Through my eyes

A dear friend just had her daughter diagnosed with autism. Everyone is telling her how sorry they are and that it will be ok. It made me think of what I wished people had said to me 4 years ago when sammy was diagnosed

1. those words don't change who your child is. He was that person before the words stuck to him like Velcro. The diagnosis doesn't change him it changes you. It changes you from the inside out. You may not even notice at first but wait...you will

2. Give yourself time to cry. If you don't those tears will hunt you down at a time when you least expect it. Like when your standing in the grocery store  in the middle of a ton of people.

3. Be ready. For the moments that make you smile,the ones that make you scream and the ones that make your head spin. Be ready for laughter and tears and everything in between. Be ready to feel an entire range of emotions in a split second with no warning over something ridiculous.

4. Know that the people who discount your struggles are just trying to help. They don't understand what an ass it makes them sound like. They don't understand how much it frustrates you.

5. Know that there are people out there to help.Don't give up.Don't give up..Did I mention DONT GIVE UP

6. It's not you. You didn't create his Autsim. You didn't do anything wrong.It isn't your fault.In a few years a study will come out linking zoloft use in pregnant women to autism.  It isn't your fault. You made the best decisions you could at the time with the information you had.

7. The people who remind you how it could be worse will make you want to scream. yes,it could be worse,but right now that doesnt matter,THIS is hard enough

8. This is not the end of the world, it just feels like it.

9. find diary of a mom's blog. read it. breath cry read it again.

10. One foot in front of the other. It may never be the same, but it will be OK.

One foot

One foot in front of the other. I have amazing panic levels right now. After taking my two youngest to the pediatrician today  I am still spinning, in fact I can't feel my toes. I can't think I can hardly breath.  after checking both children for developmental red flags we have received good and concerning news.

Grace is ahead of the game. Her development across the board is about 9-12 months. She is in the 25% for weight and 75% for height. shes healthy and amazing

Nate is social engaging and wonderful but there were lot's of red flags. Developmentally they feel he is behind and that something is just not right. They have referred us to a specialist at our local children's hospital. I want to throw up. I want to scream.I want to swear and cry and freak out. I am pissed. I am scared. my head hurts and I just want to give up. God help me.

9000

We have hit 9000 views. Again totally arbitrary number but it's more than double in just a few short months. I wanted to thank you all for stopping in. I appreciate knowing this blog gets read.

My Heart Monday

Sam I am can be volatile. You all know that so it's no surprise that  the last five days have been chaotic. I hate and love having him home. Some days he makes me cry and other's he makes me laugh so hard I cry. I love him every moment but some days I don't like him very much. It's hard to like being called names and being assaulted. That doesn't change how much I love him , or that I would truly do anything for him. It just sucks and it doesn't change.

We went for a tree, after much wailing and gnashing of teeth , we got in the car. He continued to flip out and finally after 25 minutes we were on our way. He was wearing yellow pajamas and an orange shirt with sneakers and no socks. *shrug* oh well I can't win them all. He found two pieces of tree on the ground and turned himself into a deer. I love those moments. I want to freeze those moments and remember only them. I think that somehow if I can string enough of those Fantastic moments together I will be able to pretend the bad ones don't exist.

Decorating the tree was not easy and honestly not a whole lot of fun this year. Sammy had his meltdowns and Nate screeched like a banshee every 30 seconds. I am starting to worry more and more that something is up with Nate. I can't even fully address it because it makes my stomach hurt. The one video I got of Nate shows Sammy in the background flipping out and my poor husband trying to get a grip on the shirtless wonder.

Some day my holidays will be peaceful...wont they?

Loose Connection

On a side note Sammy made me cry today after spitting in my face. I sat here for a minute after he left the room and burst into tears (it doesn't happen often) He came back in the room and saw me crying. He hugged me and nibbled my hair and rubbed my cheek. He asked "who did this to you I'll beat them up" When I told him that HE had done this that HE made me sad when he spit at me, he looked at me with eyes wide. It was a look of sheer horror. I know it wont matter in 5 minutes when he is angry again. I know, but for a split second I made a connection with him.

Thankful?

It's been a week since I have been in this space. An entire week and it feels like a lifetime. One week since I have even had the time to sit and write. I haven't even had the time to breath much less come here.It was a busy week much deserving of solace but with very little of it to go around.

3 half days this week sent Sammy into a tail spin. Each day has gotten worse. On Monday afternoon he broke the glass on my door.  On Tuesday he was sent to the principles office for calling his teacher a name and maniacal laughter.Wednesday I was physically unable to get him to the bus. Thursday was thanksgiving and I gave up. He watched TV all morning. My Uncle and his lovely daughter were here, along with my parents, my brother and his amazing fiance. Miss B has autism too, though she is differently affected than Sammy or Tyler. She sat at the kid table (what was I thinking with a kid's table?) MissB had a video camera and was taping the kids and this resulted in crazy over the top screaming peals of laughter continually  pouring from the kitchen. By the end of the night both Sammy and Nate were in full meltdown mode as was I. We wanted to take a day Friday and relax and get the tree, however even that didn't work. Sammy has obsessed over his pants being wet and over the possibility of things in his eyes.

It feels like it has been a week of meltdowns (and not just Sammy)

I need to breath.

but it feels like there isn't any air.

this moment

{this moment} - A Friday ritual from Soule Mama. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

If you're inspired to do the same, leave a link to your 'moment' in the comments for all to find and see.

