Talking to Myself

I narrate my life in my head a lot. I know it sounds weird and kinda crazy , but it's me. If you have ever seen the movie Stranger Than Fiction, it's kind of like that actually.  I debate every decision in my head until I am 100% certain it is the right thing to do. That isn't what I am talking about though.

Lately Sammy has been ignoring me. Nate always takes some time to process what I have asked of him. It seems like he ignores me too. Then there are the teenagers. I ask them to do something, they always respond with "Sure, mom" and then... they don't do it. I don't know which is worse. Actively ignoring or saying yes and doing nothing.

I have had enough, either way.

I need ideas on how to get them to listen, first time. Or at the very least acknowledge me when I am speaking to them.

A 6 Word Story

Reading this Blog Post at Kinsey's Texas Tales She said

                     "When asked to write a story in six words, Ernest Hemingway responded: 

“For sale: Baby shoes. Never worn.”"

So this of course got me thinking. Could I write a story in 6 words? It's harder than you think! All I can hear in my head is the Bill Cosby and Sandman Simms skit.

                     
                                                      "CHALLENGE"

Every sentence is either too long or too short. Sometimes It doesn't make sense to anyone but me. I sat here for 45 minutes trying to find the right story to tell in 6 words. I want something that conveys the sheer power of the boy. Something that says there is hope,love,light, and fun in our lives. Something that tells everyone how amazing he is. I want to world to see what I see.

so this was what I came up with...

CHALLENGED YOUNG BOY, AMAZES THEM ALL.

Trying So Hard

I am trying so hard to be positive and enjoy the extra week with Sammy. I am trying to find good things to write about. it's a struggle right now. Yesterday was so bad I almost completely lost my shit. Yes.... really! I am talking a crying, yelling, flipping out, foot stomping, crazy lady freak out!

Nate has had enough of Sammy and has twice now lost it on him and began pummeling him into the ground after relentless teasing. Right now he is sitting beside me because he came to tell me " right now I feel like I want to punch him in the face"

Not pretty here. We're going to head out to the park even though I feel like crap because I cannot possible take another minute here. I am hoping for some baking later as well.

On a plus side I did get a ton of laundry done yesterday. I am so very behind from summer and being so sick with Squish. 14 weeks today and the next few days will be full of fear and panic. My midwife made me feel better when she said " These things are out of our control, you are healthy and so is the baby. That should give you some comfort. Yes, bad things can happen, but try to focus on the positive" I love my midwife and her ability to call it like it is.

Sam's day yesterday was less then stellar. He broke Nate's bed, screamed, yelled, cried, punched walls, and hurt the little girl next door. He was hell on wheels in every sense of the word all.day.long. He lost his stuffing over and over with every request I made of him. Finally I just had enough and let him chill with The SIMS. He loves to build houses. He laid down with us last night and sighed and said...

"I am a lucky boy. I have a mommy and a daddy and a family. They love me"

so I guess it wasn't all bad. In the end, the entire day of crap was worth that 3 second sentence at the end.

Rougher days

We have an extra week of summer here because of issues at Sam's school. I am frazzled and tired and I have had MORE than enough. Sammy is stressed because the plan has changed. I am a mess because the plan has changed. Sam's school had an air quality test done and it failed. It was bad enough that they pushed school back until after labor day. They called an emergency meeting. Everyone is scared and panicked and with good reason.

These are our babies we are putting in their hands. We are trusting them with one of the worlds most precious commodities. If God forbid something goes wrong, we have to live with it! I don't know what is going to happen, I don't know what my choices will be.

Stay with Mrs. H-M and the team that I KNOW gets him what he needs every time. The woman who goes above and beyond to figure out what works for Sammy and implement it, even if that meant calling me over vacation to chat, even if that meant taking advice from someone she has never met, someone across the country. This team has gone to bat for my boy and so many others like him. I truly believe that Mrs. H-M won't go forward if it isn't 100% safe.
I will never forget the first IEP meeting that I went into. I was ready to fight after the crap that got pulled in our other school district simply because Sam was DX outside of the school. The Dr. had worded it as "I Think Samuel has autism" and they pounced on that with "he doesn't REALLY have a DX". We went in to the meeting scared and defensive.We were met with compassion, understanding, and a true sense of TEAM. They wanted to help Sam. 2 years later, it hasn't changed.

