2010 Recap

It was a year with ups and downs.

Brian had his major regression at the beginning of this year and couldn't seem to handle the full-inclusion classroom like he had at the beginning of the year.  It was a hard start to the year, for all of us.  Probably the worst for him, but I certainly felt like I was hit by it pretty hard.

Corbin had a fun year- his first year not doing tee-ball and doing "real" baseball instead.  He also joined Cub Scouts this year.  He also decided all girls, beside his mother, had cooties during this past year.

We had a huge fundraiser for the Autism Society of Maine prior to the walk and our team, which grew to 43 members, gave the largest donation at the walk.  We attended the Autism Society of Maine's family retreat for our second year in a row and loved every minute of it.

I completed 41 credits in 2010.  Gives me a headache just to think about it.  Each semester I ended up on the deans list. And yes I am very proud of myself.

Brian received a Bright Eyes medical grant to go to the Thoughtful House in Texas.  Him and I traveled there in September.  We changed his diet around and implemented a boatload of vitamins and supplements.  We've seen some real changes this year and if I have to choose one thing from 2010 that I am grateful for, it would be this grant.

I had a dear friend be diagnosed with breast cancer.  A sister that had to have a small tumor removed from her inner ear.  And dealt with another round of mediations with the ex (but also celebrated FIVE years of being out of that relationship this year).  Those were the worst parts of 2010.

Brian's been excelling in his full-inclusion classroom this year.  Corbin tested off the charts for math.  My sister and brother-in-law bought their first home.  Josh and I celebrated three years of being together.  I sang out-of-key at karaoke a few times this year.  I finished a lot of good books.  I was surrounded by friends and family.  Surrounded by lots of love, laughter, and hugs.  Those were the best parts of 2010.

2011 will bring another trip to the Thoughtful House and my graduation.  Reasons enough to believe the next year is going to be a great one.

Happy New Year!

The Elusive Christmas Card

Comparing this year's posts to last's, it's obvious that I have been avoiding the subject of Christmas. This was the first time in four years that I did not have the boys for Christmas, and to say I was a bit pissed bummed about it is an understatement. Alas, it's one of the unfortunate things families must deal with when the parents are no longer together.

The boys will be home tomorrow and we will be able to start some of our own traditions although we won't be celebrating Christmas until New Years Day, as Josh has to work during the week.

To get myself out of this funk, and into the holly jolly goodness I know I possess inside let's revisit the elusive Christmas card from years gone by.

*2006*

One of my favorite Christmas cards. Bought the boys their yearly Children's Place sweaters and hats and we did a couple photo shoots by the water. The first day was in Harbor Park and I took pictures of the boys, they were both super cooperative. The second day I had my sister come with us to the lighthouse to try to get some family shots and Corbin was not having it that day. The one picture I used he's covering his face, all the others he was crying in. Oh, and this was also back in the day when I made all of my Christmas cards.

*2007*

Decided to not even attempt any sort of photo shoot, but we had the cutest photo booth pictures from the mall that I used. Once again, somehow I had time back then to make all of my cards.

*2008*

Photo shoots just never seemed to work out anymore. You know how some things get easier as children get older? That doesn't seem to apply to my children when it comes to getting one nice shot for the annual Christmas card. In 2008 I went for a collage look, ordered them, and was quite happy with the results. Never looked back to my hand-made card days.

*2009*

Attempted the home photo shoot, wrapped a giant box and stuck my two cute little gifts inside. Neither boy was too crazy about it. I did get a smile out of Corbin by bribing with a candy cane- never could get a smile out of Brian though. So instead I just took a picture from another day and stuck it on there so everyone would be treated with at least one of Brian's famous smiles.

*2010*

Bought the boys the cutest Christmas pajamas that had their names on them. Though they should have been a Christmas Eve gift I gave them to them early because....well you know, I thought it would make a very cute Christmas card. Three different nights of trying to get a shot and could never get it. Finally I gave up and decided to go with a collage once again. I realized so many of our pictures from the year were of toothless grins so decided to play with that. Everyone seemed to get a kick out of it this year.

I hope everyone had a wonderful holiday, no matter what you celebrate, and I can't wait to share more with you when the time comes.

Intervention

I'm thinking about staging an intervention for my child. He has a problem. We all ignored it for so long, but it's getting harder and harder to not notice.

He has an addiction problem.

He gets through the day alright, but he's fooling everyone. As soon as he gets in the car to go home he starts chanting and rocking thinking about his soon-to-be fix. If we have to make a stop before we go home, he gets incredibly anxious and gets the shakes flaps his hands.

When we get home, even though it's rarely above 35 degrees, he'll start stripping down outside before I even have the door unlocked. He rushes around inside with this mad look in his eyes and a slight tremor through his body while he puts all of his school gear away in the appropriate places.

Then without a glance backwards he is racing up the stairs to ease the withdrawal symptoms that have become increasingly unbearable throughout the day. His whole body loosens and that tense feeling disappears. He smiles and he laughs. He feels normal again.

He's playing with his trains.

Blog Gems: My First Post

Jen at The King and I has been getting everyone to "air their archives" by posting previous "blog gems". She gives prompts and encourages bloggers to link to an old post.

Right now the prompt is to share your very first public post. I honestly didn't remember what mine was, so I went back to look, and how fitting that it was a post about poop. Dani G. will love this one.

An Afternoon Nap

Enjoy!

The Guessing Game

For the most part I think that I'm very patient. I think I have accepted things to just be part of my life and don't sweat the small stuff.

But some days I just wonder how long I can do it for.

Like searching all over for one particular train, not even sure which one I'm looking for because Brian can't tell me, but if we don't find it he's not going to get into the bath tub.

Then emptying the bath tub and having to wait and wait and wait, because he won't get out of the tub until the last drop of water is down the drain.

Then when reading a book to him I have to start over three times because he has another book he's holding and he wants us each to turn the page at the same time.

Then waking up in the morning to him running the trains on the railing of the stairs to watch them crash on the floor. It's so loud and alarming to wake up to.

Then making his scrambled eggs in a perfect circle shape because for some reason, unknown to the rest of us, he won't eat them any other way.

Then trying to calm him down when he's insisting he can't wear a zip-up sweatshirt AND a jacket. I guess it's the two zipper thing.