Focus and Determination

                                                        
 Katie was laid to rest this week. A painful but powerful process began as 700+ people came out to pay their respects to an amazing woman. I knew her through our parish family of St. Mary's. I still sing there once a month even though I am currently a parishioner at SFX. Katie always sat in front of the piano and was always smiling.  I know her mother Karen, and she is a wonderful sunshine filled person. This week was particularly hard to take for so many reason.
   This community was ravaged by this horrific accident in our town. One woman is dead, her companion seriously injured, and another woman's life changed forever and an entire family heartbroken. Our town will never be the same again I am sure of that.
   Charlie Murphy spoke so eloquently at her funeral, not a single dry eye in the packed house. I had always known Katie as a happy gentle girl. What I didn't know ,until Charlie spoke , was how powerful that woman was.   I didn't know that her parents were told to abort her 29 years ago, that they chose life and they were given an amazing gift. Katie truly was one in a million. She fought for the rights of all differently-abled people everywhere, she spoke in front of crowds that would make you and me pee our pants. She was persistent and tough and apparently also a bit ornery at times. She was a woman with a mission, a purpose, a faith, and a direction. She worked hard, and even when she couldn't find a job she would do whatever it took because "she had responsibilities and needed to get paid". Some people will do whatever they can to not have to work, but not Katie. She worked hard.  I sat in the church silently. I looked around at how very connected Katie was. She knew everyone and everyone loved her.
   I sat there and listened quietly thinking about the impact she had on our world, and wondering if Sammy would ever be capable of that kind of fire.  I kept thinking about Katie's impact on the world and comparing it to Sammy's. Sammy isn't your sunshine and lollipop kind of kid. He is the child that eats whole bags of lollipops in mere minutes. He is so volatile and forceful. However after hearing Katie's friends and family speak this week I am more convinced than ever that Sammy will do great things.
   Katie gives me Hope, huge pie in the sky hope. The kind of hope that makes me want to get up in the morning, and helps me to breath when Sammy flipped about his pants. I listened closely to the stories her friends and family told and I thought... "there is hope for Sammy". I saw differently abled friends get up and speak and  I watched their parents stand beside them. I watched one mans father help him through probably the hardest speech of his life, and a mother reminding her son about boundaries as he spoke. I saw these people with amazing gifts and strengths and heart. I saw people who wore their hearts on their sleeves and felt every feeling like a flag above a castle. Something I have difficulty with.  All of it, every moment gave me unbridled hope for Sammy.
   This is an incredibly sad and difficult time for her family and close friends and there is nothing I can say or do to change that for anyone. I just want you (yes you) to know that through this I have garnered a ray of sunshine and it gets me through the day.
   Thank you Katie for all you have done and for everything your memory will continue to do.
A walk is being organised in Katie's honor check out the face book page HERE you know you want to. Let them know YLMB sent ya

The Night's Shade

Tonight, Sammy is beside himself. His attitude going down along with the sun.  I have broken up so many fights between him and Nate. He hit me again today, and spat in my face. It is time for me to rethink my position on medication for him I think

Testing a Hypothesis

Sammy can't eat candy but he loves trick or treating. I always struggles with what we to do with all the candy he gets. This year more than half of it disappeared before I could really worry about that (I think the teens took it to school). However I was smart and did pull out a few pieces for science experiments. Last year we used a bunch of the yucky candy and tested all sorts of things with it. This year, it was the first thing Sammy asked to do. So he set up an experiment 3 glasses of hot water, 3 cold, 2 twizzlers, 2 now and laters, two gob stoppers and 2 gumballs.

Right-Cold                                Left-Hot    

Here is what he learned.

Now and Later - In hot water melts in 5 minutes, in cold it takes over an hour. they make the water cloudy colored and foamy.

Twizzler - Never melt or dissolve no matter what you do. they do end up with a paste like covering. the water color does not change.

Gumballs - loose their covering but never loose the shape, they dont even get softer with just water. change the water (along with the gobstoppers in the same glass but do not change the clarity or consistency)

Gobstopper - Melt in about and hour in hot water and 3 in cold.
 We really had such a great time doing this together. I am almost tempted to go to the store and buy more candy to try different things

this moment

 A Friday ritual from Soule Mama, one of my favorite bloggers.  A single photo (or two) – no words – capturing a moment from the week.  A simple, special, extraordinary moment.  A moment I want to pause, savor and remember.  If you’re inspired to do the same, leave a link to your “moment” in the comments for all to find and see.

Finding the Rhyme

    I have been quiet here lately and for that I apologize.
 
    I have been struggling here with so many things. The death of a young woman with developmental disabilities  after a hit and run accent has rocked our town. The young woman Katie, was extraordinary in so many ways. Always happy and smiling and helpful. She went to our church, helped in some of the ministries and was faithful and unshakable in her faith.

    Her mother was also an incredible woman, one of the first people I spoke with after Sammy was diagnosed. Karen was just a few feet away as I lost it in the grocery store trying to figure all of this out and becoming overwhelmed to the point of tears. She spoke softly and assured me it would be ok. It made a world of difference to me that night, She gave me hope, as did Katie in her sheer awesomeness. My mother knows her as well, she is just one of those people you have to love. At least that is how I see it. I don't know if she is even aware of the impact she and Katie had on me. The hope and strength they both gave me and how grateful I am for that.

    This tragedy has rocked our little town. Everyone here knew Katie, she was just a ray of sunshine to everyone she came near. It has rocked me in so many different ways.

