My Heart Monday ~ Insults

To the lovely person who referred to my boys as birth control,

    Please understand my boys are NORMAL boys! The way they should be. I am frightened that you teach. I am glad you aren't teaching my boys. It frightens me to think you will have influence over peoples children. To top it off you are a special needs teacher. Thankfully you aren't in an age group I need to worry about any time soon.

    My boys are awesome! You have no idea what you're missing. You are just too young to understand still. Please, don't have babies any time soon darling. Not until you grow up and understand how hurtful and rude your comments were.

    At first I was really sad that you said what you did.  Then I was angry. You are a teacher after all, a special needs teacher. If anyone should understand energy and childhood exuberance it's you. Then I thought about how much your missing out on by not knowing my boys. So now I just feel sorry for you. You are missing out.

Feel free to read this GREAT article about REAL boys. 

The Level of Pain

Dear Soccer Parent at the JV Soccer Game,

   I heard what you said. In fact everyone heard what you said. If I had not been so busy keeping my child from hurting himself I would have confronted you. Your ignorance infuriates and astounds me. While it shouldn't it also hurts my core, because I love my son more than life itself.

You have no idea what we have been through with Sammy. You can't possibly understand what he has overcome. I pray you never have a child like Sam, because you don't deserve the awesome that kids like him are.

Autism doesn't have a look. It doesn't have a telltale sign that says "HEY SOMETHING ISN'T NORMAL HERE."

 I am sure you're the perfect parent and you have never had a tough time with your child. I am sure your child never back talks or gives you a hard time. I am also certain that rainbows and unicorns fly out of my ears every morning when I wake... oh wait.

I know I will see you at the next game. I plan to sit right beside you. I plan on letting you know exactly how awesome my son is. I plan to make sure you know I heard you and that in no uncertain terms that if it happens again they will be removing me from the field.

I am not a violent person. I don't agree with physical aggression.

You can dislike me all you want. Feel free to talk about me behind my back. Feel free to say whatever you want about my clothes, hair, body, temperament, teeth, or parenting.

HOWEVER, let me be very clear.
TALKING ABOUT MY CHILD IS OFF LIMITS.
IF IT HAPPENS AGAIN I PROMISE YOU IT WILL NOT END WELL.

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.

The First Day of School.

Sam has been anxious most of the summer because he knew school was coming. It turned out just fine in the long run, but we had some anxiety that first day. Then we missed the bus by about 2 minutes. My mom came and we drove him to school. He froze outside of his classroom but one of the para professionals he works with was able to assist us and get us into the room.

I watched the little girl he would be sitting with greet him. I watched her smile brightly. I watched the teacher shake his hand. I watched his friends smile, obviously happy to see Sammy.

I also saw his fingers by his side fluttering a mile a minute. A sure sign he was stressed. I watched him as he sat in his chair and tapped the desk with his finger. I walked away after a brief wave goodbye, but I saw panic in his eyes. It took every ounce of strength I had to not take his hand and bring him home. I wanted to rescue him from his anxiety and stress. I wanted to make it better for him. If I had a magic wand at that moment I would have moved the world for him. Instead I walked away. I walked away because it was what he needed me to do. I walked away because if I had stayed one more second he would have seen the tears in my eyes. I left the school with my eyes stinging and a heavy heart. He was scared and there wasn't anything I could do but walk away.

He did enjoy his first day. I missed him so much. Of course I was happy to have him home ... until he punched Nate in the chest. Then I began counting the hours until the next day of school!

Police Department

Today we brought Sam to the police department in our town. For the last few weeks Sammy has been unbuckling while the car is moving. He knows it is dangerous and he knows it makes me crazy. So, what does he do? UNBUCKLE!

 I warned him last time that it is against the law and I could get in big trouble. I reminded him how dangerous it was. He thought it was funny. I warned him that the police would not find it so funny. He decided he wasn't afraid of the police. Guess where I took him?

YUP



Dan went ahead of me and let them know what they were dealing with and I showed up with Sammy. The officer was awesome and Sam was flippant. The officer told him at one point to face him and Sam laughed and turned around. UGHH ballsy to say the least! I went over and turned him around to face the officer. Mind you, the officer was not asking for eye contact, just a little respect. the officer handled it so well and had just the right bit of edge. Normally I wouldn't go to these measures, but this is something serious. I am not a fan of scaring kids but this needed to hit home. The officer even showed him pictures of some crushed cars and explained what could happen to him in an accident.

