Wednesday, November 25, 2015

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!


Thursday, October 15, 2015

Early Intervention is working, the Best Doctors Visit-Sept/Oct 2015-Brendan 3 years old

 

       I can't believe it is the middle of October already! I have so much to share with you. Brendan  goes to his developmental pediatrician doctor every 3 months for a routine check up. He goes to the Melmed Center where he has 2 doctors that he sees. He has Dr Melmed and Dr. PeBenito. So really he gets to see each of them every other time. This visit this time was with Dr PeBenito. We were the first appointment of the day at 7:45am. I always get such bad anxiety before these appointments because I never know how they are going go. Dr PeBenito opens the door and says Brendan I am ready for you. He hears her call his name so he gets up from playing with the office toys and grabs my hand and we walked up to the door and she says,"Hi Brendan". Brendan says, "hi"! We follow her to the exam room first. This is usually never a fun experience for Brendan. She asked Brendan to step up on the scale and he steps up without any hesitation. I was so shocked he did it without a fight or tears! She then asked him to stand against the wall to get his height measured. Then she said ok lets jump up on the table so I can look at your ears and listen to your heart. Well Brendan says,"NO". I told her he doesn't like the paper that is on the table you sit on. So she takes it off and what you know he jumps up for her. He lets her look in his ears and listen to heart. We are now done in the exam room so it is time go into her office. Brendan walks in and starts playing with her toys. She says, "Brendan what are you playing with"? He says, "dinosaur" (obviously in his language). She then says can you bring me the dinosaurs? He gets up and takes his 4 or 5 dinosaurs over to her at her desk. She asks him to count the dinosaurs. He counts out the 5 dinosaurs for her. Then without her saying anything he looks at her and says,"here you go" and hands her one of the dinosaurs to play with. At that moment she looks up at me with a GIANT smile on her face and says,"I am completly blown away with his progress. He greeted me, he answered the questions I asked him. He looked at me when I called his name and he interacted with me." She said he is proof that EARLY INTERVENTION works. She said the progress he has made even since the 6 months she had seen him last was just incredible. At that moment I wanted jump for joy. It was such an incredible moment to hear those words come from a doctor who treats kids like Brendan all day long. She said I can't wait for Dr. Melmed to see how much progress he has made! This was the best appointment we have ever had. We get in the car to leave and I start to break down and cry. I said to myself why is it every time I leave this place I cry? But this time I was crying tears of joy. All the hard work is starting to show. I was so incredibly proud of my son!
                          Brendan doing speech therapy
      This great news from his doctor couldn't come at a better time. Brendan has to work through some changes going on right now. His main habilitation therapist who spends 5-6 days a week with us just gave birth to a gorgeous baby boy, so we are going to miss her for the next 6-8 weeks. We do have someone filling in for her but she is only able to do just a couple hours a week. It is a bit of a change for me too, we actual have a little free time. I am just hoping he does ok with a little bit of a break. It would really crush me if had any regression.
      I am getting ready for our 3rd annual Autism Speaks Team Brendan walk next week. We are going to have a huge turn out and we are so grateful for everyone who is helping us spread awareness.
I am also getting ready for Halloween. This year I have joined the Allergy Associations campaign to go Teal. This is a for you to have a teal pumpkin visible which says you have a non food item to offer trick or treaters who have food allergies. As many of you know Brendan has close to 20 food items he is allergic to. So this means he can not have any kind of candy. It breaks my heart. He hasn't really learned that he can't eat candy because his sensory issues are what make him not eat the candy. But sooner or later it is going to effect him. We have put flyers all around our neighborhood and we have also tried to talk to neighbors. I hope they all jump on board this year! 

Saturday, August 15, 2015

Family Vacation Fun and the start of Soccer July/Aug 2015 (Brendan 3 years old)


  We had been counting down the days until it was time for our family vacation to San Diego. Getting ready for a vacation takes so much planning and preparation. You think as your kids get out of the baby stage that traveling gets easier but in Brendan's case I think it gets harder. We got up super early packed the car to the max and off we headed on our 6-8 hour car ride. Brendan was absolutely perfect on the drive there. He took a little nap and watched his My Little Pony movie about 4 times and he was happy as can be. We were headed to Mission Beach staying at the Hyatt. I called about 10 days before we arrived to speak to the hotel housekeeping manager. I explained Brendan's allergy to polyester and once again they blew me away with how much they will go out of there way to make sure we have the best experience. They said they would get us special sheets and clear the room of anything he could be allergic to. They offered to make sure we had 2 refrigerators and a microwave. I hung up the phone and started to cry. It is such an amazing feeling to have others care so much about your child's needs, it just overwhelmed me with emotion.


