Lost in Translation

From the outside I seem together and normal. I look like everything is great. I smile. I clean. I teach. I pull myself together. What you don't see is the constant battle in my head. The constant fight to feel better. The constant work it takes to put one foot in front of the other.

Don't get me wrong I have good days. More and more lately. It's getting better. The meds are helping. I am slowly getting better.
But some days
Some days I just want to quit. I really just want to give up. I want to step off this merry-go-round that we all call life.

 I hear myself crying out from inside my head but the words somehow change. In my head I hear " I give up", "I quit", and "not one more step". These voices cry out so loud it is almost deafening. Like standing in front of a freight train that is barrelling down the tracks towards me.
The voice stuck on repeat that reminds me I am failing, falling apart, and broken. Those voices tell me time and time again that I cannot and will not be OK. It tells me that this is my new normal and it will never get better.It is loud and clear.

But somewhere it get's lost in translation.
Those aren't the words I feel. Those aren't the words I say.

The quiet voice from my lips is simple

"Lord help me." "Mary pray for me" 

I turn to my Lord when I can't turn anywhere else.

You may be asking why I am writing this. There are a few reasons really.
#1. It's time we bring PPD and depression into the light. It doesn't make me weak. It doesn't make me selfish. I can't just "Get over it" I cannot just make it disappear. It's how I'm built. It's part of what makes me me in my own very unique experience. I have been dealing with depression off and on my entire life. The first time I remember feeling dark and hopeless I was young. Maybe 6 or 8 years old. 

It's an undercurrent in my life.

#2. My god is bigger than my storm. I take my meds. I take care of my family. I do the things that need to be done. My god is the only one that can heal those wounds of my heart and correct and quiet the voice that tells me I am worthless. My prayers are heard.I am loved. and I will be ok. He is my voice of truth when I cannot trust my own. He is my rock that in these times I cling to. He is everything I need. 

#3. To remind you that it's never hopeless. It's never hopeless. It's never hopeless.
I need to hear that sometimes as much as everyone else. I want you to know that if you feel as though you can't take another step or those voices are too loud to overcome or you just can't catch your breath, remember you aren't alone.
It's never hopeless. 

And most importantly,

#4

If you are reading this and you think 

Not. One. More. Breath.

Don't Give Up

Reach Out.

National Suicide Hotline

Babies, Sunshine and Butterflies

Sitting here watching a movie  tonight and suddenly I'm a pile of mooshy teas. October Baby, a must watch movie for sure. Suddenly I see the girls in my mind's eye grown and making choices on their own. My boys are growing so fast as well. The days last forever but the years just fly by.

We are nearing the end of lent here and Easter is approaching quickly. A sign of rebirth and New Life. A reminder of the awesome power of God and his power over my entire life. This Lent has sucked for me physically. I have been humbled for sure.
I have always been a get it done myself sort of person. That was not an option this time around.

My family and my friends had to take care of me. They all pitched in and helped me through one of the hardest times in my life. I love my parish family. Say what you want about organised religion, but it saved my life in more that one way.

Easter is coming! The Sun is shining more and more.It's spring and time to renew ... well, everything

Happy Birthday

Today is my birthday. I will spare you all the details on how old I am. I woke up today to my darling Sammy making me a wonderful breakfast. He even served me breakfast in bed.
How awesome! Of course between him, Nate, and Grace they ate it all but that is fine.He also made me coffee and it was close to perfect! He did forget the spoon but I wouldn't ever say anything.

GF cheese toast and Coffee

He then stepped on a small drop of water in the kitchen. He fell apart, stripped off his clothes and spent the next 40 minutes wailing that his pants were wet. If his pants pants had in fact been wet, or if he had in fact had anything else to wear, I would have let him change. That wasn't the case, unfortunately.


Then this afternoon Sam and Nate got into Tyler's room and dumped an entire bottle of cologne on themselves.
If you have ever been pregnant you know how sensitive your sense of smell becomes. I now have a migraine.