    I keep thinking about Karen, and how much this must hurt for her. She loves her daughter so much. Having a daughter of my own now gives me a different perspective. It's painful to think about. In fact it makes me ill to think about it. I can't wrap my head around the anguish and pain that poor woman must feel.

    I keep thinking about Katie. I cant imagine life was easy, but I don't think I ever once saw her not smiling. Really, not one time! I think about all the amazing things she was doing with her life, her time, her energy. I am not even half as productive.

    I keep thinking about Sammy and his adulthood, about his frailty and strength. I think about Sammy and his naivety, his anger,his fortitude. I think about Sammy and all he is to me and how his future is so cloudy. I have no idea what I think really it just overwhelms me with deep sadness and confusion. I may make sense of this someday. I highly doubt that, but I may try. If I figure out I will be back to let you know. I promise. If nothing else but to record it, make it permanent and static.

   until then ...

Sleep sweet miss Katie

My Heart Monday

I love him so much. I watch him sleep and all I can think about is how much I just want to snuggle up beside him and kiss his feathery soft hair. Some nights I do and some times he even knows I am there. It's better than trying to hug him when he is awake and aware. It's those moments when he pushes me away that my heart breaks. He spit in my face last night. He told me he hoped I would die in the middle of the store. Strong words and strong actions from a very angry young man. He gets it out the only way he can. His disappointment , his rage and his fear all scream from his fingertips towards me with speed nothing short of a bullet train. I can't ever get out of the way fast enough.

I love him so much I want to make his world gum drops and candy canes. I want him to see the wonder around him and enjoy the smell of dinner. I love him so much I want to carry the burden for him, I want to make it ok. I want to protect him from the snow that falls in winter and the nasty comments strangers make about us behind our backs. I love him so much I want to hug him and have him enjoy hugging me back every time. I don't want it to be like Russian Roulette, wondering if the next time will be the time he punches me in the gut again.

I love him so much I want him to know and understand that when he says mean things it makes me sad and he does know but he doesnt understand. I love him so much I would walk through a bear cave on the first day of Spring carrying food if it meant he wouldn't have to fight the demons that chase him. I would do anything if it meant that he could just sit quiet inside his head with out the darkness finding him. I would trade my every breath if it meant that he could just live and love and breath without the constant dfear and fight inside him.
Because , you see, I love my son.

So tonight I sit and watch as he sleeps. I gently touch his feather soft hair, the color of straw, brushed across his forehead (except where he cut it at school). I kiss is soft doughy cheeks, his long dark lashes and nuzzle his neck with my nose. I whisper to him how much I love him, that he is my Super Sammy. I whisper how happy I am that I have such a great boy and slip from his room before the tears take over because he doesn't like being wet.  I stand outside his room and I cry and I pray that somehow he will find relief. Then I sit here to write and pour out my heart because there is nowhere else that can contain the racing horses inside of me. I love my son with the fierceness that is everything I ever thought I could never be. I love my son.

It's about time

All we needed was one night of no hitting. One night without death threats and other such yuck.
Sammy did it! YAY. I am so happy. He did start to slip up at one point and I warned him. I always remind him the same way with "Are you earning? It's your decision. Breath and think" and for the very first time ever in his entire life. EVER. he stopped and thought about it (I don't know if he was actually thinking or just acting the part) and repeated " I am earning" What an amazing moment! I don't think I have been this happy since the day he spoke the first time.

This was huge, tremendous,incredible,amazing and all of those wonderful words one can think about! I am so proud of Sammy. He did watch the movie (Gnomio and Juliette) Thank you Tess for Netflicks!
When I told him I was making popcorn he said he didn't believe me because he couldn't smell it. I brought him over to the cast iron pan it was cooking in and showed him. We had a wonderful snuggle and hug while we waited for it to pop.

Moments like this are such a breath of fresh air. It's like that first kind of warm sunny day after the winter when you get to open your windows and let the fresh air in. yeah that.

the snowball

I found this at Soule Mama

This moment ~a friday ritual a single photo- no words capturing a moment from the week.

if your inspired to do the same leave a link to your moment here or over at soule mama.

Perspective directive

 Have you ever had to describe something to another person? Of course you have unless you have been living under a rock or you are entirely non verbal. Even babies will get their point across by making up signs, throwing themselves toward the object or by using some other squealing/screaming/wailing protocol. Descriptive words come pretty standard to most people and it is fairly easy to find the words to make another person understand what your talking about. Unless, your Sammy.

In our house context clues mean nothing and often times Sammy describes things in minute detail while leaving out the larger picture. Movies are often the hardest for us because he sees details that my husband and I do not. It's like trying to make a puzzle when all of the pieces are face down except for one. Sammy is trying to earn a movie night at home here. So close, just one day without death threats or hitting me.He almost made it last night until he lost it as we were sitting down to dinner and I got punched in the leg.

He came downstairs after calming down

He kept asking for the glass people movie. the move you know with glass people. When he was pressed for more information this is what we got

"The glass movie,not like mirror glass.the people they are made of glass. there are flowers and a tree it gets chopped up and one of the people get chopped up.There is a bird ,hes not glass he's plastic.One girl gets glue on her.they are made of glass"

well...
Finally he tells me they are red and blue and live in the back yard. At this point I figured it out. did you?
I'll let you know later which movie it was. So take a guess.

