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.

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.






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

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

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.

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!

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.

the birthday boy

Today my angel boy turns five! FIVE!
when the heck did that happen? He had an amazing day today. He came out with me to a party, played all day with the girls and had an amazing time. he behaved so well I could hardly believe it. then he looked at me with his sad face and asked where his cake was.
We had a cake for him and party on the 9th of the month since his memere was here. he was sad he wanted cake and presents today too. so we did. I was so happy he was aware and asked. he was so happy. God I love my children, my family, and I feel so blessed

a star wars cake?

birthdays here pose quite the conundrum. Sammy cannot have gluten, artificial colors, flavors, or preservatives and my dad cannot have chocolate. So what to do what to do. I decided Ice cream cake was a good idea. Carvel was out of the question since they have all sorts of bad stuff in it. So... I made an ice cream cake
strawberry ice cream, vanilla ice cream and sliced strawberry center. I coated it in whipped cream and froze it in stages. The next hurdle being how to decorate it
he wanted star wars... OK easy enough without coloring right... ummm
i found some action figures and made a fight scene he loved it
here's the cake

Sammy Spazzy and the Spiderman Suit

So hubby is working mandatory overtime and I have a class tonight for my job. OK no biggie. except starting this morning Sammy has been a spazz! He put on his spider man costume and began screaming. Those of you that have an autistic kid understand that guttural scream i am talking about. the one that sounds like train brakes and chocolate pie being lit on fire while a moose dances the tango during mating season. Yeah pleasant really. It is one of those sounds that only a mother could love, and even then not so much! 12 minutes, enough to make me want to run away. Mind you I had just worked a 9:30-6 am shift came home and was trying to get ready for church. I knew it could get ugly.

he was OK at church only tried to run out once causing me to barrel after him down the side pew and almost smash into the usher. he also collected all the books in the first 3 isles and made some lines with them. He then placed his head on the pew fabric and ran on his hands and knees from one side of the pew to the other, the whole time static boy kept his head in contact with the velvety fabric.

We managed to leave church with mnor incidents and nothing more than a shoeless boy with static head

It was a dark and stormy night

Or in this case a dark and stormy morning.*enter dreamy sound with slow fade into a flashback*
So it all began yesterday at summer program, Sammy ate play-dough. For those of you reading this ( an I assume people are) play-dough has gluten in it. Giving Sammy gluten is like setting off a time bomb inside of him. He does not have celiacs, however, a lot of kids on the spectrum react badly to gluten and even casein. Sammy seems fine with limited dairy but gluten is an all out NO!
It happened though even though they were really trying to make sure it didn't happen. So today you could see in his eyes that it was going to be bad. I let him wear jammies to school but managed to talk him out of snow boots. He did however wear his pirate wellies. Good compromise! He wasn't thrilled about going to school but managed to get in the van without major melt down. A few short screams that his pants made him crazy and a minor flap session over his pants leg that came out of his boot.
We get to school a few minutes too early so we wait in the car.Immediately he starts bouncing around the car and wanting to get out. It's raining here today and I really didn't want to stand in the rain. I kept him distracted as best i could but then another child was in view so out of the car we went.
Everything seemed fine until the teachers came out and I saw he had his brothers harry potter wand (also known as a weapon in Sammy's world) So i had to remove it from him. Yup that did it. Put him right over the edge. Sam hid under my shirt and as I handed him over to the teacher he started punching and kicking. I walked away because I know I only make things worse on days like today. I sat in my car and watched the poor teacher struggle to get him in the door, but he went.
I hope he has a better day then he did morning.