Then the officer made it all come together. He told Sammy "Your mom loves you and doesnt want you to get hurt Sam. If you can behave and wear your belt , no more unbuckling, you can come down and I'll give you a tour of the place. How's That?" Sam lit up like a Christmas tree . Lets hope there aren't any more issues.

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

Mud Pies and Mondays

We have started filling barrels with rain water for the garden. The kids love watching the barrels fill. They really love grabbing out buckets to feed the plants a drink. Sammy knocked it over. 30gallons of water down the driveway. It resulted in a huge puddle of mud. Big enough for Sam and Nate to lay down in it. They covered themselves in it. Nate filled his pockets with mud ,so that it ran down his legs. They doused themselves in it and played so happily   He had the neighbor girl cover his head and back in it. They filled buckets with it. I soaped them up and hosed them down to clean them off. They giggled and laughed and enjoyed every single minute. Then after they dried off, Nate  went back into the mud once more.. I remember mud as a kid. The soft silty feel of  it in your fingers, on your hands. The squish of the warm summer mud between your toes. The smell of the earth and the clean. Dirt has always smelled clean to me. I may or may not have even put my own feet into the mud with them.

It brought me back to a childhood spend in my grandparents back yard. Digging in the garden and pulling up rocks. Playing with earth worms and centipedes beneath the willow. It reminded me of my grandmother bringing out giant pots of boiling water to add to the pool so we wouldn't catch cold. It brought me back to the melted ice cream running down my arm, my aunt Angie bringing me milkshakes from across the street and Vavoo teaching us how to pop the grapes in our mouths without the skin. It brought me back to a simple time when time didn't exist and all that mattered was how much sunlight was left to the day. Authentic Childhood. It's what I want for my children. I want them to think back and feel the sun on their face and remember the smell of the air. I want them to know they were lucky to enjoy the sunshine. That boys can make pretend soup and girls can play in the mud. I want them to know it's ok to get dirty and have fun and climb fences. I want them to remember their childhood with passion and rainbows.I want them to look back and remember happy sunlit afternoons,warm starry nights, and every single moment in between.  

I don't want them to loose the happiness they create because they grow up. I don't want them to forget how amazing it all can be. Please Lord help us all to remember what fun it can be to simply make mud pies.

Chasing Sanity

Sometimes the emotional roller coaster of my life gets to me. We seem to be on a down hill slalom here. It's always hard to watch Sam fall apart bit by bit. It's even harder to be feeling out of sorts myself when this starts. I kind of feel like I'm trying to out together a tower and the Earth underneath just keeps shaking. I can't seem to get my footing. It's hard feeling like I am in the thick of things I cannot control.

It's days like today, when Sammy wakes me with anxiety and stress, that I try to remember the happy. I try so hard to find that smiling boy with the fluffy head. I look back at pictures from so very long ago, of family vacations, and I long for the happy.

Part of me struggles with the reality that I live with. I wouldn't change it for the world, but it doesn't mean it's easy. There are so many out there with bigger and heavier crosses to carry. I feel silly complaining. I know it could be worse, but right now this is what I know. Right now this is hard. Right now I wish I could go back.

Back where? I'm not entirely sure. I have always struggled with being depressed. I can't remember a time when I didn't struggle with it. From the melodramatic kid to the sullen teen to the tearful mother, It never really changed. I never changed

I wonder if my boy will be the same. I wonder if he will remember his childhood as sad and gray. I wonder if he feels as lost as I did at his age.

That is harder to think about than anything we may be dealing with right now.

So Today I need happy and I need a smile.

Missing the Point

 Joe Scarborough speculated on his MSNBC Morning Joe program that James Holmes, the man who just killed so many people in Colorado, may be on the spectrum.

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

He did offer some sort of half-hearted , ill prepared statement that was some kind of attempt at a back peddle. It was not an apology.


“During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.


The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently …”


I am having a hard time wrapping my head this. How does a parent of a child on the spectrum draw parallels between an obvious sociopath and our children!

Part of me though, gets where he is coming from. You see , Sammy has some very violent tendencies.  We have worked hard to overcome them. However, I don't think they are because he is autistic. I am sure the frustration level is exacerbated by the things that go along with autism.   I wonder if Mr. Scarborough is dealing with some issues in his own heart because of his child's issues.

