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

sammy can be angry

So the other day sammy got angry with Daddy. He yelled and screamed and kicked and hit. it was terrible. Slightly less terrible for me since for once it wasn't me he was thrashing about on. so YAY for that. Dan misses most of those angry moments since he works during the day. So after about 15 minutes Sammy calms down . this was the interaction that followed/

Daddy - are you done being angry Sammy?

Sam - not angry now.

Daddy - Are you done hitting?

Sam - My not hit you. My want to play patty cake (insert pause here) wif you face!

I fell off the couch laughing so hard I hurt myself

by george i think he's got it

at 4.5

for about 6 months I have been working with sammy to teach him "jingle bells" this is the end result

my christmas concert

I cant

I cant keep doing this. all week every morning getting Sammy dressed has been a nightmare. he screams and kicks threatens and punches me. I can't keep doing it anymore. I'm going to loose control. it's not his fault but how much do i have to endure? I cant keep this up much longer.

it rips me apart having to deal with this. he is so miserable and unhappy lately. I just can't keep this up indefinitely

FAIL---GIANT FAIL

sam got gluten. nice crust of bread. whole wheat honey bread. CRAPTASTIC!

i have this issue with him being gluten free. It makes him behave 100% better. he hits less and screams less. So today there has been much wailing and gnashing of teeth.
However, when he has gluten he is also more alive, more present, more in my world. it's harder for him but he is more here.
How do I make a choice?
he has to behave so he fits in, but what good is fitting in when he is dulled?




on a side note I found gluten free dye free crap free candy canes WIN!

i lost it

my mind , my temper, my hold on life in general. i lost my temper with Sammy today. it was not pretty. I didn't beat him or anything. I stopped myself from going that far but he totally pushed my buttons.it was totally my fault. nothing more nothing less.

he is a sensory kid. he hates socks and shoes and coats and hats and underwear. he loves brushing his teeth but hates brushing his hair. if he sneezes he is stuck in place because the feeling of it is far too overwhelming. I know all these things. i know because of this it takes 20-45 minutes longer to get out of the house.i also know that I don't always give him much choice when it comes to his sensory issues. I know he can't help it but I also won't put his shoes on 5,000 times. It also doesn't help that my husband is a softy for this behavior and tends to fix it 5,000 times, so Mondays are tough to begin with.

so this morning he puts his boots on and 20 minutes later he says "make me feeeeeellllll weeeeeeiiird!!!" he is almost completely dressed and now needs to undress following the order that he put them on all the way down to the boots. the boots were put on after the pants but before the shirt, coat, hat, and gloves. at this point it is already time to leave and he is throwing a bloody fit. screaming , squirming , swinging, and kicking. I lost it. I yelled at him, pulled his clothes back on (all in the wrong order mind you) and walked out the door. he stood at the stairs SCREAMING. We get in the car his seat belt is too tight, his car seat is crooked, his pants feel weird. I have essentially screwed myself for the entire day! we get to church he refuses to get out of the car , I climb the mountains of crap in my car and yank him out. It is 16 degrees here today at 9 am. he hollers all the way to the church doors, at which time I inform him if he continues his behavior I am putting him in the donation basket. more wailing and gnashing of teeth ensue. NICE.

we get through mass I feel so bad for loosing my temper with him. He really cannot help it to be honest. So I tell him I am sorry I was mean and that I yelled. He hugs me and I feel better. he looks at me and tells " when you angry, you like hulk" great ... a big green monster. niiiiice

its been 1 whole year

one year since sam was diagnosed with autism.
365 days
52 weeks
8760 hours
525600 minutes
31536000 seconds
countless tear drops, screaming matches with Sam, myself and quite often God himself. Unimaginable guilt and pressure.
smiles, therapies, tantrums, hugs, kisses,punches,bites and moments where the dark just took over and wouldn't let go

those of you that know me well, know I have always suffered from Seasonal Affective Disorder, so winter is tough already. Not to mention I hate the holidays. so this last year was a shock in the very simplest of terms.

