November 11th - 23rd Clinical Research Study (18 months)

         

     

            I am sorry I am a week behind on Brendan's progress but I haven't had even one free minute in the last 13 days to write. Thank you to all of you who reached out this week to make sure we were ok since you didn't see a blog post last week! I am so humble for the support. It has been the craziest 2 weeks for me.  Last week Brendan started the clinical research study at SARRC. The first 3 days of the therapy were extremely intense and super exhausting for Brendan. The therapy was all in the middle of when he normally takes a nap. So not only was the therapy so demanding but he was tired on top of it. I was worried he wasn't going to make it the whole week of the trial. On the 4th day of the study I got a call letting me know that the therapist he had been working with had come down with the flu. I was actually happy that we didn't have to go because Brendan just needed a day to regroup. He ended up taken almost a 3 hour nap which he has never done before. Then the following day got cancelled as well. We were going to make them up on Monday and Tuesday. So throughout the weekend Brendan really started to throw more lengthy tantrums. Which he hasn't done much of the last month. It was like he was getting frustrated at every little task he was trying to do. He has started to communicate by coming to grab your hand and then he takes you to where he wants to go. So for example if he wants to go upstairs he will grab my hand and bring me to the stairs. He also will grab your hand and have me point to the tv to indicate he wants the tv on. So you all must be thinking why wouldn't he just point to the tv himself. Well that is the mysteris question we don't know why he can't do it. When he plays a game on the ipad he will also take my hand to touch it. For some reason he just doesn't understand that he can do it himself. It is like we have been working on getting him to clap for the last couple months and you can see on face when I clap for him that he wants to do it but he can't figure it out. We have finally gotten him to sometimes put his hands together but then he releases them. Neurologically something isn't functioning right in that motor skill.
         After a long weekend we headed back to SARRC on Monday for the 4th day of the study. Brendan didn't seem to be in the best of moods. He was just very mellow and not his normal hyper self.  He definitely didn't want to be forced to do anything. He had a couple melt downs during therapy which again isn't normal for him. Tuesday was his final day of the clinical study and by this time he wasn't to excited to be stuck in the same little room with the same toys he had been playing with all week. So right away when we went in he was fussy. He immediately started asking to go outside. So to back track just a bit the aba therapy we have been doing at home with Brendan is a respond and reward way of teaching. So if he responds with a verbal command when asked something he will get what he is asking for. Even if the sound coming out isn't the right word. So he is used to given the verb command and then receiving the action. This study was a lot more demanding of the verbal command, along with eye contact and then responding to a task. Well Brendan doesn't understand to respond to a task. I can say, "Brendan go get your blanket" and he would have no idea what I am saying. So the final day she was giving him a lot of tasks to complete and he was getting so frustrated because he was just given the verbal commands and then nothing was happening so this lead to major melt downs. The final tantrum lasted about 25 minutes and it was ugly. He was screaming and banging his head on the ground so hard that I was so scared he was going to really hurt himself. It was toucher to watch as a mom because he didn't understand what was going on or what he was being asked to do. So eventually the therapist just let me help him so he could calm down. I learned some things during the study but overall it wasn't a good experience for Brendan. I just had super high expectations going into it because we had such an amazing experience at SARRC for the jumpstart program.
          SARRC(southwest autism research center) is a part of the huge "Operation Santa" program here in Arizona. Last year they served food, presents & clothing to 252 families during christmas. Channel 15 news is having a week where they are promoting the program on tv. They had asked SARRC to submit a couple kids stories to promote SARRC in the segments. Well we found out that they choose Brendan's story to be featured. So on Wednesday Brendan and I went back to SARRC and the news crew interviewed me for about an hour and then they did some video of Brendan playing. Right now they told me it will air on December 3rd but they said that they will confirm the time and date as it gets closer. I feel so blessed to be able to share our story because all I hope is it will help another family recognize the signs early so they can get help when the kids are young.
            We get home from taping the segment to find out that the state had served me papers denying the hours of therapy I am requesting for Brendan. Well I am not requesting his doctor are requesting them for him. So my good mood just took a big turn. I am now starting the appeal process. There reason for them denying him more hours is they don't have any evidence to support the doctors prescriptions. So I tell his doctor and her response is, "I shouldn't ever have to defend a prescription I am writing for someone, especially when it is medically necessary." But the state feels differently. So now I am having to get all new evaluations done for speech and occupational therapy. As well as Brendan will get a physic evaluation and then a test called ADOS which this test will just reconfirm his autism diagnoses. All of this takes so much and money but I am going to do what I have to, to win this case in court. Then I am having to get research that proves that kids under the age of 3 have shown results with lots of hours of therapy. So this research will just help my case in court. I have recently found out about The Emily Center at Phoenix Children's Hospital. This is a research library at the hospital that will help you get all of the most recent data on almost any medical subject. I called them told them what I was researching and then they said they will have data sent to me in a week. They do this for free. This has to be the most amazing center because they understand if you have a sick child then they know you don't have the time or energy to the research on your own. This is one organization that you all want to donate money to because that is how they can do this service for free. So I am back to beginning a crazy mom and staying up late to make sure this appeal is perfect.
     So after the last 2 weeks we have had we decided to cancel therapy for Brendan on friday and just let him have a day of rest. I feel that was the best decision because today he has been in the best mood he has been in the last 2 weeks.  It is super unfortunate that all I feel like I do is fight people to make sure my kids can have the best skills to succeed in life. Being a parent is the hardest job in the world!