happy fourth

my fear

i am so scared this will appen to sammy. He has been so close to it. Impulse control is not ihs strong suit. he has run out of the house more than once

http://www.fox23.com/news/local/story/Autistic-Boy-Hit-By-Car/6-4OiVt-VUGSQTEq_Si_jQ.cspx?rss=77

some things never change

I was watching Sam. I tend to do this quietly so that he doesn't notice me. I like checking out the way he looks at the world. Always at the ready with a camera to find that one sweet moment. Sometimes things are funny, sometimes sad, and sometimes just flipping weird. But no matter what it is Sammy. Sammy is unique onto himself, he sees things like no one else I know. sometimes if I am really lucky he lets me in. Those soft sweet, sometimes crazy moments are worth every tear. Nothing is without meaning anymore, sometimes it's just not the meaning I thought it was

today he caught me. he was watching the fan go around and around. He has loved fans for as long as i can remember. In fact it was his first sign. He would sit on the floor and wave his hand in the air in a circle. it took me a week of much frustration to figure out what he was doing. Of course this was back before we lost him. Before autism became attached to Sammy like a large birthmark. we have learned to accept Sammy in his entirety and have been able to adapt to the boy he is. We grieved the boy we thought we had and have learned to accept the one we got. every step of the way only loving him more and more each day. we are truly blessed to have him. I like him just the way he is

In this video, my husband was in his world checking out the fan too.

that's my story...the end

melt down!

So things have been great with Sam lately. He's using his words and asking for things he needs. They really are more of a statement most times than a question. If he wants milk he will say "I am thirsty, for milk" rather than "can i have milk please?" either way I get what he means. Well, last night, no words ... nothing just screaming! he wanted a juice box and not just any juice box one from his backpack. .He let himself get so thirsty that he flipped out. Poor guy.



BEFORE JUICE BOX







AFTER JUICE BOX












He slept in his tent yesterday in my living room. He even told me "mom, you snuggle me!" so I did. he gave me a pillow and put his head on my chest.kissed my neck and told me " your smell pretty mommy, My just love you" totally mae my entire day!

Sammy Has learned... so have I

He has learned so very many things over the past few months.
- his people have eyes now when he draws them.
- he has learned to build castles with blocks
- he has learned to say I love you
- he has learned to sleep in his bed
- he likes to color, he may not do it well but he does it
- he has learned to have authentic conversations
I am so proud of that young man. He has come further than I could have ever imagined. He was sitting at the window counting raindrops each one after ten being 65. 28 minutes of sitting there in the window counting rain drops. Now he is laying on the floor rolling back and forth. I don't fight it the way I use to, I don't grieve the way I use to, I don't feel the way I use to...

because of him



how can you not love this kid
I felt hopeless when we found out. I feared the future and the past, I had horrid guilt, and cried all the time. I freaked out inside every time he stimmed that i would never get through to him. I cried when he ran circles in the house and couldn't sit still for a second. But those things that made me sad have become my joy. Sammy is just Sammy who happens to have autism. He just happens to think in ways that may not make sense to other people. That is OK.

he is who he needs to be and to try to "cure" him and rip the autism from him seems so unfair. It is woven into our lives. Don't get me wrong I want him to be able to live without insane frustration, I want him to live and succeed. But I don't want him to change. I like him the way he is, I love him for his weirdness, and I LOVE seeing into his world when he lets me.

wordless wednesday

pics

good days

Sam has been so fun and sweet lately. I visited his class 2x this week. He even said he was so glad I was there. I just love that boy. my keyboard is not working so I will just post pics

sammy made people!look they have eyes!

Hide and Seek

I have a new keyboard so look forward to lots of wonderful posts . YA



There were first communions at church today. Fine. I wish I had payed enough attention to know that so I could have gone to a different church. Sammy doesn't like people he doesn't know in the crying room. It freaks him out. So needless to say he was very off. He kept freaking out and punching and kicking. Not anything out of the ordinary really.

At one point Dan went down to get tissues and Sam went with him. Dan came back into the crying room to tell me " Sammy is gone" I thought he was kidding. nope! He lost Sam

I tried the parking lot first and then the downstairs, the closets and the bathrooms. They announces his name in the church. No Sammy. I started panicking as we hit the 10 minute mark. there were so many people there who don't normally go to church. People who were only there for the first communions. I kept looking, and directing everyone so they were just running no where. 15 minutes from the time he was gone Dan found him. He had locked himself in one of the classrooms and was hiding silent in the corner.

