Autism Diagnosis 8 year Anniversary

 On June 17, 2013 Brendan was diagnosed with autism at just 13 months old. Our life turned upside down and we didn't know what the future would be for little boy. We started early intervention which consisted of aba therapy(applied behavioral analysis), speech therapy, occupational therapy, feeding therapy, physical therapy and habilitation therapy. This became our new normal. We would have 10 therapist in and out of our house 5-6 a days a week for about 30-40 hours a week for the next 6 years. So much hard work from his team of therapist, Brendan and from us which is why I believe he is thriving today at 9 years old. 

https://youtu.be/bw2cNCOXjic

SOMETHING BIG HAPPENED-THERAPY HAS COME TO AN END

              SOMETHING BIG HAPPENED 🧩

               It might not be big to you, but for me this moment was 6 years of so much hard work from Brendan and his dream team. When he was diagnosed with autism at 13 months old I set out a goal. The goal was for Brendan to be able to go to a typical school and to just live life like a kid is supposed to do. From the age of 1 to 5 years old his life was anything but typical. He had at home therapy 6 days a week for about 40 hours a week. While other kids had play dates he was working hard to just learn to talk, engage with others and to learn simple skills. The therapy was working and he was making unbelievable progress. He entered kindergarten at a typical school however he had full time therapists(aid) in class with him to make sure he had someone to spend the extra time teaching social skills and to help with things like controlling his emotions.

              This year he entered 1st grade at the same typical school with his full time therapists(aid). However the school, his teacher, doctor and team of therapist all decided that he has reached his goal. He no longer need anyone at school with him! HE DID IT! I DID IT! HIS TEAM DID IT! MY FAMILY and FRIENDS DID IT! He told me he feels like such a big boy. I have been a complete emotional wreck since getting a text yesterday from his amazing therapist saying, “just finished my last day with B and he gave me a HUGE HUG while I tried to hold back tears.” That exact moment everything hit me. Every emotion from the feeling of getting his diagnosis to feeling envious of other typical kids, feeling sad on days when autism just got the best of us, to feeling happy when he walked into school for the first time. All happy and sad thoughts just hit me like a ton of bricks. His autism is never going to go away but we made it to a place that so many other kids on the spectrum never get to experience and that is what is making me so emotional.

                He will still have his 2 hours of speech therapy and his weekly feeding therapy. Those won't be going away anytime soon. He also recieves physical therapy for his hyper mobility syndrome. Then all his other activities are also therapy for him. His dance, gymnastics, modeling, acting baseball, basketball and soon he is about to start soccer! He is the busiest kid I know!!  #autism #autismawareness 
                 

Autism Boy dances to Steal the Show

Brendan competed his solo this year and did so amazing. I was so proud of all he accomplished this dance season. He has worked so hard and wants to be a star. I told him he can be anything he wants but it all takes hard work. I am so grateful to everyone who has continued to support our family and that help us to continued to educate others that getting diagnosed early is the key!!!!

Celebrating So Much Success at 5 years old

This is the first time I have decided to do a Vlog(a video log)! I hope you enjoy it. Extra special thanks to Franco Zavala for making this amazing video!

Having Autism but Living a Typical Life at 5 years old

  This will be my first post in a year and a half. I'm sincerely sorry for being away for so long. Life just kept getting away from me. Brendan is now 5 1/2 years old and he is currently in pre-K. This will be his second year in school. We had decided when Brendan was about a year into therapy that we would not start him in pre school until he was 4 years old. We thought that keeping him home and continuing his intense therapy would be better than starting school right away. I will say that was the absolute BEST decision we have made. In the fall of 2016 he started pre school at 4 years old. We put him in a typical school but he started school with kids a year younger than him. We did this to make sure he had the best opportunity to succeed with his typical peers in a typical school. He was allowed to have his aba(applied behavior analysis) therapist attend school with him at all times. He had such an amazing year. He is still at the same school in this current year with his typical peers. He still has his aba therapist with him at school, but this year the difference is he pretty much only needs her when some of his peers can't understand his language. His speech has come so far and is improving everyday but with his verbal apraxia sometimes it is hard to understand him. The teachers and principle at his school have been so amazing to Brendan and our family. I am truly grateful for the opportunities they gave Brendan. As a parent I was extremely nervous to have him in a typical school. You just want your child to fit in and they made sure Brendan had all the tools he needed to succeed. His teacher this year has been one of the best teachers either of my kids have had. She is making sure all the kids are ready for Kindergarten.

                                         


           The summer of 2017 we started introducing more academic lessons. We started with simple math and sight words. From the moment we started this we realized just how smart Brendan was. He went from simple math to adding and subtracting 3-5 numbers in his head within days. He loves anything with numbers. He now can add and subtract multiple double digits numbers in his head faster than I can.lol. It truly blows my mind how smart he is. At the same time we induced some basic sight words. Well within just a couple of weeks he had about 100 sights words he had learned. In a month of starting sight words he had learned to fully read. As his mom I just couldn't believe what he had accomplished. I didn't even know or think he was capable of learning those skills at that level. His aba team had done a years worth of kindergarten curriculum in just 6 weeks. Thats how fast he was learning. His can also write full sentences and all his numbers. This has made school very easy for him but its also given his therapist time to focus on the social and language struggles at school. We are still continuing to teach him his academics at at his current level at home. He is currently doing math and reading at a first grade level and he is only 5 years old and in pre k. I am such a proud mom. This is a moment that I get to brag about the things he is doing at or better than his peers. Something I thought I wouldn't be able to do. Next year he will be attending a private catholic school with again typical peers. His therapist will be able to attend school with him but we are working on finding times that he can be at school alone. He has currently had days this year already that he has attended school without his therapist and he has done really well.

      Brendan is extremely social sometimes almost too social. He is the happiest most fun energetic boy. He loves life and he also loves everyone around him. He has had so many amazing first and a lot huge accomplishments over the last year. He is living a very typical life which is something I am so grateful for. He still does close to 35 hours a week of therapy but this is only because it is and has been working so good that I am a bit afraid to scale back. He is most successful when we stay ahead of things and prepare him for everything. He has made so many friends, he gets invited to so many birthday parties because everyone says Brendan is so funny and super fun to be around. That always makes my heart melt and I will never get sick of hearing it.