Out of Control

I have a case of the "Crazies". The Crazies start when I put too much pressure on myself to be perfect. I have been feeling very out of control. There is a ton of clutter in the house that makes me feel like I am choking. It's physically painful for me when the house gets out of control. My OCD this pregnancy has been out of control completely. I have been so sick this time around that nothing is getting done right. It's making me crazy!

I just need one day where I feel good enough, happy enough, motivated enough, and mom enough to get it all done. I just need one day where I feel like I am failing a little less. Just.One.Day.

Instead I am struggling to get out of bed. My bedroom looks as though a hoarder lives here. My windows need to be washed and I am pretty sure there is a science experiment living in the back of my fridge.

It's days like today that make me feel like I am on the wrong path in life. That I have too many kids. Days like this make me feel like a failure.

I need a plan to fix this.

For Granted

When you have special needs children , you don't take things for granted the same way other people might. I don't assume my kids will walk and talk on time. It's always a huge relief when they do. I watch all the kids move through their developmental milestones and I check them off my list. Like a constant imaginary check list only I can see.
eye contact ...ehhh check
play skills .. yup check
responds to name... check
points... CHECK!
I still watch with an over critical eye. Nate has some weird things he likes to do. I worry I am missing something. he will screech for no reason and then go back to playing. He will verbally stim on silly words and get stuck on other words or sounds and just repeat them. I find him lining up stuff and he can be so very rigid in his thinking. He has sensory issues and hates socks just like Sammy too.

It could be personality. He is a headstrong little guy. He is too social for me to really worry. He warms up slowly but once he is comfortable - watch out! I am so scared I am going to miss something. How much is just what he has learned from Sammy? How much is just adaptive behavior to deal with the chaos that Sammy brings to our house? How much is an issue?

What if I miss it again?

I watch Grace and I go through the same list. What if I am wrong? Again.

The upswing to this is that every single milestone seems so huge. I am aware and focused on them. I enjoy watching the children work to acquire the new skills. It's like every day is Christmas here. I don't know if I would ever have thought this way without Sammy and his issues. How can someone feel so happy and so sad at the same time? Nothing in life is ever just sweet anymore though. There is always a bitter edge to any accomplishment.

I have been watching Nate slowly pass Sammy and that is getting difficult. Sammy can see some of it and he is frustrated too. Sam works so hard, it's just easier for Nate. What is going to happen when Grace passes Sammy too?

Until we get there I won't worry too much. I will just try to relax and enjoy where we are. I don't assume tomorrow brings anything, but I am always hopeful.

Angel in our Corner My Ponytail

Ok so maybe her name isn't really my ponytail but that is what Sammy called her after the first time he met her. This woman is so awesome and I can't even tell you how much we love her. She came for dinner and had the chance to see Sammy just being the whirling dervish that he is. She didn't bat an eye, in fact she pointed out all the amazing things Sammy was doing. She has helped us come up with behavior protocols and changes for him. Without her we would probably still be crying in our soup trying to figure out how to work with Sammy at home and this year when things got ugly, she was there to help and support me.
Every once in a while you meet someone that you know loves you and will be there for you no matter what. Well now, not only is she that person for me but also my boy. I can't begin to explain how loved I feel just knowing she is an Angel in our corner.


She wrote this for us...

On Saturday April 28th, my friends and I ran (read: walked :) )  in the 3rd annual Las Vegas Race for Hope; a 5K race that benefits families with Autism and raises awareness and education. This race is sponsored every year by the Grant A Gift Autism foundation and has grown in numbers each year. This was my first year participating in the event and I even made my own team! (this sounds easy, but let me tell you, managing adults is much harder than managing kids!) We walked in honor of Sam. Beautiful, wonderful, amazing Sammy who has changed my life in so many ways. 

The money from this event goes to benefit families in Nevada  so it may seem odd that our team was named "For Sammy" who lives in Massachusetts. For me, it didn't matter that the money raised at this event wouldn't make it to Sammy. For me it wasn't really about the money (although it's a really great thing for families who need help). For me it was about spreading awareness and education. For me it was about making people understand. For me it was about putting a face to that 1 in 88. 

