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.

Touch

I am frustrated. I just watched the commercial for the show Touch. I obviously have not watched it but from the previews it looks to be about a child with autism. Do they come out and say it, I don't know. You know what I don't care either.

The world of autism needs more understanding, more awareness, more visibility. We need more houses lit up blue. We need the White House to light it up blue. We need to get to a place where people don't say stupid things to moms like us.

What we don't need is one more stereotype out there. We don't need one more show where the kid reads minds, figures out the meaning of life, or makes the world turn  the opposite direction on it's axis. Why aren't our kids good enough just the way they are?

My son struggles with math, and reading, and just about every other damn thing he encounters. I know there are some people out there who can do amazing things, but they are few and far between.
Why do we need to perpetuate the idea that all of our kids must be like Rain Man. What is it about society that thinks a kid like Sammy can't be awesome just because he is Sammy? He is awesome. He is wonderfully and fearfully made. It is everything about it. Autism is only part of who he is.

He is a 7 year old boy, who loves bagels. He hates double digit math and spelling. He loves Star Wars. He doesn't like to go to bed or get wet. He loves video games and his dog. He loves his sister and his brothers. He gives his mom butterfly kisses and he believes in God.

He doesn't count cards. He doesn't know every digit of Pi. He doesn't add numbers in the blink of an eye. He doesn't memorize birthdays,weather patterns, or locations on a map. He doesn't even know what latitude and longitude are. He cannot build boats with his eyes closed or speak Latin...

He is however an awesome kid and the last thing the Autism world needs is another Stereotype. Why can't we simply celebrate who are children are? Both our children with autism and without...deserve that much...don't they?

Silence Returns

Both the dog and the baby are having major issues with all the kids being back at school this week. The baby keeps yelling "TYLER...AJ...BOYS"  over and over again. The the poor dog went into Sammy's room with his toy all excited only to see Sammy not there. He went from room to room in the house whimpering and then settled on Sammy's bed.

Sammy has been dealing with anxiety lately. every night and every morning we have the same set of questions. He asks them over and over and over and it stresses me out to see him so stressed.
"is it morning time?"
"how long till morning time?"
"do I have school?"
"can I stay home?"
"can you dismiss me?"
"will you pick me up?"
"will it rain tomorrow?"
 It starts about 8pm at night and continues till he falls asleep. he then  comes in my room at night and asks as well if he wakes up. He then asks when I wake him in the morning again. Kids like Sammy struggle with stuff like this all the time. It can be frustrating for us, but I can only assume even more frustrating for them. Here is a great video showing a kid kind of like Sammy with avoidance behaviors and similar issues to Sammy.

Blog Hop

I have never done a blog hop before but thought I would try it just this once. Like with everything I went and found a bunch of hops so check out those in my sidebar too. So Many Great Blogs
I was also thinking that maybe I should give you all some suggestions. I am GratefulCuddle BugBig Girls Don't CryCoffee and a Side of SunshineThrough My EyesWords For SammyMy Heart Monday

Sammy awesome

Am I Alone?

 I feel guilty.

 Because when we are out sometimes I just wish he could "act normal" it's not fair to say but it sucks anyway. I feel terrible thinking that way. I hate having to hold him when he freaks out in the middle of a store. I hate the looks people give us when he starts acting odd in public. People see this "big" family and just think I can't control them.  I worry so much about what other people think, that sometimes I forget that what matters most is what my FAMILY thinks.

I feel guilty that sometimes I wish people could SEE that he has a disability, because he looks like every other kid around him (just even more handsome). I hate the looks and the comments I get simply because he looks "just fine"

In the end I am glad it's the way it is and nothing can make me love him more or less. I am blessed and I know it could be so much worse but for right now. I feel guilty about all of this. I feel like being sad /guilty/frustrated means I am a terrible mom.I shouldn't have these feelings right? Am I alone

Ash Wednesday

We went to church  for ashes. As usual as we were leaving for church Sammy threw a fit. If he knows we are going to church he flips out. I don't know why.

I spoke with a priest this past weekend about how we sometimes miss mass because it's easier than the fight. He asked if Sammy had made his First Communion. When I told him that No we didn't even enroll him in CCD because he doesn't have enough understanding of the subject. Not to mention that he can hardly sit still anyway. He suggested that We think about whether we are asking the impossible for Sammy. To wait for him to "understand" when he might never really get it seemed unfair to this particular priest. He suggested that Sammy is exactly how the good Lord wants all of us. Simple and loving. It was interesting to think about.

Last Night was tough sitting thorough mass with him. We belong to a fantastic church with amazing people. Most of the people there know us and know Sammy so I don't really have to worry. However on holidays and days like Ash Wednesday people who don't normally come to church..well.. come to church. Behind us sat an older couple and in front of us sat an older couple. Sammy was all over the place, could not sit still, tapping his feet and flitting his fingers up in the air. He can't help it, but it can be embarrassing when people are frustrated with him. Which boils down to my failings. I worried about the people behind me in church  were thinking about me more than what was frustrating my boy. Why do we do that to ourselves? The people behind us sighed heavily and shifted uncomfortable every time Sammy made a noise.

The people in front of us, another older couple, were very sweet. The older woman looked at me in a very loving and sympathetic way saying " you have your hands full dear"  I just nodded because at that moment it had hit me that this is what my life will always be like  then she said something that I never expected "My nephew is like that too" she may have said she was praying for me and that it would be ok but I couldn't think because of the tears in my eyes. She was being compassionate and THAT is the true idea of what the Lord wants from us on a daily basis. That woman displayed God's grace in an instant. How wonderful it was for God to touch my life through her. Thank you Lord

The other side of that was the internal struggle, the idea that it isn't just me. Its been over 4 years since we were handed this diagnosis and I still question if they were wrong. I still have issues with denial I guess.  The idea that she could tell he wasn't just another poorly behaved child hit me like a ton of bricks. It was both validating and painful at the same time.

