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?