Wednesday, December 15, 2010

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

Thursday, December 9, 2010

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.

Wednesday, December 8, 2010

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

Tuesday, December 7, 2010

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.
video

Monday, December 6, 2010

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

Monday, November 29, 2010

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

Saturday, September 25, 2010

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

Friday, July 16, 2010

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.

Thursday, July 15, 2010

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…

Thursday, May 13, 2010

He does not call the equipped...

He equips the called. We hear this a lot in our circle. I'm frustrated and here is why. I feel ill-equipped I don't feel like I have the necessary tools to raise Sammy some days. It's my pity party and I will cry if I want to. But I am humbly reminded in these moments the problem is not with Sammy. He is perfect and in God's eyes just as he should be. the issue lies solely in my lap. I don't know what I am doing




I hear this and remember, he does not call the equipped. Obviously he called me. In a loud and earth shaking voice. It scares me to be trusted with such a monumental task. He is amazing and I am blessed. My help comes from the Lord. I cannot do it on my own. So I humbly beg you Lord to watch over me and help me find the strength to carry my cross. you have trusted me with something that not everyone is trusted with. I don't want to let you down. Help me praise you Lord, in my own personal storm

Wednesday, May 12, 2010

got the fever for the flavor of a pringle


Sam with a fever on Monday of 103 was more coherent than any other time in his life. you see when Sammy does not have a fever he is like a pringles chip. They taste good, come in different flavors, aren't as bad for you as other chips because they have less extra grease and fat. They are light and airy and come in a can. When he has a fever he is much more like a regular chip. real honest to goodness potato chips aren't formed all into the same shape, they taste even better even if they aren't as good for you. They come in a bag which makes you feel like you somehow got more even if you didn't.
stay with me here
When he isn't sick, he is a pringles chip. he sounds the same and acts the same. his words have been given to him and rarely do you get something you have never heard before. Everything revolves around star wars Jedi and spider man , its really all just one formed chip. Granted being healthy and not having a fever is the preferred option, what fever seems to do to his brain is amazing. His conversation healthy is light and airy and sticks to the surface. He still only holds 2 conversation vollies.
But with fever he talks about everything , he becomes real...3-d. he sings songs without prompting, tells me what he likes and wants. smiles and even held a 9 volley conversation. he talked about the sky and the sun. He asked where clouds came from and then understood the answer. Before anyone jumps on me for the "real" comment please understand I am not saying he isn't a real kid otherwise, he is. It's just the difference between flat Stanley and Muppet's 3-d.
I love him more than anything and I obviously want him healthy but I do wish I could keep those pieces of him closer.

Tuesday, May 4, 2010

the joys of life



There truly is joy in every moment of my life. I know I use this mostly for Sammy but my oldest son is on the spectrum as well. Tyler has Aspergers. He is an amazing thoughtful young man with a quiet and calm sense of self. Up until a few years ago we never really saw him express emotions.


In fact in second grade teachers thought he was depressed. He made the same face, happy or sad, it didn't really matter. Once we realized where the deficit was we worked on it.



He smiles a lot these days. He is 15 and so much fun to be around. He relates so well to Sammy and most days is his favorite person.

We took the kids to the park. we brought a parachute with us. wonderful things happened. Sammy's language was amazing. Tyler had a blast and I giggled as I watched the chaos. I loved every.single.moment.





the mornings


Let me start by saying boys are gross. little boys eat sleep and breath boogers, dirt and all sorts of other nasty things. in fact I mean that both literally and figuratively.So this post is gross...sorry

Mornings here are a bit much with Sammy. He hates getting dressed and his new issue...boogers
yes boogers. He wakes up today at 6 am, informs us he peed his pants and then starts flipping out. 15 minutes later i have ascertained only that its something that is hard and stuck. 10 more minutes and i have now figured out that it's a booger stuck in his nose. Its hard and its making him craaaazy!
I help him (read=fail) to blow his nose. I of course do it wrong and yet again chaos ensues.
my husband at this point left the room so here is Sammy, naked (peed his pants) writhing and screaming on the bed beside me. I'm only 8 days post op today so I'm still sore and fragile.
Daniel did come and rescue me only to have Sammy then switch gears to watching TV during breakfast. Breakfast and videos are never an allowed thing. Sammy thinks for a minute and then tells me "that is just crap mommy total crap" Crap, i wonder where he got that from...lovely!
45 minutes later and Daniel is battling him over underpants and t shirts. Sammy is screaming about hating school and wanting to go in early, video games and television. The list is endless.

his bus will be here in about 15 minutes he is playing his DS and calm. thank God he wont need to be carried to the stop. I cant do it.

we did have one fantastic moment today. I slept in a tank top since it was so warm. At some point this morning Sammy says "You might want change you shirt mom" when I asked him why, his eyes got big and round and his face lit up as he smiled at me. His little hand was twitching as he quietly told me in a hushed giggling whisper "A'cuz my want tickly you!" Those windows into his thinking, those moments make the hours of crap and anger we dealt with today worth it.

