Sunshine

Today was Sam's open house. I usually hate these things  because I always wonder if people look at me and think "See, that is why he is such a mess" This year was pleasantly different.
Sammy could not wait to go o Open House. He was so excited to show us his class and his desk. We got there and he showed his teachers his treasures that he brought with him. Kids said hi to him and he smiled. He ran off ahead to his classroom, but he waited outside.

The behaviorist, the principle, his teacher, and his reading specialist all said the same thing "he is really doing so wonderfully this year. He is working hard and putting in a real effort. We are so Proud of Sammy" It was enough that I almost cried. I so desperately needed to hear something good about him, because things at home have not been easy.

Sammy in his new obsession ~masks

Then I had a parent come to me and tell me her son talks about Sam C. all the time and was wondering if they could play together some time. Another mom said her daughter says great things about Sammy all the time too.  Some of the kids really wanted to be around him.

I left feeling pleased and happy. I love our team. I love the people who work with my boy and help him over the rough patches. I KNOW this won't last but for now I will just sit back and enjoy the sunshine

It's all Possible

 



So I have spent some major time crying in my cornflakes the past few days. It's rough here. Sam's first spelling test came back and it was terrible. He is struggling with so much right now and I really just don't know how to help him. Tonight he said he wants to be a doctor. He wants to treat rabies and be a doctor.
Of course I told him he could do anything he set his mind to. I encouraged him and smiled. The entire time my heart was shattering in my chest thinking about all the things he would never do. He can't possibly become a doctor...right?

Then I saw this

autistic-basketball-star-jason-mcelwain-qualifies-for-boston-marathon

Wow.I remember watching the video of this kid playing ball and thinking "WHY the hell didn't someone give him a chance BEFORE this?" So I read the article...twice.
Maybe it's pregnancy hormones, maybe it's being so tired, who knows. I started to cry again.


It changed my perspective on Sammy's options. No, he may never be a doctor, but I can guarantee he will surprise us all.
I want people to believe in my son and here I was doubting his dream. Somewhere in between here and there I stopped believing in my son and his ability. I always swore I would never do that...
Never say never... it's such a long time.

Raising Money

We watch a lot of movies here at the end of the day to kind of wind down. T.V. is almost always a sure fire way to get Sam to sit still, switch the language of the movie and instant success. We have a movie the kids received for Easter last year. It was "letters to God" and I thought  it would be a good movie for the kids. Turns out the kid dies in the movie at the end from cancer.

This is now the second or third time I have lost the movie choice privilege. The first was for picking  "Faith Like Potatoes" where another kid dies. Then another movie where, you guessed it, another kid dies. At that point Tyler suspended me from choosing Red Box movies because CLEARLY I am not very good at this.

a giant board Sam wants people to sign

Sam keeps watching the movie over and over. I am not sure what the appeal of it was for him. i didn't think he understood the premise of the movie. The little boy writes a letter to God every day, and because of it a TON of people are helped  with super serious problems. What Sam did understand though is that the boy died from Cancer. So now he has an idea.



He wants to raise money for kids with cancer. He made a sign for people to sign and he wants to have a lemonade stand. In just two weeks during the farmer's market next door we will have a lemonade stand. 25cents a cup. we might even have some cupcakes and cookies for sale. So if you just want to make Sam's day stop in  from 12-4 on Sunday 2 weeks from now. I promise I will remind you

Broken

You can see it bubble up  across his body. It only takes a few seconds before the entire thing takes over my soft sweet boy. His little (or no so little anymore) fists clench tight, his calf muscles twitch and he grind his teeth together, all of this happens in seconds. I mean it, just seconds, before whatever is near him goes flying across the room, onto the floor, into the wall or at me. I have been hit by shoes, chairs, and most recently a notebook.

The good thing is I have been doing this long enough that I can usually keep everything safe. The bad news is, even though I try I often cannot keep everyone and everything safe. Either because he is being watched by someone, or because I am not paying enough attention, or sometimes I am just not fast enough. I miss the warning signs one out of every 50 shots or so. Not great odds I guess.

We lost the battle this week when the only real laptop in the house became a casualty. The screen was shattered. I was gone for less than an hour at one of the older children's open house. Less then an hour.