You see, Sammy was the first person I ever knew who had autism that wasn't a student or client. Sammy was the first person I loved who had autism. Sammy was the first person who made me see it all differently. Anne and I have known each other for many years and we have always been close. So when I found out about Sam's autism, I made it a point to do everything I could to help, everything I could to make this journey a little easier for Anne and her family. 

Sam is the face I see when people say "1 in 88". This family is the family I think about when I walk, run or volunteer at events...regardless of where they are. Sam is the voice I hear saying "my love you my ponytail" (his affectionate nickname for me) when people say "I can't imagine living with this every day". 

So, even though I work with kids every day who are affected by autism, Sammy is my 1 in 88. And I wanted people to know him. 

So on that Saturday we walked. Me, my husband and my friends who had never met Sammy. They all sacrificed their time. They all walked, ran and jogged. 

It was hot. 
People had allergies. 
People had bad knees. 
People had little ones and no baby sitters. 
People were tired (ok ok, its Vegas, they were hung over). 

But they all walked. Not one of them took a short cut. Not one of them decided to do the "fun mile" instead of the 5k. 
Not one of them complained. They all finished. With a smile. 

One of my friends said to someone who tried to convince her to take a shortcut "this kid we're walking for can't quit his autism so why should I quit this race because my knee hurts?" 

I cried. 

I cried because she doesn't know Sam or his struggles or what he goes through every day just to get dressed. 

I cried because even though Sam wasn't there to see it, he had a group of amazing people walking to support him, running to educate people, limping to let them know that he has a team behind him every day! Even though he can't see them...they are there. And now they have a 1 in 88 too. 

I'd walk a thousand miles for Sammy. I love him. He's my 1 in a million :) 

He's my 1 in 88. 

Who's yours? 


linking up with Just Write over at The Extraordinary Ordinary

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.

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.

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?

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

As Boys Grow

As boys grow they pull away from their mother. It's a very normal thing to happen. Tyler my oldest son is beginning that it seems. He is never disrespectful or combative. He just seems to need me less. He still hugs me and needs me but I can see him growing up faster by the minute.

I was looking for a picture for this weeks moment our Friday ritual from Soule Mama. and it occured to me. Sammy almost never hugs me any more. He use to be all over me, hugging me until I felt I had to escape. Touching my hair and face and arms and neck over and over. He was always being affectionate but sometimes it crossed a line into too much. I would always remind him to respect my body.

It's been weeks since we have connected for more than a second. My heart hurts. I love that boy so much I can't even think about it without tears stinging my eyes. I want to hold him and love him. He doesn't like being touched these days. I try for hugs and sometimes I get one. Its usually a very patterned response to my request.

Sammy 4 and Tyler 13

I need to reconnect with him. I want to hold him and cuddle him. I want to connect with him. I want to crawl inside his mind and share the space with the demons that torment him. Maybe from inside his head I can fight back. Maybe then I can find the pieces for him and help him not struggle so much. My heart aches with all I CANNOT do for my son. I want him to know I love him. Not just a little but with everything I am. I don't want it to be just words.

He may just be pulling away as Tyler is.

 It's not fair. I have had far less connected time with him. It took forever to even find a window in his world, and now those windows are drawing the shutters closed.

One foot

One foot in front of the other. I have amazing panic levels right now. After taking my two youngest to the pediatrician today  I am still spinning, in fact I can't feel my toes. I can't think I can hardly breath.  after checking both children for developmental red flags we have received good and concerning news.

Grace is ahead of the game. Her development across the board is about 9-12 months. She is in the 25% for weight and 75% for height. shes healthy and amazing

Nate is social engaging and wonderful but there were lot's of red flags. Developmentally they feel he is behind and that something is just not right. They have referred us to a specialist at our local children's hospital. I want to throw up. I want to scream.I want to swear and cry and freak out. I am pissed. I am scared. my head hurts and I just want to give up. God help me.