but here we are one year later.I can't believe all the emotions I have been through in this past year. the fear, the anger, the sadness,the shock, the desperation, the inability to even wrap my head around the journey i was faced with.

last year I had a child who couldn't talk, wasn't potty trained, couldn't eat with a spoon and fork. He hit me every day all day. He screamed for hours and hours on end. He ran away, out of the house at night. he couldn't follow a single step direction, hold a pencil or sit for more than 5 seconds.he hated us all, and to be honest I didn't like him very much either, most days. there were no moments of clarity. there were no smiles or hugs and kisses. there was nothing but complete and total loss and darkness, the kind that is void of sound... and hope, He never invited me in. he didn't play with toys, he didn't smile. He never looked me in the eyes, and he never said I love you.

now.
he smiles and plays and seems to love life. he kisses and cuddles and hugs. he tells me he loves me. he helps me cook. he holds a pencil and cuts with scissors. he sits at school and holds my hand. he has a gentle side and sometimes even astounding moments of complete clarity.he seems to walk back and forth between our worlds and sometimes he even lets me in his. he holds my heart and my hand and we are in this together. he sings nursery rhymes and hugs his brothers. I love him and I LIKE him. he does well in school, he tries so hard. He went from class bully to a wonderful amazzing young man. he Even got student of the week!

there are still tough days and tough weeks. there are still challenges. his diet is so much work to maintain. but it works, and works well.

most of all these days there is hope. a wonderful warm light that washes us and keeps me sane, and whole. there is HOPE. thank God for that

stim team

that is who we are today.

members of the US STIM TEAM

sometimes, i forget. I forget he has autism. i forget he isn't like other four year olds. I forget how young he seems to be inside his head because he has made so many huge leaps lately. he has changed so much I think he is normal. I get comfy and forget he is normal, but normal for him. I forget he has autism. I forget that every minute of sharing this world with me is work for him. I forget how difficult sensory information is for him. how hard it is to listen to sounds and see things that don't make sense. he has no baseline for any of it. that in itself is fine. my problem is that at home, it is a safe and secure environment. his own little bubble where I can control the things in his life that are scary. today i forgot. i let my guard down. and like every time before this, reality brought me to my knees. watching him at the therapists office playing with the particles of dust in the sunlight, then screaming because the heat turned on abruptly. he was hysterical. I could not console him . he eventually calmed down. he spent the rest of the day in either a video game haze or stimming. he loves the bristles on the broom. he takes them out one by one and plays with them. soon I will buy a new broom having thrown this one out strand by strand. flappy, spinning, toe walking Sammy did have a tough day.

BUT...

one moment better than any other I have had in a long time. he hugged me around my knees. he does this often. runs into the room barrelling at my knees without warning. he has to hug me right then and there. so he does and says to my kneecaps in his melodic almost not there voice, the voice he uses when he is in his own world, "i love mom sweetie,sweetie loves mom,love mom" kissed my leg and ran back to his video games. i think i can understand where he was in his head. I hope i can, but even if I can't I have to believe he loves me. it's all that keeps me moving forward some days.

My cousin Bianca has aspergers. I love this little girl dearly. and she adores Sammy. my uncle and I laugh that Bianca knew Sammy was autistic even before the rest of us. she told me he was a robot like her. She was one of the few people that Sammy enjoyed being with. I told him this morning that she was coming over tomorrow for turkey and he asked "my hug her? my kiss her?" I explained that it is good to ask before he does. he nodded like he was listening.

