Tuesday, August 31, 2010


You know those parents? The ones that teachers dread seeing walking down the hall? I think I may be becoming one of those parents.

Not only did I coerce Brian's regular-ed teacher to schedule five times for us to visit and work with her before school started, I also did it twice to the special ed teacher who was only hired a week and a half before school started.

Not only do I attend the first day of school with Brian every year (thus far) but I also do a weekly observation- though sometimes it may only be a half hour.

Not only do I ask for regular communication, I also made a communication journal to be completed by the teacher every day.

Communication is key to success for Brian and I truly believe that everyone needs to stay on the same page when working with him.

So far, all those who work with him, applause me on my commitment, communication, and involvement. So far they don't think of me as "one of those parents". So far.

Monday, August 30, 2010

1st Day of School

Today was the boys' first day of school- Brian in Kindergarten and Corbin in second grade.

For the most part I think it was a successful first day.

First I lost my child. We had to split up at the entrance for them to each check in for lunch (hot or cold?) and I expected Corbin to go out to the playground after. I waited outside for about five minutes and he didn't show. I then did three laps around the school asking everyone if they had seen Corbin and no one had.

About another ten minutes later he nonchalantly walked out to the playground. He had decided to go to the cafeteria (first time EVER in the new school by the way) to have a second breakfast.

Brian had a few meltdowns- he really needed to have red on every object (each one was suppose to be one color) but it wasn't allowed so he broke the red crayon. Then that felt so satisfactory he really needed to break all the crayons in the package. You can't have one different from the others, you know?

Corbin liked his day besides the fact that his teacher told him he could only bring one snack item every day (really?) and that a "bully" (his description, not mine) tried to touch him with his hands that were covered in paint.

I'm not going to make any predictions this early in the game, but I'm trying to be positive about the school year.

The best smiles came at the end of the day when we got sorbet to celebrate surviving another first day!

Friday, August 27, 2010

Kindergarten, Try #2

School starts on Monday for my boys. The summer went by too fast, as usual.

Brian's regular ed teacher has been amazing at scheduling a bunch of times for us to come in before school started for Brian to get acclimated to the new school and new room.

Throughout our visits I was told by his teacher, the principal, an ed tech, and the speech therapist how well Brian was doing. They were all amazed at his gains over the summer. Here, I didn't really think there was a huge gain, but I also am with him every day. Sometimes you don't notice the small gradual changes unless you are away for a while.

Hearing everyone tell me this made me feel extremely proud. I have been working hard this summer. We started a Handwriting Without Tears program and did some TouchMath. I made social stories and games to work on answering questions. We did a lot of outings. We played games using sight words. We used a calendar regularly. We read books over and over again. I sat through a lot of tantrums.
But most of all I never give up on him and I believe with every fiber of my being that he can learn anything, if I just find the right way to teach it.

Last year wasn't the greatest education-wise and I'm hoping it won't be a repeat of that. We have a new ed tech, new special ed teacher, and continuing with our private SLP & OT out of school. I am hoping these changes will make a difference.

Back to school, here we come.

Thursday, August 26, 2010

One Wish

I have so many hopes and dreams for my future, Corbin's future, and Brian's future. But if it came down to it and I could only have one wish it would be that I would never ever have to clean up poop again.

I'll spare you the details.

Monday, August 23, 2010

Sanity? Check!

Today we visited our pediatrician to see if he had any great ideas for us to survive our flight to Texas.

Though he didn't really give me any new ideas it was nice to hash it over with someone. It also gave me a chance to talk to him about our trip and he seems really excited about it. He's come such a long way from telling me to never try diet changes four years ago.

So on my survival checklist at this point in time are:

* DVD player
* Leapster
* snacks, snacks, & more snacks
* new toys
* old favorite toys
* noise-cancelling headphones
* gum
* stroller (to help in the airport- didn't think of that)

and last option

* Benadryl

We're going to do a couple trial doses of Benadryl as I've never given it to him before and I want to make sure he won't have a paradoxical reaction to it. Yet, something about that feels so wrong to me. Here I fight to never give either boys any type of medicine unless really desperately needed and now I'm just going to give Brian some to see if it calms him down at all.

If we do see him getting more hyper with Benadryl, which is fairly common, then he will give us an anti-anxiety script but again we'd have to do some trials before just giving it to him on a plane! I'm hoping it won't get to that point but it would be nice to have a back-up plan if we encounter some horrible anxiety-induced tantrum during our travels.

Saturday, August 21, 2010

To Infinity and Beyond

It all started with me asking Brian to pick a pair of shoes from the Payless website. I didn't really expect him to care to point to any but he immediately pointed to a pair of Buzz Lightyear shoes. I said, "Oh, you want Buzz?" and he answered "Buzz Lightyear". Clear as day. I had expected him to repeat "Buzz" after me but I was amazed he added Buzz's last name to it.