   We didn't have any plans on this trip other than spending a day at the San Diego zoo. We were just going to enjoy ourselves and relax. We live on such a crazy schedule everyday that we just wanted to do what we wanted when we wanted. Brendan had no problem adjusting to an new environment at the hotel. He just went with the flow of things which we all know even typical toddlers don't handle well. I have a girlfriend who lives near Mission Beach who was our little tour guide and gave us the best places to eat to beach at and helped with anything we needed. She was amazing! She told us about this little small beach where there wasn't any waves and the sand was pretty compacted so we thought we would take Brendan there to see if he can handle the sand and water. Last year he HATED the beach so I wasn't sure what was going to happen this year. He went to this beach and absolutely loved it. You would never know this kid had major sensory issues. He was even eating the sand. Crazy right..... We were excited to go to the beach on Mission. He LOVED the waves the sand and even tried to ride a budgie board. It was such an amazing moment for my husband and I to watch the joy in his face as he chased the waves.



       We went and spent half a day at the San Diego zoo. I was so excited to take Brendan there because he loves animals. However he wasn't a big fan of the zoo. I think because the animals are so close too you that it made him really nervous. He didn't want to get out of his stroller. He just looked from the stroller and that made him happy. My daughter Haley absolutely loved the zoo and how close all the animals were.

     Our hotel had the best pools and waterslides. The kids had so much fun going down the waterslides and swimming in the pool. This hotel is very kid friendly but also gives you a gorgeous view and relaxation for the adults. I highly recommend the Hyatt at Mission Bay! After 6 days of fun we were headed home. The kids also did great on the drive home. I have to brag and say that Brendan was such an angel on our trip. I couldn't of asked for 2 more perfect kids!

      Jumping back into therapy for Brendan was a little rough. He didn't want to work which I don't blame him. Even adults hate going back to work after vacation. It took him a couple days to get back into the routine. This summer Brendan really loved having his sister home, but summer was coming to an end and she was heading back to school. I actual think she was going to miss him more. I know I loved having her help with him this summer so I definitely was going to miss her.
    We decided to put Brendan into a soccer class to get him exposed to a structure type of environment with typical kids. He loves to kick the ball and he has just a natural sports ability so why not take advantage of it. The place is called B.E.S.T sports and they are great with letting special needs kids join the classes and they are also great with letting a therapist join. This is why we went there because not all places allow this. We arrived for the first class and Brendan seemed super excited and immediately started to run around and kick the ball. The class had started and coach was giving the kids instructions and Brendan just lost his mind. He is so used to being the leaded of his world that having to follow directions was not something he wanted to do. I watched for the first 4-5 minutes and then jumped in to help his therapist Sara (which is also 7 months pregnant) control him. So the rest of the class we had to tag team him. He was running, crying and just having melt down after melt down. He got so worked up that he drank water and then just threw up. Which he has never done.
                               Brendan's 1st soccer lesson

   Then week 2 of soccer he just walks in and is listening and watching the coach. Following directions for the most part and just being such a different kid than week one. He did get tired towards the end of class which brought out a couple melt downs, but over all he did amazing!. My favorite part is watching him at the end sit with all the kids get a stamp and just giggle. Sara and I had to hold back our tears.
                            Brendan's 2nd soccer lesson

    This week Brendan has started a new schedule of therapy. Now with school back his scheduled needed to be adjusted. So I think I am the one trying to get used to it. He used to get a couple breaks in his day but since he doesn't take naps he is working all day.
         Next weekend I have the opportunity to go on a girls trip for 4 days. I am so excited about it but nervous. My daughter Haley is 8 years old and I have never even spent more than 2 days away from her. So it is going to be hard for me leaving both kids but I know my husband will do great.
          I want to remind everyone to SAVE THE DATE for our 3rd annual Autism Speaks Team Brendan walk. It is on October 25th, 2015! You can register here:
http://www.walknowforautismspeaks.org/faf/donorReg/donorPle . . .

