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

Guardian-keeper for life

You, you who has smiled when you’re in pain 
You who has soldiered through the profane 
They were distracted and shut down 


So why, why would you talk to me at all 
such words were dishonorable and in vain 
their promise as solid as a fog 


and where was your watchman then 


I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honor of all, as your guardian 


you, you in the chaos feigning sane 
You who has pushed beyond what’s humane 
Them as the ghostly tumbleweed 


And where was your watchman then 


I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honor of all, as your guardian 

Reading the lyrics I am sure Alanis didn't intent to speak to me about my son and his autism. Yes HIS autism, because you see, every child's autism is different.  I read that line  "So Why, why would you talk to me at all , such words were dishonorable and in vain, their promise as solid as a fog." I thought that is where we were. I dared him to speak to me, to find words and use them. Even though for years those words made little sense to him. He spoke in phrases he had heard and scripted for so long.  He was so lost for so long it was like watching a giant tumbleweed. He was in pain trying so hard and I didn't get it because I couldn't see past my pain. Where was his watchman then? I was right there, I just didn't get it yet.

I get it now. I hope he knows that. I hope he knows that I am his keeper for life, I will always be his warrior and his angel. I love that boy with every breath that is in me, in ways I can't even put into words. I may not really like his some days, but I always love him. I feel a deep responsibility for Samuel. More so than the other kids, simply because he needs it more.  He needs me more. I feel as though I must protect him, not just from everyone else, but from himself as well. He is a stunning little man and I am so blessed to have him. I feel bad that being with him makes me so tired!

So while I am sure Alanis didn't intend to trigger this post about my son, she did. Thank you Alanis for writing a song I can relate to. The song brought me back and reminded me, that he has overcome so much.

Big News

We announced something amazing yesterday to everyone or rather Grace announced something

YUP. Grace is going to be a big sister in February / March of next year. We are thrilled but there is a level of trepidation that comes along with it. Yes, I know every mom get's nervous about having babies. I am no different, but adding the special needs cocktail into the mix and some moments my anxiety takes over.
There are no guarantees in life, no 100% anything, no promises, nothing that says lightening won't strike twice. Or in our case 3 times. I know so many people in the autism community choose to not have any more after they have their child with autism. I know , I understand, and I don't judge them in any way. We are all in different places.

I would resent Sammy and autism if I felt it had forced me to give up my dreams of a big family. I would be bitter and angry and heartbroken if I had to give up simply because of autism. No one should have to give up their dreams. It's just unnatural. Isn't that what I work so hard with Sammy for? I want him to see his potential, to see his dreams, and to not hold back. I want to see him fire off into the sky and shine brighter than the moon. WHY? Just having autism , doesn't mean he doesn't have dreams and hopes. He must. We may not know what they really are yet, but we will. He will be amazing!

He will be AMAZING and he will be cheered on by both younger and older siblings. Because autism has messed with me and my family enough I wont let it take this dream too.

One Foot

I want so badly to write a happy post, I do. I feel like sometimes people think my life is always horrible. It isn't I promise. I am just a control freak who likes to micro manage the world around me. I get upset when things aren't my kind of right or perfect.
My friend has a great saying "avoid the wrecking ball at all costs" well....
Easier said than done my friend...easier said than done. However it's just one foot in front of the other
You see, the issue with a wrecking ball is it starts out small. By the time it's this giant mammoth of destruction you have gotten so use to it that it's too late. It's hard to see it with blinders on.

So back to that happy post. I woke up today to some unexpected stuff. While that is downloading and processing I will leave you with this.

This is where Dan found Sam the other day. In , yes IN, the dog food bag with a bag of chips.

Mud Baby

We have been renting a car since our smaller car broke. I only rent it on the days I need to work because Wonder Hubby has to leave when I am just getting out of work. I work over an hour away right now in Newton and Wonder Hubby works almost an hour away in Westwood. He has to be at work for 7:30am and if he leaves any later than 6am he will be late because of the traffic patterns. I get out at 6am and drive to meet him and the kids halfway between the two. It's like a relay race. It sucks but it's life.
So we have been renting a car and it needed to be returned Friday by 5:30pm. I took Grace with me and left the two teens in charge of Thing 3 and Thing4. Thing5 was not happy to get into her seat but we got her in (picture trying to put a cat in a tux) and I was on my way. The kids were all in the yard playing.
20 minutes we were gone.