Or do we change schools and press our luck? Uprooting him into a school where he knows no one would be disastrous. It has taken him 2 years to get to know everyone at Wood.

Or do we home school him until it's 100% certain it's safe and pressure the district to provide in home service. I don't think I have the patience for this option, but if it comes down to it I will. Oh I hope I don't have to though.
Saying that seems so selfish.
It's time like this I wish autism wasn't an issue.
That would make it easier.

Blessings

I want to write about my heart and my longing for Emma. Knowing it's been so long since my body held hers, so long since she was a part of me physically, makes it difficult not to. I feel like not placing those words down does her a disservice, like I am somehow negating her existence. Right now, I just can't put the words in place. I am simply having an "I Miss Emma" kind of day. I need to keep this inside for now, baby this feeling, feel it completely...alone. I may write on it soon, I may never write on it, and that has to be OK.

Today I am focusing on my blessings, the many wonderful blessings I have in my life. I think Emma would have liked that as well.

Sammy turned 8 yesterday and we went out to dinner. We had the most amazing time. Everyone behaved and not one meltdown was had (not even my own). He chose the place with the peanuts, after being talked out of Taco Bell. I was able to relax and enjoy our family and celebrate a wonderful day. Sam really wanted to sit on the saddle and have everyone say happy birthday! It was all he talked about all dinner long. After explaining that they wait until your done eating (mistake) he decided he was done. We did convince him to eat just a little more though.

Daniel has been struggling with major leg pain for a few months now. His blood work showed a few issues and we assumed he had Lyme. He took the meds and still did not get better. We started to fear the worst. We worried that he may have a tumor that was causing swelling and pain. After an MRI we have just been told he tore a tendon! OUCH. While this is certainly painful, it's not cancer.

My AJ, just started soccer for High School...so much for the kid who had a hard time learning to walk!
Tyler goes into his senior year.
Nate has discovered a passion to learn everything he can.
Grace can sign so many words...good, thank you, thirsty, done, dog, shoes, cookie, help, more, hair, eat and water. She loves to talk and seems to really understand everything.
This is week 13 with squish. the next few weeks are going to be really hard to get through. I am trying to enjoy each day I have squish with me.
And, while I could be just sad and heartbroken that Emma is not here in my arms, she is my heart. She was a part of my body for 14.5 weeks and she will be part of my heart forever. I pray she knows me when we meet in heaven, because I will be looking for her

For I Am

My dearest boy,
 
   Today you are Eight. Eight!

      I am not sure where the last 8 years have gone or how we possibly have arrived at this point.  I want you to know how very proud of you I am. You have come so far and accomplished so much. I love you more than words could ever express.

    From the very moment you were placed in my arms I was deeply enamored with you. The brightness of your soul was unmatched in any child I had ever seen before. I spent hours staring at you and breathing you in.

    You ran with such energy as a toddler. you climbed everything around you including an 8 foot backstop at only 8 months old. I should have known then you were extraordinary.

    Minutes turned into hours, which turned into days, which turned into weeks...months...years. Here we are now.
    You have your challenges and it can sometimes challenge our connection. I hope someday you read this blog and see how very much I love you. Don't ever doubt that every choice I have made was for you. I love you you Sam I am more than I can even find the words to express. I adore you, simply because you are awesome and amazing to me, even on the bad days. You are filled with awesome like no one I have ever met.

I promise you I will always be on your side. I am in your corner like no one else. You are my gift, and I hope someday you feel as though I was your as well.
   Thank you for being my son.

Love,
     Mom

I need Ideas

(re-posted from May)

As most of you know I am walking/running/dying through a half marathon in September. I have committed to raising 500$ on behalf of Autism Speaks. I am at a loss I have no idea where to start. I don't want to bug everyone I know about pitching in money. but if I can get 100 people to donate 5$ then I get to my goal. I need ideas on how to raise funds. I need to find a way to make this happen.

