Day One- Support in Strange Places

I have so much to write about that it's hard to sit down and write. Does that make sense? I'm going to break it up a bit so I don't have one really long post that starts to bore anyone after the 22nd paragraph.

The morning started off great, though I should have realized something was up when Brian only had three bites of his pancakes. Shortly after arriving at the Thoughtful House to start our appointments I noticed he was shaking. I thought it was a little funny but our world is filled with strange occurrences so I blew it off a little.

Our first appointment was with Lucas Ramirez, the FNP on staff, and it was then as I was holding him in my arms that I realized he was hot. No, not the doctor (though he's not bad) but Brian- he was definitely running a fever.

Again, not a huge panic moment. Unfortunately Brian frequently has these little viral infections. It was this first appointment that made me realize how different this was going to be for me. Most of the staff at The Thoughtful House have been touched by autism. For Lucas, it was his son, and it was because he was searching for treatment that he fell into this line of medicine he is currently in. When it's that personal, you just know that they are really there for the greater good. They've personally done the treatments with their children that they are prescribing for your children. They have the same struggles and can give you "real-life" suggestions for things like taking supplements and collecting urine samples.

So out of our appointment two interesting areas popped up that will be interesting to pursue. One is yeast- which I think I've known for a long time but maybe have been in denial. Yeast could really account for Brian's bowel movements, his "manic" episodes, and his night wakings. We won't be addressing this yet, still have a stool sample to take, and we need to address general GI clean-up first. Second is PANDAS, which I've heard of in the past but never really thought it sounded like Brian. The difference now is that he is having all of these "OCD" components and they did come on quite rapidly last winter. Before then routines & rituals was actually one of the areas of autism we didn't struggle with. So a Strep test is going to be done just to rule this out.

After this session we had our lunch break and that is when I knew Brian was really sick. He wouldn't eat, he didn't want to move, and we ended up just spetnding our break in the waiting room- he slept.

We had an appointment with the Educational department after and this lady knew her stuff- haven't got the report back yet so I can't remember her name! Mommy brain. Anyway, she has her masters in special education as well as her law degree. She validated my feelings that our school isn't doing everything they should and she was actually pushing for me to sue them for the entire last year because they never did their own assessment on Brian. Who would've thought it? I just took charge and did our own assessments- I didn't really know they were suppose to. I really need to learn more about special ed law. In Early Intervention I felt like I knew it all and ever since last year when we graduated from EI, I have felt lost. I'm really looking forward to her report and passing it along to the school.

After that session it was apparent to everyone that we needed to hurry up and end the day. Brian was miserable. One of the nurses came and took his temperature and it was 101.5. We called the cab, who brought us to CVS so I could get a fever reducer. While in CVS Brian threw up all of the water that he had just drank (the first substance he had tried after the three bites of pancake in the morning). Not in the CVS bathroom, but right in the children's medicine aisle. Our cab driver by the way, comped us, and wouldn't allow me to pay. He's the cab driver that the Thoughtful House always uses and when he found out I was a single mother he told me he wasn't going to charge me for another ride.

Got back to the hotel room and realized that in my hurry to get out of the CVS I didn't think to grab anything else but the medicine. I didn't have a thermometer or Pedialyte. I called the front desk and they brought us some disposable thermometers from their first aid kit. They were so awesome. Not as awesome as our case coordinator though. She called, gave me her personal cell phone number, and told me she was going to bring us some Pedialyte. She went out of her way and brought it over and called and checked on us several times to see how Brian was doing.

So even being hundreds of miles away from my awesome community I found that we still had support from a lot of different sources. We were still involved in a wonderful community (though many of us would rather really not be a part of it)- the autism community.

Thoughtful Rooms

The Wyndham Garden hotel here in Austin has partnered up with The Thoughtful House to provide their clients with autism-friendly rooms. I had actually heard about these rooms a long time ago and I remember thinking wow, I want to stay there! I even remember thinking I could plan a vacation around those rooms!

