sweetest moments

awesome moment with Sammy tonight. He made us all smile and it was awesome. Dan was kneeling beside me and Sammy jumped on him. Dan fell over. Sammy looked over , processed for a second and went "ohhh!" in the sweetest little voice. then looked at Dan and asked. "was it fun?!" after Daniel explained that no it was not fun Sammy asked if he was OK. very sweet.

IEP+I expect puke

Sammy's IEP is coming up. he's going through all the testing at the school. So far we know he is doing OK in speech and that his syntax and grammar has improved drastically (please God don't let him test out of speech)  However according to his IEP update with report card they "believe" his lack of progress is due more to internal regulation and internal issues then an inability to perform the work. he CAN spell. he CAN add. he CAN keep up. but he often needs assistance with his daily work. homework is a crap show here as often results in tears . He has such a hard time reading. He cant sit still. He has psychological issues in addition to the autism issues. I feel like we cant win for loosing. then I wonder what his IEP meeting will be like.

In acushnet we were assured he was fine, it was my issue, in my head. they didn't see any of the stuff we did here. I felt lost. Now I know they see a lot of the issues we do, not as violent but the rest of them. So i feel better knowing it's not just me...but sad...because it's not just me

bugs!

Everyone here is finally health. PRAISE JESUS!
I just finished watching parenthood for this week. Amazing Andy and his bugs. It's so funny to watch that. I picture Sammy as an adult as he runs through my house in his superman costume trying to sneak snacks into the living room. He makes me smile.

When Max's dad asked Andy if he was happy and he said "yes, sometimes" and then asked Adam if he was. It occurred to me. that's what I am working so hard for. For Sam to have a normal, happy sometimes kind of life. just like me, but better. I can only support him and love him and pray for every bit of normal he can gather in life.

It takes some of the pressure off, because I really do think he is happy, sometimes. I just somehow got caught up believing he was supposed to be happy all the time. that somehow him being autistic meant I was supposed to make his world perfect for him to get better. What exactly is better anyway? I don't want him to be a drone of society, I like his quirky different thinking and his little idiosyncrasies. I appreciate most of them... except for the issues we have with sock.yes, except socks.

I want Sammy to be happy, and honestly... I think he may be...

....sometimes

sam snow and stomach bugs

We have all been sick here. Sammy was the last one to linger with the sick bug. Plus we have had a ton of snow days as well. This makes for some very stir crazy kids.However with me being sick Sammy has had opportunities to show off his sweeter side. I LOVE IT. covering me with blankets. brushing my hair and hugging my feet. its been a rough few weeks but I do really enjoy having him home(mostly because I don't have to make him get dressed!)

effects of pot!

a loose tooth wiggle wiggle wiggle

sam has a wiggly tooth. just a little wiggly but he is a man on a mission. wiggle wiggle wiggle. all.day.long he keeps asking me to feel it. eeewwwwwww! but he is so thrilled with it. I love seeing him so happy

last night he was playing(read running a muck) in my living room and fell onto a hippity hop ball.wiggle wiggle wiggle he cracked himself in the face with it and heard his little tooth make a crackling sort of noise. you and I know this is normal but sam LOST IT. screaming he broke his jaw and now the tooth fairy wouldn't take his tooth. wiggle wiggle wiggle sobbing into my arms trying to explain to me what happened and I finally figured it out. his tooth is now VERY loose and he is VERY excited.wiggle wiggle wigglewiggle wiggle wigglewiggle wiggle wiggle

I don't think Sammy understands the difference between real and not real. since he is excited to loose the tooth to get money from the tooth fairy but he says he doesn't think she is real

sam says

I so want to be jewish...

why do I forget

how can I forget he is autistic? I know he seems so "normal" sometimes. People always say... "he doesn't look like anything is wrong" or even better "but...he's so beautiful?" as though being funny looking is somehow a requirement for autism or any special need. damn it. i get so angry when people say it, but here I am frustrated with Sammy after a morning of trying to get him dressed. frustrated because he didn't act "normal" and just get dressed. Why cant I remember, he has autism, he cannot help it. why cant I just have more patience?

i feel defeated. Today wasn't even that bad. he woke up came into bed and cuddled under my chin. He likes to snuggle in a ball and tuck under my chin. He says I smell like candy. So we cuddled and for a moment the world was frozen and all was right with the world. Then he asked the dreaded question "I has school today?" to which the answer was"yes Sam, today is Tuesday, Tuesday is a school day" so much for peaceful.
we did manage to get him dressed. though he refuses to wear pants that aren't size 6 even though he usually wears a 7. he is six so his pants should be too according to Sammy. we dressed under the covers and Sam tried so hard to play along to surprise daddy  but he just couldn't calm down. then he hated the shirt and it was like being on a carousel. just going around and around. he never got his teeth brushed, but he did get breakfast... thank God for small victories

silence and sleep

First, I want to say hi to all the new readers I have here. I am so use to basically writing for myself that I forget sometimes people may read this too. welcome and I have gone through most of the comments and I want to thank you all for the encouragement and insight. Its always nice to know we aren't alone, even when it feels that way.

