Wednesday, February 29, 2012

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?

Monday, February 27, 2012

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.


Friday, February 24, 2012

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 Grateful
Cuddle Bug
Big Girls Don't Cry
Coffee and a Side of Sunshine
Through My Eyes
Words For Sammy
My Heart Monday

Sammy awesome

video

Thursday, February 23, 2012

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

Wednesday, February 22, 2012

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.

Tuesday, February 21, 2012

I am Grateful

Top Ten Tuesday

Photobucket

                                                                  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 badMissZ (who also takes great pics of my girl) all of my MDC spring moms,Ellen at Love that MaxJess at Diary of a Mom just to name a few of the people I check out a bunch



Monday, February 20, 2012

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.





Thursday, February 16, 2012

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.

Tuesday, February 14, 2012

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.

Top Ten {Tuesday} 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

Monday, February 13, 2012

flash backs

video
between 3 and 4

video
4.5

video
almost 5
  video
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?

Saturday, February 11, 2012

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.

Friday, February 10, 2012

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



Thursday, February 9, 2012

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.

Wednesday, February 8, 2012

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?


Tuesday, February 7, 2012

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!

Monday, February 6, 2012

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?

Wednesday, February 1, 2012

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?