Brendan didn't let the rain stop him from playing outside!

Watch his hands he is really trying to open and close them like a wave

Brendans life with Autism: From birth to 15 months

Brendans life with Autism: 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...

Novemeber 5th - November 10th Fighting with the State Again

            
 This week has been extremely mentally exhausting for me. Where do I start? So as you all know last month Brendan was approved for state secondary insurance(ALTEC). We all know what I went through to get that for him. When I take Brendan to see his developmental doctor at the Melmed Center they have given me prescriptions for exactly how many hours of each different therapies they want for him. They give them based on his evaluations with them. So naturally as a mother you do what the doctor wants. Brendan has a team of therapist with a company called Sunrise and they are contracted with the state. Brendan has only been receiving speech therapy 2x a month and occupational therapy 2x a month with them. When I let Brendan's doctor know this information she flipped out because that isn't close to what she has prescribed for him. I explained to her that they wouldn't give me anymore therapy. She told me now that Brendan has state coverage I should try again to see if he can get more hours. Of course anything you do with the state isn't easy so I called my support coordinator with the state and asked for an emergency meeting so I could go over Brendan's goals and to hopefully get more hours. Every 90 days you sit down with your team and you all come up with goals together. We had our goal meeting for his IFSP last month but I just wasn't happy with the goals they set for Brendan. I have been in contact with the legal department for AZEIP(Arizona early intervention program) because I wanted to know what my legal rights were if they kept refusing to give me more hours. So once again I was back to studying more of the law. They had 14 days to give me my emergency meeting. So we had our meeting on Thursday. Normally during the meeting you will have your team there, which is your support coordinator, occupational therapist and the speech therapist. But of course for my meeting they send the support coordinator along with the director of Sunrise and the project manager of Sunrise. This told me they already knew that I was going to fight. I just took my level of momzilla up a notch after they walked in the door. We now begin to go over and rewrite all of Brendan's goals. We all have to agree on this together. This is where we started to disagree. I know that there goal is to give him easy goals so they can say look he has mastered all his goals in 90 days because then they don't have to give him as many hours. I wasn't going to let this happen. We battled with each other over all 7 categories of goals. I of course had a crying breakdown in the middle of fighting because it just makes me so mad how they try and manipulate you. Then after the goals where in place the therapist and director decided how many hours of therapy they will give him. They decided that he would get 1 hour of occupational a week and then still only 2 hours a month of speech. Well I am asking for 3 hours of occupational therapy a week and 2 hours of speech a week. This is what his doctors have written prescriptions for. They are refusing to give me the hours I want. So they inform me that I will be receiving a letter called a NOA which will state that they are refusing my request and then my case will get sent to a judge to decide how many hours he will get with Sunrise. The judge will look at all the documents from the therapist and doctors prescription and make their decision. Whatever the judge decides on then Sunrise will have to give me. However if I don't agree with the judge I will be able to appeal the judge's decision and then we will go to a court hearing. The director of Sunrise tells me she has been there for 12 years and this is their first NOA. My first thought was great I am that mom, but then I said that I just can't believe that another parent has never fought to get more hours. That truly just blew my mind. But you know what I don't care. I am going to fight for what he needs. This meeting lasted 4.5 hours long and it was so mentally draining. So now I will wait for the judge to make his decision!