I am working out pretty regularly now at least 30 minutes a day with a short sprint in there. I can sprint almost 2 minutes at a time now at a 6.0 on the treadmill. That is a huge change for me. I am doing squats and stretches and having a little mini panic attack each time I think about it. 13.1 miles, what the hell was I thinking???

Oh yeah , that's right! I would do anything for my boy and for all the other children out there just like him. Because it isn't just enough for me to say I should do it, I have to actually get it done.

I put the pressure on myself and I am starting to panic...

This one time ...at band camp...

How many people know where that line comes from?



I laughed every single time I hear it. You see I was a band geek. Like really, a total geek. I don't really think I had friends outside of chorus, drama, band and a few random ROTC friends. I was so OK with that because most of my friends were just like me. I was also however an over emotional mess in high school. I cried a lot , and often for no good reason that I could ever discern. I lacked social skills, humor, and the ability to not be a drain on most of my friends. Yes, I was that girl! I remember being at band camp all day long and often until dark. I remember writing each set down and tripping over myself as we blocked. Please tell me someone else remembers band camp as fondly as I do? While there were no (or not many) escapades like they mentioned in the movie, it was still a blast.

Thanks to our business group I have learned some awesome social skills such as listening  not always needing to  be right, and how to appear empathetic. empathy is still so hard for me.

AJ started band camp this week for FHS. He loves it. They sound pretty good too, much to my surprise! He plays the trumpet and he plays it well!

I have been watching him play, since its just across the street, and it's been really awesome. It's also bringing back all these awesome memories I have of my years in band. I hope he loves it as much sa I did. I am so proud to see him out there, working hard for something he loves.

Truly....Madly...Deeply

I am dealing with some very personal and emotional stuff right now and it is really hard for me. I keep trying to stuff it and go past it, but I can't. What has worked in the past does not work now and as a result I am struggling to tread water. I figured I would put it here in the hoped that writing it down will ease it somehow. I am so afraid I will regret this.

I can usually get by during this time because nothing MAJOR triggers it. This is different, because just the time line triggers it.

I lost a baby at 14.5 weeks. I know I have talked about Emma here before. I always hesitate because I don't want people judging my grief. I don't want to be a downer in the group.
I understand its been a long time. I understand it was "only" 14.5 weeks. I know so many that dealt with it being far far worse. Far more...tangible.
This wasn't tangible. I barely even acknowledged it then, I couldn't. It's something I truly, deeply, and unquestionably regret. It took me years to even fully acknowledge loosing her on August 22, 2001.
Some may realize that is Sam's birthday with just an earlier year. He came in 2004.
This year on his birthday I will be 13 weeks pregnant with this little squish. Emma's due date and Squish's are just weeks apart, and it's driving me mad.

Months ago I entered a contest on The Blog here and apparently I won. I had forgotten I entered. I received a beautiful comfort bear and a book (which is going to be a blessing for someone else) from them. It's funny how much the big white bear comforted me.

Then I read this story and I can't breath. 

An old friend of mine just lost a baby and my heart breaks for her.

I am surrounded by it. I can't run away this time so I guess I am going to trudge through it. Just please God, don't let this baby come on her due date. I can't do that, please.
I keep panicking that squish is gone too.I can't get control of myself. I feel crazy.

I obviously have to deal with this. I just don't want to. I worry that people will judge my grief. That they won't or don't understand. Let's be honest here. I don't even understand.

The Land of Stupid

I took the three littlest to the playground today. We packed sandwiches, fruit, and juice. We remembered hats and sunblock. The boys were so excited! 

I discovered how very independent Miss Grace is. She wandered off without even a furtive glance in my general direction.

I discovered how NOT independent Sammy is at the playground. He kept an almost constant eye on me and if I moved out of his line of sight he came running for me. It's a big change from where he was even a year ago. He use to bolt from places like that every time we went out. It was terrible. This was a little nicer.
He found a spinning toy and spent the rest of the time there spinning on it. 

Nate played and made a few friends and enjoyed himself as well.