I am Grateful

Top Ten Tuesday

                                                                  I AM GRATEFUL

 1. I am grateful for my house and all the wonderful space it provides us. It is a place I can sit back relax and call my own. A space that is like a castle, where no idiots can get inside. It's a great place to cuddle up and enjoy the sunshine.

2. I can cook. I love to cook. I am really good at it. I do it intuitively most of the time. I will read a recipe and mess with it.

3. I love our dog. He calms all of us, loves to be loved, and likes to snuggle. He is so patient and loving. He defends us against the perils of blankets
and sitting alone.

4. There is food in my house to eat. I can make almost anything and no one complains.

5. I have an amazing belief and faith in God. Without it I would not be able to get out of bed in the morning.  I can only praise HIM for my sanity and ability to keep doing this!

6. My children. Every one of them is truly a blessing. Every moment of every day at least one of them makes me smile, sigh in relief, or laugh out loud.

7. Sammy tells me he loves me ...like a banana! One of the few things I asked God for when Sammy was diagnosed with autism is that I wanted to hear I love you from him. Not just the words but as if he truly ment it. I wanted those words to come from his heart and not just a wrote phrase that makes mommy happy. there are still times he says it as though it means nothing, but when he says

 "I love you...LIKE AN BANANA" 

 I know then he really does.

8. My husband. He is a blessing. We all have our moments and I am not an easy person to live with. He takes it all in stride and just loves my total crazy. He holds my hand when I am scared, rubs my back when I'm tired and holds my hair when I puke. If that isn't love then what is? 

9. My Friends and family. I am so blessed with an amazing faith community. People like Michelle over at Normal Chaos,Who just rocks my socks. She is one of those people you know you can always go to. Linda, Mary, Elizabeth, Sue, Beth, and  our entire group over at SFX. I wish I could name them all but I know I would forget some. Bob and Michelle have been an inspiration to us as well they are the ones I go to when I need the right answer. Not just the world's answer but HIS answer. Bob has an enormous amount of theological knowledge, it would make you head spin. People like Caroline who have encouraged me to try now things and has been a great support. My mom who brings me bagels and watches the boys when I need her. My dad who loves me to death. My father that I have begun to renew my relationship with.  My MMIL who loves me even if I am a little overbearing,opinionated and pissy sometimes and she never minds that my house is a mess.

10. My online friends. I know it sounds crazy and maybe silly to some of you but my other blogger friends are a wealth of knowledge, inspiration, perspective,humor and love. People like Evin at Food Good Laundry bad, MissZ (who also takes great pics of my girl) all of my MDC spring moms,Ellen at Love that Max, Jess at Diary of a Mom just to name a few of the people I check out a bunch

Under Siege

I feel out of sorts in my own skin. Sammy is still struggling at school and I am worried that if we can't figure this out he will stop moving forward, academically. The next door neighbor told me he got written up on the bus again. I now have to call the company tomorrow and figure this out. This will be his second offense. He has been angry all weekend and even at one point told me "Shut up you stupid B****" while we were leaving for church. We don't EVER talk like that here, we don't use those kinds of words. He does not watch cable or play video games I haven't approved. I just don't understand where this comes from. My instinct at the moment was to beat him senseless, but Thankfully I used self control instead. I was so angry. He knows what he is saying, he knows it's hurtful and he knows it will make me cry. So what can I do?

Our neighbor, the little girl, comes over everyday to play. I have been noticing lately that she really ends up playing with Nathaniel more than Samuel. It makes me sad to watch him without a place.

He went to work with Dan on Sunday and called me to say Hi. I loved every second of our conversation but it occurred to me that he sounds different. Different in his cadence and lilt than any of the others did on the phone, It stole my breath. A burning pin point of light smashed into my skull at a thousand miles an hour. Like being blindsided by a mac truck or being swarmed by bees. It was something I didn't expect.How could I forget? As Sam gets older I see these finite things that remind me he has autism and while some I expect to find, others still catch me off guard. Like the cadence of his words on the phone.

Lightening Speed

We woke up late today with just under 20 minutes to get ready for school. Normally this would result in total absolute chaos and the wailing and gnashing of teeth. It would end with me throwing Sammy over my shoulder and sitting him in his bus seat. It never ends well when we wake up late. The pressure of moving and get it done fast is usually too much for Sammy even on a good day. We have never ever had a good morning when being woken up late. Chance once again saved the day. jumping up as usual onto Sammy's bed licking him and pulling off the covers. I told Sammy we had to move quick. He looked at me and said "is it late" when I responded yes I expected him to start flapping and squeaking. I noticed my hands had already formed fists at my side ,clenched and stressed for what was to come. Nope ...Nothing "ok, can I wear this, will kids laugh at me?" I told him his shirt was great and he got up changed his pants,put on his socks and boots and ate his breakfast. Chance did not leave his side the entire time. Sammy at his oatmeal, made a choice for his lunch bag and got his coat on to go. No issue...no argument...nothing! Chance followed him to the fence(he hops the back fence to go to the bus with our neighbor). Chance watched him jump the fence, and waited until Sammy was in the neighbors house. He came back in and went for a nap. Mornings like this I forget. Mornings like this make me smile, make me trust,make me believe that it all can be ok. There may be no magic bullet,

there may be no answers, but for today, I got more than I ever thought I would have.

Top Ten crazy things about me?

I found this today over at Jammie Girl . It's a top ten list. She did ten things she is superstitious about, I will do something along the same lines.

My 10 Weird- O crazy things I think about on a daily basis. I don't know If I can call them superstitious or not.Maybe more top ten ridiculous compulsions?