TWENTY FREEKING MINUTES!!

Daniel and I pull up and see Sammy riding a scooter outside the yard in a small circle. I burst into uncontrollable laughter as did Dan. We parked the van and this is what we saw...

Yup That's Sammy covered in mud from the garden. He was so excited and happy. He looked like a cross between hulk and a hobit! I found mud everywhere, both inside and outside the house. Apparently Ty went inside for something and this was the result.

Bath Time

From my old live journal in 2008

talking with sam today 
Sam - Want Cocobar?

Mom - First breakfast then cocobar. Waffles or fruit?

Sam - Want cocobar (screaming now)

Dad - Cereal?

Sam - Momm said wapples!!!!!!!!!!!!

mom - Ok want waffles!

Sam - NO MY HATE WAFFLES WANT COCO BAR

Mom - first breafast then coco bar. waffles or fruit

Sam - Wapples..... and syrup

yay! of course daddy had to make them since now mommy said no coco bar. he ate his waffles and now happily stimming with his horse

fyi coco bars are not candy bars but snack/cereal bars that are gf/cf and he LOVES them




Another post

like last night sam asked "my heart in there?" while pointing to my chest. he meant to say "your heart " Im sure but none the less...the moment was amazing. I just wish he could tell me he loves me...i tell him and he ssays "hanksss mum"(thanks mom)

It is amazing how far we have come. but with the drama here today i am reminded how far we still have to go.

Sunshine

Sometimes I get rainbows with Sammy. It's as if the windows fly open on a warm summer morning by the ocean. The breeze comes in and calms my soul, quiets my mind and helps me to see the flowers that bloom in my life. Flowers like my precious boy, so proud of himself.  He cut his hair, all by himself.

I was so frustrated at first, and also pretty angry! He was a little sad he cut his superman curl (the curl under his bangs and the only curl on his entire head) He showed everyone how he cut his hair all by himself! I have never seen that boy so proud of himself. He went to school with it as is since he wont let me fix it. I really hope the kids don't tease him.

He was giving out shopping carts at Market Basket yesterday as well, just so he could let people know that he cut his own hair.

fluffy head before

after ~ with daddy's glasses too!

I am blessed with a boy who has sunshine moments inside of some rather dark days. I am blessed with a breeze today.

Second Chances

You all know how heartbreaking it was when our dog hurt our little girl. I have been slowly working through all of this in my head for over a month now and I have made some major discoveries. The bottom line is the dog, our sweet Chance, is not aggressive.

We talked to the original shelter and found out that Chance is 5 years old and a Labrador/Fox Hound mix.

We started training with him 2 weeks ago with RICK from SOUTH COAST CANINE we just love his thinking and he has great people skills as well as dog skills. Since beginning training we have a completely different dog. He is no longer jumpy or skittish. He follows commands very well. He stopped pulling on the leash when we walk. He heels, sits, stays, comes and goes to his kennel. We set up a gate across the playroom so Chance and Grace are never alone in the same room together. He eats in his kennel just to be safe even though he really doesn't show any food aggression. He no longer gets rawhide treats. Grace isn't scared unless he barks. He can sing and that doesn't seem to phase her . Oh the joy of hound type dogs.

This was tonight. Dan was putting Sammy to bed and in true Dan fashion fell asleep too (so much for watching the new Footloose) Chance snuggled up beside them. Sammy really is that dog's person it seems. Chance loves that boy in a way I have never seen. He tattles on him when he sneaks out of bed. He keeps him from leaving the yard. He sits beside him when he melts down.

So tonight as I watched them for a moment I thank God for all the second chances in our lives. Without them, things would be so different.
I am quiet certain that Chance is glad to have another chance too...

For My 1 in 88s

My darling boy, my sweet sweet Sammy. You can't possibly understand how very much I love you. Too the moon and stars isn't even close and 10-100 is too small a number. My darling feather headed boy, you light my days with your smile and hope. You shine  through your beautiful blue eyes like nothing I have ever seen before. I cannot imagine my days without you. I love you so much, your being, entwined in  my heart strings. I keep you close by and hold tightly because I don't know what your future holds. You asked me tonight to check your brother to make sure he was ok, one year ago that would have never happened. The moments and phrases that are uniquely you make my heat leap with joy and pride. Seeing your beautiful school pictures come home, with your hair that you combed yourself. You are a powerful force my boy. You are amazing in so many ways that even we haven't figured out yet. you have made me aware of emotions I wasn't entirely sure I could feel. I am grateful to be your mother.

