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?

It's Only Fear

So I tried puzzling out what bothered me so much about the Parenthood episode. About 3 am I woke up with an AH-HA moment. It was the moment when Kristina had the ultrasound. When she agonized over knowing the sex of the baby simply because having another boy meant a higher chance of autism. BINGO

The baby.

I have 4 boys. One girl just ONE girl so far. I worry each time I have a child that I will have another child like Sammy. Having a child like Tyler doesn't frighten me, I  can do that. Sammy makes me feel ill-equipped and crazy.. it makes me feel like I am in a free fall and there isn't a damn thing I can do to fix it. I hate fighting it every day. I fall into bed each night so tired I can't breath. I feel like I am never off duty, like I am never safe. Like a soldier going into battle day after day. I can't handle giving birth to another Sammy. Felling again like I was somehow at fault, somehow blamed. I cant go through that again. I can't beat myself up over another child being autistic. Those words "your son has autism" still echo all these years later. It makes me second guess what people think, what I think and what I do. I question it all , every day, every...single...second. Different studies with different faults. I know he changed after getting a HiB shot. I have re read it in his baby book over an over, but he was born "different" so what caused that?

More so on days like this when it's been a horrific week. It's been so bad here some days that the fear I have for my son gets so heavy I cannot breath. I cannot think. I feel like I am drowning in it. As though my lungs cannot move , paralyzed by fear and focus. It's been that kind of week.
On top of it I worked this week and I was tired when I watched Parenthood.

My daughter is my fear. Like I could somehow handle it better if Nathaniel was diagnosed tomorrow? There was a fleeting moment when Grace was born, when I looked and saw it was a girl. A quick,fraction of a second that barely existed where that thought crossed my mind. It was almost an unconscious thought barely on the surface.That thought... She's Safe.

 I agonize over everything with Grace as well as with Nathaniel. I am terrified she too will be autistic. Some things already don't seem right. Am I just over analyzing it? I will love her no matter what. The same way I love Sammy fiercely, without reservation. But Lord please not my daughter. I know that sounds horrible to say. Typing is actually placing me on the verge of tears. I want to cry. It isn't that somehow my daughter is better or worth more to me than my sons. It's simply that she should be safe. I know too many moms and dads of autistic girls now to believe that. It may be less prevalent but it isn't any less real. She isn't immune to it. Apparently , neither am I.

Raw emotions

   I am not knows for being warm and cuddly or soft. In fact my husband often refers to me as having "sharp edges"  At some point I replaced the "melodramatic" child  I was with this crusty sharp edged no teary person. I don't like that about me. I am emotional and intense. I get angry, I get cranky, I can even sometimes get down right mean. I do my best to avoid the last one as best I can.It doesn't happen often. Depending on who you ask, they may tell you varying degrees of that. I just don't do soft and squishy. I  am loving and gentle with my children but I don't do empathy or sympathy well. I have gotten better and actually go through a checklist in my head now  when someone says something sad to me or tells me something emotional, even when someone dies I often don't cry about it in front of anyone but will sometimes cry alone.Things often come out of my mouth sans filter. I have asked people if they had a stroke and other embarrassing things. So i now stop before I react and I have trained myself to not react emotionally to things on the outside. Unless, I am tired

   Like today. I worked last night and the babies didn't sleep much then this morning Sammy had yet another  behavior and I had to forcibly dress him. Grace was cranky and got overtired before it was time for her to nap. That resulted in screaming and crying. Nate bonked me in the face which is still sore from surgery. I am down on myself about a ton of stuff and being tired just makes me feel even more vulnerable. So why on Earth I decided it was a good day to watch Parenthood I don't know. I don't understand what I was thinking.

Now, my belly is in knots and my head is spinning trying to place where my thoughts are. I can't seem to flesh it out... I promise when I do I will come here first.

11 months ago

this was Sammy 11 months ago.The night before Halloween. It amazes me how far he has come in less than a year. I keep looking back and wondering  how I didn't realize we were running full steam forward. He has changed so much in just a short 11 months. I wonder what the next year will bring.How will he change? Will he change?
The subtle differences that turned into GIANT leaps the amazing things he can do now. He still can't read. Pushing him results in huge fits and tears. He still can't get dressed by himself. He still cant wipe himself. So many things he CAN'T do

But...
SO many things he CAN
He CAN ride a bike
He CAN climb a tree
He CAN put on his own socks and shoes most days
He CAN tell me he loves me
He CAN improve
HE CAN LEARN
after all he Sam the cookie man and he is amazing


show me the funny and amazing things your kids do and join the link up right here

planning for the future

These are my children. This is my heart and my entire life. Every one of them just as important. This photo shows so much personality. Nate, the clown in the front. The protective big brother Tyler with Sammy being a goofball. AJ ready to take on the world and Grace happy to just be with momma. I am the all time protector. I watch over each of them constantly. It's my job,It's my privilege and I wouldn't trade it for the world.