Christmas eve was not the easiest here. My wonder hubby had surgery on the Monday before Christmas and the eve was at my mothers. taking Sammy anywhere is always difficult, add presents and  food into the mix and its pandemonium. he tried so hard but Lord it was horrid by the time we got home. However Daniel was able to get Sammy for a minute to help put out cookies and milk for Santa, get his jammies on and get him asleep in bed.Thank God for wonder hubby

how sweet with his penguin named polka dot

My littlest one awoke on Christmas morning so very excited. bouncing up and down saying"Santa came Santa came" my Sam... well. He wasn't angry. just very matter of fact. I remember feeling like this when Tyler was younger, just wishing he would get excited about something! anything! It makes me want to shake him, but I know that makes no sense since it would do nothing for him.
Sam was out of sorts all day and just difficult, then my dad left before dinner started and of course that created stress and anxiety for Sammy. So dinner was loud and stressful for me. I wish people would get it, would understand what it is to have a Sammy kid.
He did open presents in the morning and was happy enough. he was excited (as much as he ever will be i guess) about the balance board Santa brought. So we begin a full week of Sammy at home for Christmas break. Lord help us all!

a morning of sunshine?

can it be true... could this be so??? An OK morning. It was by no means fantastic but it was better than the rest of the week by far and worlds better than last night! PRAISE JESUS!

Christmas is always a tough time for Sammy. We work hard to set him up with clear expectations and sound ideas on how to handle situations. I am working on a new holiday social story for him to prepare him for the Roy family Christmas. He is usually pretty good so I really can't complain, but I think he is good because we make sure he is "ready" for it. His speech has been back sliding a bit lately so I have to watch that. But most of all I feel blessed to have such a wonderful handsome son

waiting to exhale

Sammy should be home any minute. He brought home a note the yesterday in his communication book that he was having a tough time. He's having a tough time here as well. I am so tired and frustrated and just done. he pretty much wants to live in jammies without shoes on. Can't send him to school like that can I. I almost wish he would go back to wearing only his spider man costume, at least that he would wear shoes with. I just feel like I can't win.

Another ridiculous morning at home. I have realized that if he has a bad morning Nate has a bad day. it spirals out of control and I am left here dealing with it all.

i came in today to Sammy sitting at the breakfast table in his polar bear jammies(thanks Donna) "look mom I'm having breakfast, its oatmeal" so cute ... so normal.

Until he made eye contact with his shoes and started to cry and freak out. He hadn't even put them on yet. then he spotted underwear...OH THE TERROR. he went off to school with all his clothes on and me completely exhausted.

I'm sitting here knowing his bus should be here soon and I am just waiting to exhale.

i know a penguine

who likes to polka, in tapioca who lives in mocha... pretend I know a penguin who likes to polka, in tapioca... and lives in mocha

a brief moment

For a moment I thought it would be a good day. the sun was peeking in my window as I woke up and stretched. the squirrels were outside my window noisily munching something or another. A.J. went it to wake Sammy and told him nicely it was time to start getting up. Sammy's response shattered any sense of happy calm i was feeling "shut up I hate freaking damn school" nice!

we don't talk like that here so where he picks it up, no clue. I do know a little boy at school taught him the F word which he came home singing last week. He had no idea it wasn't something good.

Our morning proceeded to spiral out of control. I tried to race him to get ready which sometimes actually works. not so much today. he tried to get his shoes one and fell apart again. by the time we got to the car it was a disaster. I did get him to sing in the car which broke the evil spell.

and so I love

I love him with everything I have in me. every fiber of my being wakes every morning praying his windows are wide open and its not raining inside the house we share. some mornings I find a bright breezy young man who snuggles me good morning for a second and kisses my hair. Some days I find him snuggled up against me like a baby bird in a nest looking for protection. Some days the rain is just pouring down on us and we don't have an umbrella... its dark and lonely those days.

even after he leaves for school i sit there coffee cup in hand trying to figure out what I did or didn't do that caused the storm to come. Sitting there with tears just beneath the surface and the nagging doubt of pure fear in my heart that somehow it is all my fault.

you see... its been three years since the day autism walked into our life. three years we have had the label and every moment I still wonder what I did. I'm still not past the blame stage of my hurt I guess. I can't blame Sammy, it isn't his fault. I refuse to blame God, because I know God loves me no matter what, in much the same way that I love my sons. So the only one left is me... my fault. Like cold soup spilled in my lap its just there and I don't know what to do with it. I am at a loss. A terrible desperate loss and there isn't a possible way to climb out of this.

I'm sitting here knowing Sammy and I had an amazing night. He helped make dinner and set the table and helped make popcorn. he was sweet and gentle and he was so present. So available to me. I love seeing him this way. I don't want to go to bed because I'm so afraid it will break the spell and tomorrow will be a rainy no good sort of day

snow

we went away for a weekend. spent a night in a cabin and Sammy was so good... most of the time. snow outside and hockey with all the boys. I haven't seen him so happy in a long time. its been a good week. A week unlike most we see in our home. Sammy smiling and free. enjoying himself and just so happy.