      In my last post a year and half ago I had posted how Brendan started taking dance class. Well last year he continued to take dance and he even added a class so he was taking two classes a week. Dance brings him so much joy. In August when the new season of dance started I signed him up for 2 classes again. He kept telling me he wanted to dance everyday. I would just laugh at him and say, "B you are so funny." Well the first week of classes started and my daughter takes dance 5 days a week 10 classes, she is on the company/competition team. So Brendan and I were there everyday and everyday that first week he would go up to the teachers and say am I in this class and they would say sure Brendan you can dance. Well he ended up trying 6 classes Monday thru Friday and I told him he could pick 3 of them. Well that wasn't what he wanted. He begged me to continue taking all 6 classes.  Dance has HELPED him so much through this autism journey. Dance is a place he can go without his therapist and just be a kid. The social, following teacher instructions and performing are all things that are great for him to be exposed to. So I felt, how do I say no to my child that has been told he was going to have so many limitations in life. Well I said yes to all 6 classes. For the last 6 months he has been rocking all 6 classes everything from tap, ballet, hiphop, musical theater, tumbling and stretching class. He even gets to take 2 of his classes with his sister! He was definitely born to be on stage. He shines on that stage and he doesn't have any fears being in front of people showing off his skills.

        My 5 year olds weekly schedule is more than most adults can handle. He goes to school for 12 hours a week, has over 30 hours of therapy a week, he takes 6 hours of dance, and he plays baseball once a week. He loves structure and routine plus he has so much energy so keeping busy is the best idea!

       I will be posting about all of the adventures we have gone on in the last year. We have had so many that those need their own post. I promise I will be better at keeping up on posts.

     

Getting Early Intervention for Autism works and My Son is Proof - Brendan 4 years old

       The last 4 months have been the greatest months since we started this autism journey. I have so many amazing stories and progress to share so bare with me while I brag about my son. Getting to brag isn't something I am used to but I am going to continue to enjoy every second.
          Anxiety has been a big issue for Brendan over the last 2 years. He has refused to get into anybody else's car expect for mine for the last 2 years. This has been such a struggle for us especially my husband because he wouldn't even ride in my husbands car. We have been working on getting him to just touch anther car from the outside to putting his iPad in the car so he would have to get in the car to retrieve it. We have worked on this for over a year. I am happy to share that he has gotten into a couple different cars over the last couple months without an issues. This is a huge win for all of us. Going to a bowling alley has also been a big struggle the last 2 years. Well this kid just walks into bowling like he has done this before. He listened, waited his turn to bowl but the best part is he had so much fun! He had an amazing experience at the dentist and the doctors. He used to kick and scream at both of those. He is starting to understand what is going on and he is realizing that all the things he was so scared of are all ok.

         
  I was asked by AZA United to speak to American Airlines employees to give a parents perspective on flying with a child with special needs. I was able to share all of my own fears I have when flying with Brendan along with his anxiety issues. I wanted them to know that autism can be an invisible disability but their employees still need to be educated. If we are in the air and Brendan starts crying it is not because he didn't get a cookie its because he is terrified. I wasn't even sure if he would get on an airplane since he has anxiety to so much. We are getting ready to leave on a 10 day vacation and I was terrified that it was going to be a disaster flying with him. After my speech was over I had some of the employees approach me and say they wanted to help. They set up a day where we got to go the American Airlines hanger at Sky Harbor airport. They had a plane set out just for him! They had it turned on so he can hear the sound. They let him go into the plane and explore anything he wanted. He was super excited to go into the plane but I wasn't sure if was actually going to go in. But what do know he walked right in with absolutely no issues. American Airlines has gone above and beyond for my family. They made sure our trips next week will be perfect. They have helped me so much. It is one less thing I have to worry about on our trip. Thank you to AZA United for choosing me to represent your company and thank you to American Airlines for making sure Brendan has the best experience flying.

  Brendan started taking a tap and ballet combo dance class with 3-5 years old in late March. He loves to dance so much and he is always wanting to join his sister Haley's dance classes. So I thought why not let him try the class. He absolutely loved the class. He picked up on the dances that the other kids in the class had already learned so fast. He showed such natural skills in class. I was blown away. He blended in with the other typical kids. Watching him in the class he didn't show any signs of his autism well maybe a couple non stop spinning episodes but that would be it. After a couple classes I said something to one of the other moms about him having autism and she didn't believe me. I had to try and convince her that no he really does have autism. I said he has made so much progress in the last 3 months that if you had met him 6 months ago you wouldn't be questioning me because it was so much more obvious. This is something I only could of dreamt of. Brendan was able to perform in the big dance recital. Thank you to Adaptive Force Performing Arts owners Amber and Mike Wittmers for allowing Brendan to have some special privileges to insure he had a great experience. I stayed with him at all times and was able to stand on the side of the stage during his performance. The first time he walked on stage in front of a couple hundred people and danced his little heart I was a mess. I stood on the side of the stage crying my eyes out. I just couldn't even believe this was really happening. My little boy who was diagnosed with autism at 13 months old was stage dancing. As a mom you don't get to dream big for your child after the diagnosis. You never think you chid will be able to do what typical kids get to do. This is why this moment was so emotional for me. It is a moment that will stay with me forever. After the first day of his performances were over I think every person who watched him in the audience came up to him and said how amazing he did. It just warmed my heart. I had moms coming up to me with tears in their eyes after watching him. He truly touched every single person in the audience. He proved that even with autism he can do anything. I didn't get to watch him at the recital other than a side view which I couldn't see his face so I am egerly waiting for the recital dvd to arrive. Here is some video of him on the practice days.