1. I never ever EVER eat the last bite of anything. I can't make myself do it. My grandmother once said "It's the last bite that makes you fat" She had meant it as a good thing since I was always soo itty bitty. I am the one who took that too far. I have a dog now so someone always gets my last bite. It's so bad that if my husband and I share something he waits to finish his so that he eats the last bite. Isn't he awesome!

2. I cannot drive by a trash bag without worrying that there may be a body inside. I have been known to even stop and check... hey don't judge me!

3. I cannot drink my coffee without a spoon in it For fear that something terrible may happen. I don't know, I never said these things made sense!

4. I also NEVER drink from plastic. It skeeves me out. I feel like bacteria hides in the little spaces between the plastic...ewwww. yuck

5. If someone touches their nose I have to touch my own. I am always afraid that  it means I have something on my nose and no one wants to say anything.

6. I count everything in sets.  I am always worried I miscounted something so I recount in sets of two. or four... and every so often ten.

7. Up until recently I could not go to the mall because the floor is in different colors and it was a pain in the ass walking on only one color.

8. I don't eat certain foods because they taste like glass(orange juice) or have other weird sensory attributes.

9. The sound of socks on the carpet , zerberts, and cotton balls rubbing together all make me vomit. I can't help it but it.makes.me.nuts!

10.  I use to iron, fold, roll, and tape my underwear. Now I just fold and roll it. It's an improvement all be it a small one. I also cannot stand wrinkles and have been known to vomit if something is wrinkled. At the very very least I will cry over them.

whats your top ten today

flash backs

between 3 and 4


4.5


almost 5
 
almost 6


just over 6



and 7

My Heart Monday

Our run of happy mornings since getting Chance have ended. This morning was rough to start. He did settle down after I put his clothes on. It wasn't nearly as bad as it had been before but were just over one week in.

I try to make his mornings as easy as possible, but he really hates going to school. He fights it all the time. He begs me to home school him. I can't, for both of us , that isn't an option.

It has me thinking, what is it about school that he hates so much? Is it the work? Is it the bus ride? Is it the noise? Is it the smell of the classroom? Is it something I haven't thought of?

Having autism can be pretty tricky for some kids. It's like being a MAC in a PC world. I am sure there are so many little things about the world around him that make no sense. I can put money on it. I can't possibly have thought of everything.

What is it that I am missing? He seems so sad each day he realizes it is a school day. It's like getting up each morning and hating your job, but knowing you have no choice. It breaks my heart to see him struggle like this, at the same time I get it. It's even tougher since I can't actually DO anything about it! I am powerless and frustrated. I feel a lot like Sammy I guess. Damn it why does this have to be so hard?

Cuddle Bug

I have been crabbing lately about Sammy and his disconnecting from us. Last night I decided to push the issue a bit. If he doesn't want to be part of my world I will put myself in his.

Last night Daniel and I had to run to the store. We needed milk and yogurt and cheese. We planned on leaving the older kids in charge of Sammy and taking Grace with us. Nate was fast asleep.  Sammy popped up off the couch and told us "I am coming too" and quickly got dressed. OK! how could I say no. He came to the store, he pushed the cart  and helped me put things in. I tried to engage him with each thing. I prompted him to smell fruit, we weighed broccoli, we picked out GF waffles. He only wandered a little a few times and I was able to redirect him back over to us. I had fun with him. Daniel even taught him about scratch tickets in the vending machine (ohh the things men teach their children).

He was awake and in my bed when I got upstairs playing on Daniel's phone. I put the phone away and asked him to cuddle. He was ok with it but said he was not going to sleep. What happened next was nothing short of magically and exactly what we BOTH needed!

He wrapped his arms around my head and played with my hair. He snuggled in close and told me he loved me... like a banana! he kissed my eyebrows and fell asleep cuddled up with me.

Thank you Lord I needed this so much.


This morning however right back to where we were. I will take those moments and hold on to them. It's the only thing getting me through today.

This Moment

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

If you're inspired to do the same, leave a link to your 'moment' in the comments for all to find and see. 

started by SouleMama

Loosing Ground

Sammy's school called home, to be more exact, his principle called. He has been refusing to work at school, he has been refusing to work at home. He seems sad all the time. I have had a really hard time connecting with him like I normally do.

Sammy also threatened to kill himself at school. She said that since Christmas break he hasn't been himself.  He hasn't been able to connect on any level lately. The dog seems to be helping be more joyful at home and seems to be helping him connect to the dog, but not to anyone or anything else. I am at a loss. I don't really know how to help him.

The only thing I can think of is that the death of his "buddy" next door has really wounded him. I knew he was sad but I didn't know it was this bad. He is overwhelmed  with his school work.

He is good at math. He knows his math facts, he can do them pretty quickly. They just started 2 digit addition and he freaks out every time he sees the papers. They are now trying to give him one problem at a time on a white board thinking it may be a figure ground issue. I just hope we figure out something that works for him.

I miss happy Sammy. I miss his smile. Please Lord, help us find a way back to the sunshine.

statistics, stress, hope, and inspiration

I don't FEEL like writing today. I don't want to, but I will anyway.

The stress of having a child with special needs is supposed to increase the risk of divorce. So many studies now say that the 80% divorce rate is just bunk and nothing more than fear and poorly preformed studies. Regardless of the outcome of studies, percentages, or figures one thing is absolutely true. Parents of kids with special needs, multiples, and medically fragile or sick kids have more stress. It's not a pissing contest, it's just fact. that added stress makes already difficult dynamics of raising children like navigating a war zone. Blow-ups happen, it's like a blister that is bound to pop and ooze. No one can do it all the time and every so often, people loose control.

What happens after those moments is what makes or breaks things. Decisions and kind words go a long way. Sometimes, an outsider may be necessary to facilitate the healing needed for the family unit. One person can't do it all in even the best of circumstances, 2 people can even when it's hard.