Well they don't disappoint. First thing they have the whole reservation up and ready for you to go so you don't have to wait around at all when you arrive. It was our luck that the woman behind the desk was the same one in the social story they have available online! The rooms are completely childproofed- outlet covers, safety corners on all the edges of the furniture, door knob cover to the bathroom, and a security alarm I can set at night that will wake me up and inform the front desk that our door was opened.

While exploring the room we found a big box full of toys and books, a complimentary basket with a bunch of gluten-free snacks, a GF/CF/SF menu (A FULL MENU), and completely natural soap. The rooms are cleaned specifically with friendly cleaners.


On top of that the staff has been trained by The Thoughtful House on autism and some of the behaviors they may see. Everyone that works here knows you are from The Thoughtful House and they go out of their way to accommodate you. They always stop to say "Hi" to Brian when they see us talking one of our walks. They even brought me up some disposable thermometers out of their first aid kit when they heard he was sick.


And BONUS- there's a swivel chair in the room. That's all Brian needed to be won over.

Oh and did I mention for all this above and beyond treatment- you get a reduced rate than other guests at the hotel.

This is an amazing place. I wish all hotels could be so thoughtful.

Plane & Simple

So after much trepidation and worrying and loss of sleep I just experienced the best two plane rides of my life.

My child was so awesome- he was better behaved than other children at times! We had to awake super early this morning to get to the airport by 4:15 am. Brian waited in line to check-in and then led the way through security. He was taking his coat and his shoes off before I even had to ask him.

Our first plane was a smaller one from Maine to D.C. and there was a bit of turbulence. He wore his noise-cancelling headphones the entire trip and whimpered really softly during the bumpy spots. I never had to take out any toys or snacks. He was content to look out the window and snuggle. Throughout the trip he would look at me and put his finger over his mouth and say "Shhhh"- just like we practiced when reading our social story about flying.

Just as we started our descent, guess who had to pee? I had never wanted a plane to land so badly. All I could picture was him having an accident and just throwing off this wonderful mood we had going on. Luckily he was able to hold it until we got into the airport.

By the time we got to our next gate they were already boarding the plane. At this point Brian started to lose it a little bit. He didn't like the idea of getting on another one so soon. I started to get nervous as he wouldn't move any further up the plane aisle as I was trying to schlep aboard our rolling carry-on, backpack, purse,and booster seat. We finally made it to our seats and he settled in. Settled in to kicking the seat in front of him anyways.

I kept holding his feet and telling him to stop and yet he seemed to think it was a hilarious game. The stewardess saw us and said, "Sweetie, you need to stop kicking the seat", he didn't acknowledge her and kept on kicking. She repeated herself again and I interjected that he had autism. She paused for a minute and said, "Well he can't keep kicking the seat" and walked away. When I interject in situations like that I always think after how I wish I would have worded it differently. I didn't want her to think that because he has autism he can do whatever he wants- I merely said it so she would understand why he was acting as if she wasn't there. Luckily I was able to switch seats with him when I realized no one was sitting in front of my seat so he could kick away the rest of the ride.

But in reality, he fell asleep for the last two hours of the ride. It was wonderful. I couldn't have asked for an easier travel experience.

Wonders never cease. I am just so proud of him for getting through today with such a great attitude.

The Newest Quirks

* Once he has a bowel movement every piece of clothing he was previously wearing must go in the dirty laundry and he needs a new outfit. (And he's not having accidents, this is just his thought process)

* A track must be built on the edge of the tub before he'll get in to take a bath.

* He can not leave the bathroom until all the bath water drains. He then puts the little knob that keeps the water in the tub back up.

*When getting into the van he has to open the gas tank once before opening the car door.

* He must touch both arm rests on his booster seat with the back of his hands before he'll get out of the van.

* He's really into symmetry these days so I'm seeing a lot of oops I bumped into that with my right side, let me turn around and do it on my left side before I go do whatever I'm off to do.