In the middle of April started taking swim lessons. We started him in the ISR (infant survival rescue) program. He goes to swim 5 days a week for only 10 minutes. It is supposed to last 6 to 8 weeks. The first day in the water he just goes in with no fear and holds his breath and breaths out his nose like he had done this before. But this was the first time. He has always had floaty's on when he was in the water. The weeks continued and he was catching on so fast to swimming. At about week 5 and 6 he began to struggle a little. He just wanted to swim, he didn't want to do what was asked of him. I really struggled to communicate what he needed to do. But after just talking with him as much as I could it all finally clicked. He finished the program in 7 weeks and is fully swimming on his own. This program is absolutely amazing and I recommend it for everyone. He once a again was able to do what the typical kids were doing. The water has always been very calming for him but it was also an unsafe place because he had no fear. But now I can have some peace of mind and know that he can swim and enjoy himself.

          Brendan is now one of the most social little 4 year olds. He will say hi to everyone in the room and he will continue to say hi to you until you answer him. He will say thank you when someone compliments him most of the time as well as he says your welcome. He always wants to play make believe like doctor, house, school and babies. I love that he will play all of these things with his sister.   Everyday he is making so much progress. I am not even sure if I have really grasped all of this. This is all proof of why getting early intervention is so important.

3 Year Anniversary of getting his Autism Diagnosis-Brendan 4 years old

I honestly can't believe it has been 3 years since Brendan got his autism diagnosis. He has worked so hard over the last 3 years and he has made more progress than anyone ever expected. He has the most amazing team of therapist. They truly are the dream team. They are all family to us and mean so much to our family. Here is look at how much progress he has made over the last 3 years!

Brendan is No Longer Considered Non Verbal- November progress (3.5 years old)

        I have been dreaming about this moment. The moment that I can say Brendan is no longer non verbal! What I mean by that is to most people he is still non verbal but to me he is trying to talk and he is getting better everyday. At 3.5 years old he will say a couple spontaneous phrases. Maybe only 1 or 2 of them are completely clear but the others still need some work. I can understand him but other people have a hard time. Not only he is making HUGE progress verbally but he is giving eye contact so much more and engaging with others. He is starting to understand the world around him and for me as a mom watching this happen is one of the most incredible feelings. Like any toddler his favorite word is "no", but then I can say to him, "I love you Brendan" and he says back "love you momma". I can listen to him say that all day long! You can hand him something and he will always say, "thank you". Now when someone sneezes he says "bless you". He loves to tell everyone to "follow me" and "play with me". He now prefers to have someone play with him all the time which again was a huge goal. He is loving to play games! He is so good at Candy-land. He loves to play red light green light, duck duck goose and what time is it Mr. Fox.

         Halloween was a huge success! He did so good walking to each house with his sister and his cousin. He would say, "trick or treat" to almost every house. I did realize that he doesn't have any fear of scary things. Anytime we would see a scary costume or haunted house he would start laughing while the other kids were terrified. Brendan dressed up as Bert from Mary Poppins. His sister was Mary Poppins and his two dogs dressed up as penguins. We made their costumes for them so it was extra special to watch them loving the costumes. Even though Brendan can't eat any of the candy it didn't seem to bother him at all. He still had a great time.

We got to do our second filming of the autism documentary that Brendan is a part of. It had been 5 months since they first came to film Brendan. He has made so much progress in the last 5 months so it was so fun to watch him interact and actually give directions. He is obsessed with the go pro. He wanted to take it and be the person filming everyone. He is in the stage of being a toddler where he wants to be in control of everything. He definitely showed off for the camera. This is going to be filmed over a couple year period and I am so thankful that Brendan is part of this. I can't wait to watch all the progress he has made over the next couple of years. He is going to be proof that Early Intervention works!

         Anytime Brendan starts to make progress in one area we always have the issue with him losing a skill. So as exciting as it is for him to be making progress with his language he has taken a step back with his feeding. If any of you know Brendan you know that he is obsessed with his hot dogs. He can eat them all day long and be happy. But out of the blue one day last month he just decided he didn't like or want to eat them anymore. I thought ok so maybe just for a couple of days it would last but we went 3.5 weeks with him not wanting to eat them. I started to freak out because he only has 4 things of meals that he rotates so this now means he had only 3 things to eat. I am so thankful he has the genetics on his side because he is so big for his age. But yesterday he finally ate a hot dog so fingers crossed that he will continue to eat them. Feeding is such an emotional rollercoaster for me. I am at the point that I feel like I just want to leave the feeding issue alone and just let him eat his 4 things. Anytime we try to work in a new food during feeding it somehow back fires and he looses a current food. Then his sleeping has been horrible lately. He just keeps waking up so many times a night. He will wake up and fall back asleep pretty fast but its still exhausting for him and us. He just seems to go in phases with his sleep. I am hoping this pattern of waking up is almost over.

       Brendan has been doing really good with outings. I took him to see the movie Charlie Brown and he sat with me and did amazing the entire movie. This was his first time going to a regular movie and not a sensory movie. He also came with me to get my nails done and he actually wanted to sit in the chair like me and get his nails done. I couldn't believe it, he was letting her file and buff his nails. When I try and trim his nails at home its world war for me. He has been doing great at the grocery store for me. He loves to help put the groceries on the checkout scanner. But we have had some run away moments as well on outings. He still doesn't understand the concept of danger. This is something we work on all the time.
           I am so thankful for Brendan's team of therapist and doctors! He truly has the most amazing team! They are an extended part of our family and I couldn't be more grateful for all the hard work they do everyday.
                                       I want to wish everyone a Happy Thanksgiving!