So how do you handle the stress of having a child who just needs MORE? How do you let go? Do you Ever have meltdowns? What do you say or do for your loved ones, when you go too far? Is I am Sorry enough?

I know I can be a loose cannon some days. I don't imagine I am very easy to live with, but I try really hard to get it all right. I am learning to let go. I am learning to trust in the Lord for my mental health. I am getting help. Reading, knitting, and exercise all seem to help me feel better. I also love to bake, and sometimes I just write. Music and prayer and deep meditation help me so much but peace is often hard to come by in a house with 5 kids.

I'll leave with you with this thought... we were MADE to be COURAGEOUS... are you?

Puppy Love

It hasn't even been a week yet but Sammy is in love. This is Chance. He was surrendered by my brothers friend. He is housebroken and behaves pretty well. He is a BIG dog. He looks my four year old in the eye. He thinks my bed is his too and follows Sammy like..well a puppy. We don't think he is more than 2 years old.

He started out with such a sad life. He was kept in a crate for a long time and was an absolute mess. He was over 6 months old when he learned to walk. He was neglected and who knows what else. He was then adopted by my brother's friend. He took care of him well enough but just couldn't keep him or afford to feed him. So, Chance was brought to my mom's and then here. He is such a sweet dog. very love starved and in need of constant reassurance.

Every time Sam gets into trouble he takes the dog upstairs with him, so he doesn't even fight it anymore. Every day since Chance came into our lives he has gotten up and gotten dressed after being woken by the dog. I hope and pray this isn't like other things that quickly fade away. I hope having Chance continues to be as awesome as it has been this week!

Big Girls Don't Cry

Something is wrong with me. I am not someone that cries. Lately though, I cry at everything. I drop something tears, look in the mirror,tears... you name it , tears!

Perhaps it is the stress of my world spinning just a little too fast perhaps it's just my inability to cope with the day to day. So many people live lives worse than mine and yet here I sit,crying. I can't help it lately. I can't breath. It isn't even the autism that is making it the issue. It's Tyler's surgery and my flooded kitchen, and my messy house, and my lack of funds. I feel like  I can't breath. I feel like I am standing on jello trying to balance a peanut on my nose. I am tired.

Perhaps the years of  dealing with Sammy have just become so heavy that I can no longer fight it. I have been weakened like the underpinnings of an antique farm house placed on the edge of the ocean. Autism is my ocean and apparently not only can I not swim it but I also cannot build beside it.

I am constantly anxious. My heart will randomly begin beating in a fight or flight response to nothing in the room. Quiet makes me uneasy, noise makes me uneasy, I make MYSELF uneasy. I am cranky and judgmental with everyone. I snapped at my husband more times in the last few weeks than I have in the last 10 years. I am frustrated and sad and anxious all the time. I feel muddled and sad. Did I mention I feel sad?  I know the winter time is so hard because of the lack of light. I wish I could hibernate.

I just can't get myself out of this funk.

I think I need help. I am ashamed to admit I NEED help. I don't know where to start I don't know where to turn and I am embarrassed by it. I pride myself on being stoic and tough. I grew up being told that I was melodramatic and since have made every attempt to not be so "melodramatic" for fear that I would be made fun of . It's funny how sometimes the littlest things stick with you isn't it.I don't often show emotions to anyone, unless you count anger. That one I have no issue with  *sigh*

This is so hard to admit to anyone that can even make a difference, so I put it here. I don't really know what else to do. I don't know where to start. I miss being happy and feeling in control. I hate that I keep crying over stupid things that make no sense.  I feel like I am underwater. I can't breath.

I have everything in the world to be happy about. I have a great house, a wonderful husband, an incredible family, beautiful kids,smart kids, compassionate kids. I have food in the fridge and now a wonderful dog(more about that later)

So where do I start?

Life Without Parole

Daniel and I were headed off to Cohasset for a tournament just a few weeks ago. We drove through an area I knew like the back of my hand. I had driven the road every weekday for 2.5 years. I sat in the passenger side staring out the window and Daniel asked " brings back memories doesn't it?" The moment he said it I suddenly couldn't breath. I began crying. Dan got it and softly asked "It's a reminder of the cell your in?"

yes

My life was so different then, not better mind you, just different. It was life before Sammy. I cannot say life before autism since my oldest has Aspergers. I just never worried about Tyler the way I worry about Sammy. I always felt Tyler would be just fine. I was right, he is doing so well.

My life then was only 2 children. I was in and out of court with my ex-husband, dealing with craziness of people on that side and trying to repair my life. I was sleeping on a couch in the house of a friend, while her boyfriend moved in and payed nothing. My children were cramped in a tiny bedroom with 2 other kids. I had no money. I had nothing really. I moved to an attic apartment in my Aunt's house and my boys loved it there. My children and my boyfriend(now my husband) couldn't be in the same room thanks to a weird court order. My boyfriend and I would sit together in the driveway after the children went to sleep every day. I was lost and without direction. I was discovering who my true friends were and who was just along for the ride. I was unstable, unmovable and far too stoic most days. I felt like I constantly had to watch over my shoulder. That was the cell I was in those days. That was my prison, but at least I knew I had a release date. Even if I didn't know when, I knew it wouldn't last forever.

Now, it's a different cell, with a different warden. I have no release date. I have a peace now though. I feel like I am where I should be. How far my life has come. It's like the pendulum swung to far the other way. My family is a a blessing and I love them all. This life now is better, but it's harder. There is more pressure to preform, more pressure to get it right. Everyone in the world knows how hard divorce and custody can be. The same can't be said for autism. I feel more isolated. I feel more as though every day I am under attack. Which isn't so different from where I was then but now it's a 7 year old child and not a crazy ex.  I wake up every day uncertain of how much opposition I will meet. I can't breath, it's like going into battle. I guess I have always been inside a cell, I just switched wardens. Luckily I really love this warden!

