This blog explains how Brendan was diagnosed with autism at 13 months and it will also follows his day to day experiences. His journey will explain how and why getting early intervention works. He will go from being non verbal to verbal to not needing any more therapy. He will define the odds and prove that getting diagnosed with autism at such a young age helped him live life like a normal kid. As a parent always listen to your gut!
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!
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.
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."
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!!!!!
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
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.
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.
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.
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.
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.
I have been so excited to share our week with everyone. Brendan is now 17 months old and getting bigger. This week has been so emotional but for so many good reasons. I first want to start by saying the biggest thank you to everybody who has donated and joined Team Brendan. I am starting to get chocked up as I am typing right now. The emails that I have received this week from my Family and Friends telling me how they are supporting Brendan has exceed anything I could have ever imagined anyone doing for my son. I have friends and family in other states that can't travel to Arizona for the walk so they will be walking at the same time as we are walking with their Team Brendan shirts on! I have friends sharing Brendan's story with all of their face book friends to spread awareness about autism. I have friends trying to raise money for Team Brendan's walk on their own. People buying Team Brendan's shirts from all the United States. The list goes on! I want every single one of you to know that everything you are doing means more than you know to my family. It makes me so emotional to know that we have so much support behind us. I will never give up the fight to cure Autism for my son!
Last week I shared that Brendan started to try and say the words,"a again." Well he is officially now saying, "a again," and using it in the proper way. Also last weekend he started to say," a snack," which sounds more like, "a tack," but he is consistent and I know exactly what he is trying to say. That all happened within 2 days. I also shared the video of him going in and out of the dog door well lets just say all he wants to do is climb out the dog door to go in the backyard. Every time I pull him back in he throws a full tantrum. His aba therapist was over Tuesday for therapy and I was explaining to her his newest tantrum so I decided just to show her. We took him outside to play for a bit and then made him come in and as he has been doing he flipped out. So while her and I were discussing how to handle these situations he decided to calm down and walk to the back door and say,"outside." The therapist and I looked at each other and in the biggest state of shock both said, "omg he just said outside." That moment brought me to tears. He isn't saying the typical normal easy first words like momma, dadda, dog, up, yes, no but he has decided that he is going to put two words together and then say harder words. From that moment on Tuesday he is now also saying,"all done, I did, I catch, banana, I sit, Einstein's." He has also learned to give me a high five. I have been dreaming of these moments. You just never know if your child with Autism will ever be verbal. The last month of the intense aba therapy we are doing is showing us actual proof that it is working. We have been working so hard with him and he is starting to really respond to this method. Ok sorry I have posted lots of videos of him talking this week. Also don't mind that his face looks like he went to war. He is all boy and climbs and runs on everything so he took some good falls this week.
If you would like a shirt for the walk orders and money must be sent to me by Monday.
The money we raise for the shirts will be donated to Team Brendan Walk Now For Autism Speaks foundation walk. Even if you are not walking or live in another state you can still purchase a shirt and show your support. 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. All orders must be placed by October 7th, 2013. Thank you for showing your support.
Mens sizes
Small,medium,large,X-large,XX-Large,XXX-large
Womens sizes
X-small, small, medium, large,X-Large
*ladies if you don't want this fitted ladies shirt you can order the men's shirt
My poor little man has had a cold this week. So he had a couple of days where all he has wanted to do is sit on the couch and snuggle. Which I couldn't love anything more than that. Even with his cold we still had all of his therapy. He actually still did pretty good. Then my daughter had a stomach bug this whole week. She missed a couple of days of school. Then saturday morning Brendan came down with the stomach bug. So needless to say it was a rough week in the Schroeder house.
Brendan has started to get a little more vocal and he is trying to say words. He is trying to say a again, he uses the phrase for everything. He has also made the moo sound for a cow. But he has also stopped saying words. He hasn't said momma in over a week. It makes me sad and scared that he may not say it again. I know it is typical for children with autism to lose a skill when another skill is gained but I can't help but get worried. He learned to climb out the dog door so al he wants to do is go outside. I officially can no longer sneeze without having him run away!