I believe I aged 20 years today. I want to cry right now and throw up.

sammy says

this was a note from sammy my husband typed out for sammy last night. i needed to save this


Mommy, I love you and i snuggle you and I like you, and I want a sword an a shield and the thing that goes over you a breastplate and a shield helmet and some one take my blood out I drink my blood. I want a new house and a new movie and a good movie and there is no killing in it it is called and I want a new movie and it is going to be Tinkerbell I want Tinkerbell Dad and i want a girlfriend and a new black controller and my shield when it rips I need to get my Darth Vader mask and my Darth Vader everything. and I need a new sink where peanuts go in and i need another lamp and another spoon and a shirt for Daddy and A shirt for me and a shirt for me too, A big computer and a new truck and a base ball and i want to go to baseball and a hamburger and not my allergy backpack and that's all I have to say.

One would think that if a child has the word ALLERGY listed beside his name, a back pack listing his allergies, a ton of food from home, and a bright red backpack saying ALERGIK-ID you would not feed him without being ABSOLUTLY sure of his allergies …right? How can I make it any clearer???
NOPEnot last week. Apparently since Sammy said he can have hot dogs the teacher believed him. He got the school lunch, no money no free lunch…NOTHING. She gave it to him anyway. Granted his regular teacher is really good about making sure he eats safe and watches him around the things he cannot have. This however was a substitute. WTF?
Samuel cannot have gluten, artificial colors, flavors or preservatives. They make him crazy. He also cannot have tree nuts since they make him die.
So what did he eat?
A hot dog with a bun, a red jello and a coffee milk.
NICE
I lost it. I have to live with him and although he is amazing at school he is a terror at home. My friend Shannon had the joy of seeing him in a good but busy mood and that isn’t even half of what he does when he gets gluten and artificials.
It can get a little overwhelming here.
So needless to say I wasn’t very nice to sub. I may have even made her cry. She kept telling me it was only a few bites, he tricked her, he manipulated her… blah blah blah. OK let me set this strait. He is a 4.5 year old with AUTISM. He gets in line everyday and asks for the school lunch. He even tried to buy lunch one day with money from a monopoly game and a few pennies. Every single day he does this. It’s a compulsive routine.
Things are now in place so it will NEVER happen again

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

lock it up

I don't have a lock on the medicine cabinet. I should have a lock, but Sam has never been aware enough to think to get the meds out. most of them taste like but anyway. I never thought it would be an issue. they were high up, they were out of reach of just about anyone under 9 feet tall.............. yup except for Sammy

he got into them in the 60seconds i was in the bathroom. he took the melatonin. the only one without the child proof cap. the only one he knows is his. he took a bunch. no clue how much. he fell asleep at 2 in the afternoon. i watched him breath for the rest of the day until he woke up at 9pm ready to start his day. you can only give one in a 24 hour period/ 2 if necessary. so we couldn't give him more. he was up until 3ish. mind you the night before Nate was up from 12-6 at night. hasn't been a fun few days here.

soccer saga

last season we played soccer. it was a first here. Tyler ,AJ and Sam all played their first year. Tyler was amazing. he ran and kicked and just all around was fantastic. I was amazed since he was never that into any other sports but he just loved soccer. AJ again is just good at everything it seems and has yet to find a sport he isn't phenomenal at. Sammy... well, it wasn't pretty. he hated it. i mean REALLY HATED it. every practice every game he hated it. i would physically dress him put him in the car and take him.

It was horrid. one day i left to get coffee. Dan stayed with him. Dan left to get a soda at the shack and Sammy took off for the lot. the poor parents with him chased him but he wanted to be spider man and jump on the moving cars.. it was a rough season. for months after the season ended he would wake up give me a sideways look and ask me (in a voice that made it quite clear that my eye balls were optional) "my have soccer today?" he hated every single second of it.