I guess the difference is now, I have life without parole?

Follow up for Amelia

Parents: Transplant for disabled girl now a possibility at CHOP | Philadelphia Inquirer | 01/31/2012:


'via Blog this'


Some of you may have read my post a while back about the little girl who was denied a transplant based on her  developmental disability. The doctor they met with felt that she should not have a transplant and therefor would not recommend the transplant to the board. 


What followed was an incredible outcry from the  special needs community. The hastag #TeamAmelia popped up and people began posting. Sunday Stilwell created a petition over at change.org and over 35,000 poeople have signed it.


The hospital has met with the parents and has agreed to look into it further. check out the article. It gives me hope for little Miss Amelia.

quiet

My mom took Sam and Nate last night. We had planned this for a week so that we could go up to the vocational tournaments this weekend. We obviously aren't going now that Tyler has been hurt and is out for the season. He is thankfully feeling a little better than he was on Wednesday when it happened. But it's just Grace, AJ and Tyler home with us right now and it is so quiet.

It's weird, I feel guilty enjoying the quiet. I have a long list of things I want to get done before they come home tonight. Laundry and vacuuming, reorganizing the playroom and the basement. So many things I want to do, but instead  I am drinking my coffee and writing. I am relaxing. It feels almost sinful to be chilling out when there is so much to do.

Today is my oxygen mask. Today it's about me. Today I get a break from the pull of what autism has done to this family. I don't have to worry about how I say things. Today I can breath. It's about damn time , don't you think?

Wonderful Night

It's chaotic here right now with Tyler being injured. Sammy was with us yesterday at the hospital and got really upset when Tyler cried out because of the pain. So you can imagine my surprise when time for home work came and he actually did it!

It was 10 sentences and both Daniel and I groaned figuring it would be a big fight. We were prepared to scribe if need be but had him start anyway.

1. I buy 10 pesisuv cholit.
2. I sat by my frendonthe bus.
3. I threw a Big fat ceachboll.
4. I went through the Porck.
5. I went on the plane.
6. I ate Plain yogrte .( he drew an arrow from the letter e to the letter o to say that it should have gone there)
7. I write a Big letrto my mommy and mu DADDy.
8. I digda Heooghole in my back yord.
9. I ate the whole intrtire Kack.

he skipped one but that is fine. I am so really proud of him!
Can you make out what he wrote?

All is well

I am so blessed. My boy AJ is OK. We will wait and see with the lump on his rib. It doesn't look like anything that needs immediate attention. The ribs grow along the front side of the rib where they go from solidified bone to cartilage. The lump is directly on that growth plate which is not terribly uncommon when kids like AJ hit a spurt. It's just taking his bones a little longer to catch up.

His back is more complicated. He doesn't qualify for a dx of scoliosis since the curves in his spine are not severe enough. However he does have an issue with his spine that needs attention. PT and exercise for the next 3 months and then a recheck.

I feel blessed

Prayers Wanted

There is so much I could be blogging about with Sammy.
His sudden paralyzing fear of the stairs while wearing socks.
The extreme refusal to do anything difficult.
His request for a day off or early dismissal every.single.day.
His obsession with Star Wars Lego (which I am now addicted to as well).

AJ rocking the "hawk" at 8

 None of those things really matter today, because today isn't about him. My son AJ noticed a lump in his chest a while back. we didn't think anything of it. We did show it to the doctor at his physical and they sent us for an ultrasound. The ultrasound raised red flags. We know now it isn't vascular and it isn't soft tissue. We know it's attached to his actual rib and it does not show up on X-ray. We don't know what it is or why it's there. The pediatrician  has referred us to Boston Children's Hospital for a surgery consult. I am a nervous wreck. The doctor did say that he doesn't "think" it's cancer, that it "probably" is something benign, but that we really should err on the side of caution and check it out. That.scares.me.
AJ is also being seen by the spine and scoliosis clinic. His thoracic spine has a visible curve to the right shoulder. His back always hurts him, poor kid.

AJ at the soccer banquet at 13

I guess my fear is that after all this boy has been through in his life. I keep thinking about all the things he fought through and survived,  the times he has shocked doctors with quick recoveries, the times when the doctors couldn't quite understand how or why he recovered, and wondering if our luck is going to run out. Has he played his hand too well. No one wins 100% of the time right? What if what if what if...

I would like to believe that just having a child with special needs changes the odds for my family. That lightening can only strike so many times. I know that isn't true. I see it in my circle all the time. I KNOW what can happen. Just because our family has one cross to bear doesn't mean we wont be handed another. In fact it means exactly bubkis. It means nothing. So I am scared. I don't know what they will say today. The logical part of me says it's fine, it's nothing...but my stomach is still in knots.

So if you have a second say a quick prayer for AJ and if you don't pray then send us some good energy or whatever. It's all a plus really

How Exciting.

My very first spam comment. how wonderful. I feel like I have finally arrived

To Whom it Does not Concern

To you~
   You may not agree and you may not understand, but you also do not live this life. Your words play on every insecurity I have as a mother of a child like Sammy. But understand my drear. I don't make this happen, I do not make this up and I don't wish this on anyone.

Do you understand what Autism is? Do understand that nothing I do makes this happen. I didn't teach him not to talk until he was over 4. I didn't teach him to flap his hands and walk on his toes. I didn't teach him to wake at 3 am and scream over the pajamas he was wearing. By the way Sir he still does that today. Sometimes he gets so frustrated that he cannot access the words he has, so he just stands there. Screaming. He sometimes gets so frustrated and angry that he hurts himself. As a mother you do everything you can to protect your child from being hurt by anyone...what do I do then when the person hurting my child...is my child? Do you really think I create this? Do you really think I want my sweet angel boy to live like this?

