IEP take 2

It's hard here right now. It's closing in on the end of the year and summer is quickly approaching.  The weather doesn't even yet feel like spring and I am already looking forward to the end of the school year.

We had Tyler's IEP meeting this last week and it went well. I love the new Special Education Director. She is really on the ball and totally understanding. She helped us come up with great ideas for Tyler to help his senior year be the best it can..

Tyler will be using a computer at school and will begin emailing his homework assignments to himself and to the teacher's when completed. The computer can come home with him. Tyler's biggest struggles right now are in the realm of executive functioning. He can't seem to organised the steps in his head to start and finish much of anything. Even with the things he loves like wrestling he will often forget his shoes or singlet. It only gets worse if he dislikes the teacher or the subject.

He has some major goals in mind this year. he wants to be captain of the wrestling team. In order to do that he has to be on the honor roll.  Big changes are coming now it seems. He is back on the mat after a devastating injury ended his season last year.

Unconditional Love

There are some things that are just nonnegotiable. Love is one of those things. When you really love someone you always love them. It doesn't change because you don't get what you want. I am so grateful for Daniel and his family.
It isn't often that you hear about how wonderful someones in laws are, but mine are awesome. I came into this every mothers worst nightmare. I had two young children and contentious divorce, I was damaged beyond belief and really just a total mess. If I had been in my Mother in Law's position I would have told my boy to run for the hills, and she may have, but I never heard about it. Instead this woman invited me to her house, treated me with respect, and was never any less that awesome. She took my boys right in as though they had always been part of her world, allowing them to call her "Memere" just like all the other kids.  The boys loved Mem and Pep from the beginning . Even when the boys couldn't spend Christmas with the family because of legal issues, the entire extended family still gave them gifts. That Christmas I couldn't give them much, we had just moved overnight days earlier. I had no money, I couldn't give them a thing. The entire family pulled together and did for the boys (without even knowing it) what I couldn't do.

It's at a point that when talking to my mother in law about AJ or Tyler she will say something about them being a lot like their dad, forgetting that there is no genetic component between them. How amazing that must feel to be so unconditionally loved by someone who doesn't need to love them. The rest of the family, cousins, sister in law, brother in laws, aunts, uncles, and cousins have all been so amazing and loving to these boys, and for that I am so grateful. It was never about me, they didn't have to know or like me to like the boys, and I am so blessed to have them as part of our family.

No one is perfect, but love does so much.

Sometimes

Sometimes in my house it's quiet and peaceful. When everyone sleeps in their beds snuggled in beside their pillows and stuffies. Sometimes in my house ,if I close my eyes real tight, I feel like everything is perfect and wonderful.

Sometimes I look around and feel nothing more than overwhelming joy that I am so blessed with all that I have. Sometimes I even get a cup of hot coffee all to myself. Sometimes I get to finish it while it is still hot.

Sometimes I look at the clothes to wash and dishes to do and it makes me cry. Sometimes I just get so overwhelmed with where I am in my head that I can hardly take another breath.

Sometimes I struggle with balance and being a good mom. I struggle with understanding when certain things shouldn't matter. Sometimes the messy bedroom, dirty dishes, and forgotten home work have to be swept under the rug and forgotten for the day. Sometimes they scream my name as I walk out the door with my sunblock in hand as we head to the park. Sometimes I get to the park and feel guilty.

Sometimes I just feel so grateful that I am so very blessed and happy. sometimes I look at my husband and I see the person he was before we embarked on this incredible, hectic, intense life of ours. Sometimes I remember how young we use to be.

Sometimes in my house it's just quiet, just the way I wished it would be a few hours before when everyone was talking or screaming or crying or yelling. Sometimes, when it is that quiet I get lonely. I sneak over to the little ones and snuggle beside them. I kiss they foreheads and nuzzle their ears. I say prayers over them and inhale the scent of them.

Sometimes in my house and it's just quiet and Sometimes...it really bothers me

Second Chances

You all know how heartbreaking it was when our dog hurt our little girl. I have been slowly working through all of this in my head for over a month now and I have made some major discoveries. The bottom line is the dog, our sweet Chance, is not aggressive.

We talked to the original shelter and found out that Chance is 5 years old and a Labrador/Fox Hound mix.

We started training with him 2 weeks ago with RICK from SOUTH COAST CANINE we just love his thinking and he has great people skills as well as dog skills. Since beginning training we have a completely different dog. He is no longer jumpy or skittish. He follows commands very well. He stopped pulling on the leash when we walk. He heels, sits, stays, comes and goes to his kennel. We set up a gate across the playroom so Chance and Grace are never alone in the same room together. He eats in his kennel just to be safe even though he really doesn't show any food aggression. He no longer gets rawhide treats. Grace isn't scared unless he barks. He can sing and that doesn't seem to phase her . Oh the joy of hound type dogs.

This was tonight. Dan was putting Sammy to bed and in true Dan fashion fell asleep too (so much for watching the new Footloose) Chance snuggled up beside them. Sammy really is that dog's person it seems. Chance loves that boy in a way I have never seen. He tattles on him when he sneaks out of bed. He keeps him from leaving the yard. He sits beside him when he melts down.

So tonight as I watched them for a moment I thank God for all the second chances in our lives. Without them, things would be so different.
I am quiet certain that Chance is glad to have another chance too...

Frustrated and Angry

Has the world forgotten that children are people too. Our kids are people and just as important as those bigger people around them. Have we all forgotten that we were children once too?
Each day I  read through posts of children that are being hurt, abused, abandoned and killed by people that should be caring for them.




This makes me ill. This child is helpless. When will people understand that no verbal does not mean non thinking?  What were these teachers thinking? There is no excuse for this in any way

THE UNTHINKABLE

Then there is this post from Jess over at Diary of a Mom at the Huffington Post about parents killing their autistic children. I understand the stress. I understand the sadness, the uncertainty. I know these kids are awesome I know these kids are incredible. I wish everyone understood it.

and then this weekend at BJ's Wholesale Club in Dartmouth MA. A manager pushed my son Sammy to brush passed him without a word. She pretended like he wasn't even there. He is a person too. I am quiet certain that if it had been an adult, this wouldn't have ever happened.