I enjoyed every minute of him. thank god because this morning was a crap show

so much for silly bands

every single thing I have done with Sam only works for a short time. Silly bands were fantastic...if he cared about them at all. His behavior behavior has been horrid. Screaming,hitting,breaking things every single morning. I'm a step away from putting him in residential care. I honestly don't have a clue what to do anymore.

however today he went to a party. he roller skated and did wonderfully. he even had to put socks on for the skates.its amazing .its almost as though i have 2 different kids

4... yes 4

Driving home the other day I looked over at Sammy. He was staring out the window with a forest gump smile on his face. We had just been to visit his new school and had the 10 cent tour. He liked the sparkly doors in the lunchroom and the boat on the playground. He did however mention the school reminded him of sweaty shoes. I don’t really understand but I just nodded. So as we were at the light he was looking out the window. I figured it might be ok to try a conversation…

Please understand, conversations with sam can be painful. He rarely makes cmpete sense and it is difficult to get his attention. I often feel dejeted and sad when conversations fail. But it’s been better, so much better, so I figured we could try.

Mom- hey Sammy what cha thinking about?

Sam- being 7

Mom - being 7?

Sam - yup (pause) I turn 7 ,I be big, I be different?

Mom - you want to be different at 7?

Sammy- yup. I be bigger? I run faster, be taller?

Mom - yes, Sammy when you get older you get bigger.

Sammy - then I be big …like superman (silence)

That was it.

4 volleys. Yeeeehhaaaa

Sammy and silly bands

Eureka! My poisonous bug obsessed child has found something he loves that I am willing to give him. Though I do believe he would have been thrilled with a corpion for good behvior, that was just tad bit too much for me to handle. Cardinal rule of life with Sammy only promise or suggest what you will 100% follow through with. Everything in life is a lesson.

So silly bands. He earns them when he does something super awesome, or just for being good for a long time. He looses for acting up, making bad choices and defiance. He has an arm full. Seriously. He has been so freeking good lately I can hardly stand it!

parenthood

If you haven’t seen the show please check it out. There is a boy named Max. He is a dark haired dark eyed version of Sammy. He talks like him and everything. While I understand it is simply a show, it has brought me to tears so many times. Even just thinking about some of the moments on the show make me choke up. Silly huh?

Please understand, for the world to see this child, to see max, and maybe have an idea. An inkling of what it can be like to live with a child like Sammy. My heart sings because he isn’t some kid drooling in the corner or rocking and silent. He is a real kid, with great ideas and vibrancy and personality. He . Is. A . Real. Boy! Perhaps less people will ask if Sammy is like rain man when I mention he has autism. Perhaps through this a few less people will give me the pity look. Perhaps people will learn that he is a person, just like them.

Ma has no real behavior issues other than a moment where he breaks the fish tank. that’s ok though. Noone needs to know the dark side of it. I want them to know there is hope and sunshine and light or days when the windows are open and the breeze is coming in.

30 rock...

30 things I have learned from my son with autism

1. Packing peanuts stick to tear streaked cheeks, and immediately stop the tears

2. Lint from the dryer is almost as cuddly as a kitten, and doesn’t need to be fed

3. Oatmeal kisses last for 20 minutes if you don’t wash your face

4. There is an absolute wonder in grasshoppers, butterflies and spiders.

5. Sometimes things are messy, and that is just fine.

6. Some days your socks make you crazy. Underwear is a tool of torture and mass destruction

7. We all thrive on structure here. Consistency is key.

8. Turning on the ac 3 minutes before getting in makes the car the perfect temperature so your shorts don’t stick.

9. The words “I love you” carry more weight than a mack truck

10. My 5 year old can eat 3x his weight in berries.

11. Gluten free crackers make great frisbies. Gluten free cereal turns into slime when dumped in juice.

12. If you say no , mean it. If you say yes, do it. And sometimes being silly split’s the difference.

13. Never leave a permanent marker in your child’s reach. Especially near the baby.

14. While the 5 year old with autism may not be able to figure out the epi pen, the 3 year old NT kid can and will.

15. Running in the rain with no shoes on is way more fun than a shower.

16. Just because he sees things differently, doesn’t make them wrong. I sometimes wish I saw the world the way he does just so I could understand..

17. In a child’s eyes there is no difference between an eagle and a parrot.

18. Silly bands are like gold!

19. There are some things a hug, kiss, snuggle can never fix.

20. I am not a super hero, I do not have superpowers unless you ask my kids.

21. 15 minutes extra, is sometime all you need to avert disaster.

22. Mashed potatoes stick to ceiling fans

23. Just because he can’t handle it, doesn’t always mean I want to. But neither of us have a choice.

24. Blame is not important, the solutions are.

25. If you leave a drink alone for 30 seconds it will disappear.

26. I am so not equipped to be this child’s mother, but I am getting a crash course.

27. I don’t want him cured, I want him happy. Whatever that takes.

28. Dr. Suess rocks.

29. I am in Holland. I didn’t expect the trip but I’m learning to love windmills

30. Autism has changed our life…