Every once in a while I wonder –
what will her life be like?
who will she call friends?
how many of them actually will be?
will she be able to live independently?
who will watch after her?
will her older sister feel burdened?
will she be…happy?
Autism Awareness Month is a double-edged sword.
I am thankful that so many out there, including many of you, are so supportive and even pro-active. I’ve witnessed the beginnings of a DOAM-Tree; I’ve seen light bulbs go off in peoples heads and on on their porches; I’ve read the President proclaim the official national observance of Autism Awareness Day.
But I’ve also had the harsh reminder that my daughter has autism – more severe than some, not nearly as severe as others; I am constantly reminded that her life will not follow the path of her friends, her cousins or her sister; I’ve watched as she struggles to initiate social interaction and keep up with those that are moving too fast to slow down, even at her own birthday party; I’ve watched as the events of a day simply prove too much, leading to an evening of uncontrollable crying; I’ve impotently stood by, knowing there is nothing I can do other than to just be there with her.
And that is when the cracks come.
I do a pretty good job of holding it together most of the time. My wife is the cryer – she likes to say she and her side of the family have leaky eyes. It’s not a negative or positive thing – it is just who they are. In part because of that though, I have built a wall to keep my tears on the inside. It would do our family no good if we both ended up in puddles of tears. I will and do cry, sob, thrash, scream, lash, break down – but it is always inward, never, if rarely on the outside.
Running has helped with that. Much of the raw emotional energy that comes from the pain of watching my child struggle has been channeled into 4AM runs – I try my best not to run angry, but sometimes I have no choice.
But you can’t run away from pain. You can’t run away from hurt. I can’t run away from autism. I won’t run away from my Brooke.
And so the cracks come, and the eyes begin to leak.
As quickly as they come though, a finger is put in the dam and the leak is stopped…for now.
what will her life be like?
who will she call friends?
how many of them actually will be?
will she be able to live independently?
who will watch after her?
will her older sister feel burdened?
will she be…happy?
[tweetmeme source=”luau” only_single=false http://www.URL.com%5D
Run Luau Run 
When our son Christian was diagnosed with Autism, I took up running.I have always hated running but I needed to know I could control something,so I run (actually, thats a stretch, I jog) and now it feels good. I turn the ipod up so loud I cant hear myself think.I ask myself those same questions as does my husband.And I also have leaky eyes (often after Jess’s blog and sometimes after Katies).Brooke will suceed and she will be happy.It will be in her time and on her terms.But she will.And she will because she has the support of an amazing family and lives in a time where kids like Katie exist.Kids who understand ‘different,not less’.Kids who raise awareness for their siblings and millions like them.Kids who care.
Thank you Dearna. There have been countless times that I thank the stars that Brooke is growing up today rather than when we were kids.
i know, babe.
i know.
😉
Thank you as always for laying it all out there and telling us how you feel.
I think when you do that you always help at least one person understand Brooke’s (and your family’s .. and other families with kids on the spectrum) world just a little bit better.
And that creates ripple effects that led to empathy and understanding.
Thank you Paula for always being so supportive.
Both of your blogs give me leaky eyes. My wife will tell you that I’m the outwardly emotional cryer of the family. I get it from my Mom I guess. Funny thing is, I mostly cry for you because I can empathize with you. Not because either of my daughter’s has autism (“There for the grace of God go I…”), not that we would really know yet (at 7 months old and 4 years old), but that’s not my point. As so often happens, I find my self in tears after one of your posts (or DOAM) because I empathize with you as a PARENT.
I don’t know if it helps or not, and I’m certainly not trying to trivialize your feelings or be patronizing in any way, but we all have similar hopes and fears for our children. You two are uniquely talented in being able to put those hopes and fears out there so that anyone who is a parent can empathize with ASD families. It is a gift. You guys are WARRIORS! Keep fighting. I love you.
ok…that made me well up a little…but in a good way!
It’s such a battle everyday. Some days victory and some days a loss.
Some morning running in fear, some in anger, some in joyous celebration over an accomplishment finally achieved.
I worry every waking minute about the same things.
At least we are all in this together. We’re changing the world for our kids.
xo
Jersey
I’m glad that we are in this together…we are in good company!
We call it the weepy gene in my family – I never had it until my son was diagnosed. This one got me today. I started running last year with the goal of the Flutie 5K because it meant something to him and me. It was my way of plugging the cracks. But those fears will always be there. Always.
Hopefully as a society we are taking steps, however small, towards minimizing some of those fears. We build the nets as best we can so there is something or someone to catch them when they fall.
I’m right there with you … I think subconsciously I’ve learned to pound out my frustrations through my legs. Not sure why. I’m kind of numb to it and don’t know what to think. I love my son, but I don’t search desperately for positives about the autism that is severe enough that he will never live a typical life. I hate it and I’ve pretty much decided that I will fight autism for the rest of my life.
