For My 1 in 88s

My darling boy, my sweet sweet Sammy. You can't possibly understand how very much I love you. Too the moon and stars isn't even close and 10-100 is too small a number. My darling feather headed boy, you light my days with your smile and hope. You shine  through your beautiful blue eyes like nothing I have ever seen before. I cannot imagine my days without you. I love you so much, your being, entwined in  my heart strings. I keep you close by and hold tightly because I don't know what your future holds. You asked me tonight to check your brother to make sure he was ok, one year ago that would have never happened. The moments and phrases that are uniquely you make my heat leap with joy and pride. Seeing your beautiful school pictures come home, with your hair that you combed yourself. You are a powerful force my boy. You are amazing in so many ways that even we haven't figured out yet. you have made me aware of emotions I wasn't entirely sure I could feel. I am grateful to be your mother.

Even in your darker moments, my fluffy headed boy, your being resonates with everything around you in a way I have yet to find words for. You are often so connected yet detached, happy yet sad, angry yet joyful and always uniquely you.

My sweet fluffy headed boy I hope you know how much I love you. That someday, when your "big as daddy", you will read these words I have written for you and smile. You will picture me with my arms wrapped tightly around you and my nose buried in your hair and you will remember what it was like to be  little. I pray that you will be happy with where you have been, who you are, and what you have accomplished. You see for some of us, things come easy. Yet, we still give up, we still complain and we still get angry with God because we just don't understand.

 So for now I want you to know.
 I WILL NEVER GIVE UP ON YOU.

I have done something out of the ordinary, something hard and scary for me. I signed up to participate in a half marathon for you. Because I can't fix so many things that are difficult for you, the least I can do is step outside of my comfort zone, raise a flag, raise awareness ,raise money for autism. I am doing this for you my sweet fluffy headed boy, because after all the determination you have showed me in you life it is the least I can do.

I hope someday you look back and remember how very much I loved you. I hope you read this in 30 years and it makes those difficult moments less painful. . I can't eliminate sorrow or stress, I can't make the world bunnies and tea parties. I can't save the world. But you sweet fluffy headed boy make me really believe I can.


And as always Linking up with Shell over at Things I Can't Say

I am That Mom Too

 I read THIS at Things I Can't Say I sat for a few minutes before I could even respond. You see it is so hard to type a reply when you have tears in your eyes.

I am that mom too, and  I know it.

I use to be the one who thought "I would never let my child speak that way"  I think I may have patted myself on the back a few times thinking I was good at this parenting thing. Then along came Sammy and he changed the game.

I realize now I have no clue what I am doing.

Sammy can be (and often is) the most amazing loving sweet child. He leans on me and kisses me without warning. He loves me, I know he does. When Sammy gets mad all bets are off. I have been called vile, horrible things. Words I have discovered were learned when the older child put music on my iPod. It takes everything I have to not loose it in those moments, because lets be real here, Sam is a child with such a limit on his understanding. I have begun telling him that it hurts my feelings. He seems so shocked by that every time.

Everyday at least once, he tells me he hates me, that I am a moron. He wants a new mommy, I am a bi***. People stare, they comment, they intervene.
Guess what ? I know you are trying to be helpful. I know you mean well. Please, You aren't helping. If you see me or another mom like me, don't offer advice, offer chocolate or wine. If you aren't going to give me a vacation for free then please don't give me that look that says "poor you". Do not tell me I need to spank him, scold him, call the police, parent better, parent more, parent less,jump up and down , spit wooden nickles or say prayers in Latin. The truth is It isn't me, it's him.
I can handle it. I handle it every day, before you and after you. You have no idea what I deal with on a daily basis. Be grateful the child has pants on. A year ago that may have not been the case. This too shall pass and we will be on to something else.

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?

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

Focus and Determination

                                                        
 Katie was laid to rest this week. A painful but powerful process began as 700+ people came out to pay their respects to an amazing woman. I knew her through our parish family of St. Mary's. I still sing there once a month even though I am currently a parishioner at SFX. Katie always sat in front of the piano and was always smiling.  I know her mother Karen, and she is a wonderful sunshine filled person. This week was particularly hard to take for so many reason.
   This community was ravaged by this horrific accident in our town. One woman is dead, her companion seriously injured, and another woman's life changed forever and an entire family heartbroken. Our town will never be the same again I am sure of that.
   Charlie Murphy spoke so eloquently at her funeral, not a single dry eye in the packed house. I had always known Katie as a happy gentle girl. What I didn't know ,until Charlie spoke , was how powerful that woman was.   I didn't know that her parents were told to abort her 29 years ago, that they chose life and they were given an amazing gift. Katie truly was one in a million. She fought for the rights of all differently-abled people everywhere, she spoke in front of crowds that would make you and me pee our pants. She was persistent and tough and apparently also a bit ornery at times. She was a woman with a mission, a purpose, a faith, and a direction. She worked hard, and even when she couldn't find a job she would do whatever it took because "she had responsibilities and needed to get paid". Some people will do whatever they can to not have to work, but not Katie. She worked hard.  I sat in the church silently. I looked around at how very connected Katie was. She knew everyone and everyone loved her.
   I sat there and listened quietly thinking about the impact she had on our world, and wondering if Sammy would ever be capable of that kind of fire.  I kept thinking about Katie's impact on the world and comparing it to Sammy's. Sammy isn't your sunshine and lollipop kind of kid. He is the child that eats whole bags of lollipops in mere minutes. He is so volatile and forceful. However after hearing Katie's friends and family speak this week I am more convinced than ever that Sammy will do great things.
   Katie gives me Hope, huge pie in the sky hope. The kind of hope that makes me want to get up in the morning, and helps me to breath when Sammy flipped about his pants. I listened closely to the stories her friends and family told and I thought... "there is hope for Sammy". I saw differently abled friends get up and speak and  I watched their parents stand beside them. I watched one mans father help him through probably the hardest speech of his life, and a mother reminding her son about boundaries as he spoke. I saw these people with amazing gifts and strengths and heart. I saw people who wore their hearts on their sleeves and felt every feeling like a flag above a castle. Something I have difficulty with.  All of it, every moment gave me unbridled hope for Sammy.
   This is an incredibly sad and difficult time for her family and close friends and there is nothing I can say or do to change that for anyone. I just want you (yes you) to know that through this I have garnered a ray of sunshine and it gets me through the day.
   Thank you Katie for all you have done and for everything your memory will continue to do.
A walk is being organised in Katie's honor check out the face book page HERE you know you want to. Let them know YLMB sent ya