Tomorrow

Tomorrow is Sam's IEP meeting. The sitter is booked, the husband is off, and we are ready.

We don't have an adversarial relationship with our team here. In fact our team is beyond incredible. They have worked with Sam and our family to get the best results possible. Sam has flourished and blossomed at the neighborhood school.

They have put him into the right groups, they understand him, and they support and love him. I know not everyone can say that about their team, but I am blessed with the ability to say that about ours.

I am proud to be a member of our school family.

Suit Yourself ~ My Heart Monday

Spiffy. Yes that is the word he used to describe the outfit I gave him for Easter Sunday.


I stood in the store in tears looking at that outfit for a few moments. Thinking only to myself how deperatly I wanted to dress him up for a holiday. How badly I wished my family could just once go out and be above the chaos. I wanted to be able to go to church without the fight and without pajamas. I didn't want to spend the money if he wouldn't wear it. I really didn't think he would.

Thank you Wonder Hubby. Thank you for stepping in and believing our boy could do it. To most parents it seems like a given, holiday = dress up. Not here, and I am sure not for most families like us. Sammy saw the outfit and put it on. I was being so careful not to get my hopes up. Even if he got it on doesn't mean it would stay on. In fact if one thing bugged him he wouldn't wear it at all.

We kept the tags on. Just in case.

He put it on with daddy's help. He even combed his hair. he came into the room for me to see and I was speechless. He posed for a picture. Wonder Hubby asked him

 "Sammy where did you learn to pose like that?"
Sammy's response ~"Napoleon Dynamite"

 The tears, the hope, the dream of just feeling like everyone else for just a little while was standing in front of me. I don't know why this was such a big deal to me. It shouldn't matter, but, it does. After all these years, it still matters. I held my breath on Sunday for the shoe to fall, for it to swing back and hit me in the face.
It was nothing Short of magical. Thank you Lord for the reprieve. It went by fast but it was a very good day yesterday.

This just reminds me that I can't assume. I can't get stuck on what Sammy doesnt do yet. I need to make sure I give him the same options the other kids get and stop jumping the gun. He may have autism, He may really struggle,but he is still an incredible 7 year old boy.

Faster than the speed of Autism

I am aging faster and faster these days. I swear I am only 34 but having a 17 year old makes you feel older, add to that a child with autism and I am not aging as gracefully as I would like. Perhaps its the lack of sleep, perhaps the stress, perhaps it's just not enough martinis? Who knows! I even quit smoking before I got pregnant with Sammy. Oh some days how I wish I hadn't quit, I need a vice and Hostess orange cuppies are not the best one to have (that obsession is waning thank goodness) but they are fun to eat obsessively.

1. the edge of the frosting that dripped
2. then peal off the orange plastic...I mean frosting
3. split the sponge(cake) into two
4. suck out the glue...I mean filling.
5. eat the bottom then the top of the sponge
6. then nibble the frosting until nothing is left but the white squiggle.
7. eat the squiggle and leave last bite.

yes... I know obsessive but it's how I roll and if I keep eating them I will roll for sure. The crap and additives in them are a big no-no in my house and if my kids knew I was eating them they would for sure string me up and treat me like a pinata.
ok well maybe not that bad.

I have begun to obsess over jelly beans. I found all natural jelly beans at the health food store and I can't get enough. Surf Sweets...yummy

Back to my point. I am aging faster than the speed of sound and I can't just blame autism. I do suspect that the sheer stress of having such a large family is probably part of the real issue, and adding autism to that doesn't help. Picture a swarm of angry bees only made angrier by say a leaf blower. yeah... that's my life.  I think in the last 7 years I have aged 14 but the last four  years has been more like a decade.So pardon me while I go drown my sorrows in jelly beans  since I am out of orange cuppies right now.

Dan and I before Sammy

After Sammy but before Sammy was diagnosed 

this summer at "ponytail's wedding"

Blessings

I don't often write on a weekend, there is often just too much to do around here. Sunday's are usually really hard for Sammy, but with the sunshine and  slightly warmer weather, everyone is outside right now. We missed mass this morning because the car was being fixed, so we will go tonight. By then Sammy will already be dressed so it shouldn't be the drama it usually is. I may actually get to enjoy it tonight!

I am not writing for any of those reasons, but because I wanted you all to know how very very blessed I feel! I never would have imagined 4 years ago that Sammy would be able to touch so many lives. I get letters here and there from people who have been touched by his story. I get emails from moms that no longer feel so alone. I get asked for advice. Sammy inspires people through this blog. over 200 people are now reading almost every day according to my stats. I don't feel prepared for any of it, but regardless it's there.

Shannon AKA "my ponytail"

I wanted you all to know about the Autism 5K that my friend is doing. The team name is "For Sammy" take a look at this! Now, when I saw this I burst into tears. Not misty eyes little tears , but catch in your throat kind of tears. The ones you can't stop, can't fight, and can't forget. Shannon has helped us with Sammy's behavior for just about forever.Sammy loves her and called her "My Ponytail" for a long time. She is one of my very closest friends and one of the few I consider part of my village. I am blessed beyond measure by her. I know that she is ALWAYS in my corner. I know she loves Sammy. So she names this group "For Sammy" and the proceeds are going to autism research.