However, someday I will be gone. I pray not for a very very long time.  Who is going to take care of them then? How will they survive? Bad things happen all the time. What do we do then? I have no doubt in my mind that my boys and Grace will be ok in the long run on their own but someone will have to care for Sammy, no matter when we die. Now or 20 years from now.

We have begun planning and we are buying life insurance. Each child will also be insured as a way to grow money for their college funds and for Sammy therapy and other things he may need along the way. It's hard to think of the future where I wont be there to take care of him. If you all don't already have life insurance you might want to look into it. The next thing to take care of is a Last Will and Testament. I am not really ready to cross that bridge yet.

How do you decide who will take care of your special needs child?  I wonder how other parents make that decision.

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.

Don't ask me how I do it

Don't ask me how I do it. how I keep things together or how I manage every day. Don't ask me how I manage to get things done, or go fun places. Don't ask me how I manage to cook or clean the house. Don't ask me.please it makes me nuts when people say that. I manage the same way everyone else does. one moment at a time, one breath, one step and I still screw up

Today we had a bad day.First I couldn't sleep last night.Then my computer ate all of the photos from Sammy's birthday party. Sammy was wild last night and it seems to have carried over to today. We were restraining him by 11am just so he wouldn't hurt himself or anyone else. He attacked his little brother over a program they were watching on Netflix. I handled some of the outbursts very well and was proud of myself. I had to walk away after a few hours though. He has a weird rash and it's setting his sensory system out of whack. He's angry and mean sometimes and this was one of those times. An Epsom salts bath and some warm milk with honey seemed to mellow the child out.

He was so wild yesterday I never got around to posting what I wanted to and the playroom still looks like a bomb went off. I think my neighbors may be thinking that white trash moved into the neighborhood because there are toys and pieces of things littering my driveway all the time. We did however have an awesome dinner with a great friend and I did get a little knitting done.Nate and I got to cuddle and I got a couple of great hugs from Sammy

I am not Martha Stewart,or Betty Crocker or Donna Reed. I am just me. I am raising 5 kids and quite often those five kids are far more important that the dishes or laundry. I would rather finger paint and bake than vacuum and dust.It drives my OCD crazy to see everything in the toy room out at once,but there will come a time when it will all be clean and organised. By then all my babies will be grown and i will miss these moments.

Sammy at 2.5

So please don't ask me how I do it because the honest answer is ...I don't

Storming the castle

Like I said last night was open house. Do you think she could have mentioned his behavior is taking a downward spiral? Maybe just a heads up? Anything?

Nope.

So his behavior card comes in today and he received 2 warnings Wednesday and today. In fact today he HURT someone. He jumped on a child. The child went to the nurse and an accident report was filed. Why didn’t anyone call me about this? No warning, just a note and his behavior slip. The note actually made me chuckle and then I got mad. Maybe I am just over sensitive and maybe it’s just my baggage. The note  reads

Mr + Mrs Chagnon,
 Today  at music Sam “jumped” and hit another student in the arm pretty hard. The student had to go to the nurse and an accident report was written up. please speak with Sam about trying to think before he acts He did say he was sorry

Now to be fair this is only the third or fourth week of school so some adjustment is to be expected. And to be fair, we were spoiled last year with one of “those” teachers. You know the ones that make you feel really great about he school your child is in. So his teacher this year has a long way to go in our eyes to “measure up” She seems great, intelligent and reasonably understanding but she is missing that special something the other teacher had. I don’t feel certain with his placement this year but I am also rather protective of Sammy. So we wait.

What angers me is the “please speak with Sam about trying to think before he acts” WOW a few weeks in and she has it all figured out . How did we miss this so long? We just have to speak with him about not being impulsive. DUDE why didn’t I think of that? Seriously could have saved myself a ton of extra crap. I want to write back

Dear Teacher,
Sammy has autism and ADHD there for he is extremely impulsive. That is why we outline restrictive safety measures for Sammy when out in the community. He has very few safety skills and even less empathy. He can be a danger to other students as well as himself. How did my child get high enough on something to jump on another child and hurt him this way? Please review his IEP ASAP.


I want to send that note in, but I wont. I will write something along those lines  but far nicer. I will send her in lot’s of reading material about impulsivity and ASD kids. I will remind her that  a few years ago he got away from a teacher and ran into the street. I will reiterate my concern for his safety. But not one bit of it will be snarky or angry. Sarcasm helps no one right?

That’s what this blog is for…

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).”

do I have to?

I hated homework as a kid.seriously it was like filing my own teeth with an emery board. I hated it so much. I decided I liked it by college but only because by then the OCD had tipped the scale in favor of neat written papers and straight lines.