Brendan turns 3 years old - May 2nd, 2015

     
      Today is May 2nd and my beautiful baby boy turns 3 years old. I have been actually hoping this day didn't come because it is so bitter sweet for me. All week I have been reflecting on this past year. I sat down and read some old blog posts I wrote from last year and I really can't believe how fast this year flew by. Brendan doesn't look like a baby anymore. He looks so grown up and so BIG! Yes he is tall and just so solid for his age which I think makes him look older. I am having a hard time carrying him around especially when I have to carry him up our stairs, lol.
              Most parents when their kids have a birthday they might get a little emotional knowing their getting older as I do when Haley has a birthday. But for me having a child with autism makes turning a year older extremely depressing. Any autism mom that reads this will understand and relate. For me Brendan turning 3 means he is expected to have so much more developmental growth. Which on paper or when he gets tested so many more skills are add that he can't do. So it is just an age but its more than just an age for me. When people would ask me how old he was I always say just 2. I never said 2.5 or almost 3 because then more questions could or would come. At 2 years old I felt like it was a nice safe zone. The only really thing was people would say is he talking or when we are at the store people would ask him his name. But it was easy to kind of take the conversation a different direction. But already I encounter what I know is going to happen all the time. I recently ran into two moms that we used to go to Gymboree with. Its been almost a year since we saw them and the first things they ask and talk about is what preschool is he going into this fall? How is potty training going? So I just came right out and said well, "Brendan has autism so we are holding him back a year so he will not start school until next year. And potty training isn't even on my radar. And btw he is sitting in a highchair watching his iPad here at Peter Piper Pizza because he hates crowds and loud places so this is the only thing that keeps him somewhat calm." You all know me I am 100% open about Brendan having autism and I will everyone if I could. But it isn't that in these situations it is more of having to be reminded that your child is far behind and different. Man it makes me cry just writing about it. This is a pain that will never go away or ever get easier. Every year on my kids birthday I write a letter to them so here is my letter to Brendan!

 Dear Brendan,
      How is it that you are already 3 years old. It feels like yesterday when I was planning your 2nd birthday. Just a minute ago we were celebrating you waiving, clapping, saying momma and learning to jump.  You are 100% FEARLESS. I knew I would regret you learning to jump. You jump and climb from anything and everything. We have had to bolt every single piece of furniture to the walls to keep you safe. You have never had a day where you didn't have 10 plus bruises on your little body from all your stunts around the house. You have definitely learned how to push all the boundaries. But this is part of your personality that has developed the most in the past year and I want to embrace it but I also want to keep you safe.
      But the thing you love the most is just getting to be a kid and explore. You love numbers and letters so much. You know how to count backwards which almost made me fall out of my chair when I heard you. When we go to target or the grocery store your favorite thing is to look around and find and say every letter or number you see. It puts a big smile on your face. You love playing with legos, airplanes, cars and trains. You have also finally learned to like your strider bike. You love going in the front yard and riding around following your sister around the court. You love to watch strange youtube videos of kids or cartoons speaking in other languages. I swear you know what they are all saying. It is pretty fun to watch you interact with all of your videos you watch.
     The best part for me this year was you getting and learning how to use your communicative device. It allows you to use your voice. Your voice may not actually be heard or say anything but you are able to use your device as your voice. However along with your device you have learned what the word "no" is. So if you don't want to do something you either say "no" or "all done". I think the device is starting to allow you to be more independent. Just the other day you wanted to stand in the bathroom and brush your own teeth. I stood there and cried watching you. Moments like this are so precious because you have worked so hard to understand everyday things we do.
       The biggest change you have made this year is your social skills! OMG it is so amazing how you will come and greet everyone who walks in our house. You say :"hi" and wave and look at them in the eye!! You are wanting to play side by side with other kids, you are learning to share so good. But also your pretend play is just incredible. You are playing appropriate with almost every toy. I watched you take a baby doll and try and swaddle her in a blanket and then hold her cradled in your arms, Once again tears flowed down my face.
     The thing about you that hasn't changed is your excitement over everyday things. You have a laugh that is contagious a smile that warms my heart and just a pure joy about life. I sit and watch you everyday and see what an incredible smart and fun little boy you are. If everyone could be half has happy as you, the world would be a better place.
        No matter how hard the week was, or how hard the year's been for us, you always put a smile on my face. You and Haley are the reason I can get through the tough times. You both are my motivation for everything. I'm grateful everyday of my life for this amazing, perfect little boy we created. Thank you for pushing me to be the best mom I can for you! You have touched so many lives and when you are older I can't wait to share all the stories of other families that you have allowed us to help.

Happy 3rd Birthday Monster!
We love you so much!

Love,
Mom

        

The signs of how I knew my Son had Autism before the age of 10 months old

  The one question I get asked all the time is how did I know that my son had autism at such an early age. I know I have shared in my first original blog post our experience of when Brendan first got his diagnosis but I just want to give a more detailed post of all the early signs when I knew something just wasn't right.
     The very first week of life when Brendan came home from the hospital he had what I thought was colic. He seemed to always just cry and not much would sooth him. During the first couple weeks he was extremely constipated because he went almost 2 weeks without a bowel movement. I tried the grape juice, prune juice gas drops nothing was working. We then we tried the dark Karo syrup in each of his bottles. That definitely seemed to work to get things moving. But he still seemed extremely uncomfortable and still had the colic. I was extremely concerned with the amount of Karo syrup I had to put in each bottle for him to have a bowel movement. This stuff was just pure sugar. A couple months have gone by and the Karo syrup was starting to not work anyone. We then proceed to try every single kind of formula that we could buy. That seemed to just make things worse for him. Some of the formulas like the soy based definitely made him extremely sick. Other formulas would give him horrible diarrhea. Then he started to get these horrible body rashes, so then we were referred to a gastroenterologist at Phoenix Children's Hospital. Brendan was now almost 5 months old. As sick as he was the first couple months he still some how was gaining weight. His doctors honestly couldn't even believe his size considering he couldn't tolerate any of the formulas. His GI doctor had decided to put him on a prescription formula called Neocate. It was free of the seven major food groups, soy, dairy, eggs, gluten, peanuts, shellfish, and wheat. Well that was a game changer for us. Brendan finally seemed to be colic free and just seemed to be a happier baby without any reactions. The first couple months of his life just seemed like one big blur to me. But now he was 5 months and we finally had a formula that agreed with his body.

        I could now function and enjoy my baby because he wasn't always crying. But then he faced another medical issue. He was born with a pretty awkward shaped head so at 5.5 months he was fitted for a helmet to reshape his head and to help his torticollis that he was diagnosed with. So we now were trying to adjust to wearing a helmet for 22 hours a day. He actual did very well adjusting to the helmet. He ended up needing a second helmet because it wasn't corrected with just the one. So he wore both helmets for a total of 6 months from 6-12 months.