I am so frustrated because he KNOWS better, but he just can't help it. I am frustrated because I KNOW he can't help it but I still get so angry. Sometimes I am so mad I feel like I am going to explode. That won't help anyone. It won't even make me feel better. Then of course I feel guilty for being angry, I have to remind myself that he isn't like everyone else. Isn't that why I get so angry at other people?

Terribly humbling

Sometimes, I don't have the answers.

 What do you do when you don't have the answers? What happens when you can't fix it, when you can't help and there doesn't seem to be a solution? All I know is the question, and it's the same one I always have

"How do I help Sam NOW?"

Third grade is hard. Harder than anything he has ever had to do and for the first time he WANTS to do well with it. He is just so frustrated. He told me today they just learn too much too fast. He also told me that when he gets overwhelmed he stims on his shoes. Sam has never been a huge stim kid, though he does flap and such when he is stressed. I can't help thinking about my poor baby, so stressed at school. I worry that the kids will begin to tease him. Kids are mean, really mean. I remember what it was like being teased and it makes me sad for him. He wants to make friends but it is just so hard for him.

I wish there was a way to unlock his brain some days. Not to make him less autistic, but to make things easier for him. I know he would love to learn if we could just find the way to teach him that doesn't stress him out. I worry that if he continues to be so defiant in class that they will place him out of inclusion and into a contained classroom. He already has a ton of accommodations and modifications to help him through. He gets a ton of love and support from our team. In fact I LOVE his team and I KNOW they will help figure this out.

It could just be growing pains. Between the new school, change of season, new teacher,shorter days, upcoming baby,increased self awareness, and harder work, it may just take him longer to get into the groove.

So for now I am holding my breath every time the phone rings. Hoping and praying it isn't the school.

The Finish Line

This is ten percent luck, twenty percent skill

Fifteen percent concentrated power of will

Five percent pleasure, fifty percent pain

And a hundred percent reason to remember the name!

(fort minor-Remember The Name

Sunday morning was fantastically perfect for a half marathon. I had packed the car the night before with a change of clothes for each child and snacks for them in the morning. I had everything set and ready to roll with at 5:30am when we had to leave. The Team Up! with Autism Speaks Boston 13.1 Half Marathon started at 7 am and the group photo was at 6:40.

I still ended up late after getting turned around and then missing the exit. I got to the race just after 7 am in tears and panicking. I had to pee and that only put me farther behind. 

+When I signed up for this race I had planned on running it and I had not planned on being pregnant.

This race was never about me though, it has always been about supporting Sammy. When I explained to Sammy that I was doing this for autism awareness he asked " So people know kids with awwwtizzm (he always says that word with a weird inflection) aren't just stupid?" Sammy's insight has always astounded me. This whole morning was about him and supporting him and yes, trying not to cry.

 I got there late and I had to hustle to catch up. My oldest boy came with me so I wasn't alone, he is a spectrum kid as well. Sometimes I forget that because he does so well. I had only two goals 

1. finish

2. not make an ass out of myself.

I did the first, not sure about the second. I am often as socially inept as Sammy. I don't like to be around people, I don't read social cues well. I always wonder if people are just humoring me when they  are nice to me.

I caught up about mile marker 3 or so and somewhere around MM4 This Awesome Lady here passed me. I was fine until about MM8 or so then I began to fall apart and my hips began hurting. My legs were almost numb and my hips burned. Then "Remember the Name" came through the i-pod. I saw This blue haired guy running the other way and he waved and it made me feel better... a little. I powered through anyway and just kept going.

It was so amazing to me that every person that had a team up jersey on cheered me on. I gave a thumbs up to every person I saw with one too. I met an amazing momma who ran in a tu-tu and cape, a woman who had a double hip replacement (who finished before I did BTW), another friend Paula, that I met through twitter ran by me. She check on me, made sure I was OK, and offered support.

My beautiful boy Tyler encouraged me and pushed me and made me laugh every time I thought about quitting. He even rubbed my shoulders. I sat down at one point near MM11 and thought about waiting for the sweeper van, but all I could think was SWEEPER NO SWEEPING (thanks Jess). Someone walked by made sure I had water, asked if I was ok and encouraged me. As I came up to end of the course, two other women were walking the other way and gave me hope that I was almost there in the form of an OREO COOKIE. you have no idea how good that freaking Oreo was~!

