Tuesday, January 31, 2012

Follow up for Amelia

Parents: Transplant for disabled girl now a possibility at CHOP | Philadelphia Inquirer | 01/31/2012:

'via Blog this'

Some of you may have read my post a while back about the little girl who was denied a transplant based on her  developmental disability. The doctor they met with felt that she should not have a transplant and therefor would not recommend the transplant to the board. 

What followed was an incredible outcry from the  special needs community. The hastag #TeamAmelia popped up and people began posting. Sunday Stilwell created a petition over at change.org and over 35,000 poeople have signed it.

The hospital has met with the parents and has agreed to look into it further. check out the article. It gives me hope for little Miss Amelia.

Sunday, January 29, 2012


My mom took Sam and Nate last night. We had planned this for a week so that we could go up to the vocational tournaments this weekend. We obviously aren't going now that Tyler has been hurt and is out for the season. He is thankfully feeling a little better than he was on Wednesday when it happened. But it's just Grace, AJ and Tyler home with us right now and it is so quiet.

It's weird, I feel guilty enjoying the quiet. I have a long list of things I want to get done before they come home tonight. Laundry and vacuuming, reorganizing the playroom and the basement. So many things I want to do, but instead  I am drinking my coffee and writing. I am relaxing. It feels almost sinful to be chilling out when there is so much to do.

Today is my oxygen mask. Today it's about me. Today I get a break from the pull of what autism has done to this family. I don't have to worry about how I say things. Today I can breath. It's about damn time , don't you think?

Thursday, January 26, 2012

Wonderful Night

It's chaotic here right now with Tyler being injured. Sammy was with us yesterday at the hospital and got really upset when Tyler cried out because of the pain. So you can imagine my surprise when time for home work came and he actually did it!

It was 10 sentences and both Daniel and I groaned figuring it would be a big fight. We were prepared to scribe if need be but had him start anyway.

1. I buy 10 pesisuv cholit.
2. I sat by my frendonthe bus.
3. I threw a Big fat ceachboll.
4. I went through the Porck.
5. I went on the plane.
6. I ate Plain yogrte .( he drew an arrow from the letter e to the letter o to say that it should have gone there)
7. I write a Big letrto my mommy and mu DADDy.
8. I digda Heooghole in my back yord.
9. I ate the whole intrtire Kack.

he skipped one but that is fine. I am so really proud of him!
Can you make out what he wrote?

Wednesday, January 25, 2012

All is well

I am so blessed. My boy AJ is OK. We will wait and see with the lump on his rib. It doesn't look like anything that needs immediate attention. The ribs grow along the front side of the rib where they go from solidified bone to cartilage. The lump is directly on that growth plate which is not terribly uncommon when kids like AJ hit a spurt. It's just taking his bones a little longer to catch up.

His back is more complicated. He doesn't qualify for a dx of scoliosis since the curves in his spine are not severe enough. However he does have an issue with his spine that needs attention. PT and exercise for the next 3 months and then a recheck.

I feel blessed

Tuesday, January 24, 2012

Prayers Wanted

There is so much I could be blogging about with Sammy.
His sudden paralyzing fear of the stairs while wearing socks.
The extreme refusal to do anything difficult.
His request for a day off or early dismissal every.single.day.
His obsession with Star Wars Lego (which I am now addicted to as well).
AJ rocking the "hawk" at 8

 None of those things really matter today, because today isn't about him. My son AJ noticed a lump in his chest a while back. we didn't think anything of it. We did show it to the doctor at his physical and they sent us for an ultrasound. The ultrasound raised red flags. We know now it isn't vascular and it isn't soft tissue. We know it's attached to his actual rib and it does not show up on X-ray. We don't know what it is or why it's there. The pediatrician  has referred us to Boston Children's Hospital for a surgery consult. I am a nervous wreck. The doctor did say that he doesn't "think" it's cancer, that it "probably" is something benign, but that we really should err on the side of caution and check it out. That.scares.me.
AJ is also being seen by the spine and scoliosis clinic. His thoracic spine has a visible curve to the right shoulder. His back always hurts him, poor kid.
AJ at the soccer banquet at 13

I guess my fear is that after all this boy has been through in his life. I keep thinking about all the things he fought through and survived,  the times he has shocked doctors with quick recoveries, the times when the doctors couldn't quite understand how or why he recovered, and wondering if our luck is going to run out. Has he played his hand too well. No one wins 100% of the time right? What if what if what if...

I would like to believe that just having a child with special needs changes the odds for my family. That lightening can only strike so many times. I know that isn't true. I see it in my circle all the time. I KNOW what can happen. Just because our family has one cross to bear doesn't mean we wont be handed another. In fact it means exactly bubkis. It means nothing. So I am scared. I don't know what they will say today. The logical part of me says it's fine, it's nothing...but my stomach is still in knots.

So if you have a second say a quick prayer for AJ and if you don't pray then send us some good energy or whatever. It's all a plus really

Saturday, January 21, 2012

How Exciting.