It's Just Me

We had a team meeting yesterday at Sammy's school. We had some concerns about the behavior plan being used in Sammy's classroom. After a very productive meeting I walked out feeling mixed emotions.

Before the meeting I was sick to my stomach, stressed and anxious. I wanted to put on my jammies and curl up on the couch. I wanted nothing to do with the meeting my husband had scheduled. I felt like I was going into battle. ( I wonder if this is how Sammy feels in the morning) This reaction to team meetings have nothing to do with the professionals at my sons school. It's my baggage and that is a long story stemming from issues with my x-husband and his family.

The meeting went well, we are all in fact on the same page and we are very lucky to have such a loving and caring team.I still am not sure how I feel about the teacher but I can see she likes Sammy. Sammy is beginning to read and really just doing well in school this year academically...I think.  I thought that last year and it turned out, he was doing great for Sammy just not great for a first grader.

His behavior at school has improved and the teacher assured me she is giving him plenty of leeway in the right places. He doesn't act even nearly as bad at school as he does at home. Not.Even.Close.

So I left there and all I can think is "It's me" It must be me, I must be doing something wrong to elicit this response from Sammy. I get all the anger, frustration and abuse. Meanwhile the school must either think I'm lying or crazy. They must think it's me that I am a bad mother. That I am a failure. It's my worst fears come true.

I am very careful to tell the truth even when it's not pretty , even when I know I didn't handle it well because I am not a liar. That I can control. I may be a failure, I may be doing it wrong. It may be me. I am living this life, no one else and I am the one doing battle each day. So when it comes down to it I have to live with myself everyday and I am doing the best that I can.

FAIL

word parade day at school and I missed the parade. We stayed up late and fixed Sammy's costume for the parade. He was a present. We wrapped a box he wrote the word it was great. I put it into my head 1:30 be at the school. well I figured 1pm so I would find a place to park and I did get there at like 1:09. fed grace and started walking towards the school. I couldn't figure out how I didn't get a better spot. Then I discovered the parade started at 1 not 1:30. I wasn't there for Sammy. Nate was so sad to have missed it. I was heartbroken and drove all the way home in tears.

I thought Sammy would be mad.I expected a melt down and much yelling. What happened next surprised both of us. I asked him if he was mad and then again BURST INTO TEARS. seriously Something isn't right with me today. I told him how sorry I was and that I felt really bad. He hugged me and told me it was OK and that he loved me. he gave me a bracelet and a sticker.

what an amazing little man I have

party time

We had a party and in true Sam form he was a mess all day leading up to it. Screaming and crying over the smallest things. His anxiety at the change in environment was almost too much for him to take. Once everyone got ere he was wild but containable and seemed to have had a pretty good time. He helped me prep food and it made him happy. His costume didn't stay on very long but who really cares about that ! We had fun.

By the end of the night Sammy had been sneaking so many pieces of candy and sweet things he made himself sick, but in the end he was fine really.

To be fulfilled

I hope he feels some type of satisfaction as an adult. That he can make his own choices. That he feels heard and loved and cherished. I had intended to write a new post for each thing I listed but the more I thought on it the more I realised that they cannot really be separated. I just want Sammy to grow up and be Sammy. I want him to know how amazing he is. I can't quite find the words to explain what I am feeling. So I was sitting quietly in prayer this morning and this song came to mind. this really does say it all...

 

I want him to be happy

Sam ~I have no idea what that means for Sammy. I guess it goes along with being fulfilled. What does someone need to be happy?

It's difficult for me to imagine Sammy as an adult because I really have no idea how he will change over the next 10 years. There is no rubric for development in this arena.  So lets assume he continues to grow intellectually and emotionally because imagining he can't hurts too much. I can see him with a job he loves. As much as I would love to imagine him a doctor, lawyer or scientist I don't think that is likely. Perhaps he will be a video game designer,an architect, a musician or something that allows him to be hands on. He loves Legos and video games so I think either of those things will make him happy. He thinks outside the box and there are so many ways for him to blossom even I cannot wrap my head around it. He always surprises me and I love that about him. Maybe he wont be able to hold a job and will spend his days playing video games and making puzzles. Will that make him happy? I don't know really. Right now happy for Sammy means no socks,underwear,school  or homework.

I know that regardless of his choices further on in life I am here, in his corner, every day.

Nothing changes that.


Sammy's ideas ~
Mom  ~what makes you happy?
Sam   ~ I want to be a fire fighter when I am tall.I want to be a cop.  I'm going to have a job.
Mom  ~why?
Sam   ~Because cops have guns.
at this point Sammy was done.

speed of thought

In the store today I was greeted by an adult male. I could tell he was special needs , and he reminded me so very much of Sammy. He wanted to see Grace and was so excited that she smiled at him. He and I spoke for a few minutes  about her and how she was a happy baby. He told me that he was a happy baby too and when he was little he hardly ever cried. He was so proud of this fact and was absolutely BEAMING. It got me thinking about Sammy growing up. His future and what that might look like. What do I want for him? What does he want for himself? How do I balance those things?


I want him to be happy.
I want him to be fulfilled.
I want him to know he is a good person, a gift from God Almighty.
I want him to know he is my treasure.
I want him to know how lucky we are to know him
I want him to be loved.

 this week I plan on writing about what each of those things means to me, and hopefully get Sammy to tell me what they mean for him. I need to get reconnected to him. I miss him. This week has just been so hard for all of us. So I'm taking a do over!

