Susan's Blog

Wednesday, September 8, 2010

I wish

I wish I knew, I wish I knew

What makes me me what makes you you.

-Cat Stevens

I’d thought myself too old in this regard.  So often I feel like I’m supposed to be a role model.  Beyond it all.  Well, not beyond it all, but wise and easily recovered from it all.  I’m the future, some people feel.  But I forget that I’m also the present.  And the past.  The usual state is that the waves of pain subside, it feels like an eternal low tide.  But when it rises, it has the strength of twenty years.  I fear the ocean.  I love the ocean.

There will be a flash of something, something I forgot to do, something I’ve lost.  A song, forgotten in my shuffle. It sends me back to you, my darling boy.  I can’t help it, please forgive me, I feel heartbroken today, because I just wish I could talk with you.  Really talk.  Hear your thoughts.  Have you want me to hear your thoughts. I wish I could make you less alone.  I wish I knew how you felt about life, how much you know.  I feel that I know, but just once, I want certainty.

There is no blame here, no one’s at fault.  That’s what makes it so hard; no one to be mad at.  I like to know why and who.  But I can’t.  I have to go by my heart, by the air, it slips through my fingers.  Strength is about having strong fingers.  Strong heart.  But how can a heart be strong and soft at the same time?  How can a person be so silent?  What happens to the life teeming in your brain?  Where does it go?

I want it to come out.  I want to hold it in my arms.  I want it to come to me.  I am tired.  You’re so alive.  Come to me.


Sorry if our expectations weigh on you. This is achingly lovely.

— added by gretchen on Wednesday, September 8, 2010 at 1:43 pm

I have two boys about Nat’s age. They’re in college and they can talk and all good stuff like that but they don’t open up their hearts and souls and share their dreams, their hopes, their fears, No. Boys don’t roll like that, at least not straight boys.
They do, however ask me to sew on lost buttons, do their laundry and cook their favorite food. They ask to borrow money and drive my new Mercedes and whether they can let their friends move into the pool house.
So don’t feel bad; you’re not missing much.

— added by Sunni on Wednesday, September 8, 2010 at 7:30 pm

Sometimes others (who are trying to make it better and lessen their uneasiness with what you just shared) will say things that are not therapeutic and why would they – they are not therapists. Still, we expect them to know, I know a little of which you speak- a pain a yearning that does not go away and is not comforted or quenched by anything. A desire and a dream that was born before they were and will not die until you breath your last breath. There are times in life when it is more appropriate to say nothing and to just listen. I have listened to you for a long time- you speak though your writting I hope that you understand that your writting influences parents which in turn will have an influence on their voiceless children.Keep on wanting that dream – it speaks to how much you love you son and always have.

— added by KRISTEN on Wednesday, September 8, 2010 at 10:34 pm

I would want to know too. Love to you.

— added by Stimey on Wednesday, September 8, 2010 at 11:32 pm

Are you freakin’ kidding me Sunni? “Don’t worry, you’re not missing much?” You have to be the most insensitive person in the word. How can you say to the parent of a severely autistic child that they’re not missing much? Your boys are typical and will have a normal life. Get a clue. This is the most sickening comment I have come across in a long time.

— added by NG on Thursday, September 9, 2010 at 8:03 am

Let me add that life sounds rough Sunni. If your biggest worry is your boys driving your new Mercedes and asking freinds to move into your pool house then you are more out of touch than ever. A rich snob that has no clue. Even worse.

— added by Dee on Thursday, September 9, 2010 at 9:09 am

I am not an autism parent, but am a provider for a variety of kids on the spectrum. I would like to take this opportunity to thank you. You are the future and you are strong. Your honesty and your continuing to think, feel and struggle through this is what makes you a role model. I don’t know that any of us; parents, teachers, physicians, psychologists, aides, etc. ever feels like they have any of this completely figured out, but you continue to teach us all about the process of living with that uncertainty. Thank you for sharing this with us.