Tuesday, June 30, 2015

Long over due progress update from February to beginning of July 2015 - Brendan 3 years old

                                 
                  I have sat down to write an updated post about 15 different times and never seem to get it finished. Life in the Schroeder house has just been so crazy. Well it is always crazy but things just seemed to be extra hectic the last couple months. I want to start with all the great news. Brendan has been making so much progress in all different areas. He is becoming a lot more clearer when he tries and repeat language. He is so much more aware of his surroundings. He will greet you and say goodbye and the best part is his eye contact is just overall so much better. He will engage with other kids and not only play side by side with them but even want to play with them. He is finally sleeping better which is part of why I think he is doing really good during therapy. He is doing so great with listening to directions and he is even responding when his name is called. He has learned to use the words "yes" and "no" which is so great because you can kinda have a little mini conversation with him. Learning these words have definitely given him his voice. He is very specific on what he wants when he wants it. These words are so powerful for him. He is still a crazy little daredevil. He has no fear so you absolutely can not take your eyes off him at any time. He is always keeping me on my toes! All of this progress he has made is because of all the hard work he does everyday along with his amazing team of therapist. For the last 6 months I had finally found the best team of therapist for Brendan. I so believe this is why his progress has been so good. Unfortunately 2 of his therapist are no longer with us and trust me it wasn't my choice at all. I have been so devastated over this change but when you are working with the state they love to just give me challenge and challenge. I have been interviewing lots of new therapist but so far no luck. But thankful even though they are no longer his therapist we have built a personal relationship so they are checking in and helping when we need it.
                             This what he looks like after touching a cat

             Now here is the part I have been dreading writing, the update on his allergies. In the beginning of April we had a stray cat give birth to kittens in our backyard. So naturally we made sure the kittens went somewhere to be taking care of. I knew my daughter, husband and I were all allergic to cats so I needed to make sure they didn't stay here. Brendan had never been around a cat so I honestly didn't think to much about it. Brendan touched one of the kittens with just a little finger and that was it. Well his eyes turned so red and swollen, so there was my answer he is also super allergic to cats. I gave him some non dye benedrly which he has had in the past but this time it had seemed to bother his stomach. Days and weeks after his encounter with the cat he just couldn't seem to get rid of  his bed allergies. If anything I felt they were getting worse. I tried kids Clartin and Allergra he had REALY BAD reactions to those medications. I then tried Hylands natural allergy and he did better tolerating it but it didn't help his allergies at all. As his allergies were continuing to get worse he started to wake up with giant swollen eye lids. It was so strange and the poor little guy was just so miserable. After a couple hours of being up the swelling would go down but his eye's would stay pretty red. Then out of the blue mid to later afternoon he started to get a giant eye welt under his eyes. Both of the random puffy eyes lasted for a couple weeks. My heart was breaking for him everyday because I was trying to figure out what the cause of all this was. In the meantime he was just miserable because I couldn't find anything to help me. Well I soon narrowed down what could of been the cause for waking up with the puffy eyes. We had converted his crib a couple weeks prior to that and I bought him new sheets, comforter set to make the transition easier. So I decided to take all of that off his bed and just put back his old crib bedding. Well ever since I changed the bedding he never woke up again with any allergies. Ok so now what was the cause for the late afternoon eye welts. Well I had bought some new pillows that were on the couch. So I removed those and what do you know his allergies were GONE!!!! Ok so now I need to find out what the comforter and pillows were made out of. The giant tags that come on them of course were cut off so now to do some research. Well I found out that they both made of 100% polyester. So my thought was he is allergic to polyester?? That is the craziest thing ever. So then I started to look at all the tags on his clothes. Brendan is usually wearing the basketball type nylon short sets. Well all of those tags said 100% polyester. Ok so now I was so confused because his clothes were the nylon/silk feeling fabric and the comforter and pillows were that rougher more hard cotton feeling. Again I was so confused. I continued to just leave his clothes alone and just wait until he has his allergy appointment. The next week we went and saw his allergist and I explained everything and showed him pictures of what had been going on. He started to explain to me that original polyester is the fabric that feels like nylon and the way they get the fabric to change consistency is they use CHEMICALS! OMG he is allergic to the chemicals they use to change the fabric! Again the craziest thing I have ever heard of! But holy cow we just solved a GIANT mystery! His allergist said that this is such a rare thing. Well I think I have heard that more times in Brendan's 3 years of life so far. His doctor sent us to a speciality pharmacy to get some allergy medicine made without all the things he is allergic to. So if we have another situation of coming in contact with polyester or a cat we have something to give him for relief. But I have had to go through all his clothes and get rid of so much. Every single pair of pajamas he owned were polyester. It is such a giant pain but I will do anything to make sure he stays healthy! He has even gotten so sensitive to us cooking eggs in the house. His eyes turn red and almost black and blue underneath. We can no longer cook eggs in the house.