My very first spam comment. how wonderful. I feel like I have finally arrived

To Whom it Does not Concern

To you~
   You may not agree and you may not understand, but you also do not live this life. Your words play on every insecurity I have as a mother of a child like Sammy. But understand my drear. I don't make this happen, I do not make this up and I don't wish this on anyone.

Do you understand what Autism is? Do understand that nothing I do makes this happen. I didn't teach him not to talk until he was over 4. I didn't teach him to flap his hands and walk on his toes. I didn't teach him to wake at 3 am and scream over the pajamas he was wearing. By the way Sir he still does that today. Sometimes he gets so frustrated that he cannot access the words he has, so he just stands there. Screaming. He sometimes gets so frustrated and angry that he hurts himself. As a mother you do everything you can to protect your child from being hurt by anyone...what do I do then when the person hurting my child...is my child? Do you really think I create this? Do you really think I want my sweet angel boy to live like this?

Do you have any idea what it's like to live a day in my shoes? I wake at 3 am to fight with a child about pajamas or video games.I still have to physically dress my 7 year old child. I still have to wipe him after he goes to the bathroom. Am I babying him? Maybe, but it beats the meltdowns that spill over to derail the entire house. He screams at the top of the stairs because he is afraid they might be wet. He cries if it rains or snows and refuses to leave the house. He goes to school, refuses to work and gets in trouble on the bus. I am not there while he is at school. He runs away at the bus stop, tears through peoples yards , no matter how many times we tell him not to. He collects dryer lint and is obsessed with Lego blocks. He strips his clothes as he walks in the door. He has worn underwear exactly 3 times in the last 12 months. He eats in seconds and twiddles his fork. He flaps and screams while doing his homework. In the last week he has looked me in the eyes one.single.time. At 7 he still sometimes calls me dad. He runs through the house  almost hysterical until we force him to sit still so he can sleep. We finally get him to sleep just to start over again in a few hours.

I am not with him at school but he still acts this way. I know I am pretty cool but really I am not so amazing that I can convince doctors of this. A TEAM of doctors all concur that he has autism. His school team, agrees that he has autism. I can show you the test scores if you like. He is AUTISTIC damn it. I don't make it up. I don't make it happen.

At least now I know where we stand  and will limit my time accordingly. I am hurt beyond words. You may never know that this is to you, but that doesn't matter. I have to get this out. I am so sorry that you are so small minded that you can't see how we struggle. I hope and pray that you never know these bitter tears. I hope and pray that you never have an autistic child. Because , right now, this doesn't concern you, and I hope it never really does. Your ignorance frightens me.

Wednesday, January 18, 2012


Sammy  has come into my bed here and there over the last year. It doesn't happen often anymore but it does still happen. Last night was one of those nights. I woke to his hand against my back, fingers splayed and his nose against my shoulder. It's his plugged in posture. So very rare for him to connect to me. It's been a long time since he felt the need to be "plugged in". As soon as he woke a bit and I woke too the hands were down and his face was mushed into the pillow.

It seems my boy had a nightmare. It was enough that it forced him from his comfort into my space. It ripped him from where  he likes to be ,out of his comfort zone, into my energy to reassure him. He NEEDED me to be there and he NEEDED me to be close. I was his comfort. I can count on one hand when that statement has been true.

Turns out his favorite phrase " I hate you mom ,I hope you die" came true in his dream. Both his sister  and I died. He was distraught and perplexed by the feelings that overtook him. He was heartbroken and tearful.

He almost said it again today, but he stopped and Said " I hate you, and I hope you... don't die! But I'm really MAD you ruined my life"

I may not be able to win them all but I do think I won this one

Monday, January 16, 2012

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.

Sunday, January 15, 2012

How Is THIS Legal

Brick Walls | wolfhirschhorn.org:

'via Blog this'

It takes a bit to ruffle my feathers this much. I am so ANGRY I even considered using profanity in this post. Don't worry I won't. I am so angry after reading that article up there that my hands are shaking. I had to actually wait to post this because I am IRATE. My heart is pounding in my ears. It isn't even my child we are talking about here... but it is ,you know?
Because today it's a transplant team refusing to treat a child with developmental delays tomorrow it's treatment refused for kids with autism. The slippery slope that runs along the outer banks of normal into our world. This world of ours while it has challenges and tears , it has so many moment of absolute glory. We have so many moments of sheer joy unhindered by any constraint that society sets forward. What these doctors are saying is that if you don't meet our standard we will let you die. you don't count. You aren't good enough.


It is 2012 right? Even if I get the numbers backwards we aren't in the dark ages any more right? SO HOW IS THIS OK? The idea that for one solitary second my son or any other child doesn't have as much right to life as a "typical" child infuriates me. I don't love my child less because he is has challenges. My child isn't any less part of my life because he needs help. Where do we draw the line? If this child were shot it would still be murder wouldn't it. how is this any different?

So to that transplant team in charge of this beautiful girl ~ put down the loaded gun and do your job. shame .on. you.

you can sign the petition HERE

Friday, January 13, 2012

This Moment

Started by  soule mama . Post just a moment, something you want to savor and remember. Then if you feel like you want to add your own moment. Head on over to soule mama and link your own.

