such is the life of autism

by debi9kids on November 30, 2011

I just finished watching the most recent episode of Parenthood after being warned by my friend Kristin of The Life & Times of Us not to watch it because it would hit too close to home…

She was right,
on the hitting home part.

After crying until the show ended, I knew I wanted to share something,
something I generally share only with my very closest friends and family,
for fear of judgement…

Kids with autism are selfish,
Not because they want to be, but because they generally don’t know any other way to be.

And it’s a tough pill to swallow and even tougher to admit.
No one wants to think of their child as self-centered, let alone readily admit that their child’s entire universe is based solely on their own happiness.
But, such is the life of autism.

And, as a mommy to an autistic child, we buy right into it.
Out of desperation.

I’ll admit.
I will do anything for Will,
for his happiness.
Because who would want to see their child closed-off, in his own world, every.single.day?

Not me.
Or anyone else who is blessed enough to share in Will’s World.

So, we jump through hoops,
walk through fire,
go to the ends of the earth just to see him smile.

Because there is nothing more priceless.
Nothing.

And it’s hard on us all to live like this every day,
thinking first of Will and second of ourselves.
Because sometimes we want the world to be about us too.
(especially Will’s brothers & sisters)
And we get jealous,
and tired,
and just want autism to stop,
Just for one day,
knowing it never will.

And, sometimes that reality gets the better of us.
We’re human.
And although we have all come to accept Will’s diagnosis, the full-blown reality some days, when you just want to sit down and watch TV without worrying if the doors are locked,
if every alarm is set,
if Will is secure in his room…
sometimes it’s just hard not to wish for once that life didn’t revolve around Will every second of the day.

Of course, those moments are quickly replaced with joy like nothing you’ve ever known before when he suddenly, out of no-where, comes over to you, nuzzles your face and says…
“I love you.”
And you remember why you feel so blessed to know autism,
Because those teeny, tiny moments sustain you,
more than you ever dreamed possible.

Joining in with 7 Clown Circus , Lolli and Parenting by Dummies for Wordful Wednesday

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{ 20 comments… read them below or add one }

cat@juggling act November 29, 2011 at 9:34 pm

Oh Debi, with all my heart, I feel for you. The small taste of slightly similar behavior just helps me understand a bit more. Lots of love

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debi9kids November 30, 2011 at 3:05 am

Thanks Cat. I wish so often you (& I) weren't dealing with all of this… But am so very thankful I don't have to do it alone.

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Buckeroomama November 30, 2011 at 12:34 am

Beautifully written. {{hugs}}

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Heather November 30, 2011 at 1:39 am

Oh Debi…..thank you for posting this. =[

I have a brother and sister in law who just don't get it. =[

No matter what we say or show them, they just don't get it. =[

It makes in law visits incredibly frustrating. =[

So although my world of autism is different we can relate in many ways and I am thankful to have someone who truly understands. <3

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debi9kids November 30, 2011 at 3:09 am

I.completely hear you on people not getting it. Makes it so much harder than it has to be. For us and for the kids.

Although, not sure which is harder, watching my son being misunderstood, or being told I'm a bad mom for "giving in".

Very thankful to have you as well <3

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Debra November 30, 2011 at 2:18 am

I totally get this. My husband and 2 of my 5 kids have Autism in various points on the spectrum. It's very, very , very lonely in my marriage. I always have to remember to have "date nights" with my other children or they start feeling left out. It's hard to juggle a large family. Then add Autism….. I'm thankful I have a job-just to get away a little each day.

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debi9kids November 30, 2011 at 3:12 am

(((Debra))). I totally understand what it can do to a marriage and its Heartbreaking once you realize just how many others go through this.

I too try to make time for the other kids, although quite unsuccessfully as of late due to our home issues…

The last thing I want in this world is for any of my kids to resent Will :(

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angie November 30, 2011 at 4:19 am

I think that this is one of the most beautiful posts about autism I've ever read. Ever. xoxo

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debi9kids November 30, 2011 at 2:42 pm

thank you Angie. That really is so very nice of you to say.

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Stacy Uncorked November 30, 2011 at 6:31 am

This is absolutely beautiful, Debi. My oldest nephew has Autism, and those teeny tiny moments definitely sustain you. Little Dude is being evaluated in January – his former foster mom said he has ADHD, but after being here for 8 weeks, the signs are pointing more towards Autism or Asperger's. So the journey will undoubtedly get interesting. Will is absolutely adorable! ((HUGZ!!))

Final Day of November, Final Visions of Fall

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debi9kids November 30, 2011 at 2:44 pm

Thank you.

I pray you will get your answers and find the support you need at his next evaluation.

Just remember, you are his best advocate and your voice WILL be heard because his can't. (((hugs)))

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Holly November 30, 2011 at 10:27 am

Once again a moving tribute to moms with different children. We are still struggling with Brian's needs, finding the right combination of services to help him excel. I have tried to convince his doctor to look into Aspergers to no avail. There is definately something that we are missing.

Good luck to you and thanks for allowing us to acknowledge our feelings without feeling guilty.

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Liz @ A Nut in a Nut November 30, 2011 at 11:14 am

This just completely blew me away! I am actually without words. Beautiful

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debi9kids November 30, 2011 at 2:45 pm

thank you. truly.

I know I thanked you on Twitter for your generous words and I truly mean it.

VERY kind of you.

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AmyLK November 30, 2011 at 2:39 pm

Wow. You're words are amazing. And definitely a reminder I needed when dealing with my AS/ADHD tween. We do live for those moments when our kids are able to step outside themselves.

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debi9kids November 30, 2011 at 2:48 pm

thank you.

those moments have never meant quite so much to me until I had Will… and what a gift that it! He forced me to take a step back and relish every single little moment with my kids. How precious is that!

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Barbara Manatee November 30, 2011 at 5:30 pm

I have tears, Debi. This is beautiful. You know, although I'm not a parent, that I get it. That I'm right there with my students – frustrated one minute and triumphant the next. I was seriously just telling my husband 2 minutes ago how in awe my students were of our first snow today – how they stood in the window of our classroom, admiring the winter wonderland.

And Will – that face just has me. I know I've never met him but I just feel this pull to him – a connection to him – and to you. I love reading your posts like this – when Will becomes Will – not just his Autism.

*hugs*!!!

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debi9kids December 1, 2011 at 10:03 am

thank you Barb!
I LOVE that I know you too and that everything I have ever thought that impresses the heck out of me about special needs teachers… you embody :)

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Julie Bouf December 7, 2011 at 6:54 am

I still haven't begun watching this show even though I've wanted to from the beginning. I need to get the back episodes.

On my own spectrum journey, I was ready to call a priest to perform an exorcism on Katie this morning. I really should record her some morning and send it to a horror movie director. And then…boom she's over it and it's like it never happened.

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Linda Burke December 23, 2011 at 8:54 am

This is wonderful. I have a nephew who is 40 y/o and we who know and love him understand completely. I only wish my sister could have read this. You have expressed her heart!

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