Even in your darker moments, my fluffy headed boy, your being resonates with everything around you in a way I have yet to find words for. You are often so connected yet detached, happy yet sad, angry yet joyful and always uniquely you.

My sweet fluffy headed boy I hope you know how much I love you. That someday, when your "big as daddy", you will read these words I have written for you and smile. You will picture me with my arms wrapped tightly around you and my nose buried in your hair and you will remember what it was like to be  little. I pray that you will be happy with where you have been, who you are, and what you have accomplished. You see for some of us, things come easy. Yet, we still give up, we still complain and we still get angry with God because we just don't understand.

 So for now I want you to know.
 I WILL NEVER GIVE UP ON YOU.

I have done something out of the ordinary, something hard and scary for me. I signed up to participate in a half marathon for you. Because I can't fix so many things that are difficult for you, the least I can do is step outside of my comfort zone, raise a flag, raise awareness ,raise money for autism. I am doing this for you my sweet fluffy headed boy, because after all the determination you have showed me in you life it is the least I can do.

I hope someday you look back and remember how very much I loved you. I hope you read this in 30 years and it makes those difficult moments less painful. . I can't eliminate sorrow or stress, I can't make the world bunnies and tea parties. I can't save the world. But you sweet fluffy headed boy make me really believe I can.


And as always Linking up with Shell over at Things I Can't Say

a Land Far Far Away

I would love to move somewhere warm. I really don't love being in Massachusetts. it snows here and I get so anxious driving in it. I want to go south, but a lot of the research I am finding says that the further south we get the less services Sam will get and the more fight we will get. I know that isn't quite true for all kids south of the Mason Dixon Line but it seems to be true for a lot of autistic kids. I have heard about a great program in Florida but I Sammy seems to be ahead of that game right now.

I think the issue has a lot to do with kids like Sammy and the fact that they "look normal". I always have well meaning people say that to me and it makes me mad. Just because he looks like every other kid (although way cuter than most) doesn't mean he is. It also doesn't mean he doesn't have the same feelings and emotions that the other kids do.

My point being, I want to move South. I want to move WARM and I can't, just like I can never die (EVER) or  have a day off. It's one more way that autism has changed our world. I can't just up and move to any place with a good school. I can't just choose to home school him as I would the other kids. I know he would still learn if I did, but forgive me I do need that break.

winter snow

I want to move, but don't know where to start. Where are your special ed programs for autistic kids? What is good/bad about them. Help me find an option in warmer weather. PLEASE, my toes are cold!

My Heart Monday

I sat with you last night with my nose buried in your fluffy soft blond hair. You always smell the same, even after a bath. It's something that is and has always been uniquely you. It makes me smile and I know someday you will be bigger than I am. That day is coming fast. How I miss your walk, and your silly dances. How I miss the happy you on the dark and stormy nights. My focus is shifting to a different goal for you. I am learning to accept this little by little each day. Please love be patient with me. It is so hard to release where I thought we would be

Some days my darling boy I miss you much it hurts.I remember the tiny baby you were nestled in my arms. The baby you were before you learned how to push away,move,run. The child you were before you autism closed you in a little glass case. Your eyes were always different and I never understood that, until you were older and we were told. I miss kissing your face without you squirming away. I miss holding you against my skin and drinking you up like cold water on a summer night. Kissing your curls and breathing you deeply. I miss the tiny baby that needed me.

I want to hold you and not be pushed away. I want a hug, a real one, without asking every day. Instead I get a peppering of them throughout our lives. Feast or famine they say, and this is no different. I may not get all the hugs and kisses I want but I have come to see your affection in the subtle things you say and do. I see it when you lean on me while you play Wii. I see it when you reach your foot under the dinner table and rest it against my leg tapping just sets of three. The moment you tip toe dance and giggle when I catch you unraveling my toilet paper for the hundredth time. the pieces of your snacks that leave on my computer, for me. Small moments that I hold so tightly, I fear they will shatter in my hand as a glass bird.The beauty of each moment overwhelming me like ocean waves upon a grain of sand.