I remember when my dad suggested autism was Sam's issue. i scoffed thinking he was crazy. I mean really what were the chances that 2 out of 4 of my children would be spectrum kids? seriously. who the hell thought that one up?

flash backs

I watched some old movies today of Sammy. They were just over a year old and he was in the bath tub. 10 minutes of Daniel and Kayla asking him questions trying to tease out answers. his only words -"ride bike" he looked up only when sprayed with the water. stimming continuously on the bubbles in the water. he mumbled something about the water bubbles to no one but himself. silent, stimming, and lost in his own world..

today.
he comes to me and climbs on my lap. hugs me close and tells me he loves me. whispers in my ear "say it louder, i love you Sammy" i know now that is my cue to hug him close and tell him softly "mommy loves you Sammy" to which he responds "thanks" he begins his monologue about star wars and how his games aren't working. he startles me by attempting his sad face to show me how he feels. his eyes still don't quite follow the expression. I ask him what he wants to do and he tells me he wants to paint. we draw and color and paint together. he chatters on about star wars and continues in our world for the most part.

there are still moments when he retreats, where I cant reach him. those are becoming less and less. he smiles and talks and can now predict the schedule of the day. he has come light years from where he was before. it amazes me to see it. it makes me so proud of him. he may never recover, but he will function and he WILL be happy. thank you Lord for that. thank you Lord for the wonderful blessings he has brought to me and thank you Lord for challenging me to help him and allowing me to succeed.

my children are elves

nate with my pastry bag over his head, which gave sammy a great idea!



i love love love love this picture

http://dallemienonnecucina.blogspot.com/

cooking blog!

i have decided i want to make my own cooking blog seperate from sam's. im trying to com up with a cool name

any suggestions?

emotion practice

angry sam-he's an angry elf

sad sammy- I swear when he does this I want to buy him a puppy

directive perspective

having a SN child changes your view on the world, not in the way one might think. Sure it changes how you look at the economy, schools, presidents... everything really.

But it is the little things that are magnified and brought into sharper focus. those glimpses into the neurotypical that knock me off my feet and cause tears to sting my eyes. every single moment is so powerful when you watch it from my point of view, which is becoming the same point of view as a wonderfully handsome 4 year old named Sammy.

spiders become giant and dust particles float like jelly fish. the clouds in the sky make him want ice cream and the rocks on the ground are cool in his mouth and sandy on his teeth. i watch him as he discovers in his own way the world around us. his wonder as he looses the moment following a spider across the floor. 20 minutes later confused when he becomes aware that mass is over and it's time to go. the delight he takes in sitting on the window sill so he can see the jelly fish in the air. watching the dust dance and fall around the room in the sun beam. it's purely magical for him.

the noises that overtake him, the ones we enjoy, the sounds called music. he covers his ears and pulls at his eye lashes. his hands moving a mile a minute in the air. speaking words he cannot express "get me out, let me go"

his body rigid against mine as I hold him for the millionth time, because once again he has hit me and is loosing control. I don't know the trigger. I can't find it. but the threat to him was real, enough for him to react out of anger and fear. he doesn't want to hurt me. in fact i don't think he even sees me at this moment. I must be the safe harbor, i am the comfort zone.

i need a comfort zone by the time i am done.

some days it breaks my heart to watch him lost in his world, until I step back and watch the world from that amazing view of a four year old boy with autism. it becomes magical ,inspiring, imaginative and sometimes very scary and almost always exclusionary. those quick glimpses are amazing when he lets me in... when I fight myself into his world. trampling the flowers sometimes and never quite as delicate as I hoped to be.

this young boy with the big blueberry eyes and white blond hair. the child who has learned the "sad face" the child who hates me and loves me, both because he truly knows no better. this boy...is my son, my world, my hero, my guide, my inspiration. he is my Sammy. and the perspective of the little things is so different from behind his eyes. the little things really do matter. only now do i realise how very much

happy halloween

kayla as the raver party girl

dan is so potent he knocked himself up! (better him than me)

jack skellington

scary fairy

Calvin and Hobbs

sammy the Jelly Fish. he wanted to be "sqishy" the little jelly fish from nemo. I did my best and he was happy

stunning and amazing...

