The Level of Pain

Dear Soccer Parent at the JV Soccer Game,

   I heard what you said. In fact everyone heard what you said. If I had not been so busy keeping my child from hurting himself I would have confronted you. Your ignorance infuriates and astounds me. While it shouldn't it also hurts my core, because I love my son more than life itself.

You have no idea what we have been through with Sammy. You can't possibly understand what he has overcome. I pray you never have a child like Sam, because you don't deserve the awesome that kids like him are.

Autism doesn't have a look. It doesn't have a telltale sign that says "HEY SOMETHING ISN'T NORMAL HERE."

 I am sure you're the perfect parent and you have never had a tough time with your child. I am sure your child never back talks or gives you a hard time. I am also certain that rainbows and unicorns fly out of my ears every morning when I wake... oh wait.

I know I will see you at the next game. I plan to sit right beside you. I plan on letting you know exactly how awesome my son is. I plan to make sure you know I heard you and that in no uncertain terms that if it happens again they will be removing me from the field.

I am not a violent person. I don't agree with physical aggression.

You can dislike me all you want. Feel free to talk about me behind my back. Feel free to say whatever you want about my clothes, hair, body, temperament, teeth, or parenting.

HOWEVER, let me be very clear.
TALKING ABOUT MY CHILD IS OFF LIMITS.
IF IT HAPPENS AGAIN I PROMISE YOU IT WILL NOT END WELL.

Touch

I am frustrated. I just watched the commercial for the show Touch. I obviously have not watched it but from the previews it looks to be about a child with autism. Do they come out and say it, I don't know. You know what I don't care either.

The world of autism needs more understanding, more awareness, more visibility. We need more houses lit up blue. We need the White House to light it up blue. We need to get to a place where people don't say stupid things to moms like us.

What we don't need is one more stereotype out there. We don't need one more show where the kid reads minds, figures out the meaning of life, or makes the world turn  the opposite direction on it's axis. Why aren't our kids good enough just the way they are?

My son struggles with math, and reading, and just about every other damn thing he encounters. I know there are some people out there who can do amazing things, but they are few and far between.
Why do we need to perpetuate the idea that all of our kids must be like Rain Man. What is it about society that thinks a kid like Sammy can't be awesome just because he is Sammy? He is awesome. He is wonderfully and fearfully made. It is everything about it. Autism is only part of who he is.

He is a 7 year old boy, who loves bagels. He hates double digit math and spelling. He loves Star Wars. He doesn't like to go to bed or get wet. He loves video games and his dog. He loves his sister and his brothers. He gives his mom butterfly kisses and he believes in God.

He doesn't count cards. He doesn't know every digit of Pi. He doesn't add numbers in the blink of an eye. He doesn't memorize birthdays,weather patterns, or locations on a map. He doesn't even know what latitude and longitude are. He cannot build boats with his eyes closed or speak Latin...

He is however an awesome kid and the last thing the Autism world needs is another Stereotype. Why can't we simply celebrate who are children are? Both our children with autism and without...deserve that much...don't they?

To Whom it Does not Concern

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

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

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

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

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

How Is THIS Legal

Brick Walls | wolfhirschhorn.org:

'via Blog this'

It takes a bit to ruffle my feathers this much. I am so ANGRY I even considered using profanity in this post. Don't worry I won't. I am so angry after reading that article up there that my hands are shaking. I had to actually wait to post this because I am IRATE. My heart is pounding in my ears. It isn't even my child we are talking about here... but it is ,you know?

Because today it's a transplant team refusing to treat a child with developmental delays tomorrow it's treatment refused for kids with autism. The slippery slope that runs along the outer banks of normal into our world. This world of ours while it has challenges and tears , it has so many moment of absolute glory. We have so many moments of sheer joy unhindered by any constraint that society sets forward. What these doctors are saying is that if you don't meet our standard we will let you die. you don't count. You aren't good enough.

HOW IS THIS OK???

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

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

you can sign the petition HERE

a Day Off

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

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

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

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

Thankful?

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

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

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

I need to breath.

but it feels like there isn't any air.

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

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.

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?

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…

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.

I should feel lucky

i should feel lucky, after all it's only autism. at least he looks normal.

yes someone dared say that to me. I was insulted on so very many levels. yes I still have my child with me and I can hold him and kiss him and love him. he is alive and I am grateful. this thief, this wolf in sheep's clothing, this autism, will not physically take him away from me. he is right here in body.I can hug and kiss him. I am grateful. he has come a long way and I .AM. GRATEFUL
it takes away so much from him.it hurts me to watch him struggle.
to miss things that other kids love because it's too loud or too busy or too anything. add to that he is high functioning so he understand that he is missing something.
taking away his favorite foods and replacing them with barely passable substitutes so that he can function. it works but it is another sacrifice. another concession I wish i didn't have to make.
watching him slip away into his world when he does eat something he shouldn't. watching him cry for no discernible reason. scratch at his socks and pants because they hurt him just by being on his body. knowing he struggles through holding himself together at school only to fall apart completely when he gets home and didn't get the snack he thought he should.

please dont ever say its only autism. that hurts me. it's not ONLY autism. while it wont take him away physically I have no idea what the future holds for Sammy. Unless you live it you can't possibly understand the struggles he faces. the struggles I face as a mother, to see him as a child with a disability and not just a child who misbehaves.
please don't suggest to me that I need to discipline him more. don't think for a second I haven't tried it. I have it doesn't work. he doesn't care.
please don't tell me he needs a good beating. there is enough hitting in this house without me hitting him
please don't tell me I am too easy on him, hard on him, too strict or too soft. unless you live this life you can't possibly understand. if he melts down in public. don't stare at him. your dirty looks are not helpful. he may have autism but he also has feelings. I understand it may be quite a sight to see him screaming like the devil, but your advice isn't helping get me calm enough to deal with it. in fact I may just consider hitting you. please when he is throwing a fit don't tell him you will take him home, talk to him about Santa or the Easter bunny, or tell him the police will come. he doesn't care or understand that concept yet. he may look normal, but every minute of everyday demands are placed on him that he cant understand or handle. just because he looks normal doesn't mean he is.


please understand when you say those things, it hurts me.
it ISN'T only autism.

you really have no idea