           So for some good news I had an interview with a potential habilitation worker for Brendan. This person will be working with him for 30 hours a week. They will be his main therapist and focus on all areas. I actually liked her and have decided we are going to give her a chance. She is being hired through a company we picked who hires habilitation workers. She is going to start in a week.  Also on Monday we are starting the clinical research project I got Brendan into at SARRC. This is a intense 5 day course of therapy for him and us. I am looking forward to it because Brendan responded so good at the Jump Start Program at SARRC that I hope he does the same this week. Fingers crossed we have a good week.

October 29th-November 4th Halloween Brendan 17-18 months

    

     Now that we have recovered from our Autism Speaks walk it was time to get ready for Halloween! This week we had a couple set backs. The first one was Brendan got a hold of my nephews sippy cup and took a sip which had milk in it. Within an hour Brendan started to get a rash on his cheeks. The rash on his cheeks lasted for 4 days. He also had lots of diarrhea and some irritability for a couple days. This was actually a good lesson for all of us to learn because we all need to keep food and drinks in a designated area when Brendan is around. I know its hard even for Haley to understand and to get used too. I am just thankful he only got one sip.  Then I am still dealing with Brendan's PICA (eating non food). He ate more weird things this week. This is super exhausting to deal with because I am having to follow him around every second of the day. We have some of his therapist trying to help us with it but so far no progress. Then it was time for Halloween. I knew getting Brendan to wear a costume was going to be a challenge. He wanted nothing to do with his head piece. We dressed Haley my daughter as Cruella Deville and Brendan was a dalmatian. They were actually so cute and Haley played the roll of Cruella very well. Brendan didn't actually trick or treat since he can't have any of the candy so he just sat in the wagon and watched all the kids. I have realized with Brendan's food allergies that next year for Halloween I might be the house that gives out toys or pencils. lol
Brendan loves to watch himself in the therapy videos I take of him. He will watch them over and over.

     Brendan turned 18 months on Saturday! It is so hard to believe he is a year and half already. He went to the doctor for his 18 month check up and he did really good. He is still my big growing boy.  He weighs 28lbs 6oz which puts him in the 92% of his age. Then he is in the 90% of his height. He then needed to get his 15 month shots that he never got. He got 3 shots and all he did was whiny for a split second. He is such a tough kid, pain really doesn't faze him.

     Therapy is starting to get more intense this week. Turning 18 months now has so many more skills he should be doing. I have his team of therapist working hard to get his goals in place.

October 22nd-28th Autism Speaks Walk Team Brendan 2013

            I don't even know where to start. This past week has been so heart warming for my family. We want to truly thank every person who walked, donated and reached out to us in some way in support of Team Brendan. Team Brendan had 74 walkers and we raised $3,335. We were the largest independent group walking. We were also in the top 12 groups of money raised. They announced just before walk that they had 20,000 people registered to walk yesterday. It was so crazy, there were so many people there raising autism awareness. Looking and watching our group of Team Brendan shirts all walk together was a feeling that will never leave me. It made me so emotional knowing all the friends and family devoted there morning to raise awareness. Brendan of course had no idea what was going on, he even fell alseep during our 1 mile walk that took us 50 minutes to walk. I can't wait to tell and show Brendan what our first year walking for him was like. We are going to make this a yearly tradition for Team Brendan. I am already excited for what next year will bring us. We also had my amazing family and friends walk in Northern California and Utah in both freezing cold weather. Then my brother who is a fire fighter and had to work during the walk had his station support and they made a banner and also walked for Team Brendan. We finished the walk and headed over to a park and celebrated with a big lunch, candy,cupcakes and the kids made puzzle piece ornaments to remember the walk. Thank you again to everybody who gave us your support. We love you all so much!