* He suddenly wants to only wear Corbin's clothes and we keep catching him digging around in Corbin's bureaus. Corbin does not like this one much.

So On top of the doors, lights, and toilet rituals he has had going on for months now- he's a pretty busy guy. Just keeping up with his rituals and routines could be a full-time job! (And there's more, just when I sit down to blog my brain always draws a blank).

The Ins & Outs of Costuming

Nothing can be as simple as it seems when autism is thrown in the mix. Take Halloween for instance.

Halloween use to be a time that my little boy enjoyed quite a bit. His first year he was only five months old so granted he probably didn't really care as long as he was being cuddled and fed periodically. But he sure looked cute in his little angel costume.


It actually wasn't until his third Halloween when he was two and a half (and shocking the same year he slowly spiraled away from me) that I started to realize that Brian would never put Halloween as one of his favorite holidays. He hated his spider costume and hated the uncertainty of knocking on doors and then walking away- he really, really wanted to go into the houses if we were knocking on the doors!

The following Halloween he dressed as a dragon and Corbin was a knight. I'm sure they were incredibly cute together trick-or-treating, but I wouldn't know as I was my sister's labor coach as she gave birth to my beautiful niece, Layla, on Halloween night.

The next year Corbin wanted us to all do a super hero theme. I was Wonder Woman, Josh was Superman, Corbin was Iron Man, and Brian was Captain America. It was a pretty good year as I realized a trick to getting Brian to like a costume was to have it as much like regular clothes as possible- no hats, masks, capes, etc. We did a short trick-or-treating route and he really did okay, with only a few tantrums about not going into all the houses.

So his sixth Halloween I decided I'd let him pick his costume. Up to that point I had always picked them out. He chose a Wall-E costume and I figured since he chose it he would wear it. Well I had forgotten everything I realized the year before. He hated the costume- it had goggles, gloves and the costume itself was like a sandwich board. It wasn't happening. He screamed and cried and I ended up just outfitting him in Corbin's knight costume from the year before. And he was happy, he even kept on the hood for a little while!

Trick-or-treating time is around the corner again. Corbin has been discussing it for a while and has settled on being Albus Dumbledore. I'll be constructing a magical robe for him to wear. For Brian, well I'm still clueless. We'll think of something. And if that fails, well, we still have the knight costume.

Rock the Spectrum!

Part of my decision to go to The Thoughtful House was that I was going to try to fundraise money needed for the trip. I wanted to make this trip with all of my heart but I also didn't want to put our family into financial stress any more so than we already are. So I brainstormed and brainstormed about what we could do and settled on the idea of doing a benefit concert. My sister came up with the name, "Rock the Spectrum!".


Now I've done a few fundraisers, but always the money we've raised has all gone to the Autism Society of Maine. This was the first time we did one to directly benefit Brian. I think I was moved by the support at the previous fundraisers, but nothing could compare to the support I feel now.


We had two bands offer to play for free, an owner of a local restaurant that offered their space for free, and friends and family who put together raffle baskets, again for free.

I had people who couldn't make it that still sent their admission cost (and more) and people who traveled over an hour to come. I have a classmate that heard about our trip and instead of selling her textbooks told me to sell them and take the buyback money for the trip.

People who can't stand rock music came and sucked it up. My grandmother came, oxygen tank and all!


I truly can never get over the support that we do have. It really does something for you, for your soul, for your whole thinking of this situation when you are surrounded by love, acceptance, and support.


Thank you particularly to my Mom, Patty, my Dad (for cutting a rug all night long!), Sabrina, Dena, The Juke Rockets, Vicky Andres band, well everyone- Carolee & Patrick, Adra, Kim, Harley & Terri, Steven & Kristi, Gram, Felicia, and if you were there or just gave me warm words of support- Thank you!!

Evolution of a Smile

Corbin's smile on Friday.


Corbin's smile on Saturday.



Corbin's smile on Tuesday.