Do you have any idea what it's like to live a day in my shoes? I wake at 3 am to fight with a child about pajamas or video games.I still have to physically dress my 7 year old child. I still have to wipe him after he goes to the bathroom. Am I babying him? Maybe, but it beats the meltdowns that spill over to derail the entire house. He screams at the top of the stairs because he is afraid they might be wet. He cries if it rains or snows and refuses to leave the house. He goes to school, refuses to work and gets in trouble on the bus. I am not there while he is at school. He runs away at the bus stop, tears through peoples yards , no matter how many times we tell him not to. He collects dryer lint and is obsessed with Lego blocks. He strips his clothes as he walks in the door. He has worn underwear exactly 3 times in the last 12 months. He eats in seconds and twiddles his fork. He flaps and screams while doing his homework. In the last week he has looked me in the eyes one.single.time. At 7 he still sometimes calls me dad. He runs through the house  almost hysterical until we force him to sit still so he can sleep. We finally get him to sleep just to start over again in a few hours.

I am not with him at school but he still acts this way. I know I am pretty cool but really I am not so amazing that I can convince doctors of this. A TEAM of doctors all concur that he has autism. His school team, agrees that he has autism. I can show you the test scores if you like. He is AUTISTIC damn it. I don't make it up. I don't make it happen.

At least now I know where we stand  and will limit my time accordingly. I am hurt beyond words. You may never know that this is to you, but that doesn't matter. I have to get this out. I am so sorry that you are so small minded that you can't see how we struggle. I hope and pray that you never know these bitter tears. I hope and pray that you never have an autistic child. Because , right now, this doesn't concern you, and I hope it never really does. Your ignorance frightens me.

Dreaming

Sammy  has come into my bed here and there over the last year. It doesn't happen often anymore but it does still happen. Last night was one of those nights. I woke to his hand against my back, fingers splayed and his nose against my shoulder. It's his plugged in posture. So very rare for him to connect to me. It's been a long time since he felt the need to be "plugged in". As soon as he woke a bit and I woke too the hands were down and his face was mushed into the pillow.

It seems my boy had a nightmare. It was enough that it forced him from his comfort into my space. It ripped him from where  he likes to be ,out of his comfort zone, into my energy to reassure him. He NEEDED me to be there and he NEEDED me to be close. I was his comfort. I can count on one hand when that statement has been true.

Turns out his favorite phrase " I hate you mom ,I hope you die" came true in his dream. Both his sister  and I died. He was distraught and perplexed by the feelings that overtook him. He was heartbroken and tearful.

He almost said it again today, but he stopped and Said " I hate you, and I hope you... don't die! But I'm really MAD you ruined my life"

I may not be able to win them all but I do think I won this one

My Heart Monday

I sat with you last night with my nose buried in your fluffy soft blond hair. You always smell the same, even after a bath. It's something that is and has always been uniquely you. It makes me smile and I know someday you will be bigger than I am. That day is coming fast. How I miss your walk, and your silly dances. How I miss the happy you on the dark and stormy nights. My focus is shifting to a different goal for you. I am learning to accept this little by little each day. Please love be patient with me. It is so hard to release where I thought we would be

Some days my darling boy I miss you much it hurts.I remember the tiny baby you were nestled in my arms. The baby you were before you learned how to push away,move,run. The child you were before you autism closed you in a little glass case. Your eyes were always different and I never understood that, until you were older and we were told. I miss kissing your face without you squirming away. I miss holding you against my skin and drinking you up like cold water on a summer night. Kissing your curls and breathing you deeply. I miss the tiny baby that needed me.

I want to hold you and not be pushed away. I want a hug, a real one, without asking every day. Instead I get a peppering of them throughout our lives. Feast or famine they say, and this is no different. I may not get all the hugs and kisses I want but I have come to see your affection in the subtle things you say and do. I see it when you lean on me while you play Wii. I see it when you reach your foot under the dinner table and rest it against my leg tapping just sets of three. The moment you tip toe dance and giggle when I catch you unraveling my toilet paper for the hundredth time. the pieces of your snacks that leave on my computer, for me. Small moments that I hold so tightly, I fear they will shatter in my hand as a glass bird.The beauty of each moment overwhelming me like ocean waves upon a grain of sand.

 For many days and many nights I mourned the loss of the boy I thought you would be. I cried for the boy I had imagined sitting beside me coloring pictures and making sandcastles. I cried bitter tears for a child that said my name and called for me as I left the room, helped me in the kitchen, and snuggled beside me to sleep. I sighed softly at the idea of having a boy that enjoyed my company, knew his letters and  numbers,sang little nursery rhymes and said "I love you". I cried because none of that was to be had. Instead I had a boy whose whole world was parallel to mine, with locked doors and no windows.

But now; now young man I celebrate the boy you are. The moments of sunshine and rainbows. I smile and I thank God for you and your elaborate ideas that only you seem to understand. I praise the moment of joy and laughter that are sometimes few and far between. I pledge to help make more of those moments. I was able to hear the words I longed for. I am watching as you learn how to read and sing simple little songs. I love that you help me in the kitchen even if it is only to steal bites of cheese. I applaud your battles each day to enjoy,live,breath and teach the world around you,as only you can. You my son are a shining star and for that I am eternally blessed.

I don't know where our lives are going my sunshine boy, I only know that together, it will be OK. I need for you to trust me. I need you to know, my darling boy, that every moment with you I am blessed beyond belief. My darling Sam, you are a ray of light into my day even when you are a little black rain cloud. I am blessed and honored to be your mother. Be patient with me my boy, it's only love that fuels me.