My oldest son Tyler has Aspergers and at 16 is delayed only in the executive functioning skills (planning,organizing and follow through) and he does have a written language disability called Dysgraphia. For those of you that don't know what that is, it means his writing sucks. it's really bad. To this day at 16 he still spells red- R-A-D on paper. He knows it's red, he can do it verbally and he is not lacking by any means for intelligence. The signal gets jammed from his head to his hands. We tried an assisted technology eval a few years ago and found something called http://www.gingersoftware.com/  A minor miracle for our household and the writing of papers and book reports. Tyler hates homework as well . It is hard and complicated and he struggles with it. In 7th grade he almost failed because of homework. A's and high B's on tests,classwork and all projects without writing and they still wanted to fail him for homework. It did not happen, and while I understand the importance of following directions and doing the required work, I don't think any kid should fail based on homework. If it can help their grade, awesome!



So here we are with Sammy.2 pages of homework every night. One math,One spelling. Sammy.Hates. Homework! Every night it's the same battle,the same argument the same tears and gnashing of teeth. Would it be terrible of me to not have him do it? To have him try and encourage him to try but if he just can't get himself together to let him skip it? Does it make me a horrible mom?  Snacks during the work help him since that child will eat until he pops if we let him. So  how hard do I push.

son Rise program

This is the first I have heard of this program. Tell me what do you think?

http://www.autismtreatmentcenter.org/contents/about_son-rise/what_is_the_son-rise_program.php

daring to dream and wanting to fly

      I am allowing myself this moment, to dream...
 It's been harder and harder for me to dream about Sammy's future. We just went to speak to someone about life insurance and in doing so had to prepare for the eventuality someone WILL have to help care for Sammy in some capacity when we are gone.
      But for now I am taking the time to dream...
That some day he will find something he loves to do,that is amazing. That he will find love and have dreams. That he will succeed in life and someday outrun autism enough that it is in his shadow and not the other way around. Because Damn it It should be that way.
The simple things we take for granted as moms and dads and grandparents of  neurotypical kids. He should be learning to tie his shoes and instead he's screaming and writhing on the floor just trying to put them on. It hurts watching him struggle.
       But for now I am taking the time to dream...

That this morning he wakes up with a smile. That his windows are wide open and the sun is shining bright. I miss my Sunshine Sam, it's been too long. I am dreaming of a morning where breakfast isn't full of tears and everyone is ready on time. Where I don't spend my morning trying to figure out what new issue has been created in his mind or by his clothes. That this morning he looks at me and really LOOKS AT ME tells me he loves me with a smile and gives me a hug, without me having to ask. Without me having to take him by the shoulders and hug him and force myself into his world. Because Damn it I am tired. I don't want to feel like I have to force myself on him every day. I want to be in his world. I want him to want me there. Today, he does, because I am taking the time to dream...

4000 views

Silly arbitrary number. BUT we hit 4000 views. It always amazes me that people look at this blog! So thanks guys for reading and feel free to drop a note and say hello.

The chaos of mermaids

Sammy loves movies and will often watch them over and over. he perseverates on bits and pieces. Little sections that are part of the whole. Things that often aren't noticed by anyone but him. It makes figuring out what movie he means to watch very difficult sometimes. He cannot often remember the name of the movie and instead gives us a quote or a detail.

Sammy watching Hercules 

yesterday it was the little mermaid . he was crying and flailing because no one understood him or what he wanted. He just kept insisting that he watched it at the cops house and the girl got skinny. Daniel could not figure out what he meant.

turns out Sammy thought Daddy was trying to trick him and not watch the whole movie. He was convinced that Daddy had somehow started it in the middle and was very upset. He was talking about the one time he watched it at Daniel's friend Jeremy's(the cop) house. He thought the movie started where Ursula turned into the girl who stole away the prince. No convincing him otherwise. He did settle down after a few times rewinding it until it stopped (yes its a VHS) Then he watched the movie through.

Someday These things wont catch me by surprise...right?

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

sunshine, lillipops and rainbows everywhere

Cloudy with a chance of meatballs. My brother loved that book and often checked it out of the library in Fairhaven. However, Sammy seems to have some sort of mental block with reading. He CAN do it word by word but insists he cannot. I am struggling (along with the Special Education teacher) to figure out why. I want him to love books like I do. I want him to find his imagination wrapped in  a book and create authentic enjoyment for them. He needs an outlet for that incredible imagination he has locked inside his amazing intellect. It's dying to get out, I can see it bouncing around in there when I look into his eyes, much like a super bounce ball in a small room.

He does however LOVE the movie of Cloudy with a Chance of Meatballs. How can I turn his love for movies into a love for reading? Is that fair? I hate the reward/token economy that we often fall into with Sammy. I feel it's taking away an intrinsic need to be a good person and replacing it with stickers and dollar store treats. It works, for now. Will he ever get to a point where it doesn't work anymore? What then? I guess that is a bridge we will cross when we get closer. Right now we are just to busy climbing the mountain to worry about it


He went off to school today chipper and woke up full of The Awesome ( http://blog.pigtailpals.com/20
11/08/waking-up-full-of-awesome/)

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