Then having the entire ensemble of snow pants, boots, winter jacket, hat, mittens on when he starts crying and pulling at his pants. Something's obviously not lined up right, but he can't tell me. And he's not going out that door to school until I figure it out.

All of these things need to be in a certain way, and none of them he can actually verbalize to me, it's so much of a guessing game.

I just wonder if the rest of my existence is going to follow this guessing game.

How Autistic Are You?

The very first book I read after Brian's diagnosis regarding autism was Karyn Seroussi's Unraveling the Mystery of Autism. It was obviously a hit with me as it continued my journey to find out more about biomedical treatments of autism.

Yet another piece that Karyn mentioned that spoke to me was this idea of parents perhaps having some quirks, and what happens when both parents do and they have children.

I thought about myself. I am one odd duck. I have social anxiety problems and there is a history of anxiety in my family, on both sides actually. I do this weird finger-flap when I'm in deep thought, I also find I do it a lot when I'm looking for something. I hate the phone. I hate when I don't know the exact plan when going somewhere. I was strangely good at math and was probably hyperlexic as I was reading well before I went to kindergarten (and never went to preschool). I may not be the most organized person but put the movies out of alphabetical order and it'll drive me nuts. I'm a major introvert and would choose to be by myself or with a small intimate group over a large gathering every time.

I thought Corbin had autism when he was little. He was a late talker, never babbled. He was obsessed with his train track and laid on the floor next to the track to watch the wheels turn out of his peripheral vision. He lined EVERYTHING up. He didn't like loud noises and the wind scared the hell out of him. He made fleeting eye contact. I actually came right out and asked his speech therapist at one point if he had the A-word.

But he was social. Very social. Knowing what I know now about autism, I laugh at the thought of Corbin having it. Yet there were all those little things, but things he was able to outgrow or adapt.

Funny I was so concerned about Corbin having autism. Then so clueless about Brian having it. Looking back now I think it was because Corbin was just a slow developer (besides gross-motor anyways) so I was always aware of his deficits- from the moment he was born with heart defects. Brian was NOT that way- he progressed just fine, totally normal. Then stopped. And having that perfect progression put me in denial that anything could possibly be wrong.

I know I talk a lot about how I think that environmental factors have played a part in the increase of autism, and in Brian's autism, but I will never say that I don't think genetics has a part. I think poor Brian got all of his family's quirks plus a crappy immune and gastrointestinal system- he got that "perfect storm" that made him so vulnerable.

Hot Dog Casserole

It sparked so much interest in my last posting, that it deserved it's own post!

My Dad was a single Dad when my brother and I were little and I always try to give him kudos for working long hours, taking care of us, cooking, cleaning, teaching, and playing. I never remember him being cranky or tired though I'm sure he had to have been.

One of his cuisines he made on the regular was his hot dog casserole. It was something he could make on a budget and something my brother and I would eat without complaint. It's super simple and it's become one of those recipes I fall back on when I'm tired or the kids want a "movie night".

I don't have exact measurements but it's cooked rotini pasta, hot dogs cut up, an onion chopped up, and mozzarella cheese. Mix it all together in a casserole dish. Cut a stick of butter over the top (or use some safflower oil like we do now!), sprinkle garlic powder, salt, pepper, and bread crumbs over the top. Bake at 350 for 20 to 30 minutes.

Classic kid fare. And at least it has an onion in it, so it's not all bad. At least that's my story, and I'm sticking to it.

Randomicity

The theme for this week's Special Needs blog hop is "Random Thoughts". I only speak in random thoughts, so this should be perfect for me.

So where to begin:

• I totally bombed my treatment practical today and I wanted to throw up, crawl under a rock, or throw something. Wish I had a time machine so I could do it all over again.


• On the ride home from school today Brian was chanting "Percy and Tommy, Percy and Tommy". Any idea what he went to play with as soon as he got home?


• Corbin told his speech therapist that Brian has been flapping his hands a lot more lately. If my 8-year-old is noticing, then it's time for me to admit that something has been off again lately.


• I really really really want a frozen strawberry margarita with sugar on the rim. Right now.


• Brian wrote a letter to Santa at school that said he'd help me with the dishes. I'll have to thank his aide for putting that in there- because I'm holding him to it.


• I cry easily.


• According to Corbin's teacher, he told the whole class yesterday the reason he is so good at math is because his mom has a ton of math trophies. Now the secret that I was a high school mathlete is out.


• We're going to eat my Dad's famous hot dog casserole for dinner and watch Teenage Mutant Ninja Turtles. Don't be hating.

Want to join in the nonsense this week? Click below!!

A Twisted Sense of Humor

I'm sure everyone has heard me talk about Corbin's interest in crying "It's not Fair!", when it comes to some rules that are different between him and Brian. Sometimes he is right.

Take for instance- watching things on television. I will admit, with my head hung in shame, that I sometimes will watch inappropriate things when just Brian is around, thinking he's not soaking it up or paying any attention at all. One should never, ever assume that about a child with autism, by the way.

The other evening Brian fell asleep at 5:00. No poking, prodding, shaking, tickling could wake him up. Of course he was up at 11:00 ready to play, the same time I was just snuggling into my bed. If I'm still awake at that time you can almost always bet I either have my television on Family Guy on Adult Swim or the Chelsea Lately show. I warmed up some of the night's dinner and invited Brian to eat it in my bed, and Family Guy was in the background.

We were good like that for a few minutes and Brian seemed totally involved in his food. There was a hilarious, completely uncalled-for joke, and I was giggling inside, when Brian let out a loud chorus of chuckles. I looked at him and he was completely engrossed in the show.

Still, being the lazy, tired Mom I was, I didn't change the channel. Seconds later, Stewie was punching Lois, and another large round of laughs from Brian.

He definitely gets a lot more than he lets on.

And I'm a bit concerned that he finds it funny when Stewie beats up his mom.

And yes, the television went off at that point.

Did You Know That Autism is on the Rise?

This semester I spent time volunteering at Coastal Opportunities, which is a wonderful non-profit organization, that provides living supports, day-habilitation services, vocational support, and so much more to adults with intellectual disabilities and/or autism. I could go on forever with how wonderful I think they are but that's not really the cause of this sporadic posting.

