Wednesday, September 29, 2010

Who's On First Base?

I don't know how many times I've heard people relate talking to a child with echolalia to the routine done by Abbott and Costello. It's just talking in circles most of the time. But you keep trying.

Two days ago Brian and I were hanging out in the waiting room of our therapists' building. It was Corbin's turn for speech therapy. While we were there a speech student who is interning with our therapist came out. She had met Brian the week before and she knelt down to talk to him.

E: "Hi Brian!"
Brian: "Hi Brian!"
E: "How are you?"
Brian" "How are you?"
E: "Are you good?"
Brian: "Good!"
E: "Is it raining outside?"
Brian: "Yes!"

Then he walked away.

I've been seeing a lot of this lately. Answer a few questions with echolalia and then just on the spot come out with the right answer to a question. Granted those questions are usually of the yes/no variety- but better than nothing!

For a few months this has been my focus at home. Getting him to answer simple questions about himself with no echolalia. I ask him the same questions everyday and I made a book with pictures of him that we read a lot but no luck yet. I decided to try this morning as he woke up early and he's pretty mellow.

Me: "What's your name?"
Brian: "What's your name?"
Me: "Say Brian"
Brian: "Brian"
Me: "What's your name? Say Brian"
Brian: "Brian"
Me: "What's your name?"
Brian: "Me!"

The "Me" answer is a new one but he has been using it regularly with the "What's your name" question. At least it's not echolalic. And he understands I'm asking about him? I think....

When this echolalia stuff bothers me- I just think back to a time not so long ago when he wasn't talking at all. At least I get to hear his voice now.

Monday, September 27, 2010

Dr. Neurology

Corbin seems to have this wonderful ability to explain to me how his brain works. I'm thinking about signing him up to teach a neurology class at our community school. I certainly can understand it much better when he tells me than I ever did in my A&P 2 class.

When he was just five years old and still struggling a bit with word retrieval he sat me down and said, "Mom, the reason I can't find my words is because my brain is full of drawers and I have to search through all of them to find the right words".

So many times he'll express to me how his sensory system works, okay maybe not the science behind it, but he's extremely open with me about things that bother him. He is sensitive to noise and sometimes he'll come home from school just in a terrible mood and when I inquire he'll say, "I think it's because it was so loud that my ears almost broke today."

Today I was telling him something and he asked me if I would remind him again. I asked why I needed to remind him and he said, "I learn so much everyday and it's like all these bubbles in my brain and if they get too squished sometimes they will pop and explode right out of my brain!"

So isn't that much easier to understand than neurons and synapses? He's got a promising future.

Sunday, September 26, 2010

The Big One is Done.

The six hour Intestinal Permeability test is done.

I'm so happy that we accomplished this small feat. It began with me having to take Brian's first morning urine. He pulled down his underwear, realized I was holding the cup, pulled his underwear back up, and left the bathroom. He did this four times before he finally gave in and went into the collection cup.

Next I had to mix up the "Challenge" solution (which consists of two types of sugar) with water and make him drink it. It was a small amount and after mixing I put it into a regular water bottle to try to trick him. It wasn't happening. I could only allow 30 minutes from the time he started to when he was done or else the test would be ineffective. So after fifteen minutes of being "happy, silly mommy" and him not having swallowed a single drop I had to be the "mean mama". It came down to me having to use a pipette to force him to drink it, all while sitting on top of him. Not fun. BUT he didn't spit any of it back out at me which he does every single time I've tried to give him medicine that way.

As soon as we were done he forgave me and gave me lots of hugs. We spent the next two hours cuddling and watching the Disney channel. I'm so glad he can forgive me so easily!

The rest of the urine collection really went off without a hitch. In fact by the last time he had to go to the bathroom he stood in front of the toilet and waited for me to get the cup before he'd pee. Now to figure out how to get a stool sample.

Saturday, September 25, 2010

Not normal.

Our family is not normal. Not at all.

Tomorrow I'm going to be attempting to do the Intestine Permeability test with Brian. It consists of him fasting overnight, drinking a glucose-type drink in the morning, still abstaining from food and drink for another two hours, and collecting his urine for six hours.

There's so many cracks in this plan.

First, I can't get Brian to drink anything if he suspects it's not a "normal" drink. He is always on the guard, checking to make sure beverages don't have any supplement added into them. I have no idea how I'm going to get him to drink the glucose drink.

Second, I am going to need to be attached to Brian all day long to make sure he is not sneaking any foods that contain fructose or sneaking any urine into the toilet.