I wasn't going to sign him up I swear i wasn't going to. but... he heard me talking about it. he begged and pleaded that he wants to play soccer. yes WANTS to play soccer. in fact he has put on his uniform once a day for the two weeks since i mentioned it. so i signed him up. and Tyler. and AJ. dear God what was i thinking???this may get ugly.

anyone want to come see a game?

Sammy Sleeps Silly Sometimes Saying Silly Sentences

Two new issues have come up in the last few days or so. One Sam doesn't sleep a whole lot. Sometimes he does OK but then gets woken by a bad dream. sometimes I am just clueless as to why he decides 3 am is a fantastic time to get up and douse my kitchen in items from the cabinets. dill seed was by far the easiest to clean up... mustard not so much. The past few days he has woken around midnight. both times he has been shaking head to toe and then he pukes. Could he be having a seizure? I have no idea but now I am worried. Like I don't worry enough.

Another endearing habit Samuel has begun over the last two weeks (with increasing intensity) is silly talk. words that make no sense. just sounds put together over and over and over. such as "laluleela buleeklaaaa beeee" It sounds like he is talking another language.It has now taken over 60% of his speech throughout the day. I think it's probably just a phase. he has done this before where he gets a habit it gets worse until i feel like i am going to run away from home and then *poof* it's gone. Dan on the other hand is really worried he is going to stop talking. I get it, but I don't think that is going to happen (as I listen to him throwing the ball to his brother and screaming"throw it through the hole!") so should I worry? is it normal? I think I remember toddlers doing this as language development.

Sammy and his dream world

Dan is concerned. I can't blame him. Sammy has some pretty serious dreams, usually they involve much blood, death, and fire. Before anyone says it's from what he sees on T.V. we do not have cable. we only watch movies and nothing he has watched has anything close to that in it.

he woke this morning to tell us how Courtney died in a kitchen fire in the house and he tried to save her. he wasn't quite so eloquent but seriously. he dreams I die almost every night. sometimes I get hit by cars, sometimes he runs me over with cars. One night he was crying because he dreamed that he killed AJ with a toy. He has also woken us up to check things, like whether or not his brother has feet, since he dreamed he took Nate's feet away. he doesn't cry when I die in a dream though

we are a little freaked out by the viciousness in a lot of his dreams and we wonder

could he just be crazy on top of it? is it normal for spectrum kids to dream like this. I think I read somewhere that it might be. I also know I read that a lot of bi polar kids dream like this. so what gives?

any insight people. I'm hanging by a thread here

LOOK! it has a penis.

Sammy is playing with a balloon. it's blue. he comes flying out into the living room and says LOOK IT HAS A PENIS. i squish it with my belly. of course Daniel and I are lost and have no clue what he is talking about until he squishes the balloon and a huge phallic appendage comes out of the end of the balloon. then he points it at me.

seriously

then he tells me it's a pear, then a shoot gun

but a penis???

now all of my children are making penis shaped balloons
then Sammy popped one. and looked stunned. I asked him if he was OK and he said . "yes,That scared me ha ha !" which I have now learned is a learned skill (thanks Shannon) he can generalize the phrases we have taught him and is able to use them properly

very similar to when we took him to down town Disney and he saw the T-Rex bones and said as loud as he could " I found his penis!"

perhaps we have an issue?

The land of Spinning pumpkins

Things have been very "autism" here. I dont know how else to say it. I haven't had any time to post things and am still getting caught up on all of my vacation posts. Sam has been like the energizer bunny these days. maybe it's spring coming , maybe it's my insanity, who knows.

he has quickly vacillated between one thing and another, Dr. Jekyll and Mr. Hyde if you will.