On a good note this week I submitted a brief little saying to Autism Speaks Arizona blog. They were asking us to tell us why we are walking. I sent a picture of Brendan and said he was diagnosed at 13 months and that I was excited to start the tradition of walking every year with my family. I had no idea they would send it to there national Facebook page. I just happen to come across his picture on autism speaks page. They have 1.1 million people following the page. I was one proud mom, my goal was to get people to understand early diagnoses and I hope we can do just that. Now the next time you will see Brendan on their national autism speaks page it will be when he is cured and has an amazing journey to share.
This week as been yet again been an emotional roller coaster. After having my altec interview on Monday, I realized the lady who interviewed me had left a question blank. Which isn't good because this is how these crazy people get us because then they can fill in there own answers with out us knowing. Well this mom here wasn't letting them win. I finally get a hold of the lady Wednesday afternoon and her and I proceed to battle it out on the phone. She was trying to get me to change some of my answers. I wasn't cracking at all. So as we are in the middle of a screaming match she says,"we can fight about this all day but your son has qualified for altec." I just froze and say what omg he got it!! She said yes he needed to score 40 points to qualify and he scored 49! I was so excited. Well my excitement was short lived. I received a phone call from her a couple hours later tell me that her supervisor had to review the application and she is requesting some update information before he can qualify. The information she was asking for was stuff that the therapist don't do until the 6 month reviews. Anyways not to get into what she needed because its complicated she was basically saying if I didn't get this information to her then he wash't going to qualify. I felt like I had been punched in the stomach. So that night my parent mentor Trisha(my angel and saving grace) helped me draft letters to my pediatrician and the state. Up again most of the night doing my research so I could know what I was fighting for. My pediatricians letter was what was going to save me and to get the approval. All said and done my pediatrician came through and got me the letter I needed. My pediatrician has honestly been the most help, support and amazing doctor I could ever ask for. I got an email and a phone call Monday(today) letting me know that Brendan officially had gotten ALTEC!!!!!!!!!!!!!!!
All of this fighting and sleepless nights have paid off. This means he will get the 20-30hours a week of aba and the state will pay for it!!!!! We are so excited words just can't explain the feeling! So we enter the beginning of this week on a big high note!
Reminder about signing up for the walk and purchasing your Team Brendan shirts!
This is our first year doing a charity walk for autism speaks. This walk helps raise money for treatments, causes and finding a cure. We have created our own team called Team Brendan. We will be walking 1 mile in a group in support of Brendan at tempe beach park. It is on October 27th at 9:30am. This is a walk for the whole family. Strollers and wagons will be allowed however no pets, bikes or scooters are allowed on the walk. I have Team Brendan shirts available for purchase. We would really love for you to join our team and walk. Please register all walkers even babies. When you are on the home page of the website go to the left side and enter Team Brendan and then you can join our team! Www.walknowforautismspeaks.org/Arizona
This week we started all new therapy for Brendan. I was extremely nervous on how he would do since he is doing more hours of therapy in a row than he has done prior. Tuesday was our first day, we started at SARRC(southwest autism research center) jump start program. It is a 6 weeks course for parents and the child to start learning how to teach and model aba(applied behavior analysis) therapy. There is only 6 kids in the program at one time. Our group has 1- 6 year old, 2-5 year old, 1-4 year old, 1-22 month old and then Brendan 16 months. We found out that Brendan is their youngest child ever to enter this program. The first hour of the day the kids all go in a classroom with a couple therapist and the parents go in a room together to do some educational learning of aba therapy. Then we watched on a big screen TV each child goes in a small room with a therapist. We have someone explaining to us what the therapist is doing with our child and why. It was really fun to watch how your child is with other people when you are not around. Brendan over all did pretty good. He had a couple moments of small breakdowns but overall he did well.