Smile for me dear sweet child of mine. 
kisses and hugs for you
Smile for me dear sweet child of mine
know that these moments are few

Thursday, January 12, 2012

Because of this

This is the video my husband send me this morning

Because of this we will be OK. Because of this Sammy will be great. Because of this I can get up another day, move forward, and move on. Because of this the darkness doesn't scare me. Because of this we will make it. how blessed I am to have such an amazing partner that loves our children. I am truly blessed beyond words

Wednesday, January 11, 2012

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


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.

Tuesday, January 10, 2012

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

Monday, January 9, 2012

My Heart Monday

I want so much for Sam. I want to see him grow and be strong. I want him to be happy and unafraid. Sometimes I worry that I make it harder for him. I push him, I make him do so many things that he really just doesn't want to. Sometimes it's for me, sometimes it's for him. Things like wearing socks with his shoes. Honestly I don't want to have to buy new shoes every other month because they become the stinky shoes. I don't make him wear underwear because that would be torture and honestly no one is going to know (well I guess they do now huh?) I make him say hello to people we meet, I make him look up. I make him say thank you. I make him try things. I make him do so many things that seem counter intuitive because I think it's what's best for him. I have no idea if what I am doing is right. I feel lost just like every other parent on the planet.

Tonight is a night like that. I feel lost, devoid of a path. I feel like each day bleeds into the next like watercolor on a coffee filter. Each color mashed up beside it. For me, parenting has always been a little like that. Putting autism in the mix just turns the colors muddy and dull. So I pull back and regroup. I clean my brushes and my paints. I set aside my arts for the night and I sleep. Restless,churning sleep. I wake and I start all over. Hoping that the water colors on the coffee filter will make a beautiful butterfly this time and not just another wet soggy mess to clean up.

picture from craft kaboose

Saturday, January 7, 2012

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

Friday, January 6, 2012

This Moment

this moment ~ started by Soule Mama. A moment with no words you want to hold on to and cherish and never forget.

Remind me, dear child, how far we have come. 
I will see the reflection of you.
Remind me, dear child, how far we've to go 
I will see the reflection of me.

Thursday, January 5, 2012

a Day Off

Sammy hates school. There is no doubt in my mind that he struggles with it. Learning is hard for him, I know this. Here is the issue however. He is awesome once he gets to school, every day. The teachers all say he never has behaviors (except for a few very isolated incidents) he never acts fresh and he never yells or screams. He doesn't stim and he is 100% appropriate in school. This creates a 2 fold problem

1. I feel like crap because he is horrible at home. He is disrespectful and he screams at me. He yells and cries over homework and acts like a total beast! He spends a lot of time stimming on things like the blinds in the bathroom. He refuses to get dressed in the morning.He refuses to eat breakfast some days.He tells me he hates me and that I am the worst mom ever. He called me a freak show..where he got that I have no idea.

2. They don't see how hard it is for him  ...I cant just go tell them it's hard for him. He is fine in school, they wont believe me. I really wonder if they think I am just crazy and making it all up. I know that is probably my insecurity... after things being so tough in our last school I am really afraid to rock the boat too much. He get's lots of help and his team here is WONDERFUL. Mrs. L and Ms G. are incredible people. the principle is fantastic as is the nurse the OT and the ST. I love them and they love Sammy. We are blessed with an incredible team. Even the best team however can't make it not hard for Sammy. He cries every morning begging me to just let him stay home. I totally would if he wouldn't be beating up his little brother 5 minutes after the bus left.

Much like every day he cried and sobbed that school is too hard and his teacher is stupid and he hates school. Can he please just stay home just today? He will go to school tomorrow he promises.... oh how I wish I could just say yes.

Tuesday, January 3, 2012

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.

Sunday, January 1, 2012

Christmas Vacation

It's almost over. I haven't been around for a multitude of reasons. Some good ~some bad~some are just life.
Vacations are always filled with dis-regulation and stress for Sammy which boils down to insanity and stress for everyone. He was sick at the very start of vacation and the medication made him very stressed and violent. Then Christmas morning (which is hard to begin with) threw us all for a loop.He received Lego Star Wars from my parents for Christmas and he is perseverating on it. Then our 23 year old neighbor that Sammy loves passed away (which is another post in itself,I promise I will get to that one). Grace got sick and so did AJ. Turns out AJ has mono! then Tyler got a concussion on Thursday at practice. For an quirky aspie kid, the doctors struggled to figure out what was normal and what wasn't.(again another post for this week)

This week has also been filled with amazing things! He was able to purchase his own bag of chips at the dollar store alone without help. That sounds like nothing to some but for us it was a GIANT milestone. He has been waking up early every day and has been mostly agreeable. I am pretty sure he has snuck down a few times just to play the game. We have also discovered Sammy knows how to count change! He has told me sweet things ("I thought you were soft and squishy but you're really hard and rough! but I love you anyway,no matter what")and things that break my heart (I don't want to be a kid with autism ,I just want to be like everyone else.No one else has autism,I am only one")

So many things we need to work on here, and so many things I can't fix. I have so much t tell all of you about but for now I am going to enjoy my boy and the last 2 days we have off together.