April Progress - Autism Awareness Month (Brendan 23 months)

                                                                 HAPPY EASTER!!!

       
  April is Autism Awareness month and I am honored to have so many family and friends who have helped spread awareness. We celebrated World Autism Day Light it up Blue on April 2nd. It was so fun to see everyone wearing their blue and team Brendan shirts. On April 6th we participated in Autism Society of Greater Phoenix Bowling Event. Team Brendan had about 50 people bowling! It was such a fun event. We had 3 different families on our team that won Lego Land tickets, gift baskets, Opera tickets, Suns tickets and more. We also had the Fountain Hills fire fighters who played for Team Brendan. We now have our 2 fundraisers a year that will be participating in the Autism Speaks Walk in October and Bowling in April. Thank you to everyone who donated money and supported us. We do this to spread awareness and educate people on Autism. I had my best friend who has 5 kids tell me that she loves how we embrace and educate everyone on Brendan's journey with autism. She said because of what we are doing her kids now know and accept people with autism and can tell others about it. Those words mean so much to me. That is why we are doing this.

                Brendan has had a rocky couple of weeks. He has had some good days and some bad. He has been having a lot of sensory issues which reflects his learning. He wants to swing outside all day. The movement of the swing really calms him. He also has been hanging out in his very small tight spots. He seeks that pressure and loves to be smushed. He has also gotten SUPER attached to me. Which don't get me wrong I love but it has gotten pretty bad. He won't let Brian or his therapist do things for him, he only wants me. If he wants a snack and someone tries to give it to him he will go grab it out of their hands put it in my hands and then only take it if it comes from me. If I try and give it back to the other person he will have a complete melt down. It is making my life even more difficult then it already is because I have people that want to help but they can't because Brendan won't let them.  So we are working on trying to find a solution to this. His language is slowly progressing. His favorite word is "momma". But he uses "momma for everything and anything. He still doesn't understand that I am mom. But he will someday. We are only 2.5 weeks away from Brendan's 2nd birthday. I have been getting very emotional about it for some reason. This year has been filled with so many ups and downs but most of all it has been filled with love!

                                               1st & 3rd Place Winners

Some of Brendan's Therapist 

                                               Brendan and his friend Brogan

                                                Brendan hanging out in a small space

                                                  Fountain Hills Firefighters

                                                    Brendan falls asleep during therapy

                                                    Brendan falls asleep again during therapy

"Words and Sounds" March Progress Brendan 22 months

                     Brendan has made so much progress in the last 2 weeks. He is really starting to imatate sounds. He is saying, "momma" and it just melts my heart. He is saying. "go" a lot. He is starting to say, "baba" for bounce. However with his apraxia unfortunately what happens is when he learns a new sound a current sound or word will disappear. For me as a mom it is really hard because I am so afraid when the day ends and new day starts what he will not say and not do what he has learned. On Friday for example I couldn't get him to say, "momma" at all. Every time I said, "momma" to him he would say, "baba". Thank goodness the next day he was back to saying, "momma" but then he was no longer saying, "baba". This is what is hard. He is doing amazing with the PECS the picture cards. He will bring me a picture of chips at 6:30am and yup thats right he gets chips. This is still so new for him so we are honoring the picture exchange no matter what. Haley doesn't think it is fair but I think now she is ok with it. The picture exchange has made it easy for him to communicate and I believe this is why he has started to make sounds.

                                               Brendan doing ABA therapy with Katie

Brendan saying,"go & ba" (bounce)

                       Last week we had our first appointment with Dr Raun Melmed himself. I was really nervous going into the appointment and I am not sure really why. He first observed and played with Brendan. Of course he did the main autism test and called him by his name lots of times and Brendan never turned around. Then we chatted about what services Brendan is getting. Then we started to talk about apraxia. His doctor previously at the Melmed center is the one who wanted us to meet Dr Melmed because she had never had a child as you as Brendan with apraxia. Dr Melmed did his own assessment with Brendan and then told us he definitely has apraxia. But then he told us we are doing everything right for him. He has all the right therapy and to continue fighting because it makes all the difference. In the autism world here in phoenix there is nobody higher to see then Dr Melmed. It really made me feel great listening to him tell us that.
                              Brendan being silly trying to put Haley's American girl glasses on

                       Monday is April 1st and April is Autism Awareness month. I am so excited to spread awareness in any way that I can. April 2nd is national Light it up Blue day. We will be lighting our house blue for the whole month of April. Then April 6th is our big bowling tournament and Team Brendan has close to 50 people who are going to bowl. I am so excited to get our friends and family together to raise money and awareness.