Being so incredibly happy with his speech I immediately clicked on the link to buy him his dream shoes for school. Only to find they didn't go up to his size.

I was bummed. I called the closest Payless only for them to tell me they didn't have them in his size either. Feeling defeated I posted a "woe is me" type of status on facebook.

By the next day I found that two of my friends had been searching all across Maine and the internet looking for Buzz shoes for my little boy. One had put it as her own status asking all of her other friends to join in the search. Here, I had given up on the shoes yet others were looking all over the universe for them!

Some days it can seem like humanity is at a loss. Sometimes it seems no one looks out for anyone but themselves. Sometimes it seems like we've become a cold population with racism, sexism, and every other "ism" there is. Then things like this happen. It's actually one of the gifts that has come along with autism- I am always amazed at how people will come and help if I just ask (still working on that "asking for help" piece). I am really lucky to be surrounded by such a great support circle- in real life and online.

In the end I was actually the one that found a pair on Amazon, not the original pair he pointed to but they have Buzz Lightyear on them. Hopefully they make it here before school starts so he can arrive through the doors in style.

Friday, August 20, 2010

Preflight Anxiety

Things are starting to get on a roll for our trip to Texas next month. I'm getting excited but I have spent the past few nights tossing and turning thinking about the flight to Texas.

I haven't done much traveling since having the boys. We took a road trip with my parents literally days after Brian first got his diagnosis. I was stuffed in the backseat of an Envoy with two carseats occupied by a two year old and a three year old. Surprisingly it was a really good trip- thank heaven for a portable DVD player.

The only other real lengthy trip was a trip to Boston two years ago. We drove an hour and a half to an Amtrak station and then took the train. That was a good choice for Brian. Obviously because he loves train but also the seats were a bit more roomier than a plane and there was more freedom for movement. The ride home he was a bit cranky but it had been a long trip for him.

Car rides can be a problem- generally the furthest we go is about an hour and a half and usually he'll do fine on the trip to wherever we are going. It's the way home that he becomes antsy and grumpy and fidgety.

Brian's been on a plane before but it was a four-passenger tiny plane for fifteen minutes to get out to the island where his Dad lives. And he hated it.

I know a commercial plane is obviously going to be a much different (and better) experience for Brian. Yet, the length could be a problem. Brian doesn't sit still for anything and the long corridor- that is going to be calling his name. He loves hallways, corridors, and such- he loves to run up and down them repeatedly. Brian loves to make loud noises and he loves to jump up and down. Brian has no understanding of personal space.

I just have this sinking feeling we'll be the next family you see in the news suing an airline for kicking us off a plane.

Tuesday, August 17, 2010

I Declare A Thumb War

Standing in line to check-out a woman looked down at my son and said, "What are you doing with that thumb in your mouth? Big boys don't suck their thumbs!". I quickly turned around and replied, "This big boy does!"

I am so tired of the thumb-sucking subject and I certainly don't want unsolicited advice about it from people who do not know my son.

He's been thumb-sucking since he was in the womb though it did get markedly more obsessive about the same time he drifted into this world of autism. The debate about his habit began when he was four.

Everyone was thinking about the upcoming year when he would go into kindergarten and the fact that thumb-sucking could be made fun upon by his peers. Seriously? You are worried about the thumb? Have you noticed his high pitched noises he likes to make for fun, his flapping, his abundance of energy that makes it so he can't sit in a seat for too long, or maybe the little fact that at that point he really wasn't talking at all? I think he's already going to stick out like a sore thumb (pun intended).

Well, we went for it anyways. I could agree with the argument that it was starting to get in the way of his speech. He was trying to talk around it like kids do with their binkies.

So we started with that gross-tasting ointment you put on your thumb to try to deter them from sucking it. Brian didn't mind it. He knew if he just stuck through the initial licking of it the taste would go away.

Following that we tried thumb guards- which reminded me of some medieval torture device. My kid was too smart for those. Instead of chewing the material around the thumb like I thought he would, he chewed the strap that would hold it in place and once it was broken there was no way of fixing them.

The ABA specialist did try another program that if he wanted to suck his thumb he would ask for it and get five minutes in his bed to suck his thumb. Guess what he was asking for all day long? He didn't care if he had to be in his bed to do it.

At that point everyone gave up. I was glad. Trying to make him not suck his thumb was only making him more stressed and wanting his thumb more. In my opinion I was glad that my anxious autistic child had a way to soothe himself that was always available. I know a lot of children like him that don't have that, they can't bring themselves back down that easily.