I'm going to do a presentation tomorrow at school about this service and this population and I was researching more into our state's resources as to why in the world there are waiting lists for such valuable services and I stumbled across this report that Maine put together on Autism last year. Particularly this jumped out at me....

In 1984 there were fewer than 40 individuals identified as having autism in Maine. To provide services to them, the 111th Legislature passed the Autism Act of 1984. Today, in 2009, our schools serve 2,222 students identified with autism.

And then in a document titled, "Realities of Living in Maine with A Disability", had this chart....



I know, old news, right? Autism is rising at an exponential rate. But it still gets me every time. Takes my breath away, want to pull out my hair, and just scream, "Why does no one notice? Or care??".

Our Own Language

The longer time I spend with my kids, the stranger I become. One of the side effects of this phenomenom is how our language has evolved into one that outsiders may not fully understand.

For example:

Wonko (noun): silly, hyperactive person- derived from the British term, wonky.


"Corbin, stop screaming about your boogers at the top of your lungs! You are being such a wonko!"

Peenee (noun): a slang word, invented by Corbin, for the male organ

I don't think there is any need to use this one in a sentence. I think you get the idea.

Lubba-Dubba-Doo (noun): love, hugs, and kisses


A friend of mine's grandmother always would say to him (and all other family members), "Give me some of that lubba-dubba-doo". I liked it, so I stole it.

Snuggle-buggle (noun): one who likes to cuddle


"You are being such a snuggle-buggle and I love it," said affectionately when Brian climbs into my bed at five in the morning.

Easy-Going Brother

I'm always being asked how Corbin and Brian get along. What their relationship is like. I can't say anything bad about it. In fact, they get along better than most any other siblings I've seen. I always thought part of it was that Brian was pretty easy going. He usually won't fight Corbin over a toy. He'll follow Corbin anywhere. Granted, ninety percent of the time their play is only parallel. They're each playing their own thing. But they are always in the same room together and respecting each other's space.

Last night, my beautiful, wonderful, sweet three-year-old niece spent the night. The boys love her and she loves them but they really haven't spent too much time together, at least for long periods of time.

As the evening went on I started to hear a lot more "Brian Be Quiet!" when we were all trying to watch Elf and Brian was jumping back and forth, flapping, yelling "Eeee, Eeee, Eeee". In the bath she didn't want him to put the train tracks on the side of the tub (which he does for every single bath) and it was causing some big time stress for Brian. When Brian made a pillow crash pad on the floor next to the couch to do some repetitive jumping, she wanted to lay on the pillows. (DISCLAIMER: Sabrina, Scarlett is absolutely wonderful and don't take this the wrong way! I know how you overreact!)

None of these things are a big deal , but they made me realize how much Corbin does deal with. I just don't see it and maybe he doesn't either, because it's been this way for years now. It's just part of our life.

I honestly don't hear Brian making his loud yelling noises if I'm concentrating on something else. Corbin likes to play Bakugans in the tub but he can do that with train tracks on the side of the tub, because they are just always there, and he most likely barely notices it now. When Brian has set up some sort of deep pressure obstacle course, Corbin just stays out of the way or he joins in.

My original theory of Brian being easy-going may be backwards, I think it's us that have become easy-going. It's us that have just accepted Brian and learned how to continue on with our lives AROUND any oddities or quirks. To some outsiders, this may seem strange or maybe even sad for Corbin. I, on the other hand, think he is learning empathy, patience, compassion, and so much more and it will shape him into a very amazing young man. Brian couldn't ask for a better big brother.

Brian's Admirers

I volunteer in Brian's classroom on Monday mornings and I usually arrive a little early so I can watch circle time.

Brian uses a backjack chair to help him sit up, rather than sprawl all over the rug, and also gives him a clearer idea of his own personal space.

I love watching him go and grab it out of it's spot at the side of the classroom and carry it over to the rug and find a spot to sit. A lot of the time he likes to put it on top of the letter "B", but if I'm there he tries to make sure it's close to whatever table I'm working at, while still staying on the rug.

The chair is a little awkward to manipulate, especially when someone is only using one hand because the other hand is being sucked on. It's even harder when he has five little girls that seem to be attached to him by magnets, following him around, pushing each other, to make sure they are the ones next to him when he finally find the perfect spot.

It's so funny how little girls are so attentive to Brian. It was the same way last year. I'm almost positive it's because most little girls have that nurturing instinct in them. They want to help him and hug him, and he'll let them, unlike many other little boys.

I hope these girls that he grows up with will always be there to lend a helping hand, I know these things change when they age. And I hope he grows to appreciate it, because right now he's not giving much back to those little girls, besides making sure their clothes are always hair-free (another obsession of his).

Letter to Santa

From: Corbin in Second Grade

How many elves do you have Santa? I want a A-A-A, 1 pair (he's talking about batteries lol) and some boy toy and some Wii game and some PS3 game and some bricks for my dad and Corbin wants 10 cat 5 baby cat and Mom want some jewelry and for Brian he want some trains. and for Corbin he want a robot that clean up your bedroom and clean the whole home. From Brian, Corbin, Mom, Josh and my family says hi Santa. and Josh is gotta sign it later.

The F-Bomb

I'm sitting at the table tonight making a bottle rocket car with Corbin and Brian. Brian is dancing around and all of a sudden lets out a brand new sound, "Fuh-ka". He likes the way it rolls off his tongue and he starts skipping around the table repeating, "Fuh-ka, fuh-ka, fuh-ka". I am not imagining this because Corbin is already standing up and yelling, "Brian that's a BAD WORD! I can't believe you know the 'F-word'!" (I can't believe Corbin knows what the F-word is!). I am trying my hardest not to laugh.

I sternly tell him not to make that sound. He giggles and says it again. I don't think he knows it's a bad word. I'm not even sure he's aware of bad words. I think he just likes the stimulation it gives- like when he use to go around saying "digga, digga, digga, digga".

I can only imagine him letting the f-bomb fly in kindergarten tomorrow. My son will be a wonderful peer model for his class. I'm not sure what we can do about it- I don't think I can punish him for just making a new sound- I'm kind of in awe that he's putting the "F" and "Ka" sound together- those are sounds he struggles with sometimes. I almost want to pat him on the back and say, "Nice job making those sounds!".

I wish I had an excuse that would let me just drop the F-bomb whenever I felt like it.