March 12th It has been 1 year since Brendan's "AT Risk of Autism" diagnoses Brendan 22 months

   

   Today marks the date a year ago when Brendan was 10 months old and he got his "at risk of autism" diagnoses. I honestly can't believe it has been a year already. A year ago we were so terrified, finding out that your child could have autism was extremely overwhelming. But the progress he has made since then gives me such hope for his future. In the last week Brendan has made HUGE progress in his social skills. I shouldn't say just the last week because the last 6 months he has made progress but I got to watch his progress. This weekend we were around lost of house guests. When someone walked into the room he was in, I watched him look up to see who it was!!! When another child his size came up to him I watched him lean into them and try and give them a kiss. He would run up someone and want to be picked up! You all have no idea how much this makes me smile. I was extremely emotional watching him this weekend. These are huge steps of progress. I can only hope he keeps making progress like this in all areas.

   I just wanted to give you all a quick update on my appeal. After receiving my appeal denial I found out that I could request a meeting with my new team. I have had my new team of speech, occupational and developmental specialist for the last 2 months. They have been really good with Brendan, they seem to be more on the same page with what Brendan's needs are. I have the opportunity to dismiss my appeal and to take the chance with my new team to decide on what hours and therapy he needs. As scared as I was I felt I needed to give my team a chance. We had a meeting thursday and my new team and I got to decide on the hours for Brendan only for the ext 6 weeks. In the end my team had his best interest so we are trying out more hours but shorter sessions. We have another meeting in 6 weeks and at that time we will decide on the hours he will get for 90 days. Things are starting to look up, thank you to my new team for fighting for my son with me.

This is a video of Brendan discovering his own Shadow!

This is Brendan trying to imatate leaning over like a tea pot!

April is Autism Awareness Month - Team Brendan Shirts!

The month of April is Autism Awareness Month! April 2nd is World Autism Awareness day and I would love for everyone to wear their Team Brendan shirts and spread awareness. I am placing another order for Team Brendan shirts so if you haven't purchased your shirt yet please help support Team Brendan.

We have men's, ladies, children and toddler sizes. The adult shirts are $20 and the kids shirts are $15. If you would like to purchase a shirt please email me at Brendanslifewithautism@gmail.com with your size and choice of shirt. If you would like me to ship it to you please include your address. I will send you an invoice with the options of how to pay.

Mens sizes
Small,medium,large,X-large,XX-Large,XXX-large, 4XL, 5XL

Womens sizes
X-small, small, medium, large,X-Large,XXL, 3XL
 *ladies if you don't want this fitted ladies shirt you can order the men's shirt

Youth sizes
X-Small(2-4),small(6-8),medium(10-12),large(14-16)

Toddler sizes
2T,3T,4T

Amazing Progress with PECS finishing out February/Start of March 2014! Brendan 21/22 months

         In the last 2 weeks Brendan has made such amazing progress. It is so fun to watch him learn and accomplish new things everyday. One of his habilatation therapist who works with him 4 days a week said to me today that he keeps changing every time she works with him. He is tackling so many new things. We have now been doing the PECS(picture exchange card system) for the last 2 weeks. He is responding so well to it. He knows that if he wants the tv on, a snack and or his milk he will get the picture of the card and bring it to you. He gets so excited when it works for him. His face just lights up! It makes me tear up with joy every time. His therapist have told me that the progress he has made so far is extremely fast. I am so glad to hear this. This makes me think that he can do anything we challenge him with. I might be jumping a little ahead but I can dream big right? We are starting to get adjusted to his crazy therapy schedule. But I would take this crazy schedule anytime if he keeps up the progress he is making. He has learned to say "go". He is starting to wave "bye bye". He knows where is his "head" and "eyes" are.  He has mastered a lot of object imitation which he struggled with the first week. He has learned to do the big floor puzzles that are recommended for ages 4 and up. His love and ability of puzzles amazes me. He can also do some of the hardest puzzles on the iPad. He loves the one where the vehicles are moving and he has to match them up. It is even hard for me. lol. Since he has learned to give kisses he will try and use his kissing giving to get him something he wants. I LOVE IT!!!!! We all give kisses all the time. But unfortunately Haley was sick, two of his therapist have been sick and then Brendan was sick 2 weekends ago. So this kissing is spreading a lot of germs around.