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.

coffee and a side of sunshine

5am here is rather dark and my it's the time my husband is getting up and ready for work.  He often places at least one sleeping child, sometimes two back into their beds as I pump. I let him leave Nate so I had someone warm in the bed, but had him put Sam back into his. Sammy isn't usually in my bed in the morning but he had a bad dream sometime around 3 am.
 Twenty minutes after Daniel left I heard Sammy getting up. If you have ever seen those old war movies with the sirens and lights flashing then you have a pretty fair description of what was going on in my head.  My jaw was clenched and my entire body on red alert as he padded (thumped really) and I said softly and gently and happily "Hey Mister"  Sammy whispered back "hey soul sister aint that mister mister on the radio, stereo" as he climbed in beside me and kissed my nose. I continued with the next line for him ( I am a sucker for music ) and his eyes got really big. the conversation went something like this

Sam: do you work at my school?
Me  : no Sammy
Sam:  do you have another children at my school before?
Me   : no Sammy
Sam: then how do you know that song?!

apparently they sing it at school during morning meetings sometimes. That and We Will Rock You. He is also learning a new song about belonging together.
I really do love this school. his principle is such a gift to those students. I watched her greet every single student by name as they got off the bus in the morning.

We currently have a vote coming up in town to build a new school and combine the two failing, dilapidated, old schools into one newer school with therapy rooms (rather than no rooms now or closets) I just hope and pray we don't loose that small school feel. It still wouldn't be more than 400 kids total, but right now we are only half that at the school. Plus the issue of Sammy going to another school for third grade while they build the new school.  I don't even know if that would be a good idea

So today has started with sunshine before the sun has even gotten up. I'll take it!

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

6 feet of snow

I feel like I've been buried alive and I am barely breathing, stuck under six feet of snow with no clue which way is up. I continue to claw at the ice until my fingers are numb and bleeding and all I have managed to do is get lost further in the snow.

Sammy during the spring snowstorm in MA

That's what this week feels like. I can't breath, I can't think... I feel like I am drowning. I feel like nothing I do is right and I can't win. It's time's like these that I wish I had a sign on my forehead that said "I am NOT as bad a parent as you think I am" Even though I don't really care what anyone else thinks, I still care what everyone else thinks. It's the same mechanism that keeps me from going outside in my underwear or picking up my son at school in a moo-moo. I can tell you I don't care until I am blue in the face, but I do care. I desperately just want someone near me that gets it. I am tired of feeling isolated and alone and frustrated when Sam lashes out at me in the middle of a store. I just want someone to get me , to understand how much this sucks. I want acceptance.

I feel lost in the ether, floating aimlessly. My son is very verbal and if it weren't for the behaviors he would be considered by most "high functioning". I feel like that label discounts how much he struggles ,how hard it is for him every.single.day. Sometimes I feel like we don't belong in the autism community because Sammy can often seem so freaking normal to people who don't get it. I have friends with completely non-verbal kids, kids still in diapers at 10 , kids who don't even acknowledge when their mother walks in a room. They seem to have it way more together than I do. How do I go to them and complain that I'm struggling?

So I don't. I sit here and I write.I fight the lump in my throat that threatens to bubble up when I speak. I am resigned  and beaten tonight. I sensor myself in the world and deflect the stares I get in the store when Sammy begins screaming.  I just continue to sit here and write.

SPD ~ Sammy Progress Derailed

Sammy is  a sensory seeker . He fights for them , finds them, abuses them. He crashes and whirls into everything around him so much like a tornado that it often leaves the rest of us dizzy. He is loud , he hates clothes, he stuffs his mouth full of food at every chance. He picks at his skin until he is one giant scab.   He gets OT in school and home is a sensory lifestyle. Heavy work like lifting back packs with books and moving the table are favorites here. Sammy loves mashing potatoes and vacuuming and he loves water. He wont swim but if the sink is full of water he gravitates towards it. Sammy crashes up and down the stairs , into bed, into the couch and into me. Could I stop him, yes probably but instead we redirect him to crash and bump and bang outside. I have given up the hope of nice furniture until he is much older. Sometimes people don't understand when they visit and will wonder why we don't try to "control him better". Even though he seeks sensory input he can easily become overwhelmed and anxious. It is like a fuse being blown because of overloaded circuits. There is no warning, no flashing red lights, nothing. It's like being caught on the tracks with a train coming. That is when he hits and lashes out or yells and screams or becomes abusive to himself. Those moments are so hard on him... and me.

It took a while for the kids in the neighborhood to understand why he acted the way he did. We had a bumpy road the first year. Thankfully the kids around us are just fantastic. One little girl helped him get his work done. They keep an eye on him when they ride the bus and explain things to him carefully . The other little girl is so very forgiving and sweet to him. They all just love Sammy and they all have fun together. We are lucky. It seems kids often "get it" so much faster than adults do.

Sometimes the neighborhood kids come over while we are having sensory play. Giant bowls of rice or ooblic, finger paints and play dough. They all love it and it's refreshing to see Sammy with his friends having fun.



The bus however has become a sensory nightmare for Sammy. Ideally he should sit by himself and in the front. The bus has become over crowded and Sammy ends up sharing a seat. The noise level, the chaos, moving and having someone touching him all create disaster. Last week he hit a child across the face on the bus. He reacted without thinking and just smashed the poor kid. I am mortified. I feel guilty. If he looses his bus transport I will probably end up fighting for special transport. I hate to do it but there is o way I can possibly get him to school in my van myself when he is combative. The principle understands where I am coming from and we have spoken about this before. Her job is to keep all the kids safe not just my son. My job is to make sure that we find what works for my son. period. I am glad we have such an awesome school system here and I hope it wont get ugly but you really never know...

