. We will be participating again next year which will be sometime in April 2015. Thank you, thank you again. We wouldn't have made it this far without your love and support.
I have been watching older videos of Brendan when he first started aba therapy and it is so crazy how far he has come. Brendan truly is the hardest working 2 year old. As we begin the 2nd year of our journey in the autism world I hope life starts to get a bit easier to manage. I know as Brendan gets older we will face many more challenges but I am confident that we will get through them! I sit here with my eyes filled with tears. I have so many emotions about our experience so far but I know god has a plan for everyone and he gives me strength daily to get through my days. I love you all so much! I can't wait to see what this year brings!
Brendan finished his last day of therapy yesterday and was amazing! He knew how to do things we had never even asked him to do before. What a way to finish before we take a week off of therapy! We are now on the road headed to San Diego & Huntington Beach! My next post will be all about our trip!
I have made a video of the progress Brendan has made this past year!
I first really want to thank all my family and close friends that reached out to me after my last blog post. It means so much to us to have so much support. I am happy to report that Brendan just had a really good two weeks. It was so fun to watch him make so much progress after such a rough couple weeks. I am learning with kids on the spectrum that life has so many ups and downs. Brendan and his therapist have been working on a lot of basic skills. For example labeling. Which is having him identify objects. Teaching him what a train is, cup, snack etc. Then they have been working on him giving a hug, sitting down when asked, standing up when asked etc. All of the basic skills that typical kids just learn by watching others. Brendan has done really good with his goals this month so I think we will be ready to have new goals soon.
Brendan loves wearing his swim vest around the house. I think he likes the pressure it gives him!
We are getting ready to go on a couple vacations this month. Most people would be so excited to go on vacation. Me on the other hand am not looking forward to it. When you have a child with autism traveling isn't so easy or fun. I am actually terrified. We have been pretty much home bound for last couple weeks so Brendan's daily routine is going to be extremely altered. He does really well with his routine at home because he has figured out to communicate in his surroundings. The hardest part is Brendan can't eat any food when we leave the house. So this means going on vacation I have to bring every meal for him which is really hard. This weekend we are headed to Rocky Point with some of our closes friends. Then we will be home for a week and then we are going to San Diego and going to Lego Land and Sea World for the first part of the week. Then we are going to Huntington Beach to meet all of my family from the bay area to celebrate my grandparents 60th anniversary. I am so excited to be reunited with my whole family! Some of the family hasn't met Brendan yet so this is a real treat for us! Plus my daughter Haley will get to celebrate her 7th birthday while we are in California! So wish us luck on our trips and I will have pictures and updates after we return.
This a video of Brendan doing his therapy. My favorite part is Brendan blowing kisses!!!!!
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.
I can’t believe I am sitting
here writing you a letter on your 2nd 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!
I got a call yesterday from the state saying that all the speech and occupational hours that I have been fighting for the last 8 months has finally been approved. It is only approved for the next 90 days but that is ok it is a start. Thank you to my new team from UCP(united cerebral palsy) who helped get him the services he needs! I am pretty sure with all complaints that I have filed against my past team and the crazy emails I send weekly they are finally just giving into me. lol But it is what he deserves. I might be one crazy autism mom but I will never give up fighting for my kids. Never give up!!!!!!