sammy has a habit of telling me he hates me. i don't take it personally since weeeellll, he hates everything. soccer,bed,cake,muffins,cheese,butterflies and teddy bears... who the heck hates teddy bears and butterflies? My son apparently. every time he gets upset that is the phrase he uses to express his pure disdain for the item at hand. so Saturday he tells me he hates me. I asked him to follow through with his color wheel, it's kind of an ABA thing but not really. So he gets mad and tells me he hates me with as much venom as a four year old can muster. it went something like this

sammy*I HATE YOU* at the very top of his lungs

mom *when you say that it makes me sad. it breaks my heart. my heart is broken and mommy is sad*

sammy*mommy heart broken?*

mom *yes sammy, mommy's heart is broken*

sammy * i give you sammy heart.. it's fixed*

holy shit! way to go sammy

who would have though that was even possible. a moment of clarity ...... all from i hate you

hi my name is Annemarie and i do still exist

I have so much to say and put up. things have been CRAZY here.huge connectivity issues, reinstalling my computer from scratch... lots of great Sammy stuff, Nate stuff... Tyler and AJ stuff too. meetings and visits and lots of creativity here. Good food and yummy sweets including howtoeatacupcake's yummy pumpkin whoopee pies. I will post more as soon as I catch my breath

fist fights over toys

since day one I have warned the school that sammy can be violent and unpredictable. they thought I was crazy and overly negative. so i sat back and let them think what they wanted to. well...
apparently he hurt a little boy in his class over a toy. The teacher sugar coated it as much as she could but i can see that she will soon be telling me he needs new placement. I tried talking to sam about hitting at school and that if he keeps hurting people they wont let him go there. his response "Sammy stay home play games?" like it was a good thing... i was stunned! and I tried not to laugh. hysterical way of looking at it. like hey ok, so if I hit there is no school then I can stay home and play lego star wars

we went to ocean state job lot today to get a new toilet brush and bought a ton of GF flours and stuff for special occasion treats. I try to stay away from all the grains and starches for sam since we do try our best to stay compliant with the specific carb diet. but it's hard and almond flour just isnt quite the same to bake with. so his super special treats I make with Teff, and amaranth flour. it's more money than regular flour but cheaper than almond flour.

we also found freeze dried fruit. YUM and a great snack. it does have sugar so sam cant have a ton of it but once in a while it's ok. i also got some extra large lock lid containers to store my flour and sugar in. yay me!

supper for 2 nights

Garlic and basil chicken with citrus



I added some happy little mini artichokes to the dish because they were just begging to be eaten. my entire family loves them. this dish had quite a zing to it. the strong garlic with the basil and lime complimented each other. The citrus also made for very tender moist chicken. even Sam ate it and he HATES chicken most of the time unless its chicken wings of coursepork tenderloin with white peach and balsamic reduction
this is pretty much my new favorite meal. the peaches added a sweetness and the balsamic added a tang to it but it was smooth. i make balsamic reductions and bottle it. store it in the fridge for later use. this took 15minutes to put together it was fantastic. you don't have to use anything fancy I assume you could get the same effect with a really good balsamic vinegar without messing with it. then cut the peaches layer them over the tenderloin salt and pepper. the flavors stand on their own. YUM

despite the rain

we had a fantastic day with the family for little Mia Grace's baptism. what a little princess she is.

sammy was Perfect! it was such a great day. i can't even tell you how proud of that little boy I am. he went ahead and said hi to people. was appropriate in quiet a few moments and just did as well if not better than I would have ever expected of him

Mia Grace

Today is her christening. Shes a few weeks if not months old, and we haven't even met her yet. I feel like were bad cousins. then again I think to today and the type of behavior I can hope to see from Sam as well as the behavior I will very likely see from Sammy. he doesn't handle crowds well. in fact they raise his anxiety level so much that at least one physical outburst is likely, if not more. the food temptations,the people who touch him without asking, the people who try to correct him, the sheer volume and being in someone elses house are all a fail safe recipe for total disaster. he will melt down either during or after. it wont be pretty. I don't want to bring him and have him disrupt everything. I know he can and often does.
the light on that tunnel is one comment that Tracey made one day at Erin's house. I thanked them for all being so nice to Sammy and so understanding. Tracey smiled at me and said " why not we love him, he is our cousin" that one sentence meant the world to me. it cleared me of the guilt I feel bringing Sam when he acts wild. how much easier it would be for everyone if we just stayed at home. but I can't it's Mia's and Tracey and Scott's day... and it's been a long time coming

God Bless Mia Grace

sammy update

things have been good with sam. I know that at some point the other shoe is going to drop. or maybe I have adjusted my expectations so much at this point that it just "seems" good who knows.

it struck me however this week when daniel and I took Sammy to the store. he functions on a normal level for a two year old. he asks things and talks like a child half his age. does that mean that by 30 he will be about 15? thats better then forever 2 isn't it. maybe it will all be fine.