 For many days and many nights I mourned the loss of the boy I thought you would be. I cried for the boy I had imagined sitting beside me coloring pictures and making sandcastles. I cried bitter tears for a child that said my name and called for me as I left the room, helped me in the kitchen, and snuggled beside me to sleep. I sighed softly at the idea of having a boy that enjoyed my company, knew his letters and  numbers,sang little nursery rhymes and said "I love you". I cried because none of that was to be had. Instead I had a boy whose whole world was parallel to mine, with locked doors and no windows.

But now; now young man I celebrate the boy you are. The moments of sunshine and rainbows. I smile and I thank God for you and your elaborate ideas that only you seem to understand. I praise the moment of joy and laughter that are sometimes few and far between. I pledge to help make more of those moments. I was able to hear the words I longed for. I am watching as you learn how to read and sing simple little songs. I love that you help me in the kitchen even if it is only to steal bites of cheese. I applaud your battles each day to enjoy,live,breath and teach the world around you,as only you can. You my son are a shining star and for that I am eternally blessed.

I don't know where our lives are going my sunshine boy, I only know that together, it will be OK. I need for you to trust me. I need you to know, my darling boy, that every moment with you I am blessed beyond belief. My darling Sam, you are a ray of light into my day even when you are a little black rain cloud. I am blessed and honored to be your mother. Be patient with me my boy, it's only love that fuels me.

Biting the Bullet

So after reading Jess' post over at  Diary of a Mom about them adopting a dog  a second dog, and some information given to me by her I bit the bullet and reapplied to the local Lab rescue.

Lucky Lab header from their website

OH MY GOODNESS LOOK AT THE PUPPIES

We will not be getting a puppy even though they make my heart melt. That would never be fair to Sammy. The idea that he may get his "black labradog" makes my heart melt. If any of you reading this are looking for a dog to adopt please check these guys out. There are so many rescue dogs that need your love and attention, why go with puppy mill puppies?

I have my heart set on this. I worry that because of Sammy that it may be hard to adopt a dog. I want the best for my family. I grew up with a Lab and she was the most awesome dog ever! I want that for my kids.

They make it really simple to submit an application at LLR. just go To the application page and answer the questions. It's easier and faster than going to the DMV n your birthday!

Even if you just head over to take a look it's worth the time. You can also apply to foster dogs as well. I am willing to bet they can always use more of those too.

So we are keeping our fingers,toes,eyes, and elbows crossed for a black labradog.

The Mistakes I've Made

We all have those moments when we think ..Ughh why did I go there?

That moment started my day. I sat there today thinking about when Sammy was born. The feelings and emotions I had. The feeling that we were going to loose him even though nothing was wrong with him. The frantic checks on him every time he fell asleep. then came the crying.The screaming. the loss of words.The loss of eye contact. The loss of him. He wasn't present anymore. he wouldn't let me hold him. I couldn't comfort him. I was something that made his world just as miserable as shoes and socks and pants.

The journey of the fight back to this place we are at. The clawing and ripping against the mountainside to get back to where we could feel ok. The fight back to where we are now. It might not be everyone's idea of normal but it by far better than watching your young boy be tormented by demons you can't see.

Why did I spend energy looking back? It's frustrating and overwhelming because in ever step forward I see so much we have missed. We work hard to just be. To just love him. we do that we just love him for being Sammy. It has to be good enough. After all what do any of us have to offer but who we are? And who he is  is AWESOME

Bring in the MIlk

Daniel has gotten a bee in his bonnet and decided to start working with Sam I am on his self help skills. He has decided to work with Sammy on his ability to be independent in the world. For now that means teaching him safety and money skills. We have a very recent obsession with change. He loves it and counts it. He wants to spend it every time he get to one dollar. He wants to go to the dollar store all the time. Maybe the obsession isn't the money itself but the ability to go to the dollar store itself and have the power to purchase what he wants? think about that, can you imagine having that kind of control over your world. That must feel awesome for him. Thank God for Dan because I get so caught up in all of the day to day crap that I never think of these things.

Today, Daniel brought Sam to Cumberland Farms before school. We needed milk. Daniel went over the steps of purchasing the milk.
Run in,   ask where the milk is,   pick out the milk jug,  bring it to the counter,   pay for milk,   get receipt.  If you had asked me I would have thought it was too many steps but my biggest issue is the "run in"
Sammy asked "red milk or blue milk?" he was assured that red capped milk was what we wanted. He went in and did exactly as he should. He did forget the receipt but HOLY HECK he did it. He did well. I am so thrilled and Dan is so excited to be helping him on this journey.