     If so far he hadn't overcome enough hurdles he was faced with another medical issue. When he was born he had what was called a Chordee. This was a congenital condition resulting from abnormal development of the penis. We found this out shortly after birth, but they didn't want to do the surgery until he was 6 months old. So at 7 months old he went in for surgery and had the chordee repair done. The surgery took about 3 hours and within 2 weeks or so he was healed and back to normal.
    During all this time he had started to fall behind in his milestones. My first thoughts were well his helmet was holding him back from sitting up, rolling over and other milestones that he should have reached by 6-7 months old. So I just started to pay really close attention to him. As a couple months passed I started to notice a lot more "Strange" characteristics. I started to take notes and write down anything that I thought was not really normal for babies to do. I had decided to not even tell my husband about any of the concerns I started to have. I also started to video him on top of taking notes because I thought when I do tell my husband I can show him video of the things I was talking about. By the time Brendan was 9 months old my list of concerns had seemed to become significantly large. Here are just a few of them:
-never makes eye contact with anybody
-always rotates hands and feet
-doesn't talk or babble just makes moaning sounds
-does not respond to his name
-will not self feed
-rejects all foods solid or pureed
-doesn't clap or wave
-isn"t crawling
-will not cuddle or let you hold him
-always tenses his legs and arms
-hates when his hands & fingers are touched
(please see photo below of my full list)

     I had started to google some of the concerns on my list and "autism" seemed to keep coming up. I had come across a self assessment test that I could take that would tell you if your child was on the spectrum. I took the test and my results told me that my child was on the severe end of the autism spectrum. I honestly couldn't even believe what I was reading. I kept thinking he is to young and there is no way he has autism at 9 months old. I continued to google and research everything about autism. I was reading that a lot of kids with autism have GI gut issues just like Brendan was having. Also his head and penis issues started to make me think that those also played a part in the autism clue's. Those things just weren't developed all the way along with his gut not being fully developed.  So many things started to make sense. Well my nightmare started to seem like more of a reality. It was time I told my husband. I was so scared to tell him because I thought he is going to be mad that I have kept this to myself for the last couple months. I sat my husband down and showed him the videos I had taken and then showed him my list of concerns. He was pretty quite and didn't say much other than lets not jump to conclusions or assume anything. He suggested that we make an appointment with his pediatrician and discuss our concerns with her. Over the next couple days my husband started to pay more attention to Brendan and watched him closely. He came to me and was extremely upset because he couldn't believe that he hadn't noticed these things like I did and now he was seeing all the concerns I was talking about after our talk. My husband works two jobs to support us so honestly there is no way he would have seen the things I was seeing.

     The following week we went to see his pediatrician. As we were headed to her office I had told my husband that if she thinks I am just a crazy over protected parent then we were going somewhere else for a second opinion. We sat down with his pediatrician and showed her the videos and went over the list I had made of my concerns. Brendan wasn't having a very good day but I guess that was a good thing so she could see him this way. Well once again my nightmare was becoming a reality. She told us that she definitely thought he was showing a lot of signs of having autism. She then referred us to a developmental pediatrician because they are the ones that can give the diagnoses.

     We were referred to the Melmed Center but unfortunately there was a 6 month wait list to see any doctor there. But they told us because Brendan was only 9 months old that they would move us to the front of the wait list and when they would get a cancellation they would call us first. Just a couple weeks later on March 12th 2013 at noon I got the call saying they had a cancellation at 1:30 that day. Of course I said we will be there. My anxiety and nerves started taking over. I was so scared because I knew my life was about to change. We meet with the doctor and did a lot of just answering questions that she asked us. After we did that she did an evaluation on Brendan. She also agreed that Brendan was showing all the signs of having autism. So because he was only 10 months old his doctor wanted to give him the "at risk of autism diagnosis". She wanted us to start him in therapy right away for the next 3 months. Over the next 3 months Brendan received speech, occupational therapy, feeding therapy and physical therapy. Well unfortunately he seemed to be getting worse and not better. We went back to the Melmed Center for our 3 month check up. Brendan was now 13 months old and his doctor now felt comfortable with giving him "Autism Spectrum Disorder" diagnosis. Even though I knew this was coming hearing those words coming out of your doctors mouth was absolutly the worst feeling I have ever gone through so far in my life. There really isn't any words to explain the feeling I felt at that moment. But what I did know is that I was going to do everything I could to make sure my son was getting all the help he could get. From that moment I have been his voice and I have had to do so much fighting but he is now almost 3 years old and he has been getting 46 hours of therapy a week for almost the last 2 years. He has made such incredible progress but he still has a long road ahead of him. The best advice I can give any parent is always listen to your gut and be the loudest voice for your child! Happy Autism Awareness month! 

From birth to 15 months

          In September of 2011 I found out I was pregnant with baby #2. The emotion and fear was overwhelming. Having to go through what I went through to have my daughter really scared me to have any more kids. My daughter was born 9 weeks early and I spent 2 months in the hospital on bed rest prior to her coming. But I can now say she is 6 years old and hasn't had any problems from being a preemie. Since I had so many complications with her as soon as my doctor found out I was pregnant again she immediately sent me to a high risk obgyn.
           So far so good in the first 14 weeks of pregnancy except the part when I found out I was having a boy. I am such a girlie girl that having a boy really scared me. But I was up for the challenge. However right about 15 weeks I started to have some small contractions. At 16 weeks I went into surgery and had my cervix sewed to keep him in. Then at 18 weeks I started to get progesterone shots to keep me from having contractions. I would go in to the doctors every week to get the shots. They seemed to be working and he was growing right on schedule. At about 32 weeks I started to have a lot of pelvic pain. So I was put on very limited activity. Well right at 35 weeks he decided that he was ready to come and he broke through my stitches. I would have to say that it was the most painful thing I have experienced. The doctor really wanted me to get to 36 weeks to insure he didn't have any complication. They went and gave me a set of steroid shots to help his lungs mature. I was now put on complete bed rest for the next week. Well it worked and we made it to 36 weeks. We had a scheduled c -section on the morning of May 2, 2012. At about 7:47am we welcomed a healthily baby boy named Brendan John Schroeder. He was 6lbs 3oz 20 inches and was just perfect. He looked just like his sister Haley. Bright blue eyes and fuzzy blonde hair. During the c-section however my bladder had seemed to move and was cut during the c section. So they had to repair my bladder which meant we had to stay at the hospital for a couple extra days so I could heal. From the moment Brendan arrived he decided that sleep was over rated. He would only fall asleep if I was holding him. So that's what I did while we were in the hospital. The joy of leaving the hospital and coming home to now a family of 4 was a moment that I can't describe. My two kids were perfect. I had no idea what to expect with having two kids.