So, here we are at six years old and still sucking his thumb. At least at this point if I tell him to put his thumb down when he's trying to talk or I need him to use both hands he'll do it without a fuss. Other people still find it really annoying but for me, it's just a part of who he is. And those other people can go suck it (another pun intended).

Monday, August 16, 2010

A Day Of Laughs

I caught so many great things on my camera today.

First Corbin came down the stairs wearing a ninja turtles costume, a monster hat, one hulk hand, spy gear night goggles & binoculars, a dinosaur slipper, and a flip flop. It was his "monster" costume. He went outside and played in it for an hour or so. This kid never ceases to crack me up and I just love his creative side.

Then Brian helped me bake and I caught his happy whole-body flap on video while we used the mixer. I've seen this a million times but for some reason capturing it on video has made his happiness and joy seem even more apparent to me. So...yeah the joy is coming from a spinning electronic device, but whatever makes him happy makes me happy.

And the last laugh from the day- Brian was in his underwear ALL day long (I'm sure you noticed in the above video) and he kept trying to go outside. All day long I told him he needed to put clothes on and all day long he told me no. Finally at 7:30 at night he went into the laundry room and came out in this ensemble. His jogging pants with my shirt. Looking good, Brian!

Sunday, August 15, 2010

Rule #1

First rule of being a mommy to a child with ASD:
Always make sure you can hear your child at all times.

If I had remembered this very important rule, I probably wouldn't have turned up my music just a little louder while I was cleaning the kitchen. I may have heard him removing the bedding from his mattress, then removing the mattress itself, and turning his bed frame into a very nice train table. Nevermind, that there's an actual train table lying underneath where the mattress is now. It would've been much too easy to just use that one.

Thursday, August 12, 2010

Brian's ABCs

I got a new little flash-drive video camera for my birthday if you are wondering why there are back-to-back video posts! Brian loves the camera- it has one of those flip screens so he can watch himself while I record him. This was the first day I had it and I asked him to sing me a song. Before this day he has NEVER just started singing after a request like that- he would need a request for a specific song.

I'm always trying to explain to people who don't know Brian "in real life" how he can do movie phrases and sing songs yet have very, very poor articulation- this video shows it more than I could ever explain it. Here's my smart boy singing his ABCs. Enjoy!

Tuesday, August 10, 2010

Waving, The Simple Things

Yesterday was Brian's last session at Freedom Riders for the year. I had to make the difficult decision to not do the fall session as I knew we would only end up missing half of them and I didn't want to take someone else's spot that could make it every time.

I've seen Brian do some great stuff on those horses this year but nothing was better when he started looking for me in the waiting area and waving to me! The first time he did it my eyes brimmed with tears and the subsequent times I have just been ecstatic and giggling (you'll hear it below!). It still blows my mind, how something like WAVING, can just send me over the edge with joy!

Sunday, August 8, 2010

I love me.

Yesterday was my birthday. Last year on my birthday, I dedicated a post to myself, and I think I'll keep this going as a tradition.

I am now 28 years old. I look at my life and though I'm in the midst of changing a few things I have to say I am extremely proud of who I am and where I am.

The odds aren't there for most of us young mothers. Add it up. I was only 20 years old when I had Corbin. Take that and add in congenital heart defects, feeling trapped in a domestic violence situation for six years, then single-motherhood (which is a breeze compared to the previous situation), and autism and life hasn't exactly been easy.

But this isn't meant to be a post that is "woe is me"- it's to celebrate me. I think some people in my situation would shut down but I just don't stop fighting. I have grown so much in the five years I've been a single mom and found strength in myself that I didn't even know was there. I am proud of my family and how my boys are growing up. I am proud of myself for going back to school.

I am feeling great! Life is good.

Thursday, August 5, 2010

You Have To Love This Kid!

I read the book, "Oh, The Places You'll Go", faithfully every day for the last few months to my womb when I was pregnant with Corbin and I am positive that he recognized it after he was born.

It's hard to believe that at one point I worried as much about his future as I do with Brian now. Corbin was born with three congenital heart defects and spent much of his first few months in the hospital, suffering from congestive heart failure. He had heart surgery when he was six weeks old. Then, on top of that, as he developed I realized he wasn't talking. Ironically, I was so worried about autism. I laugh now at such thoughts. Corbin started speech therapy at twenty months old- he slowly started talking. He still struggles with his speech at seven years old, but now it has nothing to do with vocabulary and everything to do with articulation (those damn Rs).

His articulation struggles sometimes gets in the way when he's reading and writing and he gets easily frustrated about it but all I can see is how far he's come and how determined he is. His articulation makes him seem younger than he is and some well-meaning people try to treat him as if he's only as intelligent as he sounds to them. His IQ test they wanted him to have before Kindergarten, is one that I love to wave around at IEP meetings to remind everyone of how smart he is (117, thank you very much) and how they should be treating him.