One minute he is saying " i call you sweetheart, I just love you more than camels" the next it's " i hate you, My want a new mommy" his newest choice phrase HOLY SHIT! he says it just to say mostly but once in a while he makes it make sense.

we had his IEP and they did give him full days and speech 30 minutes in/30 minutes out. He also has a socialization goal and such. I have a terrible fear he is going to fail at kindergarten. How do you fail at kindergarten you ask... well by the end of the year they want him to read, write, count (with 1-1 correspondence) from 1-20, recognize all his colors and shapes, and be able to pick his name out of a group of other names that start with S ...independently! he will get the colors, he may even get the name. but this poor boy cant count past 12 and with 1-1 number shape correspondence only gets to 6. and that took him 18 months to learn. he knows the letter S-A-M but he never puts them in order. again 22 months of home ABA.

so i dont see how it is even possible really. but he surprises me every day so who knows. we will try and if we fail we start over. no harm no foul?

Day two Vacation/Day three

Day two- rough trip really. We left later than I had wanted to and as a result Sam and Nate were not happy. Though I have to say Sammy did far better than I could have imagined.
We got to memere’s about 7:30. The last 30 minutes of the trip consisted of screaming from nate, at which Samuel would scream for him to stop screaming. Fun fun fun

Day Three- sam, louise and I went to the farmer’s market. Sammy had a loquat and LOVED it. He keeps talking about the circle fruit. We bought him a pint of strawberries and he ate them all as we walked through whole foods after.
Thankfully his barrack Obama/black man obsession seems to have faded. He hasn’t mentioned it once since we have been here.
Daniel and I went out with Michelle and Jay (who also have a child with autism) for valentine’s day. We went to raglan road. The food was amazing. I will post about that on the food site later though. All in all a great start to our vacation.

Day four- Church today. Sammy went off with Kayla to the child ministry program. He did very well and even tried to participate. I can’t even explain the way I feel to see him acting like the other children. To watch him focus and smile and play along side other kids in a way that seems so “normal” I can always see the things that make him different but hey they are there and that’s all there is too it.
We brought everyone to CiCi’s pizza. I made Sammy a GF pizza on a bagel and brought it with us. Packed some treats and sweets for him and he was really quite happy. He was so good the entire time we were there. I wonder if just the change of pace had made him so much easier. Then again the other shoe just may drop and kill us all. If it hit’s the fan, it will hit.the.fan. And then we are all screwed.

Day One The first day of our Florida trek. Fun I tell you. We left at around midnight for the first leg of our trip. Sam of course woke up INSTANTLY and began screaming. He was cold, he was hot, he needed a drink, he was tired, he didn’t want to sleep, the world was turning the wrong way and there were too many stars in the sky. Typical Sammy I guess.
We have been trying to teach Sammy knock knock jokes. I think these are probably the easiest to understand. So I start with this Monday of last week, We still have not met with true success.
It goes like this.
Me---Knock knock-
Sam--Who’s there?
Me---Boo
Sam-- AHHHH *running away*
Once in a while he has said “Boo Who?” but when I ask him why he is crying he always tells me he isn’t sad. No matter how many times I tell him that it’s the funny part and explain it.
We went through the tunnel/bridge and Sammy was impressed though at first he said he didn’t want to be underwater. He didn’t want to get wet.
We get to the hotel and Sammy asks me who the bathroom belongs too. I tell him we sleep here tonight it’s our hotel room. He looks at me and asks “in the bathroom?” Hey he makes me laugh daily!

obama

Sammy learned about martin Luther king Jr in school. they also tied it in with Barack Obama. well Sammy has gotten it so confused. he now says every day about 500 times a day that Barack Obama was a black man, he got killed cuz he dreamed and he also now thinks that every black man we see is Barack Obama. so we go to the mall and he screams across the concourse "look barakobama" at the very top of his lungs. and if that weren't enough he begins flapping and jumping on his tip toes. no way to get out of that quietly.

Sammy has been taking out my water bottles and working hard lining them up over and over. i put them away over and over and he just keeps doing it again. not so bad but like this time it was directly across my doorway. not fun

Sammy enjoying his brownie so much he fell asleep while eating his good day treat. melatonin is the best thing ever.

it's just a joke

so that is Sam's new phrase he says it all the time. it makes no sense and he usually says it when i am really mad at him. i haven't figured out where he got it from but I am sure i will.

he drew a great picture at school. Mr. Ohno. its just eyes and a head legs and two hands. he also got student of the week this week again. you see Sammy strips off all unnecessary clothes at school... socks, underwear, tee shirts you name it. so Friday he came home and his socks were still on so his teacher gave him student of the week. YAY SAM.