                   Within the first couple days of Brendan being at home he started to cry all the time. He seemed to have colic. He didn't want to sleep for very long and he would just cry and cry and cry. He hated to be swaddled or have any kind of blanket on him. He was the happiest when someone was holding him. Then we started to figure out that he was having some tummy problems. He would go up to two weeks without pooping. You could tell his stomach hurt because he would arch his back and just scream. His pediatrician had us try pear juice and prune juice. Well neither of those were working. She then had us try putting karo syrup in every bottle. Well that did seem to help him for awhile. At about 3.5 months old the karo syrup stopped working. He now would go from being constipated for a week to having horrible diarrhea. Then out of now where he started to get a rash break out all over him. It was awful, I felt so bad for him. You could just tell he was miserable. This would explain all the non stop crying he did. The next thing the pediatrician did was change his
formula. Well for the next 1.5 months we proceeded to try every formula there was to try. Nothing
was helping him. His pediatrician then sent us to Phoenix's Children's hospital to see a gastroenterologist. He decided to put Brendan on a prescription formula called Neocate. It was free of gluten, soy, dairy, eggs, and peanuts. Well after just a couple of days on this formula he was feeling much better. The skin rash went away and his bowels became normal.

                           The first 5 months of his life I was so consumed with his stomach issues that I wasn't able to just enjoy him. I was also completely sleep deprived. He would take extremely short naps and would wake up every 2 hours just crying through the night. Once his tummy got better at 5 months he was a much happier baby. This is when I started to notice when things just didn't seem right with him. He had extremely strange characteristics and behaviors. He would sit in his high chair and twirl his hands and feet non stop. He would then get excited when he was watching Mickey Mouse and make these strange grunting noises. Then it got to the point that he would only smile or get excited when he was watching Mickey Mouse. Watching a baby at 5 months getting so engaged with Mickey Mouse on tv I thought was quit strange. He wouldn't make eye contact with anyone. A new person could walk in the room and he would never even look up or even know who was coming in or out. I started to get a gut feeling something was off. I then began to video tape him and write down all the things I thought were weird that he would do. At this time I didn't say anything to anybody about my weird feelings. Not even my husband. We then began to introduce oatmeal cereal but he then had a reaction with skin rash and diarrhea. So we tried rice cereal and had the same reaction. His reactions to everything he was eating was really starting to scare me. I would read other mom's stories about how difficult life was with a child having so many food allergies. The kids experienced a lot of bullying and the whole family would be affected by it. During the next couple months I would keep daily food logs of everything that went into his mouth. This was the only way we could figure out what he was having reactions too. But somehow he was gaining weight. He has the Schroeder jeans for sure. The Schroeder babies were all big babies. At 5 months he weighed 20lbs.
         

                  
                           From 6-9.5 months Brendan wasn't hitting any of the milestones he should of been. He didn't roll over until 7 months. He didn't sit up on his own until about 9 months and he wasn't holding his own bottle yet. He wasn't crawling or even babbling. His hand and feet twirling started to get worse and his obsession for Mickey Mouse also started to get worse. He then started to show all strange signs. He would look up to the kitchen lights if they were off and refuse for you to feed him until you would turn them on. He would scream every time we would got into the car, which I couldn't ever figure out because at home the only way he would sleep was if he was swinging in the swing. So he clearly liked the motion. He then would completely freak out if you touched his hands. If you tried to hold his hands he would immediately release them. Any different texture of taste you would put in his mouth would make him freak out and throw up. Now I know babies make faces and sometimes gag on new foods but he would take it to a whole nether level. When he would attempt to play with his toys he would just turn them over and around and look for any hole or screw he could play with. Then the biggest thing that he wouldn't do is respond to his name. I would sit right next to him and call his name and he wouldn't even flinch or ever even take his eyes off what he was doing. He didn't have any stranger fear. He would go with anybody because he wouldn't even look at them to know if he knew them or not. After I had been documenting all of these characteristics I started to do some research. Everything I would look up or search and it would give me the same answer each time. I came across a self assessment test that I took which had so many questions just like all of my concerns. The score of my test would explain it all and give me an answer that no parent wants think about. At this time I figured it was time to tell my husband my suspicions. As I explain to my husband that I think Brendan has some really strange characteristics he began to look somewhat puzzled. My husband works so much so he isn't around most of the time so I wouldn't have expected him to notice some of the things I did. I told him just watch him in the next couple days and see if you think I am right or just crazy. He then paid close attention to him and couldn't believe that he didn't pick up any of the signs prior to me tell him. We sat down together after the kids had went to bed and discussed what we think we should do. I then started to show him all of the research that I had been doing. I then began to cry uncontrollable, I said to him I think Brendan might have Autism Spectrum Disorder. He sat their in silence and said I think you might be right but we should take him the pediatrician before we jump to any conclusions.