I don't want people to be afraid of my son. I don't want people think that he is frightening or dangerous. I don't want people thinking that my life with Sammy is such an ugly burden that I would rather not be living it.

I want people to know there is light and sunshine here, right beside the hurdles. I want people to understand that life doesn't end because you get a diagnosis. I want people to know, to really KNOW, that having a child on the spectrum DOES NOT mean they will be isolated.


 I want everyone to see Sammy


The boy who loves to dance. The boy who loves to sing. The boy who has love,empathy, and understanding of those smaller than him. The boy who can make me smile so hard that I cry. The boy who kisses my belly, knowing the baby is there. The boy who reaches out, makes friends slowly. The boy everyone seems to like. I want them to see HOPE. I want them to see LOVE. I NEED THEM TO SEE A BOY... not a spectrum, not a diagnosis, not any of those things. Every part of him is uniquely who he is. nothing less, nothing more.




I won't crucify Mr. Scarborough for his careless remarks. I do however feel sad that his son may have heard his words, comparing him to the man who killed people in a movie theater. I do hope his son can forgive him for telling the world he is a "tremendous burden". I do hope if nothing else, that people will understand that autism can't hurt you, but words can.

If you need more information to understand why words like this are dangerous , you can check out these links...

dangers-of-misrepresentation
all-i-want-to-do-is-weep

Also there is a petition asking Mr.Scarborough to retract his statement HERE that was started by Rachel Cohen-Rottenberg

To You

To the woman outside watching my son screaming,

How this family must have looked to you. This gorgeous little blonde child screaming as though I were beating him with hot pokers. You stood there watching us, and I think you may have forgotten to close your mouth. A few years ago I would have been offended and upset. I would have given in to the tirade just to make it stop, because I didn't want yet another person to judge me.I would have gotten in the car and cried until I couldn't catch my breath.

 Instead I looked up at you and smiled. I asked you if you wanted to come and help. I guess I am still slightly passive aggressive. I was always taught it isn't polite to stare.You couldn't decide if I was seriously asking for help. I am almost certain someone called the police as well, after hearing my son screaming. The officers here know us. they know Sam. They know the deal. They drove by, smiled and waved, and kept going. I don't know if you are the one who called, or if it was someone else sitting there watching.

In case your wondering. We did finally get him pealed off the hood of the car. We did finally get him buckled. We did get him to the party. He had a fantastic time.

Snuggle Time

I cuddled up with you today , My sweet fluffy headed child. Your head heavy on me as we lay together on the couch. It's so hot here. The only room in the house with the air conditioning on in this one. You came in to share my space, to be here. At first as I snuggled you I thought you were joining me in my world. Spending time here, instead of there. As i watched your fingers flit through my hair and over my face, I realized that You were inviting me to join you there. In your world.

The world that finds rainbows in oil slicks, and sunshine in lemon. The world that makes music out of wind and rain. The sounds and the textures that we are all far to busy to see. You wanted me with you, and I happily followed.

It's still incredibly warm with your body beside mine as you whispered in my ear "You're the bestest mommy ever"

And in that moment, a split second really. Our worlds met in the middle. My sweet fluffy headed boy, I promise to take more time to find that place that makes sense to both of us. Because you are amazing. Because you are loved. Because you . are. mine.

This Moment

Just one beautiful moment. One sweet moment I don't want to forget. Linking up with Soule Mama today in her delicious link of . One moment, no words.

The Dentist

This past weekend it was a dental day for Sam and Nate.
Nate has a few cavities and Sam had one. We fixed the one Sammy had and 2 of the littlest ones of Nate's.
We go to Perfect Smiles and we see the pediatric dentist there. He is fabulous with kids like Sam and even with busy kids like Nate. Really if your looking for a great local pedi dentist give them a call. Tell them I sent you

Sammy had a rather large break in his tooth and as a result he was in a little pain. The dentist did an awesome job with him. It was fast so there wasn't any chance for a meltdown. He reached out for Dan's hand at one point because the drill made him nervous. Mostly he just watched cartoons.

Nate had a few more cavities. Unfortunately he has my dimpled teeth and inside those dimples were little itty bitty cavities. He has two more between his very crowded back teeth as well that we will address one at a time. Those take a little more work.

They both did fantastically well.