For now Sensory issues derail him daily and I honestly can't seem to help him most days anymore. I just feel lost.

Tell me about your sensory kid. What do you do to help your sensory kids in tough situations?

free falling

It seems we are free falling here Complete chaos and uncontrollable anxiety with Sammy tonight. I guess it was my fault. I changed the routine and it messed him all up.Yesterday Dan was home which has changed the Earth's axis.  You see part of the wrinkle in our universe is because Daniel had a tooth pulled and is mostly out of commission. Daniel usually takes AJ to soccer on Thursdays, however Dan couldn't drive tonight. I really had no other choice. My leaving was not acceptable to Sammy and he began to get edgy as soon as I left. Moments after , Tyler left the room Sammy was in. This left Sammy alone. Sammy has developed this weird fear of being alone, he can't even go in the bathroom alone sometimes. When Tyler left him to put away a toy, Sam lost it. He ran after Tyler and attacked him. I arrived home about an hour after I left to chaos. As soon as Sam saw me he began to settle, I did have to intervene to save some glass angels and to protect Nate . Suddenly all was well and the storm blew over and Sam sat to make me something cool.

It's so hard watching your child chased by a demon. To see his sweet face tortured. To know he just cant free himself from all the confusion and fear. I am powerless.It may be time for us to consider medication. I'm just so scared. How do I make this decision?

learning curve

I wanted to post something upbeat and happy  today.  Sammy had an awesome morning, smiles and school YAY. Then he came home with a note that he attacked someone on the bus. Well, I refuse to deal with it this very moment. I already called the school , phone conference tomorrow first thing. So for now, I will still write my happy post damn it! Just try and stop me

I was inspired a bit by my friends list over at Food Good Laundry Bad and I decided I need a list too.

The Things I have learned from Sammy

1. It takes 7 minutes flat to eat three pounds of jelly beans while hiding in a closet

2. Anything can be a weapon,yes even broccoli

3. Large stock pot lids make awesome captain america shields, and the paint comes right off with a scrubbie

4. I have more patience than I ever thought possible

5. It only takes seconds to connect and some days that is all you get.

6. Predictability doesn't always mean the same thing every day, sometimes you only need a fair warning.

7.  When a 5lb bag of flour falls from a 4 foot tall counter the entire room WILL be covered in a fine layer of flour.

8. Action figures melt in a stove that is preheating and that plastic takes forever to come off.

9. Just because something looks "normal" doesn't mean it is

10. Some things in life just happen and that has to be ok

11. If you can think outside the box you will accomplish so much more

12. Just because your expecting something doesn't mean your ready.

13. Sometimes your heart keeps fighting even when the rest of you refuses.

14. It is possible to love so much it hurts, to need so much you can barely think and to cry so hard you can't breath and sometimes that has to be OK.

15. Summer time rain showers can lift anyone's spirits

16. All life is special, yes even ants and worms. they all have a place.

17. Confetti + Sneeze = uncontrollable laughter

18. Butterfly kisses are magical.

19. Little girls aren't the only ones that really love pink glitter

20. Nothing in life is a guarantee so smile more, laugh more and try not to worry so much

October 15.

Pregnancy and Birth Loss Remembrance Day

You are not alone. I desperately wish that this club did not exist. That there was no need for it. That babies never died. It does happen, and no matter what each of our losses are important. There is a fantastic group on facebook where you can get some support



My darling Emma, how I miss you so. some days it all but takes the breath from me. <3 momma

Sam Says

I asked Sammy if there is anything he would like me to put on his blog. I won't edit this and it will be only what he tells me.. OK *breath mom and release control*

I am Sam. I am Autistic ,my friends think I am not autism...autistic. I have 50 children in my friends book I read to my friends a lot of times I sometimes when they fall I help them get up and they say thank you Sam and get up. Maybe next time I don't need you help.maybe next time. the end. That's it that period that is it .it.it period it. the end

 Every once in a while I like just asking Sam to do these things. To help him see there is more than just our house and school in the world. It lets me peek inside his head and what he thinks. We told Sammy this year that he does have autism. That it means he has strengths and weaknesses and it means his brain works different than others. He has since tried to use having autism as an excuse.  He hit his brother and said "I can't help it I has autism" I'm not sure where he got this from but someone let him get away with something. I am sure it was probably a neighbor kid, because they are always asking what Sammy really understands and what is ok for Sammy to do.

Dear Sir or Madam

Dear Sir, While I understand full well the obnoxious noise my son is making I do not particularly care if it bothers you. You see it bothers me too, but neither of us can stop it. He has as much right to be in the grocery store as you do. Please understand that this in no way entitles you to roll your eyes and whisper what a bad parent I am. Come spend a day with us, then make your judgement.

 Dear Sir, When you say things like "better you than me" your right. Congratulations.

 Dear Madam, Before you whisper to your husband that I cannot handle my children and shouldn't have had another one, please check your hearing aid. Everyone in isle three heard you.

 Dear Sir, I did not share with you my sons autism because I wanted pity. I told you because your child is trying to talk to him and being ignored. Your child is getting upset at this. Perhaps if you concentrated on your child and not what mine was doing we could fix this.