How Is THIS Legal

Brick Walls | wolfhirschhorn.org:

'via Blog this'

It takes a bit to ruffle my feathers this much. I am so ANGRY I even considered using profanity in this post. Don't worry I won't. I am so angry after reading that article up there that my hands are shaking. I had to actually wait to post this because I am IRATE. My heart is pounding in my ears. It isn't even my child we are talking about here... but it is ,you know?

Because today it's a transplant team refusing to treat a child with developmental delays tomorrow it's treatment refused for kids with autism. The slippery slope that runs along the outer banks of normal into our world. This world of ours while it has challenges and tears , it has so many moment of absolute glory. We have so many moments of sheer joy unhindered by any constraint that society sets forward. What these doctors are saying is that if you don't meet our standard we will let you die. you don't count. You aren't good enough.

HOW IS THIS OK???

It is 2012 right? Even if I get the numbers backwards we aren't in the dark ages any more right? SO HOW IS THIS OK? The idea that for one solitary second my son or any other child doesn't have as much right to life as a "typical" child infuriates me. I don't love my child less because he is has challenges. My child isn't any less part of my life because he needs help. Where do we draw the line? If this child were shot it would still be murder wouldn't it. how is this any different?

So to that transplant team in charge of this beautiful girl ~ put down the loaded gun and do your job. shame .on. you.

you can sign the petition HERE

This Moment

Started by  soule mama . Post just a moment, something you want to savor and remember. Then if you feel like you want to add your own moment. Head on over to soule mama and link your own.

Smile for me dear sweet child of mine. 

kisses and hugs for you

Smile for me dear sweet child of mine

know that these moments are few

Because of this

This is the video my husband send me this morning



Because of this we will be OK. Because of this Sammy will be great. Because of this I can get up another day, move forward, and move on. Because of this the darkness doesn't scare me. Because of this we will make it. how blessed I am to have such an amazing partner that loves our children. I am truly blessed beyond words

Biting the Bullet

So after reading Jess' post over at  Diary of a Mom about them adopting a dog  a second dog, and some information given to me by her I bit the bullet and reapplied to the local Lab rescue.

Lucky Lab header from their website

OH MY GOODNESS LOOK AT THE PUPPIES

We will not be getting a puppy even though they make my heart melt. That would never be fair to Sammy. The idea that he may get his "black labradog" makes my heart melt. If any of you reading this are looking for a dog to adopt please check these guys out. There are so many rescue dogs that need your love and attention, why go with puppy mill puppies?

I have my heart set on this. I worry that because of Sammy that it may be hard to adopt a dog. I want the best for my family. I grew up with a Lab and she was the most awesome dog ever! I want that for my kids.

They make it really simple to submit an application at LLR. just go To the application page and answer the questions. It's easier and faster than going to the DMV n your birthday!

Even if you just head over to take a look it's worth the time. You can also apply to foster dogs as well. I am willing to bet they can always use more of those too.

So we are keeping our fingers,toes,eyes, and elbows crossed for a black labradog.

The Mistakes I've Made

We all have those moments when we think ..Ughh why did I go there?

That moment started my day. I sat there today thinking about when Sammy was born. The feelings and emotions I had. The feeling that we were going to loose him even though nothing was wrong with him. The frantic checks on him every time he fell asleep. then came the crying.The screaming. the loss of words.The loss of eye contact. The loss of him. He wasn't present anymore. he wouldn't let me hold him. I couldn't comfort him. I was something that made his world just as miserable as shoes and socks and pants.

The journey of the fight back to this place we are at. The clawing and ripping against the mountainside to get back to where we could feel ok. The fight back to where we are now. It might not be everyone's idea of normal but it by far better than watching your young boy be tormented by demons you can't see.

Why did I spend energy looking back? It's frustrating and overwhelming because in ever step forward I see so much we have missed. We work hard to just be. To just love him. we do that we just love him for being Sammy. It has to be good enough. After all what do any of us have to offer but who we are? And who he is  is AWESOME

My Heart Monday

I want so much for Sam. I want to see him grow and be strong. I want him to be happy and unafraid. Sometimes I worry that I make it harder for him. I push him, I make him do so many things that he really just doesn't want to. Sometimes it's for me, sometimes it's for him. Things like wearing socks with his shoes. Honestly I don't want to have to buy new shoes every other month because they become the stinky shoes. I don't make him wear underwear because that would be torture and honestly no one is going to know (well I guess they do now huh?) I make him say hello to people we meet, I make him look up. I make him say thank you. I make him try things. I make him do so many things that seem counter intuitive because I think it's what's best for him. I have no idea if what I am doing is right. I feel lost just like every other parent on the planet.

Tonight is a night like that. I feel lost, devoid of a path. I feel like each day bleeds into the next like watercolor on a coffee filter. Each color mashed up beside it. For me, parenting has always been a little like that. Putting autism in the mix just turns the colors muddy and dull. So I pull back and regroup. I clean my brushes and my paints. I set aside my arts for the night and I sleep. Restless,churning sleep. I wake and I start all over. Hoping that the water colors on the coffee filter will make a beautiful butterfly this time and not just another wet soggy mess to clean up.

picture from craft kaboose

http://crafts.kaboose.com/butterfly1.html

Bring in the MIlk

Daniel has gotten a bee in his bonnet and decided to start working with Sam I am on his self help skills. He has decided to work with Sammy on his ability to be independent in the world. For now that means teaching him safety and money skills. We have a very recent obsession with change. He loves it and counts it. He wants to spend it every time he get to one dollar. He wants to go to the dollar store all the time. Maybe the obsession isn't the money itself but the ability to go to the dollar store itself and have the power to purchase what he wants? think about that, can you imagine having that kind of control over your world. That must feel awesome for him. Thank God for Dan because I get so caught up in all of the day to day crap that I never think of these things.