Mama’s Holiday Wish List Meme

TodaysMama and GameStop are giving away a sleighful of gifts this holiday season and to enter I’m sharing this meme with you.


1. What is your holiday wish for your family?

I wish that we can survive the next and last semester of my schooling- as I'll be "working" forty hours a week without pay for sixteen weeks. Without pay and now needing an outside sitter, which I've never needed before. I'm already worrying sick about it so I think this is my wish.

2. What is your Christmas morning tradition?

I've carried on the tradition that when we wake up, Santa has set up one present, unopened and laid your socks next to it. We open our socks and play with the magic present- then we eat breakfast, before jumping into the rest. It just drags the morning out a little bit longer for me to really cherish it.

3. If you could ask Santa for one, completely decadent wish for yourself, what would it be?

A full weekend at the spa. With wine and chocolate. And my sisters. Oh and a winning lottery ticket.

4. How do you make the holidays special without spending any money?

We have a lot of traditions, thanks to our community, that don't cost money and make our season a lot of fun. There is the Parade of Lights, the lighting of the world's largest (only?) lobster trap tree, horse-drawn buggy rides through town, and Santa is always on the corner of main street to hear what's new on the wish list.

I always encourage the boys to make gifts for our family and friends too. Sure, that does cost a little money, but I hope that it teaches them that it's the thought that counts.

5. What games did you play with your family growing up?

What game didn't we play? We really loved board games and card games- Uno, Jenga, Mastermind, Mousetrap, Life, and the list goes on forever. It must be where Corbin gets his love for games.

6. What holiday tradition have you carried on from your own childhood?

I love to trick my kids with their presents. Both my parents were famous for this. I remember one year my dad put a brick in the box that had my new slippers in it. Another year my mom carefully opened a new puzzle and put the CD I really wanted into it. I was bummed I didn't get the CD and never realized I did until I sat down to do the puzzle.

7. Where would you go for a Christmas-away-from-home trip?

I've been really itching to travel right now. And if I had a nanny that would accompany us I would definitely love to travel abroad. Perhaps Italy.

8. Check out GameStop (link to: http://bit.ly/gamestop10) and tell us, what are the three top items on your GameStop Wish List this year?

I have a Nintendo DS on my list for a certain little boy, Just Dance for myself, and of course we'd love to have the new Kinect system for the XBox- that just looks like so much fun!

Do you want to enter too? Go to Today's Mama, write your own meme, and link it back there!

Dig a Little Deeper...

Yesterday I posted about little things I was thankful for, and I'm still thankful for all of them (especially my caffeine fix), but there are obviously the bigger things in life that I'm thankful for.

I am thankful for my children. I am thankful for their laughs, their hugs, their insights, and their love. I am thankful that Brian thinks it's hilarious when I try to eat his feet. I am thankful that Corbin loves to read Harry Potter with me. I am thankful for the way they have changed my view of the world and thankful for the way they shaped my future.

I am thankful for Josh and all that he does to help make my life easier. For bringing the kids to their therapies when I'm at school. For singing "Vowel Bat" five times in a row with Brian.

I am thankful for my education. I am so glad I went back to school and am thankful for how successful I have been. I am thankful I will graduate in May!

I am thankful for my support circle. For my Dad and his almost-daily phone calls just to check in. For my Mom and the way she listens to me and offers a shoulder to cry on when I'm frustrated. For my sisters who are the targets of my random, nonsense texts and are my sounding boards when I want to complain. For my friends, who help keep life light-hearted. And for my bloggy-friends, who really get it. Who have been there too.

I am thankful for our amazing team of therapists, teachers, case managers, doctors, and so on. I am thankful that we spent the better half of this year working with The Thoughtful House. I am thankful that all of these professionals never give up on my son.

I am thankful that for the most part I'm able to carry on with life surrounded by love and remaining a positive, "glass half-full", optimistic, happy person despite any struggles we may have as a family.

Thankful

Tis the season of gratitude...

Today I am thankful for the following....

• Waterproof mattress pads.


• Pepsi Max to keep me awake.


• Our local Hannaford actually had all the ingredients I needed for our GFCFSF pies!


• Therapists that I can vent to like they're my girlfriends.


• A stepmom who is going out of her way to make much of the big meal tomorrow Brian-friendly.


• 2-Day Delivery Service.


• B actually let me trim a bit of his hair (just a little bit of course).


• That Corbin can read Captain Underpants to himself and it occupies him for at least five minutes.


• Hugs.


• Pizza.


• Peace & Quiet. Haven't had it today, but I appreciate it more and will be more thankful for it when I receive it after bedtime tonight.

Corbinisms

Every once in a while I like to let you into the mind of my oldest, silliest, smartest, intuitive little boy's mind by repeating the strange, hilarious, and weird things he says.

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Corbin approached me a few mornings ago and said, "Mom? I know I was born in 2002 but what year was you born in?" I told him and he replied, "Mom? I just don't get it!"
"Get what?" I asked. "How can you be born that long ago, you don't seem like you're that old!" I told him I was old and he said, "Oh you are not old, you don't have wrinkles Mom, well except for that one."

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Corbin got a new mattress. He's been needing one for a while, his old one was my old one and the last time I slept on it I swore I had bruises from it being so hard. When I dragged the old one out he was trying to hug it and saying, "I'm going to miss you my old-rock-bed".

Two nights ago I asked him how he's been enjoying his new mattress and he replied, "Well I miss my old one. We had a lot of remembories with that one."

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He hasn't given up with the notion that he's going to marry me someday and every time I plant a kiss on him he loves to yell, "Haha! That was a marry kiss- now we're married!"
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For more insight from Corbin check out:
What Will He Say Next?
Little or Big?
My Eyes are Beautiful

Cheese?

It was early morning and Brian had decided to get up with me. I threw a load of laundry in and he immediately sank down in front of the washer. I watched him knock on the window and say, "doogladidglad! oh? ok!" and then knock and repeat the phrase again. He did it for a good ten minutes before I decided to go grab the camera to try to document him getting stuck into a cycle of some kind of script.

Well as soon as he saw the camera he came out of the script, that I had tried to interject into in the previous ten minutes. "Cheese?" he kept asking me as he looked at the camera.

I tried to get him back to what he was doing, merely for the fact that I wanted it on video. You can even hear me ask, "You're not going to ignore me, are you?".