We don’t have to accept autism and find reasons to embrace it. It’s Autism Awareness Month … I’ve chosen to make people aware of how and why autism is such a bad thing. Glad to see I’m not alone!
You’re a great dad. Thanks for sharing your story with us. Very touching.
Thanks DP. Much appreciated. See you in Hopkinton!
Running out the anger, frustration, pain – works for me. Your family is so very special to me.
Thank you gail.
I echo everything Doug said, as I my eyes began to well up this morning when I read this. Touching post Luau.
It means the world that I’ve got people like you and Doug out there! To quote the Golden Girls, “Thank you for being a friend!”
I know how you feel, my son has Aspergers and other mental health conditions and so much of my frustrations are worked through when I run or work out. Today I did a body combat class and didn’t know I was so mad and frustrated with the events that transpired in the past week until I started crying mid class while punching the air.
With out that outlet, I don’t think I could be the strong mom I need to be.
Keep fighting Marissa! We’re making the world a better place for our kids a little at a time.
I had to wait to respond. The tears came easily as they often do when I read your wife’s blog, and I had way too many thoughts swirling in my head.
I wear many hats, mom, psychotherapist, homotoxicologist, warrior austim advocate and, the warrior advocate/mom says, you stole the words outta my mouth. While Aidan has come so far and is nearing the end of his journey, there are still rough patches and probably always will be. He will never be “neurotypical”, he just won’t. Have I accepted that, hmmmm…..
The therapist in me says when the feelings come up, get them out and don’t bottle it up. But, I have a husband who runs into burning buildings for a living and so I get the stoic persona all to well. You need to maintain that calm demeanor AND you have running. Running allows for a lot of things in your life, so I have learned in the last few posts. And for that, I thank-you.
Thank you Sheila. I always appreciate your support!
“Funny” how reading this is like looking in a soul mirror. the same questions I ask myself about Sophie all the time. Once again, this morning as my mom was telling a story about one of my nieces (without the Spectrum) I told her how Sophie sis so much of a blessing being the way she is; unlike her cousin that is manipulative and careless for others at 6 yrs old… Sophie is the exact opposite, loving, caring..I am not saying it’s a good thing she has Autism, but it brings the good out of her and that’s why so many people love her, because of who she is, not because what she has.
I know the feelings exactly as you describe them. Cry if you have to cry, it helps to cleanse the spirit. If you ever need a friend who understand exactly how you feel, I am here. God chose us for a reason, and I can say that because you are a great that and man.
I am so grateful for our friendship. Hugs
I am grateful that we have become friends. Maybe some day your Sophie and my Brooke will be able to meet and become friends as well!
Sorry I meant “a great dad and a man” I can’t type today :s
Luau, I wonder those exact same questions about our son. My wife and I both take comfort in believing that the good Lord would not give us anything more than we can handle, and that we are better equipped (as I’m sure you and Jess are) at handling such challenges than many other parents we know.
And maybe we’re lucky in that neither of us seem to have leaky eyes, which surprises me about my wife, as she does in many other situations – maybe it’s her training or experiences as a pediatrician, seeing far worse tragedies, that equips her to cope so well with a child with autism.
Glad the running provides you the productive outlet for your worries and frustrations.
we rise to the challenge, right?
Like Sheila, I had to come back later to comment as you triggered my (easy) tears. (I suffer from the *worst* LES – Leaky Eye Syndrome)
Your writing today touched me for a very different reason; my husband. He is a stoic all the way down to his nordic roots. I’ve seen him cry once in the nearly fourteen years we’ve been together. He goes to the gym every night after dinner. Sometimes I want to whine “what about our time?” and ask him not to go—and sometimes he does take a break. But I remind myself that this is his only outlet for himself; I imagine he, too, sometimes runs in anger or frustration as he pounds out the miles on the treadmill.
Thank you for the perspective, for the reminder that there is much going on beneath the calm exterior. xo
you rock, matt: keep running. seems that jess’s posts make everyone cry. glad i’m not alone. ps brooke is lucky to have parents like you–and you, to have brooke (and katie) as daughters.
thanks candace.
Thanks for your thoughts. My ten year old daughter was diagnosed with Aspergers a little over two years ago. We just returned from picking her up at a social skills class she attends.
Things didn’t go so well today and I was once again asking myself the same questions you presented in your post. I do almost all my runs in the morning to not take away from family time. Tonight I went on a short run after we got home. Running doesn’t change her situation but it helps soothe my cracks and keep me strong. Thanks again.
thank you for sharing rod. hopefully this generation of kids are growing up in a world where they will be more likely to be embraced by their peers. keep running!
I understand. I truly understand. You, Jess, Katie and Brooke are all incredible.
Love you all,
Mom
thank you Grammy!
I don’t run. I pound clay. But every word you wrote resonated with me. Some days…it’s all just too hard. But I’ve met you, and I’m blessed enough to call your wife my friend, and I know there is nothing you won’t do to make your daughter’s life as successful as possible.
That would be awesome if our little angels met each other ! 😀