I am working on the new positive attitude with sam. it could be worse and it isn't so in that way he is a blessing. he isnt the child I thought I had or the child I had hoped to have, but he is still my baby and I love him.

he has found sheer joy in the mundane. chocolate chips and cup cakes with frosting. cuddles in the morning (oh how I love that) and a back scratcher. all of these things make him beyond happy. he has also begun rolling himself in the carpet for deep pressure. he got stuck the other day. that was funny. he also played , really played, with lego's today. it was inspiring.

my solution

peppers that fall over when you stuff and cook them. well how about this? it worked wonders.
i just put some tomato puree from my garden tomatoes and used the peppers from the garden as well. stuffed them with GF breadcrumbs,ground beef and ground pork, egg, fresh basil, garlic, salt and pepper

cuppies!

yummy. believe it or not I have NEVER made a cupcake! not once before in my life. I have cooked just about everything under the sun but somehow overlooked these fun little items.



I decided to go for it since I had a ton of bananas that needed to be used. I went to http://howtoeatacupcake.net/ and found a FAN.TAS.TIC banana cuppie recipe here http://howtoeatacupcake.net/2008/02/banana-cupcakes-with-banana-coconut.html

holy cow batman they are so yummy. I topped them with the buttercream frosting and holy heck my kids went nuts!





I couldn't leave sam out so on to the cupcake recipe for him. it called for rice flour and that is not SCD legal so I went with coconut flour and almond flour to total 3 cups. baking soda,gf vanilla, honey,oil, almond milk, cocoa powder(which is not scd legal but sam seem ok with it) and water.
because the coconut flour absorbs so much more I had to keep adding water to make it the right consistency.again I frosted them with a modified butter cream and they were fantastic.

braised beef shanks with potatoes

I bought the beef shanks (much like ox tail but cheaper) and braised them in a red wine sauce with two heads( yes heads) of garlic and one large onion. after searing the meat i added the potatoes. which by the way were from my lovely garden. i served it with corn on the cob (again from the garden) cranberry sauce and home made bread.

I made a coconut tapioca loaf for Sam. he decided a cranberry sauce sandwich was super yummy and all was well with the world.

just posting boy pictures

pumpkin butter

sammy stole the pumpkin for a hat.


washed and sterilized jars ready to go


collars,jar tongs and a funnel


seals (brand new) sterilized and waiting in hot water


1large pumpkin. peeled and cleaned.-i baked it first to make it easy to peel and also ran it through the blender first
2.5 cups sugar and 2.5 cups water
cinnamon,allspice,nutmeg and cloves to taste- about a teaspoon but just a touch of the nutmeg
set the crock pot on low(mine had to be on keep warm for it not to burn but my pot has issues)
cook it uncovered (i use a splatter guard though)until it reduces and thickens up (about 24 hours)

fill the jars and then wipe the rims of any messy stuff so that the lids seal properly.

into the water bath. covered with boiling water and boiling for 20minutes

it's great for ice cream topping, on toast, in yogurt. so yummy and no added crap!

back to school

Tyler. he is 13 and is in the 8th grade this year.
i can't even think about high school next year


AJ. he is 10 and in the 5th grade this year

how is it I have 2 in middle school now? when did that happen??????

and this is what baby brothers do when all the big boys are at school. you relax under your rocking horse with a dehydrated pear slice (from trader joes, so so yum)

sammy refused a back to school picture as he refuses most photos these days. what can you do