             

       
         The dreaded appeal decision came on Thursday. As I suspected they denied me everything. I wasn't shocked by the decision however I was shocked that they told me the reason of the denial was because his previous team (Sunrise) never submitted quarterly reports. So like I said before they didn't like me and this was proof because now they were sabotaging me. This is what made me really ANGRY. Those papers were out of my control. To my understanding they had to submit reports. So my next move was to get a hold of Brendan's file that the state has for him and find out what was submitted and what is missing. The state is so shady and has had the reputation of tampering with files so I was going to have to show up there unannounced in order to make sure nothing in his file was tampered with. That is what I did, friday afternoon I made my way to the states office where his file is located. I asked for his support coordinator and she wasn't in for another 30 minutes so then I asked for her boss. She came out and asked me what she could help me with. I asked her if I could get a copy of my sons file. She said that I need to go through the legal department and it has to be in writing and that I need permission for his file to be released. She handed me the phone number of the person I needed to contact so I stood there and called while she was in my presents. The lady on the phone confirmed that is what I needed to do. Which was fine so I left and stood in the front of the building and made a call to my parent mentor Trisha(Autism Society of Greater Phoenix) and she immediately told me not leave and she will find out exactly what my next move is. She then got 2 other women from the Autism Society group on the phone to help us. They told me that in the Early Intervention law it states that as a parent I have the right to see my child's file at anytime. So they said I needed to go back in and tell them I need to see the file. That is what I did. I asked for my supper coordinators boss again and told her that I wanted to see my son's file. She immediately gave me the same response as she did prior. I then began to read her the law, she started to tell me that I was reading the Early Intervention part of the law and they were DDD and they have different laws and they could not show me his file. She then said well we don't have all his file here and start telling me where all the different places his file was located. At this time I knew she was completely lying so I asked her to go and get her DDD law book and show me in writing where it says exactly what she was telling me. She disappeared for 25 minutes and when she returned guess what she had,"Brendan's file."  So once again I called them out on this game they love to play. It seriously makes my blood boil the non sense they try and pull. I sat there and went through every page in his file. I found out we were missing reports from Sunrise from November 17th-January 15th. So I asked them to write an email demanding these files. They did do so and copied me on the request so we will see what happens. In the meantime I will write another appeal to the state telling them I disagree with the decision and from there they will assign me a court date. We will go to court and a judge will decide what services Brendan will get.  
                 This year we are honored to be part of the Marriott Photography Spring for Charity Event. For the last 3 years I have participated with Haley and then last year with both kids. I LOVE the kids pictures with the bunnies and chicks. Picking out spring Easter clothes is a blast. This year the charity they have chosen is Autism of Greater Phoenix. I have told you all before about my parent mentor Trisha who is on the board of the Autism Society. She has been my rock the last 6 months. She has helped me become the fighter I need to be. If you have kids I hope you participate. You get the benefits of having adorable easter pictures and then you get to give to an amazing group. Here is the link to find out more information.
http://marriottphoto.com/blog/6th-annual-spring-for-charity/  

Here is last year Spring for Charity Easter picture!

The month of January and the start of February (Brendan is now 21 months old)