How silly is that? That I wanted him to ignore me and the camera (for the camera was most likely what he really was having trouble ignoring)? I really have to celebrate the fact that he just came out of his cycle so easily like that. That he was aware of the environment around him. He's coming out of his shell and it's such an exciting feeling!

A Sad Farewell

I love unexpected gifts like these in my mailbox:




Freedom Riders sent them to me- my camera never took good pictures in the riding arena, so I'm in love with these.

I found these in my mailbox just a few days after I heard the horrible news that Freedom Riders is closing their doors. They are a non-profit and can't carry on with the economy being how it is- no one is able to make the same sort of donations they have in the past. They have been a part of our area since 1984- being the longest running therapeutic horseback riding center in Maine. They have been a part of our lives for just two years, but I surely treasure that short time. Brian loved his sessions and it was an activity he could truly participate in and feel accomplished and proud of.

Rumor has it they may reopen in a year or two, as a for-profit organization. I surely hope the rumor mill is correct on this one.

BioMed Update

Brian just finished his first-ever round of flagyl (hopefully not first of many? but from stories I hear- I'm sure we'll be on it again at some point). Flagyl is used to address the bacteria and the parasites that were apparent in his GI system. It was a good round, I think. I'm not sure I saw any markedly big gains, but we've been seeing steady gains ever since tweaking the diet and starting with vitamin supplements so it's hard to tell.

Today was the first day of Diflucan. This is started after the Flagyl, to address the yeast, which was apparent before Flagyl, but is probably even more pronounced after being on an antibiotic for ten days. I can say that the past two days he was a bit more flappy, manic, and stimmy. I saw an increase of the "Brian come back to Mommy" moments- and I don't mean physically come back, but just come back to this reality because he would start to shake his head back & forth, make no eye contact, and make his high-pitched silly sounds. All behaviors that had decreased a bit for a while, so I'm really wanting to blame it on an abundance of yeast.

I'm excited for this round of Diflucan and keeping my fingers crossed for a major die-off reaction! (Remember I said that, when I'm complaining on facebook about it!)

It a Cat.

Just when I think things can't get any odder around my home, my son yells from downstairs, "Hey mom! There's a cat in the house- that's not ours!"

I immediately decide to blame it on Josh, coming home from watching the Pats game with some friends last night, probably not noticing one of the neighborhood cats sneaking in. They are always at our door looking for a home to come into.

But in fact it turns out it was hanging around the restaurant the entire night and the owner decided it must be a stray. Since Josh lived the closest he took it home with plans to bring it to the shelter the following day.

It's been a while since we had any animals in the house. Corbin's poor gecko only lasted about two months and before that we housed my Mom's cat for a year until she was in an apartment that allowed animals.

I'm not a huge animal lover. Just putting that out there.

So I wasn't thrilled about our visitor, even if it was only for a short while.

That is until I was up in the bathroom brushing my teeth and I heard this running commentary from Brian: "A cat. It cat. Hi cat. It a cat. Hi cat. A cat. It cat.". It made me think of our friend Audrey, who just loves cat (okay, so we've never met her in real life but I consider her and her mom friends anyways). It made me think maybe this was a way to get Brian to open up (even though I don't think he even noticed we had a cat last year). Maybe he would want to write silly texts to the cat? (If your lost with that last statement you need to visit the link above- HILARIOUS). Maybe I could be a cat lover.

Then I heard it scratching up the side of my couch.

I called the shelter.

My Turn!

At the playground today I was sitting back, skimming the TACA newsletter I had just received, while keeping one eye on the Bri-Guy. I started reflecting on how far we really have come. It wasn't long ago that I had to be a shadow to Brian at the playground- because he might elope, he might not take turns with other kids at the playground, he still needed help with a lot of the equipment, other parents may say rude things to him when he acted inappropriately (true story). It feels nice to just sit back. I still worry sometimes what other kids might think of him when he doesn't reply to them or when it's his turn to slide and he has to jump and flap a few times before he goes down. But for the most part, I know he knows how to be safe.

As I was sitting here thinking about all of this I watched him approach a ladder that had become part of a circular route he had been repeating for a while. Only this time when he came to it a young girl was leaning against it, with no intention of climbing. I watched with interest as he stood there, looking very puzzled. You could tell he was thinking about how to address it. I kept watching, hoping he would figure something out, or the girl might actually notice him, when all of a sudden I heard him start counting, "1, 2, 3, 4, 5, 6, 7, 8, 9, 10". He then patted his chest and said "Mah tuh" (my turn).

I had the biggest grin on my face. In his joint speech/OT sessions his speech therapist will usually count to ten when he gets on the swing and then say "my turn". She'll then get on the swing and won't move until he also counts and tells her he wants a turn. He's got the routine down really well at therapy but I've never seen him use this concept anywhere else.

Lucky for him the girl did climb the ladder at that point. I think it may have been coincidence, but I like to think she understood him.

And now, time for some random, cute, playground pictures:

Love that Laugh

For some reason I can not figure out how to change the date on my little video camera that Josh bought me this summer. So when I upload pictures, if I don't think to change the folder name, they get saved way back in my 2009 files. And I often forget about them there.

Last night I happened to stumble across this one that had to have been taken in August. One of the things I love the most about both of my kids is their laughter. There is nothing better than to hear that and just know they are experiencing pure joy.

This video captures that. As well as a little bit of rocking when he gets really excited and a little bit of echolalia. It's all part of a perfect moment though.

Good night boys. Hello Pinot.

Today has been the longest day of my life.

In part, I think it's due to the time change. Brian is getting up an hour earlier and then we're all tired by noon.

In part, I think it was due to the boys and I having a day off in the middle of the week. But Josh still had to work. He actually had to work a double. So I had no back-up.

In part, I think it had to do with the fact that I'm still stuck here with no vehicle. No pressure Dad, still excited you are saving me hundreds in labor costs!

In part it's because Brian had what seemed like hundreds of bowel movements which led to hours of cleaning. It's because I have three HUGE projects due next week that I've been trying to work on. It's because every time I sat down to work on one of them the boys became extremely needy. It's because Corbin decided to make homemade lemonade on the table right next to my professional portfolio. It's because we played five different board games, did three "homework" games, one science experiment, played "Lego Town", allowed time for video games and a movie, had outside play time, went for a walk, and I still heard "I'm bored" a gazillion times today. It's because I'm stressed about everything lately. It's because I really, really need a break. And unfortunately, I don't see one in the near future.