After sarrc on Tuesday we had a 2 hour break so Brendan squeezed in a little nap and some lunch. Then he started his at home aba therapy, which will be 2 hours at a time. Katie his new therapist was amazing with him. She knew just the right way to give him his space but still interact with him. He started to catch on really good with how the aba process works.
On Thursday we headed back to sarrc for another day of learning. Brendan had woke up at 4:30am for the morning so he was already sleeping in the car on the way to sarrc at 7:30am. Of course I had to wake him up so he started therapy not in the best mood. But after he woke up he just jumped right into what the therapist was asking us to do with him. Thursday's at sarrc we spent the first hour with therapist giving Brian and I one on one training with Brendan. He did really well for us. Then we spent the rest of therapy again in a class room learning the next steps to aba. Later that day he had aba therapy with Katie and Brendan just did so good. The excitement I felt after such a great week of therapy is something I want to feel all the time. I know this sounds crazy but after just a week of new therapy he has already made big changes. But again my fear is the regression. But for the moment I am going to enjoy the progress he has made.
Brendan's food limitations has me doing constant research and constant searches for foods he can eat. I was on a mission to find him cookies he could eat. I came across a company that had 3 different kinds of cookies that were free of all of Brendan's food allergies. So I ordered them since nobody in AZ carried them. His 3 boxes arrived at $10 a box and you get 12 small cookies in one box. I had try one and honestly they were really not that bad. Brendan who is not great with introducing new foods grabbed the cookie out of my hand just started to devour it. Again this is moment for me to watch my child light up when getting to eat his first cookie. It brings tears to eyes because I want him to be able to have those experience like every other child. You can't put a price on those experiences. He has also started to eat better with table foods so we are trying to get him off his prescription formula. We introduced coconut milk and again surprisingly he liked it. So this week we will hopefully get him off the formula. Here is the link for the cookies www.cybelesfreetoeat.com
On Friday night I received a phone call from the state(altec long term care) letting me know that I will be having Brendan's medical interview assessment. I have been waiting for this call for 3 months. I have been preparing all the paper work and medical letters etc that I needed for this interview. The first time I had this interview it was a complete disaster. The interviewer backed me into corners made me think Brendan could do tasks that he couldn't do, they lied about policies etc. Which I believe is partly why he was denied. I have had my amazing parent mentor Trisha and Cynthia from Greater Phoenix Autism Society preparing me for this moment. I needed to know every single law behind all my rights because you have to make sure the state doesn't walk all over you. Sunday night Trisha spent 2.5 hours of her time on the phone with me going through all the questions and making sure I was prepared to fight. She knew how nervous I was so she offered to come over Monday and sit in on the interview with me. So she not only spent all sunday night on the phone with me but then left her own son who is in therapy all day to come and support me. I couldn't say enough thank you's to her for the support. She just kept saying to me us Autism moms stick together and we all help each other out. I wouldn't have the knowledge I have right now with out these women's help. The state will do whatever they can to not get you services. It is truly sick and cruel how they put us through all of this so our kids can get help. I was up majority of the night sunday going over and studying the state laws. This morning comes and its time for the interview. I was so nervous because this next hour of an interview determines whether or not my child gets more therapy. I feel like it went good. Trisha said that I officially have received my warrior badge in the autism mom circle. I was extremely emotional during the interview because all I want to do as a mom is to help my child but I was being dragged through the mud and questioned on every little thing. Now I sit and wait to see if this time around he gets accepted. Today has been such an emotional day for me. So I am happy that it is coming to an end.
I am ready for another great week of therapy and I am ready for my little man to make even more progress! Thank you to everyone who has signed up for the Walk For Now Autism Speaks walk. Thank you to everyone who has purchased shirts to support our walk. You all are the ones that when I have these bad days help lift me up and remind me that I can get through this. We love each and every one of you!