Tracey and Erin gave Sammy a ball for Christmas that he LOVES. it was full of air and big and red and looks like a giant chuzzle. well it got popped and he cried for days over it. until he realised that he could put it on his head and wear it. so he does. he wears it everywhere. he loves it. it's his new favorite stim toy. thank god he now leaves my microwave pieces alone!

give me one moment in time

over the last 4+ years I have been through so much with Sammy. I still kick myself for all the things I didn't know or realise. It makes me sad because I am sure he would be even better off if I had caught it sooner. but that is just my head talking

I've been giving a lot of though lately to the future. what life may or may not be like for Sam as he gets older. granted he isn't rain man or anything but he certainly isn't your average Joe either.

will he drive

will he live on his own

will he get married

should we consider training him for first communion and if we do what then. it has gluten .

he seems to be on an upswing lately, directly proportionate to the downturn he took the past few weeks. he got dressed and ready for school without too much fuss ( i let him wear his jammies under his clothes)he ate dinner, cuddled and was just great. he told me he loves me and hugged me without me having to ask (a rare occasion) he asked for a cup cake and waited until I got it.

his speech suddenly jumped a level and now i can understand him 80% of the time.

praise god

its good today. but you never know. it's like having a wild animal in the house it can turn on you any second.

someone today was talking about how frustrating regression can be. it is so hard. every day with Sam is like a dance. 12 forward 6 to the left and 9 back. but somehow we always end up ahead of where he was when we started. He is starting to be one hell of a dance partner.

I'll take it. at least now he knows I'm here. at least now he can say he loves me. he is Sam after all. every moment of everyday is such a challenge for me to care for him... but I think everyday is even more of a challenge for him to try to fit into the world around him.

before

after

3rd times a charm

all about me

being the mother of a child with special needs is not the easiest thing in the world. It can often be undignified and really down right too fast to manage. So as a result of this and working nights (to be home with sam during the day) and poor eating habits. i've put on more weight than I am happy with. I'm working at loosing 25 pounds or so. I found a great site ,im moving my butt and enjoying it... mostly. feel free to come and join me anytime at my fitness pal

[url=http://www.myfitnesspal.com/weight-loss-ticker][img]http://tickers.myfitnesspal.com/ticker/show/12/229/120229.png[/img][/url]Created by MyFitnessPal.com - Free [url=http://www.myfitnesspal.com]Diet Journal[/url]

living with sammy is the equivelant to living with an abusive boyfriend

poor Sammy has been so sick. coughing and hacking. fever and wheezing.
Interestingly enough when he runs a fever he seems normal. I should have known something was amiss when he explained to me that his head was a melon and if I ate it he would go to heaven. He really isn't feeling much better yet, but he feels well enough that his sensory issues are over the top. his blood sugar is a mess and he is off diet from the Tylenol for the fever. necessary evils yes but the fall out sucks. he screams and cries. he hits AJ whenever he gets in striking distance. he is stealing food and tonight he woke from his nap freaking out. screaming about the light and the noise and everything else. I am exhausted. poor baby cant help it. he is stimming on everything. he keeps singing songs over and over and over, playing with the door chain like a cat with string. counting to ten over and over. kicking screaming and just being an autistic 4 year old.

but he still wants to love me. he still kisses me and hugs me and smothers me. he rubs my face and my shoulders and my chest. he has been so sick he keeps even asking to nurse. that has been forever.

he just woke up. tells me he peed in his pull up. gets a new one and says its not a pull up its a nemo swim(swim diaper) i get him a pull up he asks to cuddle by sitting in my spot. he smiles and touches my cheek. "Sammy hand cold" he says he is sitting with me stimming on my ear phone wire cuddled into my chest. And for this moment there is no where else I would rather be in the world then here with my Sam I Am