I ran into someone and we started talking. When people find out how many kids I have they always tell me how crazy I am and blahblahblah...nothing I haven't heard before. She asked if I was thrilled to have them all going back, because you know having so many I must be miserable... I explained I homeschool Nate but Sam is in a special needs program that provides better things than I can give him. Her first response "Oh but he looks so normal" I responded as I always do "Well, autism doesn't exactly have a look" Her next volley FLOORED me! It took me a second to recover and respond. "Oh autism (in this drippy stupid knowing voice)  Its so common now it's hardly a special needs thing anymore"  I should have walked away. I should have stopped talking to her right there.I could only respond with " That is only because you don't live with it" I didn't walk away, so anything this poor woman said after that is my own fault for giving her an audience to her ignorance. I am sure she had no idea how ridiculous she sounded. I changed the subject. She asked if I ever got stressed out with all the kids.  I was honest, yes of course I do. Some days my feet hit the floor and I feel like I'm putting tuxedos on jelly fish all day. Some days it sucks! Regardless, I feel like this is what I am here for. 

So she says

" I don't think I could have that many, what if something went wrong?" 

I smiled and said "Well, you handle it, it's life. We aren't ever guaranteed perfection. I have two spectrum kids, it becomes your normal." 

Then she said it...
"No, I mean like a real problem. Something like Down Syndrome or Cerebral Palsy"

Wow. just wow. At that point I walked away. No words just...away. Ignorance scares me

I Can't Stop The Train

Sammy's birthday is coming.Last year for the first time ever he was aware of his birthday and seemed to enjoy it. He kind of gets the concept of age and getting older. He knows a birthday means he picks his dinner for that day. Birthdays here are always bittersweet. It's hard not to be aware of where we should be.

Over the past year I have felt God working on me more than Sammy. I have felt him nudging me in directions I wasn't ready for. So much has changed in the last few years.

I spent a lot of time railing against autism and being so angry. I personified it and hated it. I was hurt and sad all the time. I felt like I was fighting for my son's life and because I was so busy fighting I disconnected from Sammy in ways I swore I never would. What I found was that the more I released my connection, the worse things got here. After a few really hard months where we considered hospitalization and medication, I stepped back. I looked around and I wasn't happy with what I saw in the mirror. I was so absorbed with his "issues" that I forgot he was a person. I forgot he was my baby, just like all the others. I forgot who he was outside the autism. I let autism consume him and me!

How could I let that happen? Wasn't this what I was fighting against?

I have never prayed so hard in my life as I did after that moment of realization. I cried bitterly hoping that my dear boy would forgive me. He of course did. I am still working on forgiving myself however.

What I see now is very different. I can't really put it into words in a way that makes sense yet. I have been trying to write this post for days now and it wouldn't take shape until today.

So who do I see when I look at my boy.

I see an almost 8 year old with fluffy blonde hair and blueberry eyes. He has a wonderful gap between his front teeth that makes me giggle when he smiles. I see a boy that is so strong and well built that each muscle has perfect definition. I see a boy who has learned to ride a bike and conquered (mostly) his fear of water. I see a boy who is learning to read and write. I see an amazing young man with a thousand possibilities that I didn't think existed for him. I see my boy, my sweet angel of a son, with the power of God in him, because he too, was fearfully and wonderfully made. I see a boy with potential and charisma and an absolutely wacky sense of humor. I see the gift God intended him to be, with autism. It is exactly who he is. Yes, Sammy is autistic, and blonde, and tall, and well built and amazing.

So his birthday will come this year and it will go. I may feel sad even though I try not to. It's OK, God's not done with me yet, thankfully.
there will still be days and times that I will rail against the issues. there will still be times where I fight and cry and kick and scream. I hope you all won't hold it against me. At least now the difference is...

Sam and I are on the same side.

Sometimes I Waffle

It's back to school time soon and kids are out shopping, both with and without parents. I see my sons' friends posting about going to The Gap and Hollister and suddenly I feel like I missed something. Like I have forgotten to show up at the parent Olympics and that makes me a failure.

You see NONE of my kids have ever bought a thing in any of those stores. We have been given them as gifts and I love them, but we have personally never taken our kids there...ever. They have never been in any of those stores for the purpose of school shopping. We usually school shop at thrift stores or they wear hand me downs.

Shame on me?

