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.

Dec 16th-Dec 18th New Speech & OT Evaluations (Brendan 19 months old)

         It is Monday night December 16th and I normally write my blog at the end of the week but tonight I feel that writing is what I need. Brendan had his speech evaluation this morning with a new therapist and in a new place. We are doing another evaluation because I need more proof to show the state that he needs more therapy. So I know in my head what the therapist is going to tell me about Brendan. I know he won't score good but for some reason listening to someone tell you doesn't get any easier. Now that I have been through a couple evaluations I know what to expect. They do a play base testing and go down a list of different skills. Brendan was being his typical self and jumping from toy to toy and wouldn't give the therapist any attention. She observed him for over an hour and also asked me lots of questions. The final report of the evaluation I won't receive for about 3-4 weeks. But she did give me an overall explanation of her thoughts. She said he is pretty much at a 3-6 month old speech skill level. There is one area that he is just barely hitting the 9 month level. However she said his problem solving skills are above his age level. Except he is a non verbal problem solver. But she isn't evaluating him on that level. Listening to her tell me that he needs so much help absolutely breaks my heart.  We leave the evaluation and I get in my car and just start crying. I spent the next couple hours crying. I know I try and be strong all the time but today was a day that I just couldn't be strong. It just really hurts when you have to keep hearing how far behind your child is. Again I knew that I was going to be told this again but it just crushes me every time. Later tonight we were all finishing up dinner and I decided to play peek a boo with Brendan. He hasn't actually covered his eyes on his own to play but he lets me put his hands up to play. All of sudden he initiates the game and puts his hands over his eyes to play peek a boo. I was so EXCITED. This was a big accomplishment. Then after he played peek a boo I started to clap with excitement. Well you all know we have been working on clapping with him for about 5 months and he doesn't even put his hands together yet well he started to pat his chest which we figured out was his version of clapping. I put his hands together to clap and what do know he claps his hands for a brief second. You all have no idea the JOY that this brings me. I am now of course crying with tears of happiness. Thank you to Brian who was behind me with the video. I watched the video about 20 times tonight and cried each time. I sent the video to his aba therapist and she tells me she is crying because it is that big of a deal to us. What an emotional day it has been. My mother in law told me that Brendan knew how defeated I felt today and this was his way of telling me,"mom I am going to be ok, I will figure all these skills out someday."Here is the video of him playing peek a boo and clapping.

He had lots of therapy Tuesday and Wednesday and he has been in a really bad mood. He has been giving his therapist a really hard time and pretty much does whatever he can to avoid them. He is at the point that whenever anyone comes over to the house he will just start crying because he thinks they are all coming over to do therapy with him. This has been a week where I just keep questions my self as a parent. I know this is the right thing to do for him but it just makes me so sad that he has to do all this therapy and not just get to be a typical toddler. I guess I am just having really hard week too. My emotions are out of control and Brendan is having a bad week so I think this is making it all that much worse. Thank you to my family who has let me just vent and cry all at the same time. He has one more therapy session on friday and then no therapy for a whole week. I am not sure if I am more excited or Brendan. I am looking forward to Christmas and seeing how Brendan reacts to his presents. I hope you all have an amazing Holidays & Merry Christmas!

Dec 2nd-Dec14th Brendan is now 19 months

         Wow I can't believe it is the middle of December already. Life is so chaotic and busy right now I have found myself not remembering what day or week it is. I have been spending every free second I get on reading through all the research I received from the Emily Center. This research will be a big part of proving my case to the state. Brendan has been busy the last 2 weeks. The week of December 2nd he was back at SARRC doing another research. It was only 3 days long nothing to intense and all went well. That same week we took Brendan and Haley to an event by the Greater Phoenix Autism Society. They had a autism friendly event at the movie theater. The kids got to see Santa and then they showed the movie Frozen. They made sure the lights were dimmed but not to dark for the kids and then they had the sound at a volume that the kids could handle. It was really neat to be around other autistic families. Most of us don't even have to talk to each other, we just look at each other and you just feel that connection. Brendan didn't stay for the movie because it was way past his bed time but Haley got to stay and enjoy the movie with other siblings. Haley hasn't been to a movie since before Brendan was born so she really thought this was special.
       Later that week Brendan got to make his 1st TV appearance. Our family felt extremely honored that they chose Brendan's story to share. I can only hope that his story touched other families. Plus Brendan looked so cute on tv you couldn't help but watch him.