My family met me just outside the finish line and I crossed it, in tears, at over 3hrs and 35 minutes. 

Why was I crying?

No, it wasn't the amount of pain my body was in. It wasn't hunger, pride, pain or exhaustion, or anything of the sort.

 It was the distinct realization that I was done, I had crossed the finish line...and that Sammy doesn't have a finish line. There is no end of the race for him, every day he gets up he is in it. He doesn't get to just be done. I didn't quit because he can't quit. I didn't stop because he never does, but I crossed the finish line and that is something he will never really do. I was done, and tomorrow Sammy will still wake up and be autistic. He will struggle to get dressed and brush his teeth. He will still loose it every night when it is time for homework. 

I may have finished the race, but my work is not done. For that reason I will be doing this again... after the baby of course. 

not just chub 16.5 weeks pregnant with baby number 6

I did finish

I want to write about this event. I do. I promise I totally will. I still can't seem to wrap my head around everything that went on this weekend. I feel very emotional when I think about it. It could of course just be the pregnancy hormones. I will later today post the pictures and the story. More important than the race, which was so not a race for me, is the people. The thought each of them put behind getting it done and the sheer power of will.

This song got me through mile 8-11 over and over and over...



I want to tell you about being so out of my element I contemplated not showing up.I want to tell you about meeting people I have been following on twitter and feeling like a silly fan girl. I want to tell you about the amazing sense of community I felt, about the runners that stopped to make sure I was ok. I want to tell you about all the amazing people, the tears in my eyes, and my amazing 17 year old son that took every single step with me. I want to tell you about how hard this was and how great it felt. I want to tell you about the oreos...
I am just still too emotional to write too much about it .

Out of my Depth

 The half marathon is today and I am 16.5 weeks pregnant.  I kind of resemble a weeble wobble at this point. I still can't wrap my head around the fact that I got myself into this. What the Hell was I thinking?I am pretty nervous because I have never done anything like this before and I am so out of my depth. I had originally planned on running this half marathon but the pregnancy with squish and severe morning sickness kind of derailed that. I haven't trained the way I would have liked to or as much as I would have liked to and of course that has me worried. Everyone keeps reminding me that I am pregnant and that I should take it easy. Lots of people keep telling me this isn't a good idea. Even Sam says "I don't think I feel good about this, if the babies dies your so busted" OUCH.

My husband has been super supportive, thank God. I understand the concerns as I am CLEARLY out of my depths.

You know what scared me more than the 13.1 miles? The CROWD! I am short of breath just thinking about it. I can't even write about it. There were far less people last night then there will be today and even that was hard.

You know what though? HARD =/= IMPOSSIBLE
It doesn't equal quit or fail or walk away. Someone we were sitting with last night asked "You're STILL going to do it...PREGNANT???" I kind of laughed and then I explained like I have explained to everyone else.

My Son, my sweet fluffy headed boy doesn't get to quit because it's hard

he doesn't get to wake up in the morning and say "You know, this isn't a good idea. I think I will just STOP being autistic." He doesn't get to walk away because something unplanned comes along.

He doesn't get to quit. 

Neither do I.

I am doing this for him, because I want him to know

he isn't alone

he isn't broken

I am doing this because he needs to know

there are so many others like him

that he HAS support

I admire that little boy so very much and because he can't give up

NEITHER CAN I

Derek Hoare 2011

I went to an amazing Pre race dinner tonight. It was my very first autism event. I can't wait to tell everyone about it tomorrow (after the half marathon) I spoke to a few people and told them the story of Ayn. This little girl stole my heart over a year ago. Here is her story





Derek Hoare 2011 ~ this story about a little girl that was removed from her father's care simply because they felt he was overburdened. As a parent of a special needs kids I find this appalling. I want to be sick. The damage and the fear this separation must be causing this father and his daughter AYN (who is super cute BTW) we all know how hard parents of autistic kids have to work to get their children to form bonds. My heart aches for this family. so please. spread the word, increase the pressure, and pray...