                                          Brendan not responding to his name at 9 months

                                          Brendan twirling his hands and feet 8.5 months

                      Right at 10 months we had an appointment with his doctor. I was terrified walking into this appointment. I had said to Brian that if she thinks I am just a crazy mom that we will go see a second opinion. But at the same time I was kind of hoping that she would call me crazy and tell me that he isn't autistic. I started by explaining to her all of my concerns with him not meeting milestones and then all of his strange characteristics. I then began to show her lots of video from 5 months of him. I read off my list of concerns as well. She then began to observe him and do her own assessment. She looked at me and said I think he is definitely showing all signs of autism. Has I started to cry she said to me, I have to tell you that you being so in tuned with your son will hopefully give him the oddest of being high functioning when he is older. she said I wish more moms would face their kids faults head on like you because so many kids would have had a diagnoses early on. She then would refer us to a developmental special doctor at the Melmed Center. They were a center that specialized in autism. I had called to make is appointment and they old me it was going to be about 3.5 months before we could get in. But because he was only 10 months old he would get moved to the top of the cancellation list. We are in a curial age for development so they get the younger kids in as fast as they can. Sure enough about 2 weeks later I got a call at 12 in the afternoon letting me know they had a cancellation at 2pm later that day. I said we will be there. I called my husband at work and told him he needed to meet me their. The anxiety and nerves kicked into full swing.
               As we arrived at the Melmed Center I looked around at the kids in the waiting room. They all looked normal to me. Then I noticed that we were the ones that were getting the stares. I would imagine it was because Brendan was so little and most of these kids were about 3-7 years old. It was our turn to go back with the doctor. I then began to explain everything just the way I did with his pediatrician. I also had to explain all of the stomach GI issues he was having and going through. She then began to ask Brian and I a lot of questions. After that she observed Brendan. Then she started to confirm our fears. The next couple words to come out of her mouth would then change our life forever. She said there isn't a doubt that he is on the autism spectrum. He definitely fits everything that an autistic child is. At that time I felt my body just go weak. She also then began to tell me that so many parents are in denial about the strange characteristics that their children have and that is why most kids don't get diagnosed until 3-6 years of age. She said it takes a teacher or someone else to point out to the parent that there child just isn't normal. Even though most parents are aware of it they are scared to find out that something might be different with their kid. So she said that Brian and I are doing the best thing for him and getting the help he needs early. Early intervention is the best thing a child could get. Now she would explain to us the next steps. The diagnoses becomes a little tricky. His doctor wasn't ready to give him the label of autism yet but we would proceed with the therapy as if he did get the label. The doctor said I want you to get therapy for the next 3 months and if we don't see any progress then he would get his official diagnoses. He would need to get 8-10 hours a week of speech therapy, occupational therapy, physical therapy and feeding therapy. At that time thinking of that much therapy for a 10 month old was extremely overwhelming. I wasn't sure how we were going to do all of this. As we were finishing the appointment with his doctor I immediately shut down. Brian and I went into the grieving stage. We were grieving the fact that our son may never go to a normal school, play on a sports team or ever get married and experience having his own kids. All anybody wants is to have kids that are excepted and liked. After we started to processes all of this it was time to let our family know. Our family took news pretty hard. They also all went through a grieving period. What surprised me the most from our family is they said, "well he looks normal." It's surprising how little most people know about autism. We then began to educate our family on autism, as well as educating ourselves on treatment plans.     
                                 Now I would go into high speed motion to make sure I get my son the help he needs. Well there was only one problem, we found out that our insurance doesn't cover autism. This wasn't going to stop us. Our family came together and everyone helped get his therapy started.  He first began to get all of his evaluations done by each separate therapist. It was scary looking at the evaluations because he truly was scoring at a 3 to 6 month level child. All of the feed back I was getting from the therapist was that we were doing the right thing by getting early intervention.  
                                  So he is now 11.5 months and is in fully intense therapy 8 hours a week. I attend all therapy classes with him. I am in there to learn what each therapist is doing so I can continue to work on things at home. He is not enjoying therapy at all. It breaks my heart to watch and listen to him scream. He is such a free spirited little boy that when you make him do something he just shuts it down. He has now figured out how to crawl at 11.5 months so he is doing lots of exploring. The physical therapy is in full motion for him to get to the next step which is walking. Speech and feeding therapy are his least favorite. His therapist is really working hard on him learning how to feed himself. Normal babies at this age can self feed. He still can't even hold his own bottle and he seems to get super frustrated. His speech therapist has us working really hard on his tongue because he doesn't move his tongue from side to side. We have purchase lots of vibrating toys that he can chew on plus soft toothbrushes he can chew on. She is also helping us with getting him to eat different textures in his mouth. Which this all plays into his sensory issues. This is where occupational therapy comes in. His OT therapist really gets him to try and focus on a toy and tries to get him to make eye contact. Getting him to sit longer than 5 seconds seems like an impossible task. After the first couple weeks of therapy I was mentally exhausted. Each therapist is flooding me with so much information at each session that I became so overwhelmed. I was also trying to get a hang of balancing life with work, and then Haley's schedule. Brendan and I now live in our car. We are constantly on the go. It makes me feel so bad because he is in so much therapy that he isn't getting to be just a baby. 
                                   We have now reached his 1st birthday and he has made some huge progress, so I think. He has learned to walk, he has learned to hold his own bottle. Which the moment he held his own bottle to feed himself I completely broke down into tears. I was such a proud mom. You really don't realize how important the small things are to his progress. He seemed to be getting better at making eye contact at least with me. Unfortunately I have learned that when children with autism take 2 steps forward they usually take 10 steps back on things they once had accomplished before. I am just learning that this is going to be an emotional roller coaster of a ride. I really want to get excited about some of the things he has accomplished but it is so hard to because he may loose it after a short time. Now that he is walking he has began to walk on tippy toes. Apparently walking on his tippy toes is from his sensory issues. Its extremely common with autistic kids.  He has also started taking a gymboree class once a week. His doctor has suggested that he is around kids his own age. He loves just running around and climbing on everything. He is all boy when it comes to climbing. But it is so hard to watch him at gymboree because he doesn't interact with any kids. If you just watched him during the class he acts like everybody else in the room is invisible. He will walk into other kids and push them out of the way again like they are invisible. I know the other parents are looking at me and thinking my child is way to wild and I have no control over him. But I have come to learn really quick that what other people think of child can not bother me. 
   