Today, Daniel brought Sam to Cumberland Farms before school. We needed milk. Daniel went over the steps of purchasing the milk.
Run in,   ask where the milk is,   pick out the milk jug,  bring it to the counter,   pay for milk,   get receipt.  If you had asked me I would have thought it was too many steps but my biggest issue is the "run in"
Sammy asked "red milk or blue milk?" he was assured that red capped milk was what we wanted. He went in and did exactly as he should. He did forget the receipt but HOLY HECK he did it. He did well. I am so thrilled and Dan is so excited to be helping him on this journey.

Sammy did bring up to Daniel that he said "run in" and that he almost did. He conveyed to Daniel that it hadn't made sense to him since we tell him all the time to walk unless were playing. He was confounded by Daddy saying such a silly thing. Daniel explained figures of speech to him. He didn't quite get it, but hey
he bought milk on his own. Super huge accomplishment

This Moment

this moment ~ started by Soule Mama. A moment with no words you want to hold on to and cherish and never forget.

Remind me, dear child, how far we have come. 

I will see the reflection of you.
Remind me, dear child, how far we've to go 

I will see the reflection of me.

a Day Off

Sammy hates school. There is no doubt in my mind that he struggles with it. Learning is hard for him, I know this. Here is the issue however. He is awesome once he gets to school, every day. The teachers all say he never has behaviors (except for a few very isolated incidents) he never acts fresh and he never yells or screams. He doesn't stim and he is 100% appropriate in school. This creates a 2 fold problem

1. I feel like crap because he is horrible at home. He is disrespectful and he screams at me. He yells and cries over homework and acts like a total beast! He spends a lot of time stimming on things like the blinds in the bathroom. He refuses to get dressed in the morning.He refuses to eat breakfast some days.He tells me he hates me and that I am the worst mom ever. He called me a freak show..where he got that I have no idea.

2. They don't see how hard it is for him  ...I cant just go tell them it's hard for him. He is fine in school, they wont believe me. I really wonder if they think I am just crazy and making it all up. I know that is probably my insecurity... after things being so tough in our last school I am really afraid to rock the boat too much. He get's lots of help and his team here is WONDERFUL. Mrs. L and Ms G. are incredible people. the principle is fantastic as is the nurse the OT and the ST. I love them and they love Sammy. We are blessed with an incredible team. Even the best team however can't make it not hard for Sammy. He cries every morning begging me to just let him stay home. I totally would if he wouldn't be beating up his little brother 5 minutes after the bus left.

Much like every day he cried and sobbed that school is too hard and his teacher is stupid and he hates school. Can he please just stay home just today? He will go to school tomorrow he promises.... oh how I wish I could just say yes.

Saying Goodbye

Our neighbor and good friend Matt died unexpectedly on Tuesday this past week. He was Sammy's buddy. Every time Sam saw his truck pull up he ran outside to say "HI BUDDY WHAT'CHA DOING BUDDY?" and Matt always answered back and smiled. Every time. It would have been easy for him to ignore Sammy, to blow him off, especially when it was the 10th time that day. Many times he would call me from the porch to let me know Sammy had gone outside and was now on the roof of the van, or eating rocks, or just doing something wonderfully weird. It was always coupled with " I don't want to get him in trouble Annie but I thought you should know." It is awesome having neighbors that look out for us.

The news came suddenly and it was harsh. There was no turning back,no time to prepare. Nothing but tears and pain and sadness. When I was told I remember the room spinning. I couldn't process the words, I didn't understand. He was so young, just early 20's. He leaves behind a son that is Nate's age. I can't imagine telling Nate he would never see his daddy again. My heart just breaks for that family. He really was a great dad!

He was Sammy's buddy. This is Sam's first real brush with death and it was harsh. To see my Sammy looking up with those sad blueberry eyes full of fear and confusion. He was sad though he did not cry. He keeps repeating to himself "my buddy...he died... he is in heaven,I'll see him again" I have caught him whispering it a few times to himself. He doesn't want to talk about it with me. He did not want to go to the funeral because he was afraid he wouldn't stop crying. His heart hurts and he is struggling to understand it. Nate gets it far better than Sammy. They both loved Matt and he was a great guy. They saw him as their friend,their Buddy. He is so missed.

So Matt rest well my friend until we meet again. Your Buddy misses you so much. We all do.

Christmas Vacation

It's almost over. I haven't been around for a multitude of reasons. Some good ~some bad~some are just life.
Vacations are always filled with dis-regulation and stress for Sammy which boils down to insanity and stress for everyone. He was sick at the very start of vacation and the medication made him very stressed and violent. Then Christmas morning (which is hard to begin with) threw us all for a loop.He received Lego Star Wars from my parents for Christmas and he is perseverating on it. Then our 23 year old neighbor that Sammy loves passed away (which is another post in itself,I promise I will get to that one). Grace got sick and so did AJ. Turns out AJ has mono! then Tyler got a concussion on Thursday at practice. For an quirky aspie kid, the doctors struggled to figure out what was normal and what wasn't.(again another post for this week)

This week has also been filled with amazing things! He was able to purchase his own bag of chips at the dollar store alone without help. That sounds like nothing to some but for us it was a GIANT milestone. He has been waking up early every day and has been mostly agreeable. I am pretty sure he has snuck down a few times just to play the game. We have also discovered Sammy knows how to count change! He has told me sweet things ("I thought you were soft and squishy but you're really hard and rough! but I love you anyway,no matter what")and things that break my heart (I don't want to be a kid with autism ,I just want to be like everyone else.No one else has autism,I am only one")

So many things we need to work on here, and so many things I can't fix. I have so much t tell all of you about but for now I am going to enjoy my boy and the last 2 days we have off together.