There is a facebook page set up  for updates and there is a link to the petition for Ayn as well

Ayn's Facebook Page

In The End

In the end , yesterday turned out OK. The migraine never really went away but you can't win them all.

My mother brought over cake, so I didn't have to make my own. Which is always awesome. Cake which is made for you always tastes better anyway.

My boys made me a card , well Tyler and Sam anyway. They drew birthday cakes, balloons with smiles, and a table set with a bunch of plates.

My husband made dinner. Fish and french fries. I am so grateful I didn't have to cook last night since I felt so sick. In fact I have to say I am pretty blessed with a husband that will do whatever needs to be done. He doesn't even grumble. I know I might if the roles were reversed. I tend to be a cranky pants when it comes to change.

My friends all sang me happy birthday at book club. I got the cutest card  and a gift card to Dunkin too. Oh and a JELLY DOUGHNUT! Those of you on my facebook page know I have been craving them lately.

My wonder hubby also remembered an obscure request I had made earlier for this...

yahooo.

Happy Birthday

Today is my birthday. I will spare you all the details on how old I am. I woke up today to my darling Sammy making me a wonderful breakfast. He even served me breakfast in bed.
How awesome! Of course between him, Nate, and Grace they ate it all but that is fine.He also made me coffee and it was close to perfect! He did forget the spoon but I wouldn't ever say anything.

GF cheese toast and Coffee

He then stepped on a small drop of water in the kitchen. He fell apart, stripped off his clothes and spent the next 40 minutes wailing that his pants were wet. If his pants pants had in fact been wet, or if he had in fact had anything else to wear, I would have let him change. That wasn't the case, unfortunately.


Then this afternoon Sam and Nate got into Tyler's room and dumped an entire bottle of cologne on themselves.
If you have ever been pregnant you know how sensitive your sense of smell becomes. I now have a migraine.

Zombies

I feel like I'm in a fog today. It may simply be because I had to keep Sam home this morning due to a doctors appointment. He did pretty well with the exception of a small battle with Nate in the waiting room.

I sat there watching him for a few minutes this morning. He was sitting in the sunlight of the kitchen eating his breakfast. Nate was chattering on and on as always. Sam was silent, as is often the case.

He began mumbling "not now son, I'm making toast" which we haven't heard in a while. I sat silently watching and realized he was saying one phrase after another to himself. He just kept repeating them.
"Not now son I'm making toast. If your going to eat cake you'll need to use a fork. your cute but I don't understand what your saying. " and so on.

It's been years since I have heard him do this. It had always been a sign of being stressed out.

He looked up at me and asked.. Are Zombies Real?
Tears were welling up in his eyes and he was dead serious. Sam overheard his brothers talking about a zombie Apocalypse and he had no idea they were joking around. Nothing I say can convince him otherwise.

Teaming up with Shell over at Things I Can't Say

My Heart Monday ~ Insults

To the lovely person who referred to my boys as birth control,

    Please understand my boys are NORMAL boys! The way they should be. I am frightened that you teach. I am glad you aren't teaching my boys. It frightens me to think you will have influence over peoples children. To top it off you are a special needs teacher. Thankfully you aren't in an age group I need to worry about any time soon.

    My boys are awesome! You have no idea what you're missing. You are just too young to understand still. Please, don't have babies any time soon darling. Not until you grow up and understand how hurtful and rude your comments were.

    At first I was really sad that you said what you did.  Then I was angry. You are a teacher after all, a special needs teacher. If anyone should understand energy and childhood exuberance it's you. Then I thought about how much your missing out on by not knowing my boys. So now I just feel sorry for you. You are missing out.

Feel free to read this GREAT article about REAL boys. 

The Level of Pain

Dear Soccer Parent at the JV Soccer Game,

   I heard what you said. In fact everyone heard what you said. If I had not been so busy keeping my child from hurting himself I would have confronted you. Your ignorance infuriates and astounds me. While it shouldn't it also hurts my core, because I love my son more than life itself.

You have no idea what we have been through with Sammy. You can't possibly understand what he has overcome. I pray you never have a child like Sam, because you don't deserve the awesome that kids like him are.

Autism doesn't have a look. It doesn't have a telltale sign that says "HEY SOMETHING ISN'T NORMAL HERE."