These children are not throw a ways. Our children are not garbage to be treated like this Our children do not deserve this...
No One Does

For My 1 in 88s

My darling boy, my sweet sweet Sammy. You can't possibly understand how very much I love you. Too the moon and stars isn't even close and 10-100 is too small a number. My darling feather headed boy, you light my days with your smile and hope. You shine  through your beautiful blue eyes like nothing I have ever seen before. I cannot imagine my days without you. I love you so much, your being, entwined in  my heart strings. I keep you close by and hold tightly because I don't know what your future holds. You asked me tonight to check your brother to make sure he was ok, one year ago that would have never happened. The moments and phrases that are uniquely you make my heat leap with joy and pride. Seeing your beautiful school pictures come home, with your hair that you combed yourself. You are a powerful force my boy. You are amazing in so many ways that even we haven't figured out yet. you have made me aware of emotions I wasn't entirely sure I could feel. I am grateful to be your mother.

Even in your darker moments, my fluffy headed boy, your being resonates with everything around you in a way I have yet to find words for. You are often so connected yet detached, happy yet sad, angry yet joyful and always uniquely you.

My sweet fluffy headed boy I hope you know how much I love you. That someday, when your "big as daddy", you will read these words I have written for you and smile. You will picture me with my arms wrapped tightly around you and my nose buried in your hair and you will remember what it was like to be  little. I pray that you will be happy with where you have been, who you are, and what you have accomplished. You see for some of us, things come easy. Yet, we still give up, we still complain and we still get angry with God because we just don't understand.

 So for now I want you to know.
 I WILL NEVER GIVE UP ON YOU.

I have done something out of the ordinary, something hard and scary for me. I signed up to participate in a half marathon for you. Because I can't fix so many things that are difficult for you, the least I can do is step outside of my comfort zone, raise a flag, raise awareness ,raise money for autism. I am doing this for you my sweet fluffy headed boy, because after all the determination you have showed me in you life it is the least I can do.

I hope someday you look back and remember how very much I loved you. I hope you read this in 30 years and it makes those difficult moments less painful. . I can't eliminate sorrow or stress, I can't make the world bunnies and tea parties. I can't save the world. But you sweet fluffy headed boy make me really believe I can.


And as always Linking up with Shell over at Things I Can't Say

Perspective ~ Blogging for Avery's Bucket List

Have you ever had those days where you just feel sorry for yourself?  Do you have those days where you just look at everything around you with an ungrateful angry eye? It can't be just me. I know I can't be the only one here that has bad days and I can't be the only one who cries in my coffee some mornings. This is hard. It really is and on those days when nothing is right and everything is sad I feel sorry for myself.

Yesterday being one of those days in reality this week has been horrid.This week I had dreams crushed,stress increased and drama unfold . The baby girl had a fever and a weird rash, then Sammy started feeling sick, nothing was getting done, then my tooth broke. I found out at the dentist that I would have to have yet another tooth pulled. "Just add it to the partial you are going to make" was the response of the dentist. Yeah thanks it's just that easy. I am 34 years old and I have some dental issues, those have caused me to loose most of my back teeth at this point. You see, not taking care of your wisdom teeth can apparently cause roots across your other teeth to shift and break, that causes hairline fractures in the tooth, opening them to decay. My teeth often go from the inside and by the time I know something is up,its too late. It sucks and I was really angry.
I sat there on the way home crying (who thinks that it wasn't necessarily just about the tooth?) and yelling at God that I didn't get it. This week has been one major disappointment after another and I was angry. I keep asking God what exactly it is he wants from me... I still haven't gotten an answer. It's almost funny right now how angry I was about this. Then I came home and relaxed for a while on face book and I found this.

Avery's Bucket List

I will let you head over and take a gander. It's ok I will wait, I have time. All I could think was "My God, and I was angry over a tooth"
It got me thinking... How does a person parent when the end result isn't going to matter? How does that change your train of thought on which to choose? I had read on another blog a while back the same concept, the child was older when they found out and for whatever reason it didn't resonate like this does. Perhaps its that Avery reminds me of grace, perhaps the joyful looks on mom and dad's faces coupled with the words of a post "SMA please don't take my smile away" It's hard for me not to cry. What do you do when those big decisions that the rest of us stress over have absolutely no consequence? The end result never changes, it's always the same. This little girl may live to be 18 months. That is just six short months from now for Grace. After looking at my girl, and reading Avery's blog I thanked God for his blessing and I quit whining.

Because yes while this is hard and this can suck We are all still here. No one knows what tomorrow brings and yes there may not be one for any of us, but to know your child's last day is coming, It makes my heart hurt just to think about it. Autism is hard, but there are tons of people in our corner. It doesn't mean the fight has been won, it doesn't mean the best options for our kids are there, it doesn't mean much really. It just means that someday something may come of all the research that can maybe help some of the 1 in 88. No one is researching SMA. How can this be? Kids are dying from this and there are no clinical trials or anything? Here you can read more information on SMA and find ways to help get the word out.

Families of SMA

So today I will hug my babies tight, because even though dealing with autism sucks some days, I will likely have very many more and that, no matter how you look at it, is a blessing.

Simple Things I shouldn't do

Like Shell over at Things I cant Say there are certain things I shouldn't ever attempt. It doesn't really matter the time because honestly , I can make really awesome messes anywhere.

1. Change my look when I am upset. the last time I did this it was drastic...and scary. It was right after my wedding I was upset about something (read irrational and pregnant and didn't know it yet) and I freaked out. Yup, chopped 9 inches off my hair and spent the rest of the year looking like something between a confused boy and a shaggy puppy. It's funny as I type this I have been thinking about a change and was thinking about just (you guessed it) cutting my hair! Thank you Shell for posting this to remind me DON"T DO IT.

