Feeling a bit lost in a "perfect" world

Feeling a bit lost in a "perfect" world

Do you ever get the feeling like you have a giant booger on your face or maybe forgot to put pants on before leaving the house? I do. I catch people staring or even gawking at us every... single...day.

I'm not talking about short little covert glances, but big wide eyed "OMG, would you look at that family!" stares. There are days that I feel like we are the accident in the road and everyone is rubbernecking to get a peek at the gore.

Sometimes, it's for the sheer size of our family (which by Dugger's standards, we are kinda small). Other times, it's the "Down's" element. Many times, it's because one or more of the boys are doing something obnoxious, fighting with each other or being disrespectful to us (have you ever tried to rationalize with someone on the spectrum?).

There's also the adoption factor since Izzy sticks out with her striking jet black hair, black eyes and mahogany skin. But wait, we can't forget Leo's pepperoni sized birthmark on his head because it definitely gets it's fair share of horrified looks.

Some think I'm being paranoid or over sensitive and maybe I am, but if you constantly feel the stares and catch people whispering or even pointing at your family, you get sick of it. You want it to stop. C'mon people, we are not a circus act.

Another thing that just kills me are the questions or comments. "Are they all yours?", "Where'd she come from?", "Where'd you get her?" (usually said right in front of Izzy), "Does she have a little Down's?", "OMG, what happened to him?", "Are you done?", "Better you than me", "I could NEVER do what you do?", "Wow, you must be so patient.", "How much did it cost?", "Why is he/she doing that?", "God only gives you what you can handle" and the ever favorite "You sure have your hands full."

Or, they want me to diagnose their friend's friend's friend's child with autism because they act bad, weird or don't talk and they are 2.

I know I should probably have an honorary PhD in diagnosing autism since I have 4 on the spectrum, but I've come to learn that most parents don't want to hear from their friend, sibling or friend's friend that there could possibly be something wrong with their child. I'll leave that conversation up to their pediatrician.

And you know the part from "Welcome to Holland" that says "But everyone you know is busy coming and going from Italy... and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say Yes, that's where I was supposed to go. That's what I had planned."

Lately, I think this hits me the hardest.

While we are immersed in the special education world with IEP's, guided study halls, and therapy, it's been bittersweet hearing about how so and so is picking colleges to apply to, or how their child is getting a C in something, or the 4 sports their kids are participating in this weekend that they have to watch, or what umpteenth birthday party their child's been invited to, and so on.

When I'm home doing our thing, I don't really think about it much, but when we are with friends, family or just making conversation with people, I realize how vastly different our world is to someone who's kids are considered typical.

It's a hard reality and I try not to dwell on it, but lately the thoughts creep into my head a lot. Things people take for granted like boyfriends/girlfriends, college, jobs, driver licenses, marriage, children/pregnancy, FRIENDS. All these life experiences are expected by most, but may never ever happen for some of my kids.

It's something I thought I'd come to terms with, but lately as the boys have gotten older I'm reminded how much harder it is for them to obtain things like a driver's license, a college degree or even a job.

I can't imagine how I'm going to feel when Lily and Dasha reach their teenage years.

I need to rethink and recreate a new mindset so vastly different from what was my "normal" growing up that matches my kids abilities and wants.

I need to be at peace with this so I can guide and help them be happy and successful in life no matter what comes their way.

Liz is a stay at home mom to 7 uniquely enhanced kids and has been married to her high school sweetheart for over 22 years.

Down syndrome, Autism, ADHD & Adoption make her world go 'round and she shares her family's version of normal on her blog.

To learn more about "Our Version of Normal" and to follow their journey click HERE

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Comments

  • John Coetzee - July 06, 2016

    A great story, Liz. My wife and I know what you mean. I am a South African author, and I’d like to tell you about a manuscript I have written, entitled Brandon’s Whodunit (approx. 35 000 words). Much of what you say is built into the theme and is aimed at so-called “normal” Middle Grade readers who might not know about Down syndrome. If you are interested in knowing more about the manuscript, please email me.

  • Misty - July 02, 2016

    Thank you. Just thank you for this. It perfectly sums up the feelings I have about this journey I’m on with my family! God bless!

  • Penny - July 02, 2016

    I wanted to open and read her blog, but it’s by invitation only. Liz, do you mind sending me an invite, please? Thanks for sharing your family’s story. Your children are lovely. :)

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