 I am sure you're the perfect parent and you have never had a tough time with your child. I am sure your child never back talks or gives you a hard time. I am also certain that rainbows and unicorns fly out of my ears every morning when I wake... oh wait.

I know I will see you at the next game. I plan to sit right beside you. I plan on letting you know exactly how awesome my son is. I plan to make sure you know I heard you and that in no uncertain terms that if it happens again they will be removing me from the field.

I am not a violent person. I don't agree with physical aggression.

You can dislike me all you want. Feel free to talk about me behind my back. Feel free to say whatever you want about my clothes, hair, body, temperament, teeth, or parenting.

HOWEVER, let me be very clear.
TALKING ABOUT MY CHILD IS OFF LIMITS.
IF IT HAPPENS AGAIN I PROMISE YOU IT WILL NOT END WELL.

Out of Control

I have a case of the "Crazies". The Crazies start when I put too much pressure on myself to be perfect. I have been feeling very out of control. There is a ton of clutter in the house that makes me feel like I am choking. It's physically painful for me when the house gets out of control. My OCD this pregnancy has been out of control completely. I have been so sick this time around that nothing is getting done right. It's making me crazy!

I just need one day where I feel good enough, happy enough, motivated enough, and mom enough to get it all done. I just need one day where I feel like I am failing a little less. Just.One.Day.

Instead I am struggling to get out of bed. My bedroom looks as though a hoarder lives here. My windows need to be washed and I am pretty sure there is a science experiment living in the back of my fridge.

It's days like today that make me feel like I am on the wrong path in life. That I have too many kids. Days like this make me feel like a failure.

I need a plan to fix this.

The First Day of School.

Sam has been anxious most of the summer because he knew school was coming. It turned out just fine in the long run, but we had some anxiety that first day. Then we missed the bus by about 2 minutes. My mom came and we drove him to school. He froze outside of his classroom but one of the para professionals he works with was able to assist us and get us into the room.

I watched the little girl he would be sitting with greet him. I watched her smile brightly. I watched the teacher shake his hand. I watched his friends smile, obviously happy to see Sammy.

I also saw his fingers by his side fluttering a mile a minute. A sure sign he was stressed. I watched him as he sat in his chair and tapped the desk with his finger. I walked away after a brief wave goodbye, but I saw panic in his eyes. It took every ounce of strength I had to not take his hand and bring him home. I wanted to rescue him from his anxiety and stress. I wanted to make it better for him. If I had a magic wand at that moment I would have moved the world for him. Instead I walked away. I walked away because it was what he needed me to do. I walked away because if I had stayed one more second he would have seen the tears in my eyes. I left the school with my eyes stinging and a heavy heart. He was scared and there wasn't anything I could do but walk away.

He did enjoy his first day. I missed him so much. Of course I was happy to have him home ... until he punched Nate in the chest. Then I began counting the hours until the next day of school!

Police Department

Today we brought Sam to the police department in our town. For the last few weeks Sammy has been unbuckling while the car is moving. He knows it is dangerous and he knows it makes me crazy. So, what does he do? UNBUCKLE!

 I warned him last time that it is against the law and I could get in big trouble. I reminded him how dangerous it was. He thought it was funny. I warned him that the police would not find it so funny. He decided he wasn't afraid of the police. Guess where I took him?

YUP



Dan went ahead of me and let them know what they were dealing with and I showed up with Sammy. The officer was awesome and Sam was flippant. The officer told him at one point to face him and Sam laughed and turned around. UGHH ballsy to say the least! I went over and turned him around to face the officer. Mind you, the officer was not asking for eye contact, just a little respect. the officer handled it so well and had just the right bit of edge. Normally I wouldn't go to these measures, but this is something serious. I am not a fan of scaring kids but this needed to hit home. The officer even showed him pictures of some crushed cars and explained what could happen to him in an accident.

Then the officer made it all come together. He told Sammy "Your mom loves you and doesnt want you to get hurt Sam. If you can behave and wear your belt , no more unbuckling, you can come down and I'll give you a tour of the place. How's That?" Sam lit up like a Christmas tree . Lets hope there aren't any more issues.