Third, Brian will not pee into a collection cup. We've tried urine tests in the past to no avail. He has his ideas about how things are suppose to be done and a collection cup is no where in that plan.

So today every time Corbin has to pee we've been all gathering in the bathroom to watch Corbin do his business in the collection cup. Brian really does look up to Corbin and loves to imitate him so my hope is Brian will want to follow suit. That's right. My seven-year-old "typical" son is peeing in a cup to help his little brother learn how to do a urine test. And it's just another part of our day. No big deal.

Do you now see why I said we're not normal? Sometimes I look at our life like an outsider and I just have to shake my head and laugh.

Friday, September 24, 2010

Bullying: The Serious Side

Out of nowhere Corbin stated to me that he does not want to go to school on Monday. Corbin has always loved school and has never asked not to go. In fact I've heard many times from him that there shouldn't be vacations (I'm going to remind him of this when he's a teenager). So I knew something was up.

It didn't take much prodding for him to spill that he's been the target of some bullying at school. Up to this point, at the old ripe age of seven, we haven't had any of these kind of struggles. Corbin has a speech articulation problem which makes him sound rather immature and it also lends a hand in his struggles with reading. Up to this point none of his peers cared. Well I guess it's a whole other ball field in second grade.

He's had a peer laugh at him while he was reading and tell him that he should be in Kindergarten. Someone wrote a note and passed it to him that said "You're stupid". Another peer told him he should be in "Level A in Rocket Math" though he's already in Level D (and quite proud of this fact).

I hate this. I hate that Corbin truly tries so hard to learn things that are difficult for him only to have someone laugh at him. I hate that he has this speech problem because he is very intelligent with an above-average IQ. I hate to think what effect these words and actions could potentially have on my sensitive little boy. I hate bullying.

This isn't my first rodeo with bullying. I've actually had a strong passion for this subject for a couple years now and have done a few different papers on the topic. My passion began when my beautiful baby sister tried to end her own life.

One night a year and a half ago I was awoken by the phone ringing. It was my sister crying hysterically that our baby sister had been life-flighted to a nearby hospital. There wasn't much details about what happened but I immediately headed out my door to make the 90 minute drive to the hospital.

I arrived to find my then 13 year old sister in a non-responsive state. She was essentially in a coma. During this time we were told many theories on why she could be in this state. One of them was the possibility of an overdose. Not a single one of us believed that could be the case. Not our Lucy. It was a full day before she started to respond to us and we started to get answers.

It was no secret that Lucy had struggled more in school than her older siblings. She had to work hard at school because of a non-verbal learning disorder she had. It took her more dedication and more time than the average student to learn new subjects. It was frustrating for her, as one would expect it to be.

What we weren't aware of was the fact that she had been the target of bullying for years. A certain group of people loved to call her a "retard", "stupid", and when those got boring decided to make rumors about her sexuality. She was excluded from certain "cliques" and made to feel like an outcast. After years of this treatment she began to believe what the other kids said about her- she felt stupid, worthless, and like there was no way her life was going to get better.

At this point she thought the only answer was to swallow a handful of over-the-counter medications found in my parents' bathroom.

Lucy's story isn't a rare story. When this happened, I thought it was rare. I'm a researcher by nature so after leaving the hospital I googled things like "teen suicide", "bullying suicide", etc. and found that this is more common than we all want to admit.

Bullying is a serious matter and it can have long-term consequences on all parties involved (the victim, the bully, the bystanders). Parents need to realize it's not just an unfortunate part of growing up and take it seriously. Schools need to make strict policies on the matter and follow the policies. Most states now have laws against bullying but not many people are aware of that.

This post started as just a "woe is me" type but I realized the potential to show the serious nature of bullying and spread a bit more awareness. A big thank you to Lucy for allowing me to share her story- I love you Lucy!

A great resource, that I also used for a presentation this past summer, is the website Stop Bullying Now! Make sure to check it out!

Wednesday, September 22, 2010

Intervention Plan

Everyone is still very interested in our recent trip to the Thoughtful House and wanting to ask a gazillion questions. And I'm still not bored talking about it! In fact I love when someone asks me about it. I'll tell you every single detail if you have some time on your hands.

A few people have been curious about what we're actually changing or adding into our lifestyle. Maybe out of curiosity. Maybe looking for something they haven't tried with their own child. Maybe just because they are family and want to know if they can chip in in any way.