         This last month has been my craziest month so far. I have so much to share with you all so I might jump from thing to thing so bare with me. In my last post I was explaining to you all that Brendan was getting ready to start his Hab M program 40 hours a week of therapy. Well that has started and omg our lives have gotten so crazy. Brendan also receives an additional 6 hours of aba, speech, feeding and occupational therapy. So he is getting 46 hours of therapy Monday thru Saturday. It is all in our house, which has been great, but I have to say it has just been such a life changing experience. Brendan starts therapy everyday at 7am and some days he doesn't end until 7pm. He obviously gets small breaks during the day to take his normal short nap and then to eat. Brian and I are trying to get used to someone in our house all day long. All his therapy right now is requiring 2 of us at all times. So I am with the therapist doing therapy right next to them all the time. Brendan has been really great with all the change. About 3 weeks ago the state decided to change the team agency we were with that was providing the speech therapy and occupational therapy. His original team won't admit it but I am pretty sure they were begging to get rid of me. I was there worst nightmare because I was constantly questioning everything they were doing. They really disliked that, but its ok because Brendan didn't like them either. My new team so far has been great. They are definitely way more qualified and much more on the same page with me. But this has been yet again another adjustment for Brendan and me. It is hard starting new with therapist because you have to go back to the beginning and share everything we have been through already. That actually is really mentally exhausting. They all have started with evaluating Brendan first and getting to know him. His speech therapist and occupational therapist brought to my attention a disorder called "apraxia." I had no idea what they were talking about. So of course I ask them to explain it to me. (Apraxia is a poorly understood neurological condition. People who have it find it difficult or impossible to make certain motor movements, even though their muscles are normal.) My first thought was no I can't handle any other diagnoses. I started to read and do some research on it and wow it was explaining Brendan exactly. The therapist did a mouth & tongue assessment and discovered that Brendan doesn't have full range or movement of his tongue. He can't move it front to back very well, or curl it or even move it side to side. If he gets food on the top of his lips or the bottom of his lips he won't use his tongue. The lack of movement with his tongue is keeping him from developing words. The 4 words he can say he doesn't have to move his tongue. This was all starting to make sense. This is called Oral Apraxia. He now will do almost like a very intense physical therapy with his tongue. We need to make him aware of his tongue placement and hopefully he will get more range. But the thing that is hard is that he HATES when you touch his mouth. So this has been a small set back because he fights you when its time to focus on his mouth. I am just hoping he starts to get used to it because he needs to be able to develop language. The second thing they brought up to me was called "Limb Apraxia". Limb apraxia comprises a wide spectrum of higher-order motor disorders that result from acquired brain disease affecting the performance of skilled, learned movements. I will explain the definition so you can understand it. We have been working on waving, pointing, touch your head with Brendan for the last 6 months. He looks at us when we do any of these to him but he just will not do it when we do it or when we ask him. However when he is just playing by himself, I will see him point, wave to himself etc. So we know he is capable of physically doing them however for some reason when we ask him to do it with us his brain and motor muscles just can not connect. This is what limb apraxia is. This is going to take a lot of intense hours working with him. He can recover from this it just may take a while. Finding all of this out is scary but at the same time it as helped me understand him better. 

These videos are just reality of what somedays of therapy look like. I always post all the good but I wanted you all to see what happens on a daily session. 

One of Brendan's developmental doctors Dr Gentry, he is the one we get aba therapy through. He is the doctor that I can call and ask advise or anything I need help on and he goes out of his way to talk to me like a real person. He had asked his employee Katie who is Brendan' s aba therapist if he could come to my house with her and work with him during one of her sessions. When I heard this I couldn't even believe it. What doctor makes a house call willingly? He came over to Brendan's session with Katie and first observed him and then actually got involved with therapy. He was giving me so much information in the 1.5 hour he spent here. He said he was so glad he got to see and work with Brendan because if he didn't he may of advised Katie to continue certain things in therapy that would have not been effective. Out of all his doctors and therapist the one thing they all say is Brendan makes them think outside the box. He is the little boy that you just need to spend time with to understand him. Explaining him to therapist and doctors just doesn't give them the real perspective of his condition. Dr Gentry has made the decision to start a program called PECS with Brendan. Picture Exchange Communication System (PECS) is a form of augmentative and alternative communication produced by Pyramid Educational Consultants, Inc.[1] While the system is commonly used as a communication aid for children with autism spectrum disorder (ASD), it has been used with a wide variety of learners, from preschoolers to adults, who have various communicative, cognitive, and physical impairments. Now that we know he has "apraxia" and it may take Brendan a while before he will start talking this picture system will allow him to communicate. I have taken a picture of almost everything and anything you can think of that he eats, plays with, goes to etc. We have just started to train him on how to use it. For example if he wants a drink a water he can pull the picture of his water cup picture off of the velco that is attached on the paper and bring it to me and I will know that he wants his water. It sounds simple right? Well for Brendan learning and understanding is a challenge so we will be working really hard with him so he can use the PECS system. I have been doing lots of reading on PECS and learning each step we will be taking with Brendan. 

      

 February 13th was my 30 days for my appeal decision. I got a letter in the mail on the 12th from the state letting me know that they have filed a 14 day extension so I won't know the outcome of my appeals until February 27th. I knew this is what they were going to do, they just love to play games. So fingers crossed the decision will be worth waiting for. 

Brendan had his 3 month follow appointment with his developmental doctor Dr PeBenito at the Melmed Center on February 13th. She was going over all the most recent data she has been sent from all his therapist and then she asked me a lot of questions. She observed Brendan during the entire appointment and she was extremely thrilled with how social he was being. That is one thing I know Brendan has come a long way on. He actually is starting to be aware of his surroundings a little bit more. She then started to talk to me about the 2 different kinds of apraxia I had explained early in this post. She started to tell me that she has never had a child this young have apraxia. She discussed with me that Brendan's case thus far has been so unique and difficult that she has decided that we need to have Dr. Melmed himself be his doctor. Dr. Melmed just doesn't take new kids anymore like he used to and he is also on a 8 month wait list for an appointment. However they are getting us in next month because its extremely important for Dr Melmed to take over his care. So for now we continue doing what we are doing. 