I don't think I have ever felt so lucky,loved and grateful as I do right now. Thank you Shannon, from Sammy, our family, and every child this will help. It is such a BIG DEAL.

I am blessed to have you in my life.

Puppy Love

It hasn't even been a week yet but Sammy is in love. This is Chance. He was surrendered by my brothers friend. He is housebroken and behaves pretty well. He is a BIG dog. He looks my four year old in the eye. He thinks my bed is his too and follows Sammy like..well a puppy. We don't think he is more than 2 years old.

He started out with such a sad life. He was kept in a crate for a long time and was an absolute mess. He was over 6 months old when he learned to walk. He was neglected and who knows what else. He was then adopted by my brother's friend. He took care of him well enough but just couldn't keep him or afford to feed him. So, Chance was brought to my mom's and then here. He is such a sweet dog. very love starved and in need of constant reassurance.

Every time Sam gets into trouble he takes the dog upstairs with him, so he doesn't even fight it anymore. Every day since Chance came into our lives he has gotten up and gotten dressed after being woken by the dog. I hope and pray this isn't like other things that quickly fade away. I hope having Chance continues to be as awesome as it has been this week!

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.

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.

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

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

hands free homework

The little neighbor girl lives with her Nana. He mom moved out a while ago. She spends a lot of time here and we love on her. Today her Nana sent her over because she couldn't understand the homework the kids had. She is in second grade with Sammy but in different classes. Same homework.

They sat together and Little Miss caught on fast after we went over it. Sammy was obsessing over snack and chewing his pencil. Once snack came out he got work done. he ate and worked diligently but only on that one paper. I let him save the second one for after dinner.

I reminded him later in the evening about the paper. No argument,no fight nothing just "ok mom" before the paper was even in front of him however he was asking for help. Then something amazing happened
he stopped.Looked at it and said "nope,never mind I got this" and proceeded to do about 3/4 of his math paper alone. WOW. what an awesome night.

it's those little things. the tiny steps that mean so much to parents of special kids. the things most parents take for granted, or loose the wonder of. I know I did before Sammy.

Hi, I want to introduce you to my mom

Today was Sammy's open house  and normally I hate them. Seriously It makes me feel like a caged animal. I always wonder if the teachers are all watching me thinking "ahhh that's why he is the way he is" totally my baggage I get it. still. I hate it. The minute I walk in I can almost hear the circus music playing in the back ground. I look around hoping no one is tossing a beach ball at me expecting me to balance it on my nose or something crazy. It's always the same stuff, see the place Sammy sits (near the teacher)  see all the work he does (with help) and meet the teacher. She seems pretty nice.but she isn't Mrs. Tynan!(last year's teacher who had that special something that made her super amazing) I warned her about Sammy's best friend make believe Max and it turns out she has already been warned. (yay for this school district so far) All in all he seems to be doing far better this year than last which to me is a surprise.  I spoke with Mrs. Gent (the special ed liaison) and got some great info on what he is doing, signed him up for a program at recess for social skills and spoke to the gym and music teacher about how Sam seems to be doing socially in those classes(since it is far less structured)

There was one huge highlight of the night. each person he brought me to he smiled and said "i want to introduce you to my mom" and then looked back at me smiled and said "mom  this is _______ my teacher" it was amazing.INCREDIBLE. I have never seen him do anything like this before in his life! He has a "best friend" as well now and when they saw each other the conversation was fluid.He even said "hey great to see you,I want you to meet my mom"

That may not seem like much for some. The parents of NT kids reading this may not understand the huge accomplishment this is. It's the equivalent of Sammy building a space ship and flying to the moon. I can only imagine he learned this at Social Skills group, but not only did he LEARN it he USED it! I am one very proud momma today.It almost made it worth it when he had a behavior before bed.

linking this for today!
I decided this week to jump along with Toddle Along Tuesday with Mama G at Growing up Geeky. The topic this week is “Something you love about your kid(s).”

snapshots

Sammy is gorgeous. perhaps it is simply my love for him that makes him so. Often we run into people amazed by how handsome and physically perfect he is. Across the board I find a lot of parents of kids like Sammy are told the same thing. Perhaps it is some sort of survival mechanism for them? Who knows. I take a ton of photos of Sammy, almost daily in fact. I love pictures of Sammy, especially the ones where you catch the fleeting glimps of who he is behind the autism. Every once in a while we get "that" photo. The one where autism lets my son come out and play. I love those photos.