Level II Graduate

YAY CHANCE

 It's official Chance has graduated from obedience school. It's funny how much easier a dog he is. he is so calm and sweet. He is a joy to spend time with. We love that dog. He helps Sammy so much.

The bone that had been the core of the problem the day Grace was hurt has been sitting in out pantry, wrapped and waiting. We brought it out to show him and see if there was still possessiveness. He sniffed it and refused to even take it. I have brought it out a few times since and still, he doesn't want it.

We wont ever give him a rawhide like that again. They aren't good for dogs or my heart... just in case.

We have noticed when the baby is sleeping in her car seat, Chance wants to be where he can see her. If I move her, he moves. They aren't ever alone and he is never close enough for me to worry. He watches her though. It's very sweet.

I don't know this would have had such a happy ending if it weren't for Rick of South Coast Canines. We would have likely put the dog down. I am so glad we didn't. If your dog has some quirky behaviors or even just pulls on the leash. you really should give Rick a call. It's worth it.

A well behaved dog is so much easier to enjoy.

Magical Moments

We don't venture out often with Sammy to traditional places. We go when it's quiet, empty, and safe. That way when (not if) he melts down we can get out fast. We always have an escape plan.

When you have a kid like Sam , sometimes military tactics are necessary!

We dropped Tyler off at BU for 12 days of wrestling camp. The ride up and back was a little rough for Sammy since sitting still is NEVER his forte. We all survived it. We were coming over the bridge to our house and Daniel mentioned the carnival on the other side. I cursed under my breath. My darling husband wasn't thinking that Sammy had probably already had more than enough stimulation for the day. I wasn't happy, the question "how many blocks did I earn" had already begun being asked repetitively.

If we said no to the carnival, there would be a meltdown.

If we said yes to the carnival, there would be a meltdown.

There was no winning this.

So... we went to the carnival.

I prayed so hard that it would be ok. The last time we attempted anything of the sort it started with spinning pumpkins but ended with having to restrain him in the back of the pavilion as he tried to flip the table to get away from all the people.

I just couldn't take a repeat. 

Then the magic happened. 

PURE, UNADULTERATED MAGIC. 

There was almost no one there, and Sam took a minute to gather it all in. He got flappy for a bit and I was prepared to leave. Then he hugged me and told me I was the best mom ever. He tuned in to me, the world around him. For the first time in as long as I can really remember he was 100% present. He engaged. He went on rides. He loved the Ferris Wheel and the Polar Express. It was such sheer joy just watching him enjoy the fair. He asked to buy a water bottle. That was the best 3$ water bottle we have ever bought. We walked home the two blocks. We played on the cannons. We sang and we ran.

We snuggled and watched a movie.

And just like that, the next morning, he was gone. Disengaged and moody.
It didn't matter because now I have that wonderfully amazing night in my head. I know it CAN happen so there is hope it will happen again. What a blessed night we had,truly magical.

Circus

We were given free tickets to the circus and so we went. I kept my expectations as low as possible. I had my escape plan just in case. I figured it would end badly.

It didn't. It was really awesome actually. Sammy wasn't super thrilled but Nate and Grace LOVED it. Sammy did enjoy the foot juggling and has tried to imitate it a few times now. He wasn't really there with us, he was just kind of there. It's ok, any outing without a meltdown is a win in my book.

The kids had their first cotton candy. It was color free and flavor free. Just plain old spun sugar! SCORE!
Sammy enjoyed that. Nate did too of course. Grace did not love it. They rolled down the hill at intermission and played on the playground after.
We went home and all was well. Not a total win but it shows there is some hope yet.

Dear 50cent

Apparently 50cent decided that autistic is the new R-word. Someone insulted him on twitter and he thought a valid comeback was "I've seen your picture fool,you look autistic" 

Dear 50cent,

How dare you. As a man whose name is a number and grammatically incorrect you have got some nerve. You as a celebrity have so much power. YOU have an ability to change the world in ways that parents like me could never fathom. What I would give for an audience the size of yours to listen to what I have to say about how wonderful my son with autism is. Instead you took that power and you abused it. You took innocent children like my son and made them a joke. 

I am sure it wasn't your intention to piss off an entire community of people who spend every day fighting against this kind of crap you put out there. I am sure it wasn't your intention to look like an absolute fool. But you did. So before you start throwing around autistic as the new insult, I invite you to spend a day in our life. One day, of meltdowns and tears. Not just his but mine as well. I invite you to come and sit through dinner here and see what we live with. Before you dare use that phrase, understand it. I DARE you. Or are you too afraid to see the truth behind the nasty words you used. 24 Hours in my life 50cent, I am willing to bet you couldn't handle it tough guy.