2. Go bathing suit shopping after lunch. Ok, really ladies ,getting a suit is hard enough. The lighting in the dressing rooms make us all looklike something out of a Tim Burton flick and then to try to find something that covers all the places on us that we wish weren't there...well it's traumatic. Now add to that lunch and the post lunch belly that goes along with it, added to the body of a woman who has had 5 kids... yeah..no

3. Reply to blogs on my phone. I learned my webOS system sucks and for whatever reason tells me "you suck and can't post! Make your comment longer" meanwhile posting the said comment each time. Ooops..sorry Shell <3

4. Go to places that sell fluffy pretty girl dresses with witnesses. I cry. I sniffle.  I get all over emotional. It is embarrassing! I pride myself on being a pretty tough lady and dress shopping for a one year old made me cry uncle. I am such a marshmallow inside. Just don't tell anyone...ok?

5. Let down my filter in public. I am known for being filter-less. People who love me understand, but in a crowd most people don't know me. I am that person who says wildly inappropriate things to people. Like saying "It's nice to see you upright again" to a woman who passed out at my neighbors or "wow I didn't know the mole you had was that big, but look at the whole it left" Yes, both things have come from my mouth on separate occasions. Funerals are the worst, I will always say or do one thing I really really shouldn't do.

6. Post when I am angry. My  husband says that I have "rough edges" and that I am "prickly". I think my parents may have used more colorful language to describe my not so sweet disposition. I tend to let the fur fly when I am upset and I can be quite caustic (think battery acid). I always feel badly after and then I don't know what to do. Once something is posted it is there forever and then it eats at me for months.

7. Deciding to change a few things about a room when I am alone. The last time I thought about that I ripped down wallpaper and pulled out light fixtures in 2 separate rooms. Granted my lovely friend Miss J came to save me and fixed my mess...mostly. I still have unfinished stuff around the house which leads me to my next DON'T

8. Go to home Depot, Lowes, or Craft Stores alone. I will buy things I don't need with a ridiculously grandiose idea about what it will turn out like. I always over estimate my skill level and end up with crap I never use,put up,fix,change or paint. I have 2 gallons of lavender paint down stairs and small containers of blue, pink, and yellow to paint the bathroom bubble theme I wanted when we bought the house almost 2 years ago. I have to go there today to rent a tiller for the garden...pray for me...please!

9. Plan Parties. I become obsessed with details and I get crazy. I over plan, over feed and I always end up in a hysterical lump of tears at some point before everyone gets there. I get it out and I move on but still it can't be good for my blood pressure.

10. Visit new babies in the hospital or at home. OK really just even looking in the direction of new babies makes my ovaries twitch. We are Quiverfull and all but I am tapped out mostly at the moment. Would I be happy with more HELL YEAH but I don't know that I am really ready for that right now. Seriously though if I am within sniffing distance of new baby smell I just want one.

Top 30

So I am thrilled to see YLMB up there in lights... well maybe not lights but at the very least it's cool to be on the same page with so many heavy hitters in bloggy land.
There is a list over at babble of the top autism blogs and YLMB is on there. I would be ever so grateful if you happen by here if you took a few seconds to head over and click like.
There aren't any cool prizes or anything but it's still really cool! It only takes a second. You can also check out some of the other awesome blogs over there. Also feel free to come find us on Facebook We would Love to Have YOU


 

FIRE

I don't know if I have mentioned my dear friends Mr and Mrs G. They are so fantastic. I don't know what I would do without Mrs G. I guess you could say she is my best buddy. She gets the chaos here and never judges. She understands Sammy better than most. She's loving and considerate and just plain awesome! Ohhh and she makes some amazing food!

Well Mr. G is a firefighter in our community. Sammy has begun to obsess over firefighters,emergency vehicles, 911, police and everything related. My darling friend Mr. G (who I went to school with) let Sammy try on his turn out gear.

Isn't he the cutest thing? I love this picture. Can you see the happy in him. This moment made the rest of the day easy to get through. It was Grace's birthday party and that is always hard for Sammy. He did wonderfully and talked about this for hours after.

The Wrong Side of the Road

Photo credit source

Sometimes what you want and what you get are very different things. Sometimes there is nothing you can do but simply resign to the change in the picture. Autism was a lot like that for me. It was so much like getting on a plane headed for somewhere warm and ending up here. The seasons are great but I really thought I was going somewhere warm all the time. I don't love it any less now and I couldn't imagine being anywhere else. Even still, what I have is very different from what I asked for.
Sometimes the hardest lesson to learn is that your past follows you. The choices you make, the person you were,follows so closely behind that you don't even notice. Then that past, jumps in front of you and takes over. It is sad that sometimes people aren't ever allowed to change.
I want more than that for all my boys. I don't ever want them to look back and be ashamed of the person they use to be. I know when I look in the mirror I don't see what everyone else does. I want so much more for them. I want to see them grow into adults that can contribute to society in any way they feel led to. I don't want them to make choices that set up road blocks.
The same goes for Sammy, I want him to be happy and fulfilled. I want him to be able to look back on his life and be pleased. I want him to always hold his head high and proud because of how awesome he is is.
Because he is awesome.
People are more than the mistakes they have made. People are more than bad choices, bad relationships,bad circumstances. It's hard enough to survive a badly dealt hand but then to have it haunt you your entire life is even harder. It never goes away.I want more than that for my children. I want so much for them...
More than anything I don't want them to be me.
I don't want them to feel the way I do when I look in the mirror. Someday I will stop beating myself up over the mistakes I have made. I keep letting God work through it for me. I don't really have a choice since I am surely not strong enough to do it alone. I'm tired of running from it and I am facing it down. Every ounce of me hurts right now and the tears are bound to come. The only way to make it stop chasing me is to turn and face it head on.
It's time to face those demons, those horrible dark creatures that have been following me for 10 years. It's the only way I know how to do things. So I will take a deep breath, firmly plant my feet on the ground and make it happen.

Suit Yourself ~ My Heart Monday

Spiffy. Yes that is the word he used to describe the outfit I gave him for Easter Sunday.