— added by bec on Thursday, September 9, 2010 at 10:02 am

Oh, I didn’t mean for there to be a pile-on with Sunni. I took her point to be that “typical” boys present their own bag of trouble; it’s all about perspective. As my great-grandma used to say, “we all have our own sack of troubles, and if we set them down and had our choice, we’d still pick up our own.” I don’t envy Sunni’s her “normal” boys. I just meant that I felt very very sad about not being able to “access” my Nat. Of course it is also difficult at times to connect with Max and Ben, also, who are supposedly typically-developing.

— added by Susan Senator on Thursday, September 9, 2010 at 2:15 pm

When Sunni adds that her big dilemmas are her boys driving her $50,000 vehicle and misusing the pool house well, it’s just a ittle difficult to sympathize with that when many parents are praying their child utter a word or use the toilet before 10 years old. Sorry, Sunni sounds silly to me!

— added by Melissa on Thursday, September 9, 2010 at 2:50 pm

((hugs)) Making me cry, Susan. Our kids are very different, but we have similar emotions. The grief comes and goes and sometimes comes up unexpectedly. You described yours so eloquently. ((hugs))

— added by Brenda (mamabegood) on Thursday, September 9, 2010 at 7:36 pm

Well, this made me cry. Sometimes I’m so wrapped up in the day-to-day minutiae of autism I forget the heartrending aspects as well. I need to remember them too. Thank you for sharing this.

— added by kim mccafferty on Friday, September 10, 2010 at 10:25 am

If only we knew – we could build the right supports around them. Until then, it is a guess. Thanks Susan for sharing this.

— added by Jane in Wisconsin on Saturday, September 11, 2010 at 10:13 pm

Yes, Susan. I know it well. Thank you for putting it into words.

— added by Penny on Sunday, September 12, 2010 at 10:05 am

Susan, one of the most beautiful images I can think of is when Jared rests his head against mine. It’s such a sweet moment, a gift. I almost want to grab his head to extend the moment, but that would ruin the voluntary moment of closeness. Love those.

Thomas cuddled up during story time, yawned a few times, and sweetly said “Mommy, what is a douchebag?” After I returned my eyes to their sockets, I replied, “Well, that’s something a lady might use to clean her vagina.” He said, Hmmm, vagina…..that sounds chinese.” I laughed so hard I almost wet my pants.

So, I vote we luxuriate (sp?) in whatever wierd stuff we get, we might as well. I also find that when I do something completely unexpected, like keep driving around the rotary, it jostles something in both my boys, mostly giggles. I’ll take that any day of the week. Lisa

— added by lisa on Tuesday, September 14, 2010 at 11:48 am

Susan, You expressed this so beautifully. My boy is 9 and this weekend he came over to me and lied down on the couch and just put his lips on my face. Then he turned to continue watching Sesame Street, then he put his lips back on my face and back and forth for a sweet 20 minutes. I drank every moment and enjoyed but was left with everything you wrote – What are you thinking my sweet boy I wish I could know. I wish you could tell me something besides “cookies please”. Thank you for sharing.

— added by Diana on Tuesday, September 14, 2010 at 12:52 pm

Beautiful words, Susan.
I think there are some song lyrics in there as well.
Thank you for being a role model to so many, though I know the task must seem daunting at times since you are still very much in the midst of it all as well.

— added by Debbie T. on Wednesday, September 15, 2010 at 5:38 pm

I believe that if I keep trusting in the God of my understanding, and just keep loving my son through the good, the bad and the almost-unbearable, that there will be a happy conclusion to all this…either here or in eternity…it will come. It will happen to you too…be strong.

— added by Candy on Thursday, September 16, 2010 at 10:21 pm

Hi Susan
I have an almost 5 year old son Samuel who is just starting to talk (“I want ketchup” or “I want Veggie tales” and counting to ten!) I have been so excited but there is something that I can’t put into words that is still there hovering behind the excitment, and your post has spoken to that. I have waited so long to hear his voice and now that I have, I am left with a longing for more! thank you for sharing and putting into words what you are feeling, it helps me look at emotions that I am hiding even from myself.

— added by Suzie on Friday, September 17, 2010 at 9:31 pm

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