                              
    We have now been in therapy for 1.5 months and kinda just hit a wall. He was doing so good the first  month and now we are really back to square one with his eye contact, sensory progress and now we have added other issues to the list. However in the physical part he has progressed like crazy. He is running, climbing jumping on everything.  How is it possible that just a month and a half a ago he had just starting crawling and now he is a wild man. We have also made some progress with his eating and food allergies. He hasn't had any reactions because we have kept him on a gluten free, dairy free, soy free, egg free, peanut free, tomato free diet. His food issue alone has really put so much stress on our family. Now at 13 months it was time to go back to his doctor at the melmed center for his 3 month follow up. It was Brian's birthday so I told him he didn't need to come with me to the appointment. The day of his appointment was not a good day. Brendan was in an extremely bad mood and wouldn't listen or cooperate at all. I didn't know if this was a good thing for the doctor to see or a bad thing. Well getting an appointment with this doctor is extremely hard and a long wait so off we went to see the doctor. I guess I really didn't know what to expect from this appointment other than maybe she would say just continue doing what we were doing with the therapy. Well I was wrong! She began by observing him for a bit and then she started to ask Haley a bunch of questions. She ask her questions like, does your brother play with you? does your brother bring a toy to you to play with? does your brother point to anything he might want or to show you? does your brother hug or give you kisses? does your brother wave hi or bye to you? Does he laugh or smile or clap his hands at anything that might get him excited? After each question Haley would answered no. It broke my heart. The doctor would now explain to me that he would be getting his label and official diagnoses of autism. I already knew he was autistic but getting that official label just crushed me. As I sit in the doctors office I did everything I could to not cry. I didn't want Haley to see me get upset. Now that he has his official diagnoses she would like him to start a program called ABA therapy. I had no idea what aba was. She then told me that he would need 25 hours of week of ABA therapy plus she wants him to continue the 8-10 hours we are currently doing. She said that aba therapy is what he will need if he has any chance of being a high function child. Then she said that I would need to get state medicare/altec funding in order to pay for the aba therapy. Well I just said to her that I had gotten a denial letter from the state saying he wasn't medically qualify. The letter stated that he needed to be in a nursing home state of medical need for him to get state funding. Which is just crazy that the state would like my son to basically be a vegetable before we can get help. Then she said well its not going to be easy but you will need to fight to get him in. I told her that my insurance doesn't cover autism so we are already paying out of pocket for all of his current therapy which is soooo expensive. She says well aba therapy is $50,000-$60,000 a year. I explained well if we don't get state help then there is no way we can afford that on top of the $30,000-$40,000 we will pay a year for the private therapy we are currently doing. This is when I couldn't hold back the tears. It is just not fare that these children with autism are treated any different in the states eyes then the kids with other mental problems. The appointment was over and we got in the car and I just broke down into tears.  I couldn't call Brian and tell him what had happened because this would completely ruin his birthday. We had plans to go out to dinner for his birthday so I made the decision to tell him that night after the kids went to bed. When we got home Haley started to ask a lot of questions about what was wrong with her brother. She was really listening to the doctor but just couldn't understand what she was talking about. So not being prepared at all to tell her, I just explained that god made your brothers brain different then mommy's, daddy's and hers. Brendan goes to therapy to help his brain and hopefully someday he can have a brain just like yours. I said that it makes mommy cry because I wish he was born with a normal brain. This was so hard to explain to her. As I continued to cry Haley was there giving me a huge hug telling it was going to be ok. I know someday when she starts to really understand autism she will be Brendan's biggest supporter.
                                  After the appointment at Melmed center I began to reapply for help through the state of Arizona. Now that we have the diagnoses I hope this might make it a little easier. So fingers crossed I started the process which last time it took about 3 months for the whole process. We also continued on with our daily therapy. Brendan had some great days at therapy and then had some days that were just not good. Going to therapy during the summer was hard because poor Haley had to sit with me everyday during his therapy. She was so good about it all and really never complained. 
                                Brendan has been on prescription formula(which insurance doesn't cover) since he was 5 months old. Well the brand is Neocate and they have a junior version of the formula for toddlers 12months and older. I had tried to switch Brendan to it when he was 12 months but he refused to drink it. They have 4 different flavors tropical, chocolate, vanilla and then unflavored. I had tried all 4 kinds but he just didn't like any of them. Now that he is 14.5 months he was doing much better at eating and trying new flavors, so I thought I would try to introduce it again. I first tried the chocolate but still he wasn't a fan of it. So then I tried the tropical and what do you know he loved it. So he had about 8 ounces of the tropical the first day. Well the next day he broke out into a rash all over and had really diarrhea. I was so confused why this was happening because that formula was made by the same company he was currently using. I called the company to find out if and what ingredients were different. The gentleman explained to me that there was only one ingredient in the tropical kind that was different and it was artificial flavoring. He said the unflavored kind doesn't have artificial flavoring. So we can now add artificial flavoring to his already crazy list of foods. He was scheduled to his GI doctor that same week so I explained to him his new reaction to artificial flavoring. This one really surprised him. I also let his doctor know that he really doesn't eat that much. His GI doctor told me that we need to extra thankful for his genes because if this was any normal child with his food allergies they would either have been hospitalized numerous times and would also have a feeding tube. Brendan is now 15 months and has only gained 5lbs in 10 months. So even though he still has alot of meat on his bones he has gotten to the point that he falling below in percent of monthly weight gain. His doctor explained to me that we need to get him to drink the junior formula because it has more calories. So we are slowly adding it to his bottles that have the infant formula in it. Then as much as he wants to get him off the bottle right now this is his only true source of nutrition. 
                                 Now that I have caught everyone up to what we are going through with Brendan this blog is going to be where we can share how he progressing. My goal is write once a week and give a current statues on what we are doing. In this experience so far I not found any other stories about a child being diagnosed with autism at such an early age. So I hope that I can reach out to other families and possible help them by getting their child diagnosed early. I am an open book and will share and answer anything anyone would like to know. Brian and I want to thank everyone so far who has been here to support us through this life changing experience.