I stood in the store in tears looking at that outfit for a few moments. Thinking only to myself how deperatly I wanted to dress him up for a holiday. How badly I wished my family could just once go out and be above the chaos. I wanted to be able to go to church without the fight and without pajamas. I didn't want to spend the money if he wouldn't wear it. I really didn't think he would.

Thank you Wonder Hubby. Thank you for stepping in and believing our boy could do it. To most parents it seems like a given, holiday = dress up. Not here, and I am sure not for most families like us. Sammy saw the outfit and put it on. I was being so careful not to get my hopes up. Even if he got it on doesn't mean it would stay on. In fact if one thing bugged him he wouldn't wear it at all.

We kept the tags on. Just in case.

He put it on with daddy's help. He even combed his hair. he came into the room for me to see and I was speechless. He posed for a picture. Wonder Hubby asked him

 "Sammy where did you learn to pose like that?"
Sammy's response ~"Napoleon Dynamite"

 The tears, the hope, the dream of just feeling like everyone else for just a little while was standing in front of me. I don't know why this was such a big deal to me. It shouldn't matter, but, it does. After all these years, it still matters. I held my breath on Sunday for the shoe to fall, for it to swing back and hit me in the face.
It was nothing Short of magical. Thank you Lord for the reprieve. It went by fast but it was a very good day yesterday.

This just reminds me that I can't assume. I can't get stuck on what Sammy doesnt do yet. I need to make sure I give him the same options the other kids get and stop jumping the gun. He may have autism, He may really struggle,but he is still an incredible 7 year old boy.

I knew it

Sammy has been amazing the past few days. Homework was done without a fight,he earned 2 full light sabers in a row. He went to bed with no fight,he stayed asleep 2 nights in a row in his bed without changing jammies. He got dressed for school and did not argue. He completed his video game time without tears. He has been amazingly awesome the past 3 days. I told my mom "mark my words ,he is getting sick"

Last night he took his bath and went strait to bed. At 3 am he wakes up and comes in my room. Grabs my hands and places them against his chest. His little heart was flying so fast. He was panicked. He felt like he was going to throw up and it was making his heart pound,which made him scared,which made it worse. Daniel and I spent the night comforting him. He never did throw up,it only lasted until 6 am. Coincidentally the same time about that Grace was wide awake refusing to sleep at all. She was dancing on the bed at one point giggling.

Just like that, Sammy felt better. How do I know? He punched his brother in the back. So much for being sick and mellow.

Show me The Money

Sammy and I set this up today. he is thrilled to be raising money for autism research. So if you would like to head on over to the fundraising page, click on my name, and add a donation. every bit helps. Sammy wanted to raise 20-100 dollars but we will settle for 100. Lets help make it happen for him

PAGE TO RAISE MONEY

Faster than the speed of Autism

I am aging faster and faster these days. I swear I am only 34 but having a 17 year old makes you feel older, add to that a child with autism and I am not aging as gracefully as I would like. Perhaps its the lack of sleep, perhaps the stress, perhaps it's just not enough martinis? Who knows! I even quit smoking before I got pregnant with Sammy. Oh some days how I wish I hadn't quit, I need a vice and Hostess orange cuppies are not the best one to have (that obsession is waning thank goodness) but they are fun to eat obsessively.

1. the edge of the frosting that dripped
2. then peal off the orange plastic...I mean frosting
3. split the sponge(cake) into two
4. suck out the glue...I mean filling.
5. eat the bottom then the top of the sponge
6. then nibble the frosting until nothing is left but the white squiggle.
7. eat the squiggle and leave last bite.

yes... I know obsessive but it's how I roll and if I keep eating them I will roll for sure. The crap and additives in them are a big no-no in my house and if my kids knew I was eating them they would for sure string me up and treat me like a pinata.
ok well maybe not that bad.

I have begun to obsess over jelly beans. I found all natural jelly beans at the health food store and I can't get enough. Surf Sweets...yummy

Back to my point. I am aging faster than the speed of sound and I can't just blame autism. I do suspect that the sheer stress of having such a large family is probably part of the real issue, and adding autism to that doesn't help. Picture a swarm of angry bees only made angrier by say a leaf blower. yeah... that's my life.  I think in the last 7 years I have aged 14 but the last four  years has been more like a decade.So pardon me while I go drown my sorrows in jelly beans  since I am out of orange cuppies right now.

Dan and I before Sammy

After Sammy but before Sammy was diagnosed 

this summer at "ponytail's wedding"

Light it Up Blue People

So everyone in the community is talking about Light it up Blue. Our local school did (though with itty bitty blue lights...next year flood lights!) my house has been blue for weeks and I will keep it that way. The world may see April as Autism awareness month but every day here is. I wake up being aware and I fall asleep (sometimes not for very long) being aware. So for that reason my house will remain blue from this point on.

This year I chose to do something a little... shall we say different. I have this awesome gray streak in my hair. It's 100% natural and it just happens to be the way my gray has come in. see ^ totally awesome yes? Well, it's just kind of my signature. My mom's gray came in the same way, except back then the pinwheel bangs were in style. My mom ended up looking like a snowball in front. Kinda Neat. I like to think the gray streak looks more like Rouge the super hero chick just less hott and more mommy-ish. Even though I do think some days I may just be a super hero.

So anyway, of course I digress. It's semi quiet here and I may have just drifted into nap land (hey gotta take them where they come right?) Of course the sound of wailing from the other room brings me right back to reality. Pardon me while I go peal my 4 year old off the light fixture!

Seriously though I went ahead and took light it up blue pretty darn serious. My hair (well my gray really) is now blue. yup I am a blue haired old lady in a quiet little town. Nice huh. Ohhh boy are people going to talk. *smile* isn't that the idea?

Don't Say It

"Autism is the new add. It's over diagnosed because Dr's are lazy. "

Really? Really? 

I read this and became so mad I couldn't even write for a while. I think I have finally calmed down enough to put my thoughts together. If I have to explain why that comment is hurtful, then you can't possibly understand how much these kids struggle.