Sammy has started grabbing the camera and taking pictures of his world, his view and his ideas. often it's an unfocused picture of his fingers flying and stimming, or someone's knees, or books out of place. But a few times now he has caught an excellent picture that makes us smile. We are going to encourage this with him. I want him to find something he loves. If that means going off in every possible direction just so he can find his. I am there 100%

picture of grace taken by sammy

drawing boards

Sammy likes to draw pictures. He often sits and colors page after page after page. He loves it so much he has even stopped eating the crayons, which for Sammy is an amazing feat. A  few days ago he began drawing something that resembled a funnel and an ant farm combined. I asked him about it. Turns out my son was drawing a water treatment facility powered by a tornado that made drinking water and filtered out poop. I have no idea where he learned this or figured this out. I was pretty amazed honestly. What have your kids said or done that has amazed you?

Edit ~ I noticed this post has become very popular. How did you find your way here today? drop me a comment or send me an email to let me know silentnight913@yahoo.com

mornings and sock toes

I am not a morning person.Not even close. Perhaps it is some sort of genetic trait to be passed on to children. Perhaps it is simply a learned behavior. Whatever it is I have no idea. I can say however,that undoubtedly I am raising 2 non-morning people. AJ who is 13 and Sammy who is now 7.
What is a morning person~ Nate wakes and bounces out of bed, twittering and chirping and babbling about something.smiles and giggles and requests for breakfast at 5:30am. Am I being punished for something? Seriously, no child should be that chipper before I have had coffee.

I appreciate a slow start to my mornings. Prayer and coffee in the one spot of my house that is bathed in intense light. Moments of reflection on the clean of my kitchen and the sparkle of my sink. I enjoy the slow waking of the day.

It's school time here which means no quiet mornings.No blissful cups of coffee unless I plan to be up at 4:30 am. Did I mention I am not a morning person?
Every morning here is akin to the front lines in Afganistan. Getting all the kids and the hubby out the door in the morning is chaotic at best. Thankfully hubby tries not to wake me up until he has to (to remind me to pump before baby girl wakes up) Tyler leaves at 6:30am, AJ at 7:30, Sammy at 8am and Nates lessons start at 8:30. In that time I have t make breakfasts and nurse a baby.

 It takes me almost an hour and a half to get Sammy out of bed each day and ready for school. Gentle wake ups  followed by more insistent directives to get up and get dressed. We have found shoes and socks he will pout on so far this year. Our big issue...cold pants. He HATES THEM. With spazzing screaming flailing flapping intensity. I have tried sitting on them,ironing them,blow drying them, tucking them underneath me while I sleep.Nope not having it. Today I woke him and was told "you just don't wake people like that" followed by screaming about cold waist bands on his pants. Then I looked, he was wearing pants already....Hmmmm OK. WIN he wore the ones he had on. It's a solution I can live with!

He then spent the next 25 minutes looking at me cross-eyed and telling me his shirt was too long,that he wasn't going to school in the rain,that breakfast smelled funny and I shouldn't wear purple. He went to school against his better judgement.
He came home a mess. Homework and an unacceptable snack have set him off and he tried to run away. He is now chilling out in his room until he feels like being around us again. His homework is still undone and he still has not had snack yet.
It's only the second week of school here people. I am tired already.  Five days in and I am already in a funk. I am re-reading Unconditional parenting in the hopes of gleaning some better insight on how to fix this

sunshine, clouds and rainbows

Sometimes the sun can shine so bright you almost forget the rainy days even exist.

It's been wonderful here, mostly. I am emotional knowing Sammy's birthday is coming. It's difficult for me to see his younger brother passing him in so many skill sets. Sammy is such an intense kid but some days hes all cotton candy and lollipops. I enjoy those days. The days when he sits on my lap and cuddles up or kisses me without needing to be begged . The days he actually tells me about his day and smiles. The days when he looks me square in the eye and says thank you. A lot of those things Sam has learned by watching Nate master them.

Tonight was a night where Nate excelled and Sammy sputtered.We took them to the pool at their Auntie Norma's house. Nate jumped off the diving board swam from end to end(he does wear a float suit) but Sammy spazzed every few minutes. He kept trying and did very well in the end. but he never left the three foot side. He wore a life jacket and could more than touch bottom. He wanted to have fun with the big kids so bad. It breaks my heart to see the inner struggle of a child who wants to do something so badly that it's written in capital letters on their face. To see that something inside my boy is keeping him from going after the dream in his head. It must be like dueling Jedi in his head. How horrible that must be for him. I watched him tonight at war. Not with any other person but with himself.

These moments are the hardest because I cannot just rush in and protect him, love him and fix it. My hands are tied almost as much as his are. It makes me want to scream. Sometimes I wish autism were a person that I could just punch in the face, or scream at. I wish I could go in at night and steal my baby away from it, take control and take him back. What a fool I am to think I have that kind of power. But yet I work hard everyday, stealing bits of Sammy back from autism. like ingredients in a cake.

All I can do is support my son. Love him unconditionally. Treat him with respect and admiration for every fight he wins and even the ones he looses. Because, even when he does loose, he always goes back to fight just one more time. Each time I will be beside him with my light saber ready to take on anyone who dare challenge my Jedi. Until I stop to breath again and see the vibrant colors across the sky
I know there must be a rainbow somewhere for us. There is too much rain and sunshine for there not to be. It's just hard to see it sometimes when your in the battle.