                  This is what his eyes were looking like before we removed all the polyester!

This is his current allergy list


This is his allergy doctor, Dr Hellmers!


            Last weekend we had a stay vacation and a week before we went I had to go to the hotel talk to the housekeeping manager and explain Brendan's issues with polyester. He couldn't be in a room with any trace of polyester. My thought when I was talking to them is they are going to tell me I am crazy that they just can't help us. But actual the opposite happened. We were staying at the Hyatt Gainey Ranch and they did everything above and beyond of what I could of imagined. They specially ordered sheets for both beds in our room. Had pillows, comforters removed and replaced with polyester free fabric. Gave us a microwave to make sure we could prepare all of Brendan's food! I mean checked on us too make sure he was doing good. They are just such a great hotel. It made our weekend and stay so relaxing because I didn't have to worry about anything. I am thankful in 2 weeks we are going to San Diego and we are staying at the Hyatt Mission Beach so I am hopeful they will be just as accommodating. I told my husband that it looks like when we vacation that the Hyatt will be our hotel of choice. Because if you stay anywhere else say a smaller hotel Brendan wouldn't be able to be in a room with polyester! Of course my husband says why not everything having to do with Brendan's needs costs a giant fortune.

      Brendan and I had the opportunity to be part of an autism documentary. I can't wait to share it with you after it is done! I will be doing a more detailed post when it is available to share!!
















Tuesday, June 16, 2015

2 year Anniversary of Brendan's Autism Diagnoses-Brendan 3 years old

     
       Here we are 2 years into this crazy journey called Autism. As I sit here and go through all the videos of Brendan's progress this pass year I get so emotional! He has made so much progress it is just absolutely unbelievable! He has worked so hard along with Brendan's amazing team of therapist. Everyone has played such a big part in his progress. Thank you to everyone who has continued to give our family support. Your support is what keeps us going! We love you all.


Saturday, May 2, 2015

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




        

Tuesday, March 31, 2015

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! 




Sunday, February 1, 2015

New Year, New Challenges & New Accomplishments (January 2015 update, Brendan 2.8 years old)

       
         I have attempted to sit down to write his January blog about 15 different times but somehow I never seem to start it. My life has always been busy since Brendan's diagnosed but somehow the last 2 months life has seemed to have gotten even busier. I get asked the question all the time from family and friends of how I can manage to do it all and usually my answer is, " I just get it done." But lately I feel like my head is just barely above water. So I apologize for being so behind in my blog updates.

       I don't even know where to start because I have so much to catch you all up on. Right before Christmas Brendan received his communication device which is an iPad mini. This has an app on it that allows him to tells us what he wants. It basically talks for him. As you all know he uses PECS(picture card system to communicate) so this is basically is his PECS cards now uploaded on to this device. This is an actual iPad mini and eventually he will be able to use it to play his games and youtube videos but right now he doesn't even know that it has the ability to do that. We are trying to transition him to this device. It has been an adjustment for me as well. I am still learning how it all works. This device is actually going to get him to use more language and hopefully someday we will not need it. My dream is someday he will talk! The state actually purchased the iPad mini and also purchased this very expensive Touch App for Brendan!