This is what autistic looks like

.My son is smart, loving, witty, caring, and intelligent.Perhaps you could learn something from him.

Always,

A Very Angry Autism Parent

What If

I feel stuck.

I am having some minor health issues right now. My kidneys tend to flare up here and there and unfortunately I am dealing with a major flare up right now. Being pregnant makes it harder to deal with. I had too many nuts and not enough water. I was trying to increase my protein intake to make sure baby bean grows ok. Now I'm in pain and on medicine and all of that makes me worry. I have no choice but to take the antibiotics since my kidneys are badly infected and they hurt. Dealing with this on top of some other emotional drama makes me feel yucky. So I feel stuck.

Stuck because I have to take these meds and I don't know that they are really "safe". What if What if What if... It's like being on a never ending carousel ride that plays off key music. I can't quite make it stop and that makes it hard.

I took Zoloft when I was pregnant with Sammy. I was depressed. There were so many hurtful bad things going on in my life back then. Two things in particular that shook me beyond anything I could ever put into words.I couldn't cope, so I cleaned. I would stay up to all hours of the night crying and cleaning. I was out of control and the only think keeping me moving forward was the boys. I needed to be there for them. I needed help, so I got help.

Now there are studies linking Zoloft to autism. Damn it. Damn It DAMN IT! like I dont blame myself enough already? As if the guilt doesn't kill me every single time that kid melts down. As if I wasn't already blaming myself. But it was safe then, or so they thought. I had to do something...right?

So what if these "safe medications" I am taking now change the game plan? What If ...What IF... WHAT IF?

Triggers, Tears, and Blessings

There are those moments in your head when everything swims around like stirred soup. Like soup it settles after a time. I am up late at work and spending time reading other blogs. It's like playing leap frog, from one blog that links another blog, then another. Some are great and so well written and still others I skip over quickly. I ended up on blogs tonight of families that lost babies.

I know better than to read these things. I KNOW BETTER... but I read on anyway. Somewhere inside I hope that somehow I can desensitize myself enough so that if it happens I won't break.  I always end up in tears begging God to not take my babies.I know, that should it happen, there is nothing anyone can do to make it not hurt.  I know better than to think of these things , especially when I am pregnant.

But it places things into perspective for me. It reminds me of how lucky I am to hold and touch and kiss my challenges.
It puts into perspective how blessed I am to be breaking up fights between Sammy and Nate. That when Nate has woken me up from my nap 134,543,345,345 times, that I am lucky that he wants just one more kiss from mamma. It takes the frustration I feel over curfew arguments and dating rules and reminds me I am blessed. My kids may forget to do their laundry and have messy rooms... but they are here. So for today the dishes can stay in the dishwasher and the laundry can wrinkle alone in the dryer. I am going to hug my kids and love them today. I am going to count my blessings and carry my crosses, because heaven knows...

I am blessed

Fireworks, Cannons and Cars

I want to surprise the kids with an early morning outing tomorrow to the local beach. There are these giant cannons at the beach, and the town will be firing them off tomorrow. I want to surprise the boys with this, but I can't. In our house, if we include Sammy, there can be no surprises. Not even good ones. He cannot take the pressure of it and it makes his anxiety sky rocket. I can't just prepare him because he doesn't understand how to keep secrets.

he dug a hole and stuck his head in...

I will tell him in the morning before we leave, but not too soon before. If he has too much time to think about it, he will melt. If I don't give him enough time, he will melt.
Holidays are just plain tough. You can see how much he wants to enjoy the fun. He wants to be part of it. Sometimes, he is wonderful. Sometimes he keeps it all together until we get in the car and then he melts down. Sometimes, he looses it right where we are and I can't do anything but hold him and protect him.

We will go tomorrow for 30 minutes. We will end on a good note. I will set my expectations as low as possible. Wish me luck!