1. ADD is not a game either. It often floats with autism on the giant see of the spectrum. I have yet to meet one child with ASD that doesn't have some form of either attention difficulty or impulsiveness or both. Autism Diagnosis takes more than just a few minutes and creates a need for documentation. Hours of meetings and paperwork. I don't know any doctor that wants more of those.

2. It's hard for most parent to get help, and hearing crap like this doesn't make it any easier. Yes there may be some parent out there who are looking for a reason to complain, but, there are more over here on my side who really need the help. I still struggle with it. I still worry about what people think. Maybe that is why this comment is such a hot button for me.

3. HOW DARE YOU treat this like isn't earth shattering or mind blowing. ANY CHILD receives a diagnosis of anything it sends the parents for a loop. Comments like this completely disregard and discount the struggles our kids (and parents) go through each day.

4. Would you ever say something like this to a parent who just had a child diagnosed with cancer? NO? why not? Why is it that the world thinks that these issues aren't real? because you can't draw blood for them? Because you can't see it? Would you say this to a mom of a child diagnosed with Down Syndrome, Depression, Bi-Polar Dissorder, Cleft Palate? 

Comments like this are a slap in the face to every kid out there with autism. It discounts us, makes us small. It's demeaning and unfair. Don't Say It EVER

I get that  the person who said this probably didn't realize how caustic and hurtful their comment was.  Maybe they were just trying to help, to console, to empower. The comment above did none of those things. As parent of spectrum kids we second guess enough crap in our daily lives, we don't need you adding to it. This comment wasn't even said to me and in honesty the person it was said to may not have been as upset by it as I am. that's OK. If you don't know what to say just try "hey, how can I help" and leave it at that.

Autism is not the NEW anything. 

If you didn't know which child had autism , could you tell? Probably not. Autism may not show up in a blood test or a scan. It shows up in our houses, in our beds at 3 am, it shows up even when we try to ignore it. This is the face you discount when you say things like that Sir. It shows me how uneducated and uniformed you are. April is Autsim Awareness Month, perhaps you can learn something. After all "Ignorance is the NEW badge, people wear it simply because they are Lazy"

a Land Far Far Away

I would love to move somewhere warm. I really don't love being in Massachusetts. it snows here and I get so anxious driving in it. I want to go south, but a lot of the research I am finding says that the further south we get the less services Sam will get and the more fight we will get. I know that isn't quite true for all kids south of the Mason Dixon Line but it seems to be true for a lot of autistic kids. I have heard about a great program in Florida but I Sammy seems to be ahead of that game right now.

I think the issue has a lot to do with kids like Sammy and the fact that they "look normal". I always have well meaning people say that to me and it makes me mad. Just because he looks like every other kid (although way cuter than most) doesn't mean he is. It also doesn't mean he doesn't have the same feelings and emotions that the other kids do.

My point being, I want to move South. I want to move WARM and I can't, just like I can never die (EVER) or  have a day off. It's one more way that autism has changed our world. I can't just up and move to any place with a good school. I can't just choose to home school him as I would the other kids. I know he would still learn if I did, but forgive me I do need that break.

winter snow

I want to move, but don't know where to start. Where are your special ed programs for autistic kids? What is good/bad about them. Help me find an option in warmer weather. PLEASE, my toes are cold!

Autism Awareness Day

I keep trying to find the words to say what I am feeling and for once I am finding it very difficult. Rarely am I at a loss for words and never about something I am so passionate about. This... This is so different for me because it isn't just in my own backyard, it's inside of me. Autism is only a word, it doesn't have any REAL power , right?

The new numbers are 1 in 88. Those numbers are from 2008. The numbers themselves don't matter to me. The statistics don't really matter to me. Sammy is part of that number. He was diagnosed in 2007 at just over 3. He didn't speak, he didn't sing... he didn't even know me. He couldn't dress himself, feed himself,or play. He cried a lot, he was naked almost all the time and I would spend my days wondering how I messed my kid up so badly. I see that number and I see so much.

I  see that number and I see myself sitting in the neurologist's office and thinking I was about to hear that my child had ADHD and was just young for his age. I remember the numbing feeling that crept across my body followed by white hot sparks of lightening as he told us "Your Son Sammy has Autism, there is nothing you can do, ABA may help"

I see that number and I remember feeling so hopeless and lost. I remember the binder my friend Michelle gave me to help me keep track of the journey we were just beginning. I remember walking through the grocery store, feeling like I was on the battle field trying to figure out how to help my son and if his diet was a key. I remember sitting at the Fort crying and shaking being afraid to tell my friend that Sammy had autism, because I KNEW the doctors were wrong and feeling guilty because her son really did have autism. I remember the moments where I would be standing there trying so hard to catch my breath that  I couldn't even think. I felt like I was drowning all the time. I felt alone even in a crowded room.

Then I started You Leave Me Breadless. It has changed shape drastically in the past 4 years but through it I have found some of the most amazing people who "get it" I don't feel so alone anymore.

I see that number and I also see an amazing young man that makes me smile every day. A young boy with a sparkle in his eyes and penchant for mischief. A child learning to tell jokes. A child that loves me, knows me and the world around him. He looks at the world through very different glasses than I do but that is all just fine. I see a boy who lights my world up blue 365 days a year. He makes me cry with the sheer joy of watching him discover and feel the world around him in a way most people will never be lucky enough to. He lives life with a reckless wild abandon that I can only hope to muster under the best circumstances. I see him as one very amazing unique child that is just simply Sammy.

