if you want my advice….

by debi9kids on April 3, 2012

April 1st marked the first day of Autism Awareness Month and while I expected to see lots of news stories dedicated to autism awareness I was stunned that so many of the stories seemed to be negative.
All I could imagine as I read them was: What if I read something like this after Will was diagnosed????

Finding out your child has autism is hard enough.
But to have someone slam horrible statistics in your face, describe all of their worst moments while failing to highlight anything wonderful about their child, and telling you to prepare for divorce… it’s just irresponsible.

I will not give credit to these articles, as they’ve already received enough attention, but I would like to give all parents of newly diagnosed children some of my own advice.

This is Will the day before he was diagnosed with autism.And this was Will the day I was told he was “severely autistic”.
Nothing changed. PERIOD.
Will was the same awesome, happy little boy the day he was diagnosed as he was the day before.
And, I will admit, it took me some time to recognize that.
It took going through the cycles of grieving and it not only was ok, but it was completely normal.

No one sets out wishing for anything but perfection in their child and when you think you’re being told your child isn’t perfect, it takes some time to adjust, but in time, most parents actually realize that autism or not, their child is perfect after all.

I’m not saying everyone gets there, or that everyone embraces autism, but anyone who genuinely loves their child won’t care what the doctors say. They won’t care what the statistics say. They will only care that their child has everything he needs to be happy.

As a parent living with autism in your life, you find faith you never knew existed, strength you never knew you had, and an unbelievable amount of support in the autism community when you’re ready for it.

Take time to let the diagnosis set in and don’t let anyone tell you you’re taking too long or not enough.
Your time is your time.
Allow yourself to accept your reality and then…
just live it.
Everyday.
fully,
honestly,
and lovingly.

And the rest…
you just make it up as you go along 😉

Joining in with 7 Clown Circus , Lolli and Parenting by Dummies for Wordful Wednesday and Twinfatuation for Way Back Whens-day.

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{ 16 comments… read them below or add one }

Beth Zimmerman April 3, 2012 at 8:06 pm

You go girl! If I ever need someone in my corner … you and Sunday are DEFINITELY on the list! In fact … I might have been tempted to sic you on my recent boss if you gals lived a little closer!

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Pol April 3, 2012 at 10:18 pm

Great positive post Deb – I think I need to borrow

"just live it.

Everyday.

fully,

honestly,

and lovingly."

and stick it up in the kitchen!

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Alison@Mama Wants Th April 3, 2012 at 10:51 pm

I read that article you refer to and it just made me sick.

Thank goodness for moms like you, who can set the record straight.

Will is a gorgeous child, by the way. Such beautiful eyes.

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cat@jugglingact April 3, 2012 at 11:03 pm

So well said. As always, you know just how.

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Liz @ A Nut in a Nut April 4, 2012 at 6:42 am

That was so beautifully worded. Truly beautiful!

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angie April 4, 2012 at 9:37 am

Absolutely, positively BEAUTIFUL. For real. This should go viral.

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debi9kids April 4, 2012 at 11:36 am

Thank you so much Angie! I wish!
It sure would be nice for parents of newly diagnosed children to be able to hear from parents who have walked where they are now walking and to know its not the end of the world.
There is such a HUGE difference between what is real in autism and what is perceived. Sadly.

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Shari April 4, 2012 at 8:29 pm

Very well written Debi!

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Patty April 6, 2012 at 4:45 am

I love this post! Thank you for sharing a positive post about autism! Those other articles are just horrible. They made me very mad.

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Lisa April 7, 2012 at 6:56 pm

Ok..i know i'm prone to mood swings..but you've got me balling.

I'm not just saying this..Will is one of the most beautiful children i have ever seen, I don't see autism I see Will. You hit the nail right on when you said

just live it.

Everyday.

fully,

honestly,

and lovingly.”

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Barbara Manatee April 8, 2012 at 6:10 pm

Love this!!! Such a great post, Debi!!!

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Elaine A. April 10, 2012 at 7:46 pm

Aw Debi, this is so beautiful and true. Especially the part about wanting your child to be "perfect", which can mean many different things. Well said, my friend, well said – all of it. 🙂

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Teresha April 11, 2012 at 1:00 am

thanks for sharing the positive side of autism. this should be made into a PSA

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Kate April 11, 2012 at 2:38 pm

We just got a preliminary diagnosis of Aspergers and sensory processing disorder. It never crossed my mind that my Monster was any different or not perfect or not normal. The reason that I cried was because navigating the medical system is a huge pain in the bum and hate when other people tell me what is best for my child.

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debi9kids April 11, 2012 at 3:29 pm

see, for me, I had worked in a special needs school about 15 years ago, when autism was still about "shoving them in a room and keeping them quiet". I HATED it. It was hard to watch kids be treated like that and I ended up quitting because I couldn't stand the idea of never letting those kids be more than "busy".
And when my son was diagnosed, all I could picture in my head was that, my son being forgotten by everyone but me. And, while I would love to be everything he needs, I know I'm not 🙁
Thankfully, time has changed how autism is viewed and I have a louder voice than I ever imagined I would 😉

PS I TOTALLY hear you on navigating the system. It stinks.

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Kristen April 12, 2012 at 9:58 pm

Thank you so much! I laughed and cried. I always say that you could call it autism, or you could call it pickles, but we just call it Ethan.

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