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!
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!
We now have Team Brendan shirts for sale. 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
Hi Everyone, 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 will have Team Brendan shirts available for purchase soon. 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
I can’t
put into words how much this vacation was needed for my family. Spending 7 days together is something we
never get to do. We woke up early Sunday morning got the car all packed up,
which there wasn’t an inch to spare in the car. But we got it all to fit. Then
by 8:00am we were on the road. The kids did so well on the car ride. We stopped
and had lunch and even took them to a park and still made it in 6.5 hours. We
arrived at our hotel and our room wasn’t ready so we headed to downtown Disney
to do some shopping. As we were walking Brian and I looked at each other and
both said why is it so hot here. It was
humid and just hot. We went shopping got ice cream and just let the kids run
around. Brendan was running around like a crazy man. He was so happy to be free
after spending half the day in the car.
Monday
afternoon we went to pick my mom and Ed up from the airport. They decided last
minute to come and meet us for a couple days. So we were excited they decided
to come. We had planned to do family pictures at the beach while we were here
on vacation so Monday evening was when we had those planned. But of course
Brendan was extremely tired and cranky most of the day Monday. This was the
first time he had slept in a pack in play and needless to say there wasn’t any
sleeping for either of us the first night. So I kind of knew pictures was
probably going to not go well. We headed to Laguna Beach for pictures. I don’t
think any of us really thought out the fact that it was Labor Day and the
beaches would probably be crowded. Well they were packed even at 5:30. So we
had the challenge of trying to the pictures around everyone at the beach. This
was Haley and Brendan’s first time to the beach. Brendan didn’t really know
what to do. He tried to walk but kept realizing his feet stuck in the sand. It
was really funny to watch him. Then he decided that he was going to just shovel
handfuls of sand in his mouth. It was so gross but it didn’t seem to bother him
because he kept doing it. I also knew getting him to sit and pose for the
camera wasn’t going to happen. He wanted nothing to do with anybody taking
pictures of him. The poor photographer was sitting there trying to call his
name to get his attention but I had to break the news to her that he wasn’t
going to respond. Haley of course was easy because she can pose like a champ! I
am pretty sure this photo session was a big disappointment and I am lucky if
any of the pictures turn out.
Tuesday
morning has finally come and we are headed into Disneyland. Haley was so
excited! We get through the gates and the first person we see is Mickey Mouse.
We waited in line to see him and as we walked up to him Brendan had this blank
stare over him. We got right up to him and then Brendan realized it was Mickey
Mouse and then got a huge smile on his face. He just wanted to touch him. He
just kept looking up and down at him. If I had to guess what Bren was thinking
it had to have been how are you real and not on a tv screen. Lol. As we walked
away and said bye to Mickey Brendan wouldn’t take his eyes off of him. It was
really cute. We then went to city hall to let them know about Brendan’s special
needs and they gave us a pass to use on all the rides he could go on. The pass
was for us to be able to go in the wheelchair lines, they had his stroller
classified as his wheelchair. This meant he could stay in his stroller right
until we got onto a ride. Which this was going to be our saving grace. He does
great in his stroller but if you try and just hold him he doesn’t let you so standing
in the normal line I knew would never work. We were now ready to hit the rides.
The first couple rides he did pretty well on. Then we went on a couple of the
rides that were mostly in the dark and super loud and he got pretty freaked
out. I have never had him snuggle and hold onto to me so tight before. I know
he wasn’t enjoying them but I selfishly was enjoying him snuggling so tight
with me. Then we went on It’s a Small World, well he completely freaked out, he
cried so hard and just buried his head into me. What I didn’t realize is that the
ride is way over stimulating for him. There is so much going on all at once
with, lights, and music, moving characters. I felt so bad for him he was
digging his nails into my neck because he was so scared. After that ride we
decided to give him a break from the rides. We went into Toon Town and just let
him run around through the little houses and play area. At this point in the day the heat was starting
to get to all of us. It was close to 100 degrees with humidity. We all needed a
little break. We finished out the day the doing all the rides that Brendan
couldn’t go on. The good thing is that Brendan was so tired that when I put him
down for bed he crashed and pretty much never moved all night.
Wednesday
morning we went to Goofy’s Kitchen for breakfast. It was so nice the chef came
out and said he could make Brendan special pancakes or waffles that he could
eat. So he tried pancakes for the first time plain of course and liked them.
When we take him out to eat the only way to get him to sit in the highchair is
to play Mickey Mouse movie on our phone for him to watch. It was really funny
when the characters would come over and say hi to the kids because Brendan
would glance up at them and then continue to watch his show. It was almost like
they were interrupting him. The best part was Pluto coming over and pointing to
the tv at himself and trying to get Bren to look at him but it wasn’t fazing
him. We then headed to California Adventure. There wasn’t that many rides that
Brendan could ride, it was mostly for Haley and the adults. But we did go to
cars land and Brendan really loved the live Lightning McQueen and Mater driving
around. He got to go on the bumper tires with Grandma and Ed and he seemed to
enjoy that. I have to say that the new cars ride was by far my favorite ride!
We then went back over to Disneyland and had dinner and watched the Mickey
Mouse parade. Brendan was terrified of the parade. The noise was just too loud
for him plus he was so tired so that didn’t help.
Thursday
we said good-bye to my mom and Ed as they were headed back home. We had so much
fun with them and they were also a big help with the kids. We got to go to
Disneyland early with the magic morning pass but all the rides we wanted to go
back on and ride were closed for the magic morning. So we were a little bummed.
We spent the morning at Disneyland just letting Haley go back and do all the
rides she wanted to do again. The heat again was getting the best of us so we
went back to the hotel mid day to just cool down. That was the best thing for
us because then we were all rested up to spend the rest of the day and night at
California Adventure. We also ran into some friends of ours that were there to
so we got to spend the rest of the day with them which was great because then
Haley had two friends to go on all the rides with. We saw the Mickey clubhouse
show and Brendan really enjoyed that. We ended up closing the park down. Doing
3 days in Disneyland was the perfect amount of time. Haley is already asking if
we can come back next year.
Friday
was beach day. We drove to Huntington Beach and spent the day by the ocean. The
kids had so much fun. Brendan once again was sampling everything he could fit
into his mouth, mostly sand and seed weed. Haley loved building sand castles
and Brendan loved to knock them down. The cold ocean water actually felt good
since it was so hot out. We all got pretty sunburnt but of course Brian got it
the worst. It was worth it we really had such a great time.
Saturday
we got up early packed the car back up and drove to LA. We were headed to the
American Girl Doll store. This was all of our first time to the store. Haley
was just in heaven, dolls and clothes everywhere. She got a new doll with lots
of new accessories. They have a doll hair salon so she got to get her two dolls
hair done. Of course she said this was
the best part of the trip. It was worth the drive to see how happy she was. It
was a great way to end our trip.
We
have a huge week coming up. We will be starting all new therapy for Brendan. So
I hope he can handle the change. We are starting an intense 6-week class at
Southwest Autism Research Center(sarc) called Jumpstart. It is classes that is
parent and child based learning. Then Brendan is starting to get some of the
aba therapy. He wont be getting the 20 hours yet but we have decided to start
aba therapy and pay for what we can now until we can get the state service to
start paying, which I hope is soon. So everything will be new for him but this
is what he needs right now. So fingers crossed we hope it's a good week.