So here is our four week intervention plan. Each week we add a couple new things and/or take out a few things. It makes it seem so much more manageable. At the end of the four weeks we will have a phone appointment with Lucas Ramirez and see what the next four weeks will entail.

**I have removed the actual Intervention plan as I didn't want this information to be used on other children without supervision of a doctor. Brian's interventions have been specifically designed for him. Always check with your doctor before making changes in your own child's supplement plans or diet plans.**

During the next four weeks we will be changing his diet by going completely dairy free, soy free, and limiting his protein (only because he's receiving about double the amount he should at this point). I will be supplementing his diet with whole food supplements.

For supplements we will be using a multivitamin, zinc, magnesium citrate, fish oil, Vitamin C and calcium. We will also be performing a bowel clean out in the third week of treatment.

Growing up With Autism

This week an article from The Atlantic has been circulating through the autism blogger world. It's about the very first child ever diagnosed with autism, Donald T. And where he is today.

That's a subject that I like to pretend doesn't exist.

In fact I clearly remember the very first time I ever thought of Brian as being an adult with autism. It was a full year after his diagnosis and I was busy at work with my father. That summer I had been helping him with his care-taking business by mowing with him on the weekends. We were at this wonderful location right on a cliff high above the ocean. It was smoldering out and we had stopped to take a break. He asked me if I had thought about steps to take to ensure Brian had financial security when he was older and what the options were for his living arrangements. I just remember feeling like I couldn't breathe and my heart paused for a minute. It was the first time it ever occurred to me that I may not be able to "cure" Brian. Until that point I was 100 percent positive that all of my hard work was going to make it so he would have a fully-functioning adult life. He would just be a little quirky but otherwise totally "normal".

Two summers ago the whole theme of our annual Autism Family Retreat Weekend was "Adults with Autism". It was another wake up call for me as I learned about living options in Maine, the adult transition, and special-needs trusts.

As we just passed our four year "anniversary" of the diagnosis I am getting more and more comfortable with the idea that he is going to be an adult with autism. I can't stop it from happening. And I'm going to prepare for that.

Back to the article that spurred this train of thought- Donald's success seemed to come from the fact that he seems to be quite high-functioning (eh- not so for us), a mother who would do anything for him (check!), a supportive community (check!), and the fact that his family was loaded (ummm....yeah, we're screwed on that one). So we've got some of those qualities, so I will hold on to some hope for Brian's future as an adult with autism.

Saturday, September 18, 2010

Ten Things

Ten things I learned on this trip....

10. Noise-cancelling headphones were the best investment I have ever made. Brian wore them for the entirety of three of the four airplane rides.

9. Brian can really swim! At home I'm so quick to put his life jacket on so I don't have to have an anxiety attack. But we didn't bring ours and he was swimming short distances from the side of the pool to me and then back again.

8. When saliva is mixed with a teaspoon and a half of medicine it sure can go a long way. See the picture. All over me, the towel, Brian, and the bedding!

7. For the most part people really are kind.

6. You should ALWAYS be prepared for illness- even when travelling. Maybe even more so when travelling.

5. Having a child with special-needs makes you a target for religious advice, on top of all the parenting advice. I had a stewardess tell me I should read him scriptures.

4. That I may harbor a secret hatred for "perfect families". In the Austin airport I watched a young mom with four beautiful children all under the age of six. The whole family was beautiful and so well behaved. I heard two business men walk by them and say, "Wow those kids are so cute- did you see them?", just as my son ran in front of them yelling "digga-digga-digga" and they nearly trip over him. They didn't say anything about how cute he was.....

3. Cartoon Network sucks. It was the only channel in our hotel room that had cartoons but at six in the morning they only play anime cartoons. Brian wasn't impressed that I said no and he eventually settled on Saved by the Bell.

2. That little plug in the bath tub that doesn't come out all the way can actually come out. And it can come apart to five different pieces.

1. I can do it! I'm proud of this trip. I had a lot of anxiety and worries about travelling by myself with Brian. And we were fine. We succeeded.

Thursday, September 16, 2010

Seriously?!? WTF?!?!

So here we are in the Atlanta airport. It's huge. It's noisy. It's confusing. It's most likely the worst place for a person with autism to be. And Brian is not happy.