I know it's early on in his life to call it but I just see this kid doing great things in the future. He has so much going for him- he's smart, creative, compassionate, charismatic, happy, and hilarious. He befriends everyone and shows tremendous empathy for others. He's determined and wants to learn about everything- it's not odd to find him in his room reading age-appropriate encyclopedia type books or working in his workbooks. He understands math without it even being taught to him (he may be following in Mom's mathlete footsteps).

Corbin has been put into this unbelievable difficult position of having a sibling with a disability. I am so proud of how he has dealt with it thus far. How he is open to discussing his feelings with me, how he sticks up for his brother, and how he enjoys educating others about autism ("au-sissm" in Corbin speak).

Honestly, I could go on forever about this kid. And it's about time I did a post honoring what a great kid he is! Love you bunches, Corbin!

And will you succeed?
Yes! You will, indeed!
(98 and ¾ percent guaranteed.)

Kid, you’ll move mountains!
-Dr. Seuss

Wednesday, August 4, 2010

Let Me Take A Bow :)

On a brighter note I was given two blogger awards a few days ago- thanks Lyn! Perfect timing for a lift-me-up!

I'm not sure how versatile my blog is, but I can definitely agree with the beautiful part. :)

The rules to accepting these awards are to pass them on to other bloggers and then share things about yourself that others may not know (it started out as 7 bloggers/things- but I'm cheating and only doing 5).

Autism's Bitch
Blessed & Blighted
Mainely Musings
MOM- Not Otherwise Specified
Aurora & Alex

Five Things You May Not Know:

1. In high school I was a mathlete. Seriously, I competed nationally at math tournaments and was always had the highest score for all four years of high school in our division in Maine.

2. I don't have a cell phone. Weird, right?

3. I have two tattoos- one that I designed on my back that represents what I feel about my children- "my love, my sunshines, my everything" & the other is an autism awareness ribbon on my foot. I have plans for a few more.

4. I grew up on an island in Maine- it had a population of 1200 people year round. There were nine people in my graduating class.

5. I once led an impromptu round of "Frere Jacques" with several friends at the top of the Eiffel Tower. The best part was when a group of very cute Italians joined in with us.

I'll Cry If I Want To.

I've been avoiding my blog for a few days now. I believe myself to be in the midst of a breakdown, a mental one. I'm so overwhelmed with thoughts and emotions I didn't know how to start this post and I couldn't bring myself to blog about anything else until I got this out there.

We had the meeting to go over the re-evaluation Brian had done at the beginning of July. If you are "friends" with me on Facebook you know what day that was because I came home and promptly stated "AUTISM SUCKS" on my status. I left the evaluation just feeling defeated, I guess. Honestly it wasn't anything I haven't heard before yet emotionally I felt like it was the first time hearing my son had autism. Not to mention B's father was there- the first meeting EVER that he has attended and he continues to be ignorant about what autism is and to even agree that B has autism. This month makes it FOUR years since Brian was diagnosed- I'm tired of hearing you are in denial. Grow up and help me raise this child. Another reason this day was hard, I think, was that it included an IQ score- I hate those things. There are no IQ tests that are geared towards a non-verbal child with autism. I was sitting there and I saw how sometimes he just didn't answer you, because he didn't want to. I know he knew them because he does it at home with me.

So I left the evaluation, cried in the bathroom, cried in the elevator and then pulled myself together to ride home with Brian's case manager who had come with me. Then I cried for hours until I fell asleep.

Since then I cry every time I think of the evaluation. I cry when I try to tell someone about it. I cry when I think about autism. I cry when I think about the upcoming school year. I cry all the time.

Today I was talking about school with Brian's speech therapist and his OT. They really don't want him to go back to the school district he was in- me neither. But what are my choices? None of the public schools in the area are particularly on top of this whole autism thing. There are two private autism-schools in the state- both an hour away and both very ABA oriented. Hey, I think ABA does wonders and I wouldn't mind it being a part of his life again but I certainly don't want his whole school day to be revolved around it. I don't want him to ride a "bus" two hours every day. We could move, and that could very well be an option, but the only people I truly trust to watch him are our family members who all live in this area. What would I do if I NEEDED a couple hours for a break? Home schooling came up as they both agreed they believe that is the best possible place for him to be. I agree. I have said for years I wish I could home school him. I know for a fact that I can get more out of him than someone who isn't truly invested in his success. Just look at the fact that I know he knows all of his letters and the sounds they make receptively and expressively and yet others that work with him thinks he only knows 10 letters.

But the home schooling conversation only made me cry more. I don't have the resources to do it- I have to keep going to school so I can have a better job so I can provide for these two beautiful boys.

Okay I got it out. Maybe this will help me move out of this crying stage I've found myself in because it's getting really, really old.