      Brendan has a huge love for Mickey Mouse and even bigger love for Minnie Mouse. I had seen that Disney on Ice was coming to town and I really wanted to take the kids to see it. But as it has been for so many other events that I have wanted to go to, I think to myself there is no way Brendan can go. He isn't able to sit on my lap. He doesn't even let me hold him, he is what we call a "flight risk" he runs and runs and runs and doesn't care who or what is in his way. But this time I thought I am going to see if there is any possible way I could make this happen to take the kids. I called US Airways arena and asked for the special needs/handicap supervisor. I explained my situation to her, I wanted to be able to keep Brendan in his stroller as if that would be the only way we could enjoy the show. However I was afraid that where the handicap sections were that there would be the bars in front of them and since his stroller is much lower than a wheelchair I just didn't think it would work. She was so sweet to me and talked me through all my options and was willing to help in anyway she could. She offered for us to come down to the arena with his stroller to test all the sections out. I thought perfect that is what we will do. Well she called me back about an hour later and said that they actually had front row seating as an handicap option. I was so excited because I knew if anything Haley would be so excited! So that is what I eneded up buying for us to go as a family and enjoy the show.  I picked a Friday morning show knowing that it would be less crowded and more than likely a lot of younger kids. I knew there was a chance that Brendan wouldn't be able to handle the show. So we took Haley out of school, Brian took the day off work and off we went to the show. We got personally escorted down to our seats through all the secret behind the scenes hallways. Haley was in heaven. We got their with just a couples minutes to spare. The show starts and with in 5 seconds Brendan starts crying. Lately he has been showing so much sensitivity to crowds, noise and lights. I try to calm him down but nothing was working. I get up and take his stroller into the tunnel area where the Suns players come out of. Thank you to all the staff who allowed us to stay back under the tunnel. As long as he was under the tunnel he was ok. He could see a little but not much. I sat on the concrete floor in front of him to make sure he stayed calm. Brian stayed in the seats with Haley so she could enjoy the show. The intermission came so I thought I would try this again. I went back to the seats while the lights were on but he then started to cry so back I went to sit on the freezing cold floor. lol. About 10 minutes into the second half I look over at him and he is completely sleeping! How he fell asleep with all noise is so crazy to me! Thank you to US Airways for helping us make memories with my kids. They were so great and easy to work with!
 This was our view from the tunnel!


       The following week Brendan needed to go down to the school district to get an evaluation. This was needed because he is in the state early intervention program, they require it gets done before they turn 3 years old. At 3 we have the option to put him into a developmental preschool with the public school system. However I had no intensions in putting him into school yet. We are actually applying for what is called an ESA(Empowerment Scholarship), which is a scholarship provided by the state for you to use toward any kind of private school. Your child has to have an IEP or an MET with the public school system in order for you to qualify. If you choose this scholarship then your child will not be able to attend public school only a private school. It can also be used for home schooling and some Aba therapy. This is what we are choosing to do for Brendan. We don't plan on enrolling him into school for at least another year. He is getting all there therapy he needs at home so there is no need to start school. So I needed the public school to evaluate him because that is what I had to turn in for my scholarship application. The evaluation lasted 3 hours and was super nerve racking. The part that was hard is that I had to keep quite about the scholarship he was applying for because the school system could of really messed everything up for me. So this was all super stressful for me. The evaluation report came back Preschool Severe Delayed and Speech Impairment. This was actually the worst diagnosis you could get at his age in the school district. The school district doesn't give your child an autism diagnoses until the age of 5. Which I know is stupid but that is the way the system is. Even though a developmental doctor has given him the diagnoses it is not accepted in the school district. But I got all the paperwork I needed for the scholarship so fingers crossed it all gets accepted.

      Just last week we had the pleasure of having Aaron Blocher-Rubin the CEO of AZA United which is where Brendan gets his 40 hours of habitation therapy with come and visit us at the house. He came during one of our monthly HAB M meetings. He wanted to video tape Brendan and observe him. I was excited for him to come and see how great he was doing. Well that morning Brendan was in kind of a funky mood. So I was keeping my fingers crossed that he would do good. Well that didn't happen. Brendan was a complete NIGHTMARE!!!! He had so many big melt downs while he was here and he just didn't want to do anything for us. So I was of course totally embarrassed. I know this wasn't the first time he has experienced this but still not something you want to happen to you. So the visit was a big disappointment.

     Overall Brendan is doing pretty good. We have encountered lots of new issues lately but this is all what being a parent to a child with autism is about. He continues to show improvements in other areas so that is all I can ask for. Brendan has such an amazing team of therapist. I am so lucky to have each and everyone of them! They invest so much time into him and they are always researching and thinking of ways to help him even on their own time.


     We are also lucky enough to have Brendan's story featured in North Phoenix Family Magazine in their February issue. They asked us to share his story and resources to help spread awareness to other families. This is my passion, I want other parents to get educated and know that they can get a diagnoses early! Thank you for letting us share our story. Here is the link to see our story http://northphoenixfamily.com