It's Just Me

We had a team meeting yesterday at Sammy's school. We had some concerns about the behavior plan being used in Sammy's classroom. After a very productive meeting I walked out feeling mixed emotions.

Before the meeting I was sick to my stomach, stressed and anxious. I wanted to put on my jammies and curl up on the couch. I wanted nothing to do with the meeting my husband had scheduled. I felt like I was going into battle. ( I wonder if this is how Sammy feels in the morning) This reaction to team meetings have nothing to do with the professionals at my sons school. It's my baggage and that is a long story stemming from issues with my x-husband and his family.

The meeting went well, we are all in fact on the same page and we are very lucky to have such a loving and caring team.I still am not sure how I feel about the teacher but I can see she likes Sammy. Sammy is beginning to read and really just doing well in school this year academically...I think.  I thought that last year and it turned out, he was doing great for Sammy just not great for a first grader.

His behavior at school has improved and the teacher assured me she is giving him plenty of leeway in the right places. He doesn't act even nearly as bad at school as he does at home. Not.Even.Close.

So I left there and all I can think is "It's me" It must be me, I must be doing something wrong to elicit this response from Sammy. I get all the anger, frustration and abuse. Meanwhile the school must either think I'm lying or crazy. They must think it's me that I am a bad mother. That I am a failure. It's my worst fears come true.

I am very careful to tell the truth even when it's not pretty , even when I know I didn't handle it well because I am not a liar. That I can control. I may be a failure, I may be doing it wrong. It may be me. I am living this life, no one else and I am the one doing battle each day. So when it comes down to it I have to live with myself everyday and I am doing the best that I can.

6 feet of snow

I feel like I've been buried alive and I am barely breathing, stuck under six feet of snow with no clue which way is up. I continue to claw at the ice until my fingers are numb and bleeding and all I have managed to do is get lost further in the snow.

Sammy during the spring snowstorm in MA

That's what this week feels like. I can't breath, I can't think... I feel like I am drowning. I feel like nothing I do is right and I can't win. It's time's like these that I wish I had a sign on my forehead that said "I am NOT as bad a parent as you think I am" Even though I don't really care what anyone else thinks, I still care what everyone else thinks. It's the same mechanism that keeps me from going outside in my underwear or picking up my son at school in a moo-moo. I can tell you I don't care until I am blue in the face, but I do care. I desperately just want someone near me that gets it. I am tired of feeling isolated and alone and frustrated when Sam lashes out at me in the middle of a store. I just want someone to get me , to understand how much this sucks. I want acceptance.

I feel lost in the ether, floating aimlessly. My son is very verbal and if it weren't for the behaviors he would be considered by most "high functioning". I feel like that label discounts how much he struggles ,how hard it is for him every.single.day. Sometimes I feel like we don't belong in the autism community because Sammy can often seem so freaking normal to people who don't get it. I have friends with completely non-verbal kids, kids still in diapers at 10 , kids who don't even acknowledge when their mother walks in a room. They seem to have it way more together than I do. How do I go to them and complain that I'm struggling?

So I don't. I sit here and I write.I fight the lump in my throat that threatens to bubble up when I speak. I am resigned  and beaten tonight. I sensor myself in the world and deflect the stares I get in the store when Sammy begins screaming.  I just continue to sit here and write.

free falling

It seems we are free falling here Complete chaos and uncontrollable anxiety with Sammy tonight. I guess it was my fault. I changed the routine and it messed him all up.Yesterday Dan was home which has changed the Earth's axis.  You see part of the wrinkle in our universe is because Daniel had a tooth pulled and is mostly out of commission. Daniel usually takes AJ to soccer on Thursdays, however Dan couldn't drive tonight. I really had no other choice. My leaving was not acceptable to Sammy and he began to get edgy as soon as I left. Moments after , Tyler left the room Sammy was in. This left Sammy alone. Sammy has developed this weird fear of being alone, he can't even go in the bathroom alone sometimes. When Tyler left him to put away a toy, Sam lost it. He ran after Tyler and attacked him. I arrived home about an hour after I left to chaos. As soon as Sam saw me he began to settle, I did have to intervene to save some glass angels and to protect Nate . Suddenly all was well and the storm blew over and Sam sat to make me something cool.