       

           Last week Brendan had a follow up appointment with his development doctor at the Melmed Center. The day of the appointment brought me so much anxiety because the last time we were there was when he got his diagnoses. I was terrified at what was going to happen. I came to the appointment with my list of concerns to tell her about. I was afraid I was going to forget everything. She wanted to know how things were going and my answer was,"it's been a crazy roller coaster of up's and downs so far." She wanted to know what my concerns were first. My main concern was him eating all of the things are not food and enjoying them. So I explained to her that it started back on the first of September when he started to eat sand. I first thought he was just being a typical boy and experimenting  and being gross but for the last 2 months every time he is around sand he begins to shovel it in his mouth. When I take it away from him or say no he completely has a melt down. He actually enjoys eating it. I know in my last blog I mentioned how he was eating lost of strange objects and I just thought it was him being a boy but it started to become more frequent. I knew it wasn't normal when he was enjoying the taste of dirt and things like soap. He doesn't do it everyday but I have been so paranoid at what he might eat next that I follow him around every second of the day. This is a big safety issue so I knew his doctor needed to know. She explained to me its a condition called PICA syndrome. It is common in autistic and mentally disabled kids ages 18 months to 5 years old. He is basically doing it as a sensory seeking act. So now we really need to get all of his therapist to help get this under control asap. It just another concern to add to my full plate. But I handled this news pretty good. Then I told hid doctor all the good things he is doing. She pretty much had the same reaction that his therapist are having. Which is he is definitely a very unique little boy. He is progressing out of the norm. He is skipping the basic things kids normally learn first and just skipping to much harder words and activities. But she doesn't care which order he is going in as long as he progressing and not regressing. So overall we had a good appointment. Just a set back with the PICA diagnoses. I have been educating myself on PICA all weekend. I feel much better now knowing more information about it.

This video is of Brendan playing with Barbies. He loves to play cars but he has also been taught by his sister on how to play barbies. The best part of this video is he is playing with them appropriately.

Oct 15th-21st Brendan 17 months

                                                     6 More Days Until The Walk!!!!!!!

            This was a great week. Brendan has learned more words and skills. He has learned to say the number 3. We always count 1,2 & 3 before we swing him so he has learned the number 3 from that. Last friday at therapy he decided he was going to say, "thank you." It was again completely random for him to say. Then he learned to say, "slide." He has been outside playing pretty much anytime its day light out. He just loves to be outside. We have also taught him how to do high fives and then he has learned how to do touch down. It is so amazing to me how he is changing everyday. Therapy is really starting to work. It makes me one happy momma.

Watch Brendan on the,"EiEiO," part 

               I have been busy this week getting ready for our walk and lunch party this weekend. I am overwhelmed with joy with the amount of donations that everyone on Team Brendan has raised and given. We are so lucky to have such amazing family and friends supporting us. We are really looking forward to sharing this huge life experience with everyone.

October 7th-14th Brendan 17 months

This past week for Brendan has been pretty calm. He had all of his normal therapy and did really well everyday. He is still saying all of his words he learned last week. He didn't learn any new ones this week. I think he was so into eating anything and everything that he was to distracted to learn. He is going through the toddler boy stage where he puts EVERYTHING in his mouth. This week I caught him eating dirt, leaves, rocks, bubbles, grass, sand, shower bar soap, dog food, stickers the list goes on. The gross part is all of those things he ate never seemed to bother him. I guess this is what I get to deal with having a boy.

      We found out that Brendan has been accepted into a clinical research project at SARRC. We are so excited because this is a very intense 25 hours of therapy for 5 days. They are on a 6 month waiting list to get into this program. They have been looking for an Infant for this program which now they have Brendan so we will be starting it November 11. The best part is it's free for us. Normally it costs $2,250 for 5 days of therapy. This is exactly why we are raising money for Autism Speaks. Brendan doesn't get the money personally that we are raising however it goes to funding research projects. Now that we are part of a research project raising money for Team Brendan has so much more meaning.
        Team Brendan Walk Now For Autism Speaks Walk is in 13 days. We are so excited because as of now we have 60 people walking on our Team. It is going to be such an amazing event. We are looking forward to it.