No, this is where I remind myself I am not creating carbon copies. I want my kids to understand the label doesn't matter.  Not with clothes or people. That's my job right? I am not saying that shopping at those places is a bad thing, it just isn't OUR thing. My oldest boy refuses to even wear clothes with labels any more. Refuses. AJ doesn't mind.

My Boys and their buddy playing a card game Their buddy invented 

AJ starts high school this year. I want him to fit in so badly. I thought about buying him the "cool kid" stuff. Then I thought about it. AJ is freaking awesome all on his own. He is thoughtful,opinionated,intelligent, and strong willed. He doesn't care what other people think most of the time.

It's hard to be different in a world that says it's all about what you wear, do, think, say, eat, drive, and live in. It's hard not to care.

If I am going to raise these kids to be their best, then they deserve to understand that labels are for food and nothing else.  Because no where else will a label give you any idea of what is inside a person. People should be judged on character, integrity and tenacity not on how much their shoes cost.

But sometimes, when I see all of their friends in the nice cars,clothes and houses... just sometimes I waflle

My Heart Flew Away

I sat there as he grabbed his pack and headed toward the door. "He didn't even look back!" was all I could think as I watched him walk away. I watched the confidence in his step and the pride in his movement and I thought "My God where has my boy gone?"

 The boy with soggy shoe laces and muddy fingernails.
The boy who was such a "mamma's boy" that I was afraid he would be living in my basement at 50.
The baby who cried unless he could see me.
Where did he go?
Where did this grown man come from?

I still see that little boy with the round soft doughy cheeks and bowl hair cut that never sat right in the back. I can still feel his sticky little hands on my cheeks. My God, how did this happen? How did this boy grow up so fast?

Too much time wasted on things that didn't matter as he grew up right beneath my nose. I feel as though I squandered his childhood, as though it would never end. We didn't take enough fishing trips, or cuddle enough, or talk enough... is it ever enough?

I worry about him so far away. He is on the trip of a lifetime and he deserves this. I worry that traveling as an Aspie can be hard or even dangerous. He is with people who know him. They know he would loose his head if it weren't firmly attached, they know how forgetful he is, they know how easily he misreads things. I know he is safe and capable.

After all hasn't that been what the last 17 years were about? Wasn't my job not just to care for a child but to raise a thoughtful,loving,well rounded, capable young man? With that thought, I watched him walk through the doors of the terminal and not look back for a second. I saw a capable young man who is simply AMAZING. I saw my heart walk away with a 5' 6" body and size 12 shoe but in my head he was still that soft little boy who fit perfectly in my arms and cried when he first went to school.

Someday, I may dance with him at his wedding and I pray he will indulge this crazy old woman with a moment to relish in who he was, is and will become.

I Won't Give Up

Things are not easy here with Sam right now. I know we go through these phases with him all the time. I know it will get better. I know it will be fine...eventually. Until it does I keep listening to this song




Because no matter what I will not give up.He has worked harder than I ever have. I owe it to him to ALWAYS be in his corner... I won't give up because he doesn't.

The Butterflies

A few years ago someone gave Sammy a butterfly for his birthday. Well not a butterfly so much as a caterpillar that would become a Monarch Butterfly. He fed it milk weed leaves. He stared at it for hours. He named it Lukey (after Luke Skywalker of course). It turned into a butterfly a few weeks later in our living room. It landed on Sam's head and stayed there while its wings finished drying.

We set it free in our driveway. It sat on Sammy's finger unsure of what to do next. Then, suddenly it took flight. zipping around our trees and flowers. It seems elated to finally be a butterfly.
Every so often we see a large Monarch in our yard and Sammy calls to it. He will chase it around saying "Hey Lukey, Hey boy!" It makes Sam's day every time he sees one, no matter where we are, he assumes it's Lukey.

It makes me think about Sammy. What will he be like in Heaven when he sheds the cocoon and becomes the butterfly he is inside? What will that be like for all of us? I feel like every butterfly I see reminds me that someday, Sammy and everyone else, will be free. Free from the sensory overloads, the anxiety, the stress, and the fear. A place where I can hold Emma. Somewhere I can see those who have gone before me.  I look forward to that day, but Lord, not yet. Please