Sammy did bring up to Daniel that he said "run in" and that he almost did. He conveyed to Daniel that it hadn't made sense to him since we tell him all the time to walk unless were playing. He was confounded by Daddy saying such a silly thing. Daniel explained figures of speech to him. He didn't quite get it, but hey
he bought milk on his own. Super huge accomplishment

Saying Goodbye

Our neighbor and good friend Matt died unexpectedly on Tuesday this past week. He was Sammy's buddy. Every time Sam saw his truck pull up he ran outside to say "HI BUDDY WHAT'CHA DOING BUDDY?" and Matt always answered back and smiled. Every time. It would have been easy for him to ignore Sammy, to blow him off, especially when it was the 10th time that day. Many times he would call me from the porch to let me know Sammy had gone outside and was now on the roof of the van, or eating rocks, or just doing something wonderfully weird. It was always coupled with " I don't want to get him in trouble Annie but I thought you should know." It is awesome having neighbors that look out for us.

The news came suddenly and it was harsh. There was no turning back,no time to prepare. Nothing but tears and pain and sadness. When I was told I remember the room spinning. I couldn't process the words, I didn't understand. He was so young, just early 20's. He leaves behind a son that is Nate's age. I can't imagine telling Nate he would never see his daddy again. My heart just breaks for that family. He really was a great dad!

He was Sammy's buddy. This is Sam's first real brush with death and it was harsh. To see my Sammy looking up with those sad blueberry eyes full of fear and confusion. He was sad though he did not cry. He keeps repeating to himself "my buddy...he died... he is in heaven,I'll see him again" I have caught him whispering it a few times to himself. He doesn't want to talk about it with me. He did not want to go to the funeral because he was afraid he wouldn't stop crying. His heart hurts and he is struggling to understand it. Nate gets it far better than Sammy. They both loved Matt and he was a great guy. They saw him as their friend,their Buddy. He is so missed.

So Matt rest well my friend until we meet again. Your Buddy misses you so much. We all do.

momentary quiet

All the children are still sleeping at it is 7:10am. SCORE. seriously now that I have said this I am sure one will be screaming shortly. I have enjoyed my coffee and my prayer time and I enjoyed it so much. Today is my Oldest son's first tournament of the wrestling season. It should be challenging for everyone because it is a memorial tournament for a fellow classmate that died last year in a car accident. The entire team was hard hit and heart broken. This year they are putting into forward momentum.

I read a post over at A diary of a mom yesterday that derailed me. it made me ill. It is disturbing and apparently a recent trend. I searched it on Google and was sickened by the avalanche of information on special needs children killed by their parents. My heart hurts and I cannot seem to wrap my head around it. I feel even more determined to make the Sandcastle Respite theory happen.

After reading all of it I began to think about the part we all play within the autism community and what people think about our lives when they read our words. I don't sugar coat it and I wonder how people see this blog. My husband referred to it as dark. That really isn't where this started for me.

In case it is ever in question. I am frustrated, I am furious, I am sad and I am sometimes overwhelmed. But make no mistake I love my life. I love my son. I am grateful to have him and his sparkle in my world. I wouldn't want to ever be without him. I appreciate and love and am constantly amazed by my Sammy. I wouldn't go so far as to say I wouldn't change him, because I would. I would love to rid him of his demons. I want to fix things not to make him somehow more palatable by society but to make his life easier to swallow for him. I hate to watch him struggle. My frustration and sadness isn't over the stress it causes me..its because of what it does to him. As a mother I hate to see my babies hurt, and Sammy often hurts and there is no way to reach him in those moments and that, that breaks my heart.

I have felt desperate and lost and crazy but never one did the idea of killing my child occur to me.  Granted, Sammy speaks, Sammy cuddles, Sammy has so many positives I could go on for days and bore you all to tears with the awesomeness of my little man.

If you are a parent of a special kid and you are struggling. Find someone to reach out to. Talk to someone. This isn't the end of the world. I promise you even if it feels dark and twisty right now, it won't always be that way. Here are some resources, use them if you need to.