Thursday, March 18, 2010

Sam the ninja

Sam thinks he is a ninja. He's a backwards ninja with his pants on his head. Life is always interesting in our house. The insight Sammy shares with us is sometimes the largest ray of sunshine anyone ever could get. he shines like a new penny in the sunlight. today happens to be one of those days. I'll take it.




video

He also got sick at school today. He has been a puker all his life. He has a hair trigger stomach. After changing his diet it got better. spring is the time though if its going to happen it does. He's sitting on my couch in his underpants playing video games. He's happy and well.

He told me all about the leprechauns today , what an amazing imagination. maybe ill get him to tell me more again later. I do love listening to him talking to me. it took so long for him to find his words. I pray they never stop. His voice (even when he is angry) is like music to my ears a soft song on a summer night or a ruckus wind that clears away the clouds. Again. Ill take it

Tuesday, March 2, 2010

Stolen Pictures

Those of you with children who were diagnosed after 2 or 3 years old. Have you looked back at your photos? The photos you took before the day autism changed your life? For some of us that day was an answer to a silent , or not so silent, prayer. Some of us were shocked and terrified. Either way we had answers at that point, whether we wanted them or not. There really was little choice at that point. I moved through those days and weeks in kind of a stupor, but I got through them.

What still chills me to the core is the way autism has crept across all my photos. I look at photos of him before 9 months and I see a little boy inside his eyes. He is in there ! His windows are open and I can feel his presence. I remember him from so long ago. The child who babbled and played peekaboo. The boy who loved mommy and daddy.

From 9 to 18 months something changed. At first it was slow, little things that just didn't make sense. A child who suddenly became aggressive and angry. He stopped making word sounds I stopped being momma and became a grunting guttural sound. then BANG like a gunshot in a crowded room, everything was gone.

I lost my little boy at 18 months. I see that now pouring over his baby books and reading the entries into his journal. I didn't see it then. I still thought things were OK. I believed if I loved him enough those nagging doubts would go away. they would silence themselves in still dark water and my shining son would be fine.

Until the day i looked back at his photos. That day shook my being to the core in a way that nothing else could. " I'm sorry your son has autism, there is nothing you can do" didn't even have the impact my photos did.

looking back I see a little boy with fading light, changing intensity, disappearing self... and I missed it. I missed it all. I put my blinders on and trudged ahead as if my world wasn't changing. Autism crept in and stole my photos of the vibrant boy I thought I had and replaced him with a shallow imitation of the boy I knew him to be. It stole my son away from me and I have fought so hard to get him back to me. He may never be the same and really, who wants that? But I need to see the windows open.

I know now there was something about Sam from the beginning, something...different. He never cried in the nursery when all the other babies did. He never looked at me when he nursed. He never slept. His cry was always hollow. He always sounded strange when he made noises. I know now that those were signs I missed, ignored... It hurts me. I failed him.

But would anything have changed if I had kept my eyes wide? I have no idea. I know that those pictures register guilt, control, and culpability for who my son became. I am his mother. that makes it all my fault ...right?
I look at him today as he gets ready for school, green eggs and ham day, all dressed in green jammies. Wide eyes and a big smile as he stares past my eyes into my hair. His eyes darting everywhere as he smiles and flaps. I brushed his hair without incident today. His teeth never got brushed and he hug kiss snuggled me from the door. His windows are closed today so far. I hope he comes home with some fresh air for me. After looking at his photos I need it

Sunday, February 28, 2010

a day with no sparkles


Today was rough. I am just getting over a nasty bug and honestly feel terrible. Sammy picks up on that, sort of like the way a dog smells fear. So while I tried to lay still and get well, Sammy has brought complete havoc on our house. puddles in the bathroom, scissors to his pants, sharpie to his baby brother. yeehaa ! I am greatful my darling husband is so good with sammy. Sammy has informed me that puking is (usgussin) disgusting , jammies are no fun, and he hates his life. Once I became mobile I found random pickle deposits , socks everywhere, and even some random sticky goo smeared on my kitchen floor. it's a lost day, and sometimes that has to be ok.

Tuesday, February 23, 2010

Welcome Back

Things have been good here. So good that I haven't been writing here. We have started Kindergarten here. What an amazing journey! Yes we still fight daily when it comes to getting dressed, brushing teeth and hair, and eating breakfast. I still get beat up most days when he gets off the bus. But there is something more these days to Sammy. He has this soft sweet energy. He makes me smile and looks me in the eyes more often than not. I always felt deep down that autism took my boy. That we had lost a piece of him that would never be recovered. But some days I see him. He peeks out like the sun behind the clouds. Sometimes he stays for a chat. He tells me things I never think about and notices things I don't. He smiles with his whole face and cries with his whole heart. He amazes me!
video
Its been 2 whole years since he was diagnosed. Christmas is so hard because of it. It is the reminder of what we struggle with. I see children younger, or close to his age. I am amazed at the difference of where they are and where he is. I have no clue if he will ever catch up but for now he seems to be a fantastically engaging child with a 3 year old mentality. I love the Sammy we have found. Please God let him continue to visit.