Funny thing is we navigated from the A terminal to the B terminal with no problem- he enjoyed the escalators and the moving sidewalks but when we made the final turn to our gate he lost it. I don't know what it was for sure. I have many theories- he simply wanted to go the other way, he just then realized we were going on another plane, he was confused and thought we were at our final destination, he was just still tired from being sick the day before, he saw something down the other aisle he wanted? I don't know. I do know that I was carrying four items at this point and it just simply wasn't an option to continue exploring the whole airport. I couldn't leave our stuff- you know how airports are. Plus they were telling us every five minutes we were in the orange threat zone for some reason or another. And I couldn't carry it all for long periods of time.

So we're only two gates away from ours and Brian stops dead in front of me with his hands up to me crying. He wants me to carry him but I honestly can not do it with the luggage I had. I stop and pat his back and try to console him that we are almost there. We're standing like this in the middle of this busy aisle when an adult man walks past us, looks at Brian, and MOCKS HIM! I'm serious- he made a face and said "Waah! Wah! Waah!" as he was walking by.

So here I am with a crying six year old, four bags, and some asshole making fun of my child. I turned around and said "Hey!" and gave him the look of death but he didn't even turn around. Oh, how I wanted to chase him down and pummel him. How I wished I had another adult with me at that time to stay with Brian while I ran after him screaming expletives. Honestly, I was in shock! What the hell?

So that was my first adult bully I've dealt with. And how I wish I really could've dealt with him.

Day Two- Diets and Dentists

So day two started off wonderfully. Brian woke up smiling and with absolutely no fever. He drank some of the Pedialyte that our coordinator had so graciously brought over the night before and then stuffed himself with four pieces of leftover pizza. All signs pointed to a much better day.

We arrived at the clinic just in time for a blood draw. Always a wonderful way to start the day. It didn't make Brian happy but I will say it was the least traumatic of all the blood draws we've had done. It helped they had a television in the room with a whole binder full of kid-friendly (autism-friendly) movies. He cried and kicked but it didn't take four people to administer, like it has in the past. He also remembered he was suppose to yell "Ouch!" but only after the procedure.

Following that we went on to our appointment with a dietician, Kirsten Bell. I think this may have been my favorite appointment as I knew there was work I could still do with the diet and she really helped me understand HOW to cook certain things and HOW to get him to eat things and just gave me a whole new bag of tricks to try.

It was very interesting, and scary at the same time, to see how she had analyzed the food diary. Brian is, on average, consuming about double the amount of protein he is suppose to have, less calories than he should, just about the right amount of fat (but not enough good fat), and pretty much zilch on many essential vitamins and minerals. I guess none of it really surprised me, but still, to see it on a graph and in black and white, it feels much more urgent to address.

We talked a lot about regularly cleaning Brian out.....which came at a good time because as of right now he's on day five of no bowel movement. It was the first time I had talked to a professional about the fact that I don't feel like he even knows how to get his bowel movements out, that didn't look at me like I was losing my mind. See, when Brian has a BM he'll be in the bathroom trying to go, but he's always clenching, instead of pushing. I should apologize for too much information at this point, but if you are a regular reader I think we're past those fake apologies. :)

Leaving the appointment we had decided to continue with GF/CF but to make sure we are also soy-free. We're adding whole-food supplements to help with the lack of fruits and vegetables. And we'll be using Natural Calm along with Magnesium Citrate to help with the cleaning out.

Plus I left with so much information- what are healthy oils? Which oils can be used for what kind of cooking? Which vegetables and fruits NEED to be bought organic and which ones can slide? Where else can we get carbohydrates (another lacking area for Brian)? And so on and so on.

Last appointment of the day, skipping over some other assessments, was with the dentist. I always get so nervous before the dentist. I know that brushing teeth can be a big fight sometimes and I honestly often feel guilty that I'm not able to get in there like I should as often as I should. But it was our second dentist appointment in a row that we were told everything looks perfect! Besides the bucking and gapping of his top front teeth thanks to his thumb-sucking.

Leaving the Thoughtful House I felt excited, hopeful, and really happy that I had made the decision to go! We left with a nice, clear treatment plan that slowly adds in the supplements and diet changes. No one is expecting us to change everything overnight. I felt like this is what I needed- it's really recharged my battery.

Wednesday, September 15, 2010

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.

Monday, September 13, 2010

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.

Sunday, September 12, 2010

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.

Friday, September 10, 2010

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).

Monday, September 6, 2010

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.

Sunday, September 5, 2010

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!!

Wednesday, September 1, 2010

Evolution of a Smile

Corbin's smile on Friday.

Corbin's smile on Saturday.

Corbin's smile on Tuesday.