The iPad has been Brendans addiction. He has learned so much from the iPad. His therapist want us to have him use it as often as he wants. He loves puzzles on the iPad and regular puzzles. He is so good at solving problems! The last month Brendan has mastered clapping! He actually will clap all the time. He thinks clapping will get him anything he wants. He will bring me his snack for me to open and instead of trying to talk he just starts clapping. It is the cutest thing. Then I know I shared this already on Facebook but Brendan finally learned to give kisses. I am asking him for kisses ALL DAY! I just can't get enough of them. 

Sorry for the crazy long post, hopefully I won't take another month to write another post!  

Happy New Year 2014-January 1-15th (Brendan turns 20 months)

            I am sitting here reflecting on 2013 and I can't help but to get chocked up. This year was filled with so many ups and downs. January Brendan got to go to the snow for the first time. He then went to his first Giants spring training game in February. In March Brendan got his "at risk of autism" diagnoses at 10 months. In April he began therapy. Brendan went from learning to crawl at the beginning of April to pretty much running 2 weeks later. He turn 1 in May with his Mickey Mouse party. On June 17th my husbands birthday Brendan got his official," Autism Spectrum Disorder" diagnoses. We spent the summer fighting with state for Brendan to get services. We got to go to Iowa in July where Brendan got to ride his first tracker. In September we went Disneyland, California Adventure and the beach. Brendan got to meet his favorite person Mickey Mouse. Also in September he started the Jump Start program at SARCC as well as ABA therapy. Which both of those programs got him to say his first couple words. October we participated in our first annual "Team Brendan" walk for Autism Speaks. For Halloween he dressed up as a dalmatian. In the beginning of December Brendan story was featured on channel 15 news for "Operation Santa"with saarc. Then santa came and Brendan and Haley got a new backyard with a play set and a big trampoline. Brendan pretty much lives in the trampoline. He loves it!

           Now that I have reminisced about 2013 we are now in full swing in 2014. This was one year that I actually didn't want to get started. I know what is about to come and I am terrified and overwhelmed thinking about it. First thing I must do is get my 2 appeals into the state by January 15th. I have my speech therapy appeal and my occupational therapy appeal. I spent close to 12 hours just writing my speech appeal and about 6 hours on my occupational appeal. But Monday morning they were mailed out certified mail. They have 30 days to get a decision to me. However if they don't give me the hours of therapy I am asking for then we will head to court where a judge will decide Brendan's fate. I hope that the countless hours of research and money we spent to get new evaluations pays off.

    The next focus is on Brendan's hab M program. We have been on a wait list for a couple months at AZA United waiting for there to be a hab M therapist. At the end of December I got a calling saying that he was going to start the program in January. I will explain how this program works. Brendan will be getting a 2 year 40+ hour a week very intense program. It is structured very much like his aba (applied behavior analysis) therapy. The hab M (someone with a masters degree) person is actually the person who puts his program together for him. He will only see this person 1-2 times a month. Then there is a hab b (person with a bachelors degree) and they will come see Brendan about 2-4 times a month. The hab b will make sure that the hab girls are doing what they are supposed to do. So then you have your hab workers who are actually the ones that spend the 40 hours a week with your child following the hab M program they have given your child. The hard part is you are really responsible to find your own hab workers. Well this was super hard, but I ended up interviewing a bunch of girls over the holiday season and I have hired 3 girls to split the 40 hours of therapy each week. Brendan had his hab M evaluation last week so now I have to wait for the state to approve the 40 hours a week before we can have them work that much. However they are starting off with about 25 hours a week with Brendan so they can get to know him and so he can get used to them. Right now we are doing about 30 hours a week of therapy. This has been an adjustment for us. I will have someone in my house 6 days a week from about 8am to 7pm doing therapy with Brendan. I just have to remember that this is all going to help him and it will all be worth it. I am actually now getting excited for this program to start. I day dream all the time of Brendan just one day starting talk to me and I also dream of him showing emotion and coming up and giving me a big hug and kiss. I have no idea what the future holds for him but I know that I have big hopes and dreams for him.

                         Brendan is so obsessed with the IPad. It honestly amazes me that a 20 month old can work the iPad the way he does. His therapist really encourage him to use it as often as he can. So my iPad no longer belongs to me, Brendan has taken it over.