 Dear Madam, My son being autistic does not magically make him a genius any more than asking stupid questions makes you a game show host.

 Dear Madam, Please let me decide if we can handle it. What I can handle is none of your business and your opinion does not matter

 Dear Sir, When I ask my son to look towards you when speaking , do not tell him it's fine. He has been working very hard to be more social and he needs these skills.

 Dear Madam, If you are uncomfortable with my child playing with yours then by all means leave the play ground. My child is autistic, not dying or diseased. Your child will not catch what he has.

 Dear Madam, Behavior chart means just that BEHAVIOR. That does not mean turning in your paper. While I can truly appreciate your wanting to teach independence to your second grade class,my son does have autism. He still struggles with hanging up his coat, eating with utensils and remembering which stop to get off the bus. Lets work on those first.OK?

 Dear Sir, I am as offended by the overpowering smell of your cologne and your back hair peeking of your shirt as you are with my son hopping up and down saying the funny thing he smells burns his nose. That would be your cologne creating this . Thanks again.

Fighting to Breath

So I decided to link up with for this




 When the weeks are like this I feel like I am stuck in quicksand. I wonder if the world around me can see the toll being a mother to children with autism has taken on me. I feel as though my life is some form of algebraic word problem "If Sammy ages as half speed and Mother ages at three times Sammy speed how fast does Mother age?" The answer is too fast.

there is a blog I follow, A Diary of a Mom  and it helps me. I don't feel as alone when I read things like this post here and this post too. I have them on quasi-speed dial and re-read them on days like today. Days when I feel like I have climbed backwards into some dark sink hole. I try to keep things light here, I don't ever want anyone to think I feel hopeless or over stressed. I don't want anyone to think I don't love my sons with all I am and all I have. I do. He is forever intertwined into the fibers of my being, wound so tightly around me that you cannot tell where he ends and I begin. Perhaps that is why this is so hard for me? Perhaps I am too close? Can I be too close? In order to reach him I have to be close, constant and unwavering. I can't be near and far at the same time, just ask Grover. He did entire dialog about that on Sesame Street

However...today I just can't. I haven't written in a few days simply because I couldn't muster the energy to put on a happy face and pretend like things are OK. They aren't and I am scared to death because I have no clue what to do. So if you are looking for a happy "i love my life" kind of post  here are some suggestions
accomplishments
happy
feel free to wander backwards to untagged posts to all sorts of good stuff


Its been a long few weeks and it isn't getting better. Anxiety brings this poor child to his knees. Sammy is so much like a stick of dynamite with the fuse always lit. The level of anxiety  determining the speed in which the fuse burns. It fuels the fire, creates the burn and destroys any progress. I hate it.

Sunday, it all fell apart. We went to church, Sammy ended up restrained in the crying room. He was trying to put his head through the door. I couldn't even get him outside. I couldn't move him, so I sat down with him, held him tight, and let him scream and flail safely.  He was clawing at his face and arms, screaming and yelling. Nothing I could do would soothe him.  I wrapped him up in my arms. The same arms that held him and rocked him as a baby now hold him hostage. He hates to be restrained but some times that is all I can do. I have to keep him safe.

It's now Wednesday. Today he was carried to the bus stop because he refused to go. His socks upset him and he refused to put on his socks. His behavior at school is getting progressively worse, and the behavior to get him to school is as well. he comes home and explodes like a bomb. The entire week he has been going off like a loose cannon. each time worse than the one before. There is nothing creating the issues that I can change. Unless I can get God to keep it warm all year long. The weather change, the back to school, the teacher he doesn't like, the shorter days, the longer nights, and the dryer air all contribute to my boy and his melt downs. I have no control, I have no clue, and I am tired.

I am so tired. I use to compare this feeling to having spilled soup in your lap. I don't even like soup. I feel burned out and frustrated. I am tired and alone and I don't want to do this anymore. What was supposed to be respite turned into chaos and I am at the end of my rope. I am going to have a battle on my hands with his teacher (more about that another time) and a battle here. Sometimes I just don't want to fight anymore. I just can't breath because the air around me is so heavy. It feels like 100% humidity in an oven or being underwater.
I wonder if people can see it. Even people who don't read this blog have noticed. I miss life before autism. I miss being able to go out as a family and enjoy the whole day. I miss going for car rides without disaster. I miss being able to make one meal with no gluten free options. I miss being able to make and eat whatever the hell I want without worrying if Sammy is going to steal it and eat it. I miss being me, feeling good about myself and having "good mom" moments. I don't feel like a good mom. I feel like I failed. I am having a pity party and I apologize. I just miss the parent I was before it revolved around autism. I miss being carefree, because here, in this house, carefree can never happen again.

Tomorrow, I will wake up. I will smile, put my feet on the floor and do it all over again. Because I love him. Because he deserves it, and because I know if I don't no one else will. He didn't ask for this any more than I did. Nothing changes how much I love him, I just wish I could figure out how to HELP him.

Dogs for autistic kids

My mom is going to school now. It seems if you are over 60 you can go to school for free here. How exciting for her. Shes taking English and PortugueseII and another class. I forget which one really but there is a third. She also works at sears and is a LMT. pretty cool to have a mom that can come and give you a massage when you need it , don't you think? Anyway ,I digress. She wrote a paper on dogs and autistic kids. It got me thinking.

my mom and Sammy

It seems for some autistic kids there is a huge imbalance in cortisol (stress hormone) and circadian rhythms (sleep/wake cycles). Sammy seems to be one of those kids. He has a hard time both sleeping and waking , resting and regulating.  He becomes anxious easily and stresses over things beyond my comprehension.  Kids like Sammy struggle with a higher level of cortisol and have difficult with day to day regulation.