Autism Speaks resource Guide
Autism Society by State

and if nothing else read Welcome to the Club and know you are not alone

My husband is amazing

I have been majorly overwhelmed here lately. So much so that I have passed the baton to my husband in dealing with the behavioral issue at school. My amazing husband wrote our liaison  at the school. He did a better job than I possibly could have. He was clear and concise without sounding angry. I just wanted to share with all of you how very lucky I feel right now.

The situation I called you about is Sam's escalating negative behavior.  He is having a problem on the bus, in the classroom and at home.  His physical aggression is getting worse and we are looking into getting help in the home for Sam.  My wife and I are concerned about the behavior chart for the classroom.  He got marked down for not turning in the signed chart (our fault), not having his name on his paper, as well as the whole classroom being disruptive.  I understand he is being treated as all the other students are being treated but he is still a special needs student. If this system worked for Sam I would support it. However, the increased trouble Sam is having keeping himself under control tells me otherwise. We would like to meet with Ms. * about Sam's issues but we would like the support of the whole team who is working with Sam.  Please let me know how to arrange this.  The best way to reach me is by phone after 3:00 P.M.

Thank you,

He did such a wonderful thing not just for Sammy but for me. He took the reigns and helped me feel so much less stressed. I needed this. When the divorce statistics are so high for families of special needs children, I feel blessed to have him in my corner. Tell me about the people in your corner.

Words for Sammy

My mother wrote a sweet poem for Sammy on her blog  Nanni's Notes  It's been hard on all of us dealing with autism here. It made me think. I don't know that I have ever written a poem or letter for Sammy.

My darling Sammy When you were born
placed in my arms cuddled close to me.
I saw for a second everything you would be
all the promise in your tiny eyes
I watched you in the nursery
all the babies around you were crying.
You my love, were content and quiet
How lucky a mommy I am
To have such a docile child
I watched you grow and held you close
You nursed so well.
You ate quickly never looking up
How lucky a mommy I am
To have such a focused child
We giggled at your quirks
and smiled at your focus
I watched you climb and toddle
so much more interested in movement than toys
How lucky a mommy I am
To have a child who entertained himself
You were learning and mumbling
You spoke slowly
but you spoke
You were just more focused on going
moving. running, jumping
How lucky a mommy I am
to have a boy who is so able
You stopped talking
You sat alone
Lining your trucks and blocks up
color coded

Your words disappeared
your smile went along
You screamed, you cried
where had my little boy gone?
We fought against the demons that followed
we struggled against an unmovable force
More discipline, less discipline.
more limits, less limits
nothing seemed to work
You stopped and so did our world
You railed against something I couldn't understand
then the words the doctor spoke
shattering me
your son has autism
lost and whirling
out of control
asking What can we do
being told nothing
and going home broken
embarrassed to tell my friends
with kids who really had autism
The doctors must be wrong
mistakes happen
not my son

For years We fought back
therapy at home.
therapy at school
speech
sensory
food
nothing was simple
everything hurt
restraining and holding
rage and disappointment
No way out
The sun did not shine
We fought out from under the snow that had fallen
we woke from our slumber
fueled by anger and fear
I wanted my boy back
he was just within my reach
the words came slowly
quietly at first
so less tormented
so less frustrated
he whispered I love you
what a lucky mommy I am
to have a boy like you
no matter what moments bring
no matter the struggle
I am so very lucky
to have such a wonderful boy

4... yes 4

Driving home the other day I looked over at Sammy. He was staring out the window with a forest gump smile on his face. We had just been to visit his new school and had the 10 cent tour. He liked the sparkly doors in the lunchroom and the boat on the playground. He did however mention the school reminded him of sweaty shoes. I don’t really understand but I just nodded. So as we were at the light he was looking out the window. I figured it might be ok to try a conversation…

Please understand, conversations with sam can be painful. He rarely makes cmpete sense and it is difficult to get his attention. I often feel dejeted and sad when conversations fail. But it’s been better, so much better, so I figured we could try.

Mom- hey Sammy what cha thinking about?

Sam- being 7

Mom - being 7?

Sam - yup (pause) I turn 7 ,I be big, I be different?

Mom - you want to be different at 7?

Sammy- yup. I be bigger? I run faster, be taller?

Mom - yes, Sammy when you get older you get bigger.

Sammy - then I be big …like superman (silence)

That was it.

4 volleys. Yeeeehhaaaa