www.youtube.com/watch?v=d9bXJCXxdJs&sns=em

    Brendan made some huge progress this last week. He had some mornings that he actually slept in until 6, 6:30. On Monday morning Brian went and got Brendan and brought him to me so I could snuggle with him in my bed. Brendan actually found the remote for the tv on my bed and put it in my hand after he put it in my hand he POINTED to the tv. You all have no idea how exciting this was. We have been working on him trying to point for the last 8 MONTHS. I was screaming with excitement and of course Brian is like you better turn the tv on now. lol. I was just so excited that I didn't even think to turn it on. But I did and I had a happy little boy. I was giddy all day and smiling from ear to ear. These are the things that I used to take for granted. Now I can't even explain the joy it brings to me. He has since pointed at the tv 2 other times. However he is only doing it about 40% of the time so he is close but not close enough to say he is actually pointing. So we are working really hard to get him to do it all the time. He also this week started to wave  ,"hi & bye." Well sort of he will keep his hands down by his side and just slowly open and close his hands. It is so cute when he does it. We don't get to practice it much because every time I say,"bye bye" he starts to cry because he thinks I am leaving. He is SUCH a momma's boy! In this video you have to watch closely but he moves his hands a little.

Brendan has had a nasty little cold the last couple days so I am trying to get him to rest this weekend because next week is an even crazier week. We are putting 2 weeks of therapy into one because he wont have any therapy the week of christmas. He is also getting new speech & occupational evaluations next week. I have to get these on my own to add to my appeal for the state.

Brendan has been obsessed with watching, "Mickey Mouse Christmas," he is trying to say,"Santa, but it sounds like Danta."

       

November 25th-Dec 1st ADOS test (Brendan 18 months)

     

          After our crazy week last week I was really hoping for a little break mentally. Well first thing Monday morning we headed to the Melmed Center for Brendan to get the ADOS(Autism Diagnostic observation schedule) test done. He hasn't had this test done yet because when he was first diagnosed he showed significant signs of autism that they didn't feel the test was important. But most kids get this test before getting diagnosed. His doctor wanted him to take the test for 2 reasons one to provide the state with more evidence to help my case and then the other reason is to get a better idea of his level of autism. I was able to sit in and watch the test however I wasn't allowed to say or help in anyway. As she started the test she set up some problem solving games. Then of course he walks away because he was uninterested in what she was doing. So she tries to call his name a couple times and he doesn't even turn to look at her, it was like he couldn't hear her. She told me to try calling his name which I did and no response. The test went on for about 45 minutes and then she told me to give her a minute while she figured his score out. The scoring of the test was 0-28 and the higher the number the more severe of autism they have. I knew by watching the test that his score wasn't going to be good. He scored a 20, which puts him in the severe category. It crushed me when she told me his score because I had felt like he has been improving but when comes down to it he hasn't made much progress. So then I immediately when into thinking like is all this therapy and money we are spending going to be a waste, what kind of future does this mean for him. I kinda just went into freak out mode inside even though I was acting calm from the outside. His doctor said this is just more proof to the state that he needs all the services we are asking for. She is right but it still just hurts. After we left the Melmed Center he had just enough time to sleep in the car get home to eat before his next therapy session. Monday was a long day for him but he actually handled it really well.
           On Tuesday his aba therapist came over and I was catching her up on his ADOS test. She helped me feel better because I had told her what he did too even score the 8 points and she said that if he would have taken that test 3 months ago he wouldn't have even scored those points. She is right the points he did score is actual things he has learned with therapy. She felt positive that he is making progress so we are going to keep doing what we are doing. So since it is a holiday week he had lots of therapy packed together over 2 days. I am glad he will have a good 4 days of no therapy. My little boy really just needs a break right now. He has been through so much so its a break that is truly needed for him.
     Our tv segment is supposed to air on either Monday or tuesday night on channel 15 news. I will hopefully know by tomorrow. But if not they said it will be on their website if you miss it.
        I really hope that everyone had a fantastic Thanksgiving! I am just so grateful for my amazing and supportive family. I am thankful for my husband who works his butt off to support us and then for my healthily beautiful kids. I love every person who has reached out to help us!!!!!

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...