Bed time is coming early tonight. And I'm thanking my lucky stars that I needed white wine for our shrimp scampi last night. Cheers!

Special Needs Blog Hop: Laughing at Other's Expense

Thought I'd join in on the hopping this week. This week's prompt is to share a funny memory of our child(ren). I instantly wanted to find the video of Corbin eating Doritos with his feet when was about two years old- but I think that's in his father's possession as I couldn't find it.

I know this memory isn't that long ago, only a few weeks old now, but this video of the boys having a sliding race down the hay pyramid always cracks me up. I was filming, just happy that Corbin was getting Brian to reciprocate with him that I had no idea there was someone at the bottom of the pyramid! Sorry lady!

Food.

Food. It's a four-letter-word.

It shouldn't be that way. I, myself, absolutely love food. I may be the world's least pickiest eater. And I've always been that way. In fourth grade our teacher asked us what our favorite food was. I eagerly raised my hand and shouted out "Spinach!". The boys in the class teased me for days for that one. So sometimes it's hard for me to relate to the boys on this problem.

It started eight years ago when Corbin was born with heart defects. He had a hard time eating because he would tire quickly since he was in a constant state of congestive heart failure. My dreams of breastfeeding him subsided as I had to be flexible and feed him my breastmilk via a bottle, so I could add additives in it. We needed him to chunk up so he would be strong when it was time for the inevitable surgery.

Corbin always teetered on that line of Failure to Thrive, even after his surgery. And when he was older we had to meet with a dietitian to learn how to cook all of his food in oil and other ways to get healthy fats into him. He also had a carnation instant breakfast every morning. Even though he was struggling gaining weight, he loved to eat! He ate whatever I put on his plate.

When Brian was born I was happy to have that breastfeeding bonding. He breastfed for 16 months and gaining weight was NEVER a problem for him. When I started to introduce pureed vegetables he would eat them right up. He, too, ate whatever I put in front of him. I was patting myself on the back for raising two boys who had healthy, well-rounded diets.


Then when Corbin was about three he decided he didn't like vegetables anymore. He didn't like foods touching. He craved carbs. About a year after that Brian decided he really didn't like food anymore- unless it was starchy carbs.

It's been a struggle ever since.

Not only were the boys self-limiting but they both had obvious intolerances. When I took our whole family off of gluten three years ago, I was only looking for differences with Brian (which we saw!), but I was shocked that Corbin got on the growth chart for the first time in his life (since birth)! I wasn't going to knock it to coincidence. I know, that I, felt much better removing gluten and dairy from my diet. And I still struggle why I allow myself to eat all of it (it just tastes so good!!).

Then of course Brian has had his love/hate relationship with apples (The Phenol Effect, Phenols Strike Again, Tweaking the Diet: Phenol Removal). For a while, I was blaming it on the phenols (I'm sure you all remember, if not- look at the links above), but I am almost 99% sure it's an allergic reaction to the apples themselves.

Recently I've been having some success with getting them to try new things. Our biggest hit was thanks to suggestions from Brian's dietitian. Sweet potato & turnip chips. Simple. Yet I never thought to try it. I just cut them up thin, toss with safflower oil and sea salt, and bake. And Brian can't get enough of them (I'm sure due to the salt).

New foods we've tried that he loves and are really good for him- Udi's brand bread & pizza crust, Daiya "cheese", and Honest Kids juice pouches. All great alternatives for what he was eating previously, but not messing with his body like the old brands did.

Even though I can't get him to eat a great big helping of vegetables (besides the aforementioned chips) they are both at least taking a nibble of whatever vegetable I offer. In the past few weeks they have nibbled asparagus, brussel sprouts, green beans, cauliflower, red pepper, and cucumber. I've made some homemade hummus and Corbin loves it- no luck with Brian yet.

Maybe, someday, I will be able to have those well-rounded eaters, that I had myself believing I had years ago.

Let's Keep It Going...

Happy progress updates:

* Brian's mood has been really, really great. Sure he's always been a pretty happy guy but we're not even having tantrums during "homework time" anymore. Even yesterday during that crazy, very loud birthday party he never checked out or had a tantrum.

* Bed wetting is *almost* nonexistent. From accidents four times a week just a month or so ago.

* Sleeping through the night!!!!!!!!!!!!! We've had two night wake-ups out of the whole past month! Prior to that we were having them nightly.

* Lots of independent, spontaneous talking. Sadly, I still can't figure out 90% of it, because of articulation, but he's trying. Really, really trying.

* Even more imitative language. Copying everything. Even the bad stuff. Like Josh saying "Damn it, there's never clean towels when I need one". Thanks Josh. So far he only repeated it the one time, but if he says that at school, Josh owes me one.

* Medicine-taking has improved even since the last time I mentioned it. Though he had stopped screaming and spitting it out at me, I was still having to sit on top of him. Since Friday evening I haven't had to do that once!

* He's been less obsessive over certain toys and actually been pulling out a lot of toys that had dust growing on them and playing with those. But trains aren't going any where, don't worry.

* Slowly and very hesitantly trying new foods.

* Out-of-school speech & OT has been going really well! Thinking back to early September when it was a struggle to get him to play "Go Fish"- now he's sitting and doing several table-top activities all while smiling and laughing.

* And speaking of OT, when he walks in he is now grabbing the "pump swing" (pump your legs) rather than the "spin swing". Sensory wise, something good is going on inside of his little body if he doesn't feel the NEED to spin. And he's starting to get quite good at pumping those little legs.

* From the reports at school, not only is he more willing to attend to academic work, he seems to be really trying to participate socially as well.

Something's working. Knock on wood!

A How To Post

How to have the most awesome birthday party on the planet, that is!

You will need:


Cute nerdy glasses to be worn by even cuter little boys.


A birthday cake with steam billowing out of it.

Lab coats.


Spiky, crazy "Einstein hair".


Experiments:

Blowing up a balloon with the gas created by vinegar and baking soda.


Making "Gak" with borax, glue, and water.


Playing with Insta-Snow.


Sucking an egg into a bottle with a narrow-opening by changing the air pressure inside the bottle.