"Cortisol rhythm is extremely out of sync in children with ASD, due to imbalanced melatonin and ACTH production. The more severe the autism, the more abnormal the diurnal rhythms.⁹ The need for cortisol is so great however, that cortisol suppression is resistant to dexamethasone-suppression testing.¹⁰ While there is a huge cortisol dysregulation, DHEA-S and testosterone seem to be similar in children with autism and those without.^{11" read the full article here}


There is evidence suggesting that animals, like dogs, lower cortisol in children like Sammy. It can help them adjust to new environments and new people. The mornings are the hardest part of our day and it seems some ASD kids have a spike in cortisol about 30 minutes after waking in the morning. 


In the two weeks before the dogs were brought in, the children's cortisol levels rose 58 percent during the first 30 minutes they were awake in the morning. But when the dogs were present, this awakening response was reduced to just a 10 percent rise. And when the dogs were taken away after four weeks, the cortisol awakening response jumped back up to a 48 percent increase. read the full article here


So maybe a dog would help him. I don't know that I interested in an actual service dog but maybe more a companion dog. There are tons of articles supporting companion dogs for kids like Sammy. He melts around dogs and babies. The barking doesn't seem to bother him and maybe I could teach the dog to wake him in the morning rather than me. I don't know whats best for Sammy yet.  I know an older dog would be best for us and it has to be a bigger breed dog to not get lost in the shuffle. Of course there is cost, vet bills,upkeep and grooming. Does the cost negate the benefit? How do I make this decision


I just want to make things easier for him. I hate seeing him struggle in the mornings and cry about everything. Maybe if his stress levels were lower he would be able to get dressed and enjoy time in the morning without all the tears. Like everything else it is simply about making t better for Sammy and the rest of us. His autism affects all of us in this house. 


What do you think , would you consider a dog to help your child? whats the down side? Is there anything I am forgetting?

Signs everywhere

There are signs for things everywhere. No parking, No soliciting, No smoking. They encourage or prevent and create all sorts of situations.Some are Funny some are very important and some are just plain Stupid.

Today while driving home I saw THIS in Rhode Island. I live directly behind a school.It's a high school and a really slow street. we only have maybe 8 houses on our street.However lots of teens drive to school now.they whip around before and after hours. On many occasions our neighbors have alerted us that Sam has run into the street. We watch him. Our yard is fenced. 95% of the time he wont leave the yard and he is never alone outside. However, Sammy is fast! really fast. He can and often does get out. A sign alerting these teens to him might help them slow down. Maybe we can educate at least one of them? It's no different from a Deaf Child sign or Children at Play sign...right?

What do you think. Would you put a sign in front of your house for your child?

Wordless Wednesday

sibling sacrafice

 This post here ~~> What Autism Means to Me: Natalie Davis « Autism Speaks Official Blog:

'via Blog this'

How amazing it is to hear about this side of the story. I often worry about how the other children perceive Sammy and Tyler.

Tyler is best buddies with Sam. They have a deep link that I can't even begin to comprehend. I often find them engrossed in the same stim or Tyler leading Sammy into a calmer place before he melts down.The both of them enthralled with our stim pot and their reflection.












Nate started as the baby brother and is now almost of level ground with Sammy. As Nate changes every day and matures and figures things out Sammy often get's left behind. Sam will often bully Nathaniel , but lately Nate strikes back and reprimands Sammy. It's hard to watch the younger children passing him.













AJ and Sammy fight constantly. In fact even if AJ has nothing to do with whatever it is, Sammy finds him and takes it out on him. I have no idea what that is about. My best guess being that he feels really safe with AJ. AJ is the softest squishiest most lovable kid. AJ also has sensory processing issues and often kisses too hard, touches to fast and moves with some awkwardness. That translates into Sammy feeling as if he is under attack. Not a good way to feel and I am sure AJ often feels like he gets the raw end of the deal.







Grace and Sammy are a different story. Sammy is the baby whisperer and Grace adores him. She also adores Tyler.  The three connect on awesome levels. I am not sure if it is just because she is a baby or if I will someday in the not too distant future be told Grace is also an ASD child.







Who knows what our house will be like in 5 years. I don't know how many kids we will have by then if even any more. However many we do have, Sammy's autism doesn't just change him it changes us all in ways I never would have imagined 

Smiling

Today after reading this this post here it's come to my attention I may be overlooking how blessed I am It's really easy when things get really hard to feel like you have it bad. I do try to remind myself that it could always be worse.

No one knows what tomorrow brings and people loose children all the time. So today I am making an effort to think of all the blessings Sammy brings to my life.

1. When he smiles he lights up the world.
2. He is amazing with his baby sister
3. He has an amazing soft heart and gentle spirit
4. He can be really silly
5. His laugh always makes me laugh
6. Sammy has taught me so much about the kind of parent I am
7. Sammy creates in me a urge to do better, be better
8. I will never take going on a family outing and having it go well for granted again
9. I will never take speech and stories from my children as an absolute.
10. I will always be grateful even if for only one moment each day from now on

those are just a few amazing Sammy things. What makes you feel grateful? What are you proud of? How far have you and your kids come?