So yes, I am lighting it up blue (even my hair) and I am making the world aware. What I want most for this day, for my Sam I am... is not just the awareness that he has autism. I don't care about the label, it is after all just a word. I care that when the world hears that word that he is autistic they understand the REAL meaning behind it.  That AUTISM isn't the end. It doesn't change our children. It doesn't matter  what we call them really, it DOESN'T CHANGE THEM. It changes us. I hope and pray that the awareness days-months-years lead to people understand the sheer awesomeness that is our children. The sheer power behind who they are and our role as parents. Our kids are awesome. they make us laugh and cry just like everyone else. Yes it's hard and yes some days it sucks. Honestly, my kid is awesome and if Autism has a part in making him who he is, I can live with that.

feel free to check out these other bloggers this month. If you think there is someone I should add please send it along

Try Defying Gravity
Diary of A Mom
Mom-NOS
Susan Senator
Extreme Parenthood
Yeah,Good Times
Lost-and Tired
Flappinessis

In This Moment

Today we went to do our taxes and brought Sammy, Nate and Grace with us. Tyler and AJ were at work. The boys did well and so I was really pleased. The news was good as far as the taxes went so we decided to go for a treat. I needed to go to the walkin because my hand is really hurting.  I have it in a brace right now and for the last 4 weeks I have been unable to move it off and on. I can barely hold my phone most days lately. Well, the walk in was closed. We had told the boys we would take them for lunch after the doctor visit, but now there was no doctor to visit. We went to the bookstore and each child chose a book. They played in the castle and they just really enjoyed it.

Sammy struggles to read and even though he can he hates to do it. I was hoping that by finding him a book he liked he would want to read. He chose one (the Avengers super hero series)and we were on our way. 

As Daniel paid for the books Sam wandered and picked up a book about guns. It was a very technical book with diagrams and notes. He was awestruck and sat looking at each label and piece of the guns written. It probably wasn't a good idea to sit and let him read it, given how angry he can be. For that moment, he was just Sammy, with an interest in something that he wanted to see. I didn't want to make him obsess over it (and he likely would have, if I hadn't let him look). If it were any of my other children I would have pulled it open, sat beside them and checked it out. In my head guns don't always equal violence.It doesn't always have to be a bad thing. I would never own one simply because with a child like Sammy I couldn't guarantee it was safe. So I pulled open, sat beside him, and we read about the different calibers,types,makes and materials of all the weapons. I was bored but Sammy enjoyed it.

We took them for lunch and Sammy was awesome. Nate was the cutest little thing, ever! and Grace, well she is just all kinds of awesome! 

It was time to pick up the big kids and so we went. Tyler got in the car and Sammy told him "We had so much fun, we went to the store,we got booooks,we played in a castle and we got treats.We went out for lunch!" He had fun and it was worth working hard to stay in the moment. Too often I get stuck in the moments of sad and gloom because of the changes in our world. I get sad because things are just so different sometimes. I look ahead  and around and I miss the stuff right now. I miss it too often because of the fear and anxiety of the world around me and how things might happen. Today, I lived in the moment, where the good stuff is. I didn't miss it and that makes me smile

Not just a Number

The numbers don't really matter to me. i know that must sound horrible. I don't care if one in every 5 or one in every 500000 are affected by it. I just don't...because even one in a million shouldn't happen. I don't know what the current numbers are, I don't care. those numbers scare the crap out of me. Those numbers don't matter... because in my house those numbers are amazing kids!

They are NOT another statistic to make a point. They are NOT a disability, or a cause, or a puzzle. They are my babies.You can't pick them out of a line up. They don 't have a sign flashing above their head. they are simply my boys.

These are both faces of autism. Both amazing , loving, incredible, wonderful boys are on the spectrum ...somewhere

My boys are not just a number. While I may light it up blue at my house, please understand, everyday here is autism awareness day. We live it, we struggle through it. We drown in it and we rise with it. It is in every breath we take because it has always been part of who we are, who we were, and even who we will be someday. It changes the world inside our heads to make us fight a little harder, to love a little deeper, and smile a little brighter. My life and love of my children doesn't change simply because they are part of a statistic. they are not just a number, they too are the face of autism.

So absolutely light it up blue, donate,walk,work and love but know in the long run ; the numbers will never matter... the people do

Another One Rides The Bus

Sammy is impulsive. Super impulsive. I mean like middle of the sentence punches you for no reason because it crossed his mind kind of impulsive. We have an issue with this of course. I can't allow him to beat people up, or spit, or pee on the sidewalk, or strip in public. It has happened but we don't allow it to. For those of you with Special kids you get what I mean.

We are on warning 4-5 with the bus company. Usually, its 3 warnings and they are off the bus. It hasn't been said to me yet and I doubt it will right now.

Sam's team is awesome, I think I said it before. Even his teacher, that we weren't too sure about at the beginning of the year is getting most of the stuff. She's been very patient with Sammy and dear Lord has he given her a run for it this year.

At his team meeting a few weeks ago we talked about a bunch of stuff. Bus issues came up ( I brought them up) and we talked through ways to help. A front seat doesn't do much good because the other kids with "behavior issues" just sit next to him in the front as well. I wanted to have him use his noise cancelling headphones, but Ms. G made a great suggestion. Get him an something to listen to so he doesn't just stand out. The other kids will not pick on him for it and he can sit and be mellow on the bus. So I cleared and re programed my ipod. I double checked for questionable songs, and he takes it to school. When he gets there, his principle or aid take it from him and put it away safe. He gets it when it is time to go. SO far SO good. he seems to love and appreciate the music and it makes him happy happy to have it with him.

So far the bus driver is happy with his behavior as well. I just don't want to get any more notes from the bus company telling me he was "being annoying to others"

missing

just a warning this post is 100% irrational pity party. I apologize up front. you may want to skip this



As a mom it's my job to protect my babies. I can't seem to let go of the failure of it. I hear sirens and I  cant breath. I see an ambulance and I my heart races. I look at pictures of baby girl before and my heart just breaks into pieces. I just want to cry... but I can't. There are tears here and there, but nothing major.

My husband isn't over-reacting this way. It's just me.

before

I am so sorry. I feel like it's just one more failure, one more piece of this puzzle that I lost.It's just one more thing I can't make right, I can't control and I can't change. I can't take it back. I can't fix it. It's an endless loop in my head "damn it Annie, if you had taken her,if you hadn't just needed a minute. Why didn't you listen to the voice in your head that said PUT HER IN HER SEAT ?? then this would not have happened." That's all I can hear. I feel stupid feeling so sad. She's a rock star. She is doing so well I cant even put it into words. She doesn't pick or poke and she lets me cover it in medicine. It would be nice if she stopped picking up beads and trying  (and sometimes succeeding) to eat them.