And the old favorite- Mentos & Diet Coke.


Plus: A brain jello mold, goodie bags (radioactive light tubes (glow sticks), pop rocks, magnifying glasses, and test tube experiments), lots of family and friends, lots of noise, lots of craziness, and lots of fun.

Mix it all together and have a great time!

8 Years.

Last night I was teasing Corbin, like the mean Mommy I am, and I told him that I spent too much money buying supplies for his science party so he wasn't getting any presents. He responded, "Ohhhh Mom! You don't need money to buy me presents- all I want is fifty kisses!"


Could you ask for a sweeter kid?


Corbin is eight years old today. I can hardly believe it.



Was it seriously eight years ago that I spent some 30 hours in labor? Was it really eight years ago that he came into this world and gave everyone their biggest scares of their lives? Was it eight years ago that I found out about unconditional love? Eight years ago that I realized what it felt like to know you would do anything to protect this new little stranger?


It's been an amazing eight years and I can't wait (well I don't want to rush it) to continue to see him grow into an amazing young man.
Love you Corbin! Happy Birthday!

Potential

Brian has had a few psychological evaluations that have recommended us looking into augmentative alternative communication (AAC) so I finally bit the bullet and asked for him to have an evaluation. I was even more excited that I found out the SLP I had wanted to do it with a few years ago and was told no, was the one that was contracted through our school district.

Today was the first day of Brian being assessed. This process is going to include two direct assessments as well as video-taped sessions for Mark, the SLP to go over. I really wanted to attend his assessment today at school but I had classes. I had made a mental note to try to call Brian's teacher when I got home to see how it went.

Within five minutes of walking through my door, Mark was calling me. He was very friendly and very enthusiastic about my little man. He reiterated to me how bright Brian was and how much potential he sees in him. He told me that he has obviously recommended tons of communication devices for kids, but at this point he's thinking he isn't going to need to with mine. He has a lot of ideas to promote further speech and he told me he was very confident in Brian's future for speech production.

He wasn't calling to tell me his final conclusions, but he wanted to let me know how much he enjoyed his time with Brian today.

I can't tell you how much it means to me to hear this. It was so refreshing to hear a stranger tell me my son has potential. To tell me how "bright" he is. I can't say I never hear it, because I do, from professionals who have been in our life for a while. But every experience I've ever had with evaluators who only meet him one time, has been a difficult one. Ones that end with them telling me how delayed he is, that he has mild MR (which I refuse to believe), and so on. So this call really made my day, I think Mark may be my new best friend.

This Is Not A Movie. It's Real Life.

There are days in my life that I just couldn't make up.

Let's take Tuesday.

Driving home from school, cruising on the interstate, when all of a sudden I can feel my van losing power. My van and I have a love/hate relationship. I love it, it hates me. I slowly pull the beast over to the side of the highway where it dies on me.

I call the towing company and am told it would be forty-five minutes. Forty-five minutes on the side of the highway, with no heat, and the sun is almost down. Lovely. Thank goodness, I had a cell phone to kill my boredom, and update my Facebook status with an appropriate "FML".

About twenty minutes later a police officer pulls up behind me with his lights all flashing. He comes around the back of the van with one hand holding his flashlight and the other secure on his gun in his belt. He is creeping around the van, peering in with his flashlight (probably thinking- wow, why does this van still have life jackets and sand pails tucked away in the back), gets to the passenger side where I start waving with a big smile on my face. I roll down my window and explain my situation and he very kindly offers to wait with me.

Within minutes the towing truck appears. I have never been so happy to see so many flashing lights surround my vehicle. I wanted to jump out and hug and kiss the tow truck driver, but thought that might be a bit inappropriate.

I ride along back to the garage where I have to wait for Josh and the boys to come get me (still about 45 minutes from home at this point). We're met at the garage by two very friendly men and a very dark garage. Well it is past closing time. But I think I may have seen one too many horror movies because at this point I'm just thankful that both the police department and Josh know where I am.

I'm ushered inside after I get the news that my timing belt has busted. I am standing in the waiting area (where there are no seats) and one of the men tells me to go sit behind the counter. I do, though I'm still a bit nervous. He follows me in and sits in a chair at a computer and pulls up some you tube videos to share with me some raves that he has gone to. Turns out he's a big raver. After the music's pounding subsided he then goes on to his facebook to share his pictures with me. It's there that he enjoys pointing out the subtleties like, "Haha, look at our eyes. They're all the size of half dollars if you know what I mean."

At that point, I decided to excuse myself from the office and I frantically called one of my sisters and spent the rest of the time on the phone with her- felt a bit safer that way.

Finally my knights in shining armor arrived and I was never more happier to see them.

To Stim or Not To Stim

Yesterday morning Brian seemed not only so "off" but also kind of sad so I thought a trip to our favorite toy store, Planet Toys, was needed. One of the reasons this toy store ROCKS is that we can go there and not buy anything- they have so many toys on display that kids are ENCOURAGED to play with. They even have a small jungle gym and slide in there now. Some of the employees know us by name.

Yesterday there was a lady there that I haven't met before. She honed right in on Brian, as he stood and watched this one toy, the Penguin Race. Of course he wasn't just standing and watching it. He was flapping, jumping, and squealing watching it out of his peripheral vision.

She smiled and asked me, "Is he verbal yet?" Woah. I think that may have been the most forward anyone has been to me, ever, regarding his autism. He was obviously portraying VERY autistic traits at this moment so it wasn't surprising to me that anyone familiar with autism wouldn't think that, but it still took me back a bit.

It turns out she use to work with kids on the spectrum. We laughed at how this toy must have been made for kids with autism. I was talking to her about how I always struggle during this gift-giving season on whether I should get toys he can stim on or not.

On Christmas morning I want Brian to rival his brother's enthusiasm for his new Harry Potter legos. And the only way I'll get that level of excitement out of Brian is by stimmy toys. He would be so excited to have a pile of presents that spin, blink, and have repetitive motions. But then I'd only be setting us up for more disappointment as I would have to put them up just to get him to interact with his family.

So far in my closet I have a fiber-optic lamp for him and these awesome stacking tops that do a really cool light design. So I guess that's my answer. I'll deal with the frustration later on just so I can see the smiles I want to see on Christmas morning.