Guardian-keeper for life

You, you who has smiled when you’re in pain 
You who has soldiered through the profane 
They were distracted and shut down 


So why, why would you talk to me at all 
such words were dishonorable and in vain 
their promise as solid as a fog 


and where was your watchman then 


I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honor of all, as your guardian 


you, you in the chaos feigning sane 
You who has pushed beyond what’s humane 
Them as the ghostly tumbleweed 


And where was your watchman then 


I’ll be your keeper for life as your guardian 
I’ll be your warrior of care your first warden 
I’ll be your angel on call, I’ll be on demand 
The greatest honor of all, as your guardian 

Reading the lyrics I am sure Alanis didn't intent to speak to me about my son and his autism. Yes HIS autism, because you see, every child's autism is different.  I read that line  "So Why, why would you talk to me at all , such words were dishonorable and in vain, their promise as solid as a fog." I thought that is where we were. I dared him to speak to me, to find words and use them. Even though for years those words made little sense to him. He spoke in phrases he had heard and scripted for so long.  He was so lost for so long it was like watching a giant tumbleweed. He was in pain trying so hard and I didn't get it because I couldn't see past my pain. Where was his watchman then? I was right there, I just didn't get it yet.

I get it now. I hope he knows that. I hope he knows that I am his keeper for life, I will always be his warrior and his angel. I love that boy with every breath that is in me, in ways I can't even put into words. I may not really like his some days, but I always love him. I feel a deep responsibility for Samuel. More so than the other kids, simply because he needs it more.  He needs me more. I feel as though I must protect him, not just from everyone else, but from himself as well. He is a stunning little man and I am so blessed to have him. I feel bad that being with him makes me so tired!

So while I am sure Alanis didn't intend to trigger this post about my son, she did. Thank you Alanis for writing a song I can relate to. The song brought me back and reminded me, that he has overcome so much.

The question

     The last few days I have talked to dozens of people about Sam and Autism. It seems to come up and it seems as soon as they realize Sammy has autism they have questions. I don't mind questions. In fact I love them because if it open up communication between people we level the playing field. If everything is out in the open, parents will get the services they need and things will get better for everyone. Especially our kids!

     The question I get most often is "When did you know?" they rarely label it, they just leave it hanging there. The first time someone asked me I looked at them and asked "Know what?" In my naivety I had no idea what they were asking about.  It's a hard question to answer because it such a lengthy answer. The bottom line is I always knew, I just didn't KNOW.

    I always knew something was different about my boy. He stared at me intently from the day he was born. I remember sitting in my hospital room looking at him. I was unnerved that he looked like he both saw through me and into me all at the same time. It is the same look I get from him now whenever I get real meaningful eye contact. It's like he can read my heart like a book.  He never looked at me when he nursed though, it was always all business.
     I remember him at 9 months old. He didn't have an ounce of separation anxiety. I remember joking with my husband that it was like he didn't even know I was his mother. He would hit and laugh and if you corrected him nothing happened. He didn't cry at raised voices. He would wake us up at 10 months old with a video of veggie tales humming and rocking. We thought he was singing the theme song, yeah not so much.

     I remember him at 18 months retreating into his world, pulling away, and becoming angry. He would run from us everywhere we went. he wouldn't sit still at the table. He stopped talking, he stopped moving forward. The cars that he would once roll back and forth sat lined up along the floor. His blocks lined up by color as he stacked them over and over.
     I remember him at a family Christmas just after he turned 2. I remember how he darted around and frustrated everyone there. I remember that no one connected to him. He didn't even want to open gifts, we ended up outside in the cold spinning in circles.

     I remember him at 3 when his little brother was born and he would softly touch his head. I remember the fear as Sammy would flip out near the baby with his arms and legs flailing everywhere. I remember him squirting his uncle with a water gun and for the first time ever he cried at being yelled at.
     I remember sitting in the office being told that my son had autism. I remember thinking at first that the doctor had to be wrong. He was just young for his age and immature. He must just have ADD. Then I cried.

Somewhere inside though, there was relief because it had a name. This entity that was taking the joy of raising Sammy from us. I demonized it but I knew it was right. I knew all along, I just didn't want to see it.

I use to say that because of it I lost precious months and years of help he could have had, and while yes that is true. It's only half the story.

The other half of that is nothing would have changed who he is. My fluffy headed wonder child with the blueberry eyes and electric smile is still the same boy on the inside that he always was. Autism didn't change him, it was always there. Autism changed me. It's still changing me in ways I haven't put into words yet.

So when people ask I always say "I always knew he was special, I just didn't have a name for it" That, is the absolute truth.