I always said God didn't give me a girl because he knew I would screw it up. I would damage her. I laughed about it when boy number 4 was born. Look what happened, he gave me a girl and yup... I screwed it up.

after

I know it isn't logical or healthy or any of those good sort of emotions. It's been 12 days.  Shouldn't I be over this already? really? what the hell is wrong with me that I am still so stuck on this when no one else around me is. you can tell me it's the trauma of it or what have you but my husband was there too and he doesn't feel like this...

There is a tiny white line across her lip where it's starting to really heal. I can count each stitch on the outer layer of her skin. Tiny little dimples along the jagged bright pink line that no one can see in her pictures. It might as well be neon green in my eyes. All i see in it is the failure to protect my girl, the loss of what she was. Yet another hurdle she has to jump, like having me as her momma isn't going to suck enough, now she has a giant scar to remind her that momma didn't protect her.

My Broken Heart

My Broken Heart

Some of you may know that our dog bit the baby. It was horrible and brutal , there was blood everywhere. I am heartbroken and confused. I don’t know what to do.

My beautiful girl received over 40 stitches in her lip. Our Dog was quarantined. My family was heartbroken. It was an accident, the dog had a bone that smelled like another dog, he became possessive. We put him in his kennel, Sammy let him out, the baby accidentally got put down just a little too close by our oldest son. The dog felt threatened and snapped. Tyler saved the day and got the baby because he was right there. So it probably could have been worse. Regardless, it’s bad enough.

I feel like I have sacrificed one child for another. My sweet baby girl that lights up my days was hurt. I can’t even put my thoughts together completely. I just hurt so much. I still haven’t cried yet. I think I am still in survival mode and keeping busy figuring out what exactly to do about the dog. If this had been about anything other than food, I would feel differently. This dog has never shown any sort of aggression before. It’s random. If I lost it and beat the crap out of my husband I would hope he would forgive me and move on. I know it’s not the same. I know…

I know a lot of you won’t agree on this. I understand where your coming from and I hear you. It isn’t that simple. I love this dog, the kids love this dog. Sammy has thrived in more ways than I can express since we brought him home. He is family.

I can’t eat. I sleep in fits and starts, small spaces in between flashbacks and dreams. Sounds and smells of that night are still preventing me from eating. My stomach is in knots.  I can’t put her down. I feel like I am being chased by a lion. I am heartbroken… or maybe just broken.


joining up with Shell once again.

Blessings

I don't often write on a weekend, there is often just too much to do around here. Sunday's are usually really hard for Sammy, but with the sunshine and  slightly warmer weather, everyone is outside right now. We missed mass this morning because the car was being fixed, so we will go tonight. By then Sammy will already be dressed so it shouldn't be the drama it usually is. I may actually get to enjoy it tonight!

I am not writing for any of those reasons, but because I wanted you all to know how very very blessed I feel! I never would have imagined 4 years ago that Sammy would be able to touch so many lives. I get letters here and there from people who have been touched by his story. I get emails from moms that no longer feel so alone. I get asked for advice. Sammy inspires people through this blog. over 200 people are now reading almost every day according to my stats. I don't feel prepared for any of it, but regardless it's there.

Shannon AKA "my ponytail"

I wanted you all to know about the Autism 5K that my friend is doing. The team name is "For Sammy" take a look at this! Now, when I saw this I burst into tears. Not misty eyes little tears , but catch in your throat kind of tears. The ones you can't stop, can't fight, and can't forget. Shannon has helped us with Sammy's behavior for just about forever.Sammy loves her and called her "My Ponytail" for a long time. She is one of my very closest friends and one of the few I consider part of my village. I am blessed beyond measure by her. I know that she is ALWAYS in my corner. I know she loves Sammy. So she names this group "For Sammy" and the proceeds are going to autism research.

I don't think I have ever felt so lucky,loved and grateful as I do right now. Thank you Shannon, from Sammy, our family, and every child this will help. It is such a BIG DEAL.

I am blessed to have you in my life.

You Just Don't Know

You don't know what you don't know.

That sentence always bugged me. It's true, yes, but it sucks. Sometimes ignorance is really bliss.

Watching Grace grow and develop has opened my eyes to a lot of things. Scary dark unhappy things and tons of super shiny sparkly sort of things.

Last night at the table she was covering her eyes with her hands, giggling and playing peek-a-boo. The look on her face of sheer joy and excitement made me so happy I could barely contain myself. There was something else there, a look, a presence. She looked over to her brothers with anticipation and a glint of "Am I wonderful? Is this right? Does this make you happy?" I am probably reading far too much into this and it was simply just Grace being silly, but something occurred to me in that moment.

 Sammy never did any of this.

I am going to let that sentence hang for a moment all by itself. That moment's realization came like a punch in the stomach. It literally sucked the wind from me. I never noticed if Nate did it because I was just too busy slaying dragons. I was too busy fighting battles I couldn't win and I missed it with Nate. I missed a lot with Tyler and AJ too. I was in a terrible place back then and busy simply fighting for my life and sanity. It's hard to see the sparkle when there isn't any sunlight. I missed so much, even though I was right there.

I was standing.right.there.

I won't miss it this time. I drink this girl in like a cool glass of water on a hot summer day. I watch her and smell her and breath her in. Her breath smells of ice cream. How amazing is that? She smells like ice cream! She smiles and claps and looks for approval. She stands and calls my name. She favors me. She wants to be near me, fingers entwined in my hair and her thumb in her mouth. Oh that thumb, she loves it, it is her best friend. She has opened my eyes to all that is and I am grateful. I am watching around me for things I may never have noticed. I am delighting in simple things I didn't even know I was missing. Because I didn't know,what I didn't know.