It's so hard watching your child chased by a demon. To see his sweet face tortured. To know he just cant free himself from all the confusion and fear. I am powerless.It may be time for us to consider medication. I'm just so scared. How do I make this decision?

Fighting to Breath

So I decided to link up with for this




 When the weeks are like this I feel like I am stuck in quicksand. I wonder if the world around me can see the toll being a mother to children with autism has taken on me. I feel as though my life is some form of algebraic word problem "If Sammy ages as half speed and Mother ages at three times Sammy speed how fast does Mother age?" The answer is too fast.

there is a blog I follow, A Diary of a Mom  and it helps me. I don't feel as alone when I read things like this post here and this post too. I have them on quasi-speed dial and re-read them on days like today. Days when I feel like I have climbed backwards into some dark sink hole. I try to keep things light here, I don't ever want anyone to think I feel hopeless or over stressed. I don't want anyone to think I don't love my sons with all I am and all I have. I do. He is forever intertwined into the fibers of my being, wound so tightly around me that you cannot tell where he ends and I begin. Perhaps that is why this is so hard for me? Perhaps I am too close? Can I be too close? In order to reach him I have to be close, constant and unwavering. I can't be near and far at the same time, just ask Grover. He did entire dialog about that on Sesame Street

However...today I just can't. I haven't written in a few days simply because I couldn't muster the energy to put on a happy face and pretend like things are OK. They aren't and I am scared to death because I have no clue what to do. So if you are looking for a happy "i love my life" kind of post  here are some suggestions
accomplishments
happy
feel free to wander backwards to untagged posts to all sorts of good stuff


Its been a long few weeks and it isn't getting better. Anxiety brings this poor child to his knees. Sammy is so much like a stick of dynamite with the fuse always lit. The level of anxiety  determining the speed in which the fuse burns. It fuels the fire, creates the burn and destroys any progress. I hate it.

Sunday, it all fell apart. We went to church, Sammy ended up restrained in the crying room. He was trying to put his head through the door. I couldn't even get him outside. I couldn't move him, so I sat down with him, held him tight, and let him scream and flail safely.  He was clawing at his face and arms, screaming and yelling. Nothing I could do would soothe him.  I wrapped him up in my arms. The same arms that held him and rocked him as a baby now hold him hostage. He hates to be restrained but some times that is all I can do. I have to keep him safe.

It's now Wednesday. Today he was carried to the bus stop because he refused to go. His socks upset him and he refused to put on his socks. His behavior at school is getting progressively worse, and the behavior to get him to school is as well. he comes home and explodes like a bomb. The entire week he has been going off like a loose cannon. each time worse than the one before. There is nothing creating the issues that I can change. Unless I can get God to keep it warm all year long. The weather change, the back to school, the teacher he doesn't like, the shorter days, the longer nights, and the dryer air all contribute to my boy and his melt downs. I have no control, I have no clue, and I am tired.

I am so tired. I use to compare this feeling to having spilled soup in your lap. I don't even like soup. I feel burned out and frustrated. I am tired and alone and I don't want to do this anymore. What was supposed to be respite turned into chaos and I am at the end of my rope. I am going to have a battle on my hands with his teacher (more about that another time) and a battle here. Sometimes I just don't want to fight anymore. I just can't breath because the air around me is so heavy. It feels like 100% humidity in an oven or being underwater.
I wonder if people can see it. Even people who don't read this blog have noticed. I miss life before autism. I miss being able to go out as a family and enjoy the whole day. I miss going for car rides without disaster. I miss being able to make one meal with no gluten free options. I miss being able to make and eat whatever the hell I want without worrying if Sammy is going to steal it and eat it. I miss being me, feeling good about myself and having "good mom" moments. I don't feel like a good mom. I feel like I failed. I am having a pity party and I apologize. I just miss the parent I was before it revolved around autism. I miss being carefree, because here, in this house, carefree can never happen again.