I'm pretty sure that Penguin race will be joining the present pile.

Happy Halloween!

Brian really really impresses me. Every year when I compare one big event to the previous one I really can see growth. It may be hard to see it day-to-day but it's so noticeable comparing year-to-year.


The first few houses he did try to go into- hello? Why knock on a door and NOT go in? What's the point of that? But only after about three homes he had the routine down. He was saying "Trick or Treat" this year and "Thank you" (with prompts). He yelled, "Car coming! Watch out! Aaahh!" (repeatedly), when he saw headlights. He laughed (appropriately) when we watched Josh run across a busy road after Woody's cowboy hat (windy night here in Maine). He didn't cry when we switched directions. And (drum roll, please) he wore his costume for the entire night.

Corbin was so cute as Dumbledore and we even had TWO people guess who he was without us telling them! The wind made his costume a bit problematic but we dealt with it. At one point he tripped over something and decided it must have been a monster (what else could it possibly be?) and he ran full speed towards our car. I know I'm going to sound like a mean Mommy but seeing his robe and the white hair flowing as he ran with this funny gait just had me doubled over in laughter.

Overall they made out like candy bandits- though the pile did diminish quite a bit after removing the gluten, dairy, and soy. Surprisingly they fell asleep fast even after their sugar high. Hope everyone had a wonderful and safe Halloween!

Will it be tricks or treats?

Halloween is really such a weird thing when you look at it from a very literal view, as my child, and others like him must do. It's still a few hours before we leave to go trick-or-treating but he came home this morning zombified. Just really tired and not giving much back to me- it makes me worry about how being "off" like this will affect a night that's already so confusing.

On another note, he has shown good progress with wearing his costume. We had a Cub Scouts Halloween party to go to and he refused to wear it. Yet when I showed up at his school on Friday to go on a Halloween field trip with his class, he was already in his costume and I was told he proudly went to share it with all the other teachers in the school. He kept it on for the entire field trip and then that afternoon for the school's Halloween parade.

So let's hope that means tonight will be a night full of fun!

Responsibilities

We were dancing around, being silly, pretending to be the characters from our music video.

Corbin announced, "I'm the best creators of monsters! No monster will ever hurt me because I'm the creator!"

I answered back in my spookiest voice, "I'm coming to get you!"

He responded, "You are just a child monster- you won't want to hurt me because I haven't created your parent monster yet!"

I replied, "Maybe I don't want a parent monster!"

His answer, without a second of thought, "You have to have a parent monster! You don't know all about responsibilities yet!"

The Autism Community

Today the boys and I were waiting in line to check-out at the grocery store. In front of us stood a Mom with her little boy. The boy turned to me and said, "Hi, What's your name? Look at what we're getting!" while physically turning his Mom so I could see the haunted house cookie kit she had in her hands. I told him my name and shared his enthusiasm for his baking project. He continued to have a (kinda one-sided) conversation with me and his Mom just looked at me with this grateful expression on her face.

I, of course, knew immediately he was on the spectrum. I mean, rubbing his cheek against my bare arm was a pretty big hint. But, what do you say at that moment to the mom? I felt like just blurting out, "Brian's autistic too!" And even though I was 99.9% sure this little boy, Johnny, was autistic, I couldn't bare the shame I would feel if I was wrong.

So we continued on in this way for a good seven minutes (someone ahead of us was having a struggle I think) and we were finally able to start loading our groceries on the conveyor belt. She saw our Udi's pizza crusts and said, "Oh! You do the gluten-free diet?? We were going to try that but I don't feel his autism is that bad." There she said it. And I have a feeling she was struggling the whole time with asking me about Brian as well. So then we started sharing all kinds of stories.

Normally, I'm a pretty shy person. I have a hard time opening up to people, especially strangers. But that's what belonging to the Autism Community does to you. You can instantly open up and have long conversations with complete strangers- because they don't feel like strangers to you. They may actually understand you more than people who have known you for some time.

I suppose, this is one gift that has come with Brian's diagnosis- meeting all these wonderful people and knowing I have so many supports when needed. It sucks to have to join this community, obviously, but it's a safe, kind place to be.

Simply For Your Amusement

Personalize funny videos and birthday eCards at JibJab!

We only have four people in our family so yes, there is some stranger being Dracula. These little Jib Jab songs are so hilarious!

What happens when.....

I'm thinking I should start a series of what happens when you leave your child alone for too long. Like the bed turned into a train table blog. Here's one from this week when I left him in the bath while Corbin & I carved pumpkins.




Corbin went to use the bathroom and yelled down to me, "Mom, Brian's turned his bath water blue!"

It turned out he had found an old bottle of Selsun Blue shampoo and had dumped the entire thing into the bath, on the side of the tub, and on the floor. I guess he needed some bubbles.

Jack-O-Lantern Time

Following the excursion of finding the perfect pumpkins, is of course the experience of carving them!

I was surprised Brian was into it this year. And by into I mean instantly picking up a carving knife and poking holes all over his pumpkin. I cut open the top of the pumpkin and asked him to clean it out with me. No way in hell was he going to put his hand in there and touch the slime.

After I labored over the cleaning of the pumpkin, I asked him to draw a face on the pumpkin. He did. I went over them to make them a bit larger and he set to cutting out the eye. He actually cut out one eye really well but then decided to cut a long line from the top of the pumpkin, through the eye, and down past the nose. Not sure what he was going for with that- it looks like a scar of some sort, but I'm guessing he was probably goign to try to make railroad tracks. I was able to redirect him and we di the rest of the face with some hand-over-hand techniques.

This was the first year Corbin was completely independent on the carving of his pumpkin. Oh, no, wait. No he wasn't. He too won't touch the "guts" of the pumpkin. In fact just looking at them can have him start in on a gag-fest. But he did cut out the top and design and cut out his face.



After he wanted me to draw him a Jack Skellington face (from The Nightmare Before Christmas) on his second pumpkin and he carved that out as well on his own.


As for me, I put in more time than I have in years on my pumpkin and really have been like a big kid ever since. Everyone that comes to my house gets asked, "Did you see my cannibal pumpkin? Huh? Huh? Did you like it? Praise me please!"

Overall, it was definitely our most successful pumpkin-carving session ever. I love that each year gets a bit better than the previous one. Makes me look forward to the future.