I watched Sammy last night though those same glasses I watch Gracie through.  He was sitting on the couch in his buzz lightyear pajamas that are a year too short. They are comfy and he likes that they don't touch his ankles. He wears no shirt, and his soft fluffy head is a mess of hair going every which way. I walk over to breath him in for just a moment before leaving for work. I kiss his feather soft hair and whisper that I love him. He looks up and tells me he hates is homework and all I can do is smile. That is Sammy, uniquely him in the lilt and cadence of his voice. I smell him again. Sammy also has a scent all his own, it's always the same, even after a bath. He looks up, hooks an arm around my neck and says "I love you mommy...like a banana" and I know, he means it. He smiles his Sammy smile, with his hanging loose front tooth and big blueberry eyes. He smells my hair and nuzzles my cheek. He lets go and just like that "POOF" he's back in his world with his pencil spinning on his fingers.
If I hadn't taken that time to stop and watch him. to absorb him. I would have missed that.

But I wouldn't know, what I don't know...

Transitions

Tyler's school has a new SPED director. She seems on the ball and forward thinking. She sent me a link for a transition fair at Taunton High, so I went.

I got a ton of amazing information on what to do for Tyler when it comes to college. I know he seems like he will be fine, but I don't want to assume. I want to set him up for real success. He is qulified for the Autism Division through DDS, and that will alow him to get services after high school. There are services for kids like him that will help him start his own business, get through college, and prepare him for life on his own.  I am suddenly even more excited about Tyler's future. 

There was a time in 7th grade when he was failing everything , and a time in 3rd grade, when I couldn't understand why it was so hard for him. I was so frustrated and scared for him. I was worried he wouldn't be ok. He has grown into such an amazing,strong, thoughtful young man. He is so good at wrestling. He is amazing when it comes to trees.

I found out there are a ton of college services at the local college. I have so much information to go through my head is just spinning! 

I am That Mom Too

 I read THIS at Things I Can't Say I sat for a few minutes before I could even respond. You see it is so hard to type a reply when you have tears in your eyes.

I am that mom too, and  I know it.

I use to be the one who thought "I would never let my child speak that way"  I think I may have patted myself on the back a few times thinking I was good at this parenting thing. Then along came Sammy and he changed the game.

I realize now I have no clue what I am doing.

Sammy can be (and often is) the most amazing loving sweet child. He leans on me and kisses me without warning. He loves me, I know he does. When Sammy gets mad all bets are off. I have been called vile, horrible things. Words I have discovered were learned when the older child put music on my iPod. It takes everything I have to not loose it in those moments, because lets be real here, Sam is a child with such a limit on his understanding. I have begun telling him that it hurts my feelings. He seems so shocked by that every time.

Everyday at least once, he tells me he hates me, that I am a moron. He wants a new mommy, I am a bi***. People stare, they comment, they intervene.
Guess what ? I know you are trying to be helpful. I know you mean well. Please, You aren't helping. If you see me or another mom like me, don't offer advice, offer chocolate or wine. If you aren't going to give me a vacation for free then please don't give me that look that says "poor you". Do not tell me I need to spank him, scold him, call the police, parent better, parent more, parent less,jump up and down , spit wooden nickles or say prayers in Latin. The truth is It isn't me, it's him.
I can handle it. I handle it every day, before you and after you. You have no idea what I deal with on a daily basis. Be grateful the child has pants on. A year ago that may have not been the case. This too shall pass and we will be on to something else.

Anxiously

I had to drive to work tonight. It was snowing. I hate driving in the snow. I know what your thinking "Why the hell does she live in New England?"
My family is here. I grew up here. the anxiety over the snow just started the last few years or so. It has gotten really bad lately. I find myself anxious or on edge a lot more than normal. Tonight was different.

The snow was unexpected. I thought it was done. I didn't go into work yesterday because I didn't want to get stuck up in Boston an hour from home in 6-8 inches of snow. Now to be fair Boston itself doesn't have a ton of snow, but it was night time and dark and snowing really bad.

I felt like I couldn't feel my fingers. I couldn't catch my breath. I wanted to throw up.I was crying and praying and begging God to not take me from my babies. I was sure if the snow didn't kill me the anxiety would. I wanted to pull over on the highway but I was closer to work then home at that point. I was terrified, my entire being was shaking. I kept screaming at the snow as it came down, tears streaming down my face. I found myself flapping my hand so much like Sammy does. In that moment everything froze.

OH MY GOD IS THIS HOW HE FEELS EVERY DAY??

I get it now. Sort of. I don't think I will ever be able to wrap my head around everything he feels. I get the anxiety. I have had panic attacks before, but this was different. this was like slamming my face into a brick wall. I couldn't stop it, I had to keep going even though every second hurt more. There was no way to get free from it, there was no way to make it better other than getting to the end of my trip. My poor boy , feeling that way every day , getting dressed and going to school. I got here and I shook so bad I couldn't even stand up! My poor sweet boy, I have lost my temper when he was melting down before. I have snapped and yelled. My God, I am so sorry. If anyone had yelled at me during that, I would have completely fallen apart.

If that is how he feels all the time, I think it may be time to consider medication. Maybe for us both.

There is no I in Team

There is no I in Team ~ unless you talk about the IEP team, then of course you do find an I, but it's not part of the word team, just part of the phrase.

I feel blessed. seriously amazingly blessed to have the team we do for Sammy.

Sammy has been struggling for a few weeks...months at school. It has gotten steadily worse to a point where he was refusing to do his school work, getting sent to see the principle, bringing home extra work he didn't finish and so forth. Nothing was working. Nothing we tried seemed to help. His principle even called during vacation week hoping we could figure something out before we went back this past Monday.

 We included a friend of mine that works with kids like Sammy , his teacher, the principle and myself on an email. We considered having him stay after school to finish, but given the fact that Sammy asks me every day to pick him up that probably wasn't a great idea.

Here is what we all came up with. If he completes his work during the afternoon he get's video game time at home. 30minutes right after school to play his beloved star wars lego game. If he does not complete his 3 things then he does not get his video game time right after school and looses his choice for the SWL(Star Wars Lego) game for his evening time . He can choose his other games for that time. His principle came up with an awesome visual for him and we are not 3 for 3.

I love our team. I really feel like I am heard. More importantly I feel like Sammy has a voice for what he needs. I really feel so blessed.