Tomorrow, I will wake up. I will smile, put my feet on the floor and do it all over again. Because I love him. Because he deserves it, and because I know if I don't no one else will. He didn't ask for this any more than I did. Nothing changes how much I love him, I just wish I could figure out how to HELP him.

Signs everywhere

There are signs for things everywhere. No parking, No soliciting, No smoking. They encourage or prevent and create all sorts of situations.Some are Funny some are very important and some are just plain Stupid.

Today while driving home I saw THIS in Rhode Island. I live directly behind a school.It's a high school and a really slow street. we only have maybe 8 houses on our street.However lots of teens drive to school now.they whip around before and after hours. On many occasions our neighbors have alerted us that Sam has run into the street. We watch him. Our yard is fenced. 95% of the time he wont leave the yard and he is never alone outside. However, Sammy is fast! really fast. He can and often does get out. A sign alerting these teens to him might help them slow down. Maybe we can educate at least one of them? It's no different from a Deaf Child sign or Children at Play sign...right?

What do you think. Would you put a sign in front of your house for your child?

Raw emotions

   I am not knows for being warm and cuddly or soft. In fact my husband often refers to me as having "sharp edges"  At some point I replaced the "melodramatic" child  I was with this crusty sharp edged no teary person. I don't like that about me. I am emotional and intense. I get angry, I get cranky, I can even sometimes get down right mean. I do my best to avoid the last one as best I can.It doesn't happen often. Depending on who you ask, they may tell you varying degrees of that. I just don't do soft and squishy. I  am loving and gentle with my children but I don't do empathy or sympathy well. I have gotten better and actually go through a checklist in my head now  when someone says something sad to me or tells me something emotional, even when someone dies I often don't cry about it in front of anyone but will sometimes cry alone.Things often come out of my mouth sans filter. I have asked people if they had a stroke and other embarrassing things. So i now stop before I react and I have trained myself to not react emotionally to things on the outside. Unless, I am tired

   Like today. I worked last night and the babies didn't sleep much then this morning Sammy had yet another  behavior and I had to forcibly dress him. Grace was cranky and got overtired before it was time for her to nap. That resulted in screaming and crying. Nate bonked me in the face which is still sore from surgery. I am down on myself about a ton of stuff and being tired just makes me feel even more vulnerable. So why on Earth I decided it was a good day to watch Parenthood I don't know. I don't understand what I was thinking.

Now, my belly is in knots and my head is spinning trying to place where my thoughts are. I can't seem to flesh it out... I promise when I do I will come here first.

do I have to?

I hated homework as a kid.seriously it was like filing my own teeth with an emery board. I hated it so much. I decided I liked it by college but only because by then the OCD had tipped the scale in favor of neat written papers and straight lines.

My oldest son Tyler has Aspergers and at 16 is delayed only in the executive functioning skills (planning,organizing and follow through) and he does have a written language disability called Dysgraphia. For those of you that don't know what that is, it means his writing sucks. it's really bad. To this day at 16 he still spells red- R-A-D on paper. He knows it's red, he can do it verbally and he is not lacking by any means for intelligence. The signal gets jammed from his head to his hands. We tried an assisted technology eval a few years ago and found something called http://www.gingersoftware.com/  A minor miracle for our household and the writing of papers and book reports. Tyler hates homework as well . It is hard and complicated and he struggles with it. In 7th grade he almost failed because of homework. A's and high B's on tests,classwork and all projects without writing and they still wanted to fail him for homework. It did not happen, and while I understand the importance of following directions and doing the required work, I don't think any kid should fail based on homework. If it can help their grade, awesome!



So here we are with Sammy.2 pages of homework every night. One math,One spelling. Sammy.Hates. Homework! Every night it's the same battle,the same argument the same tears and gnashing of teeth. Would it be terrible of me to not have him do it? To have him try and encourage him to try but if he just can't get himself together to let him skip it? Does it make me a horrible mom?  Snacks during the work help him since that child will eat until he pops if we let him. So  how hard do I push.