A Lost and Tired Guest Post

Our very good friend/family Nikky wanted to guest post today. This is in response to the iggnorance I experienced at a car dealership last week while trying to buy a new car. So  here we go.  Thanks Nikky….. Click on her name to vist her blog……

“I wish you knew my friends.  They are unlike anyone else I know. They are the strongest, most loyal, resilient, hard working people I know. But most people don’t know that, and most don’t care to try to.

What you see on the outside isn’t what is on the inside. They are a family of five who may appear to be like any other family. There is a mom, a dad, and three boys. They don’t live in the best part of town and definitely not as nice of a house as most other people. They used to drive a car that was on its last leg, err wheel, as the case maybe that wasn’t the greatest. They have a dog that is ferocious in her love of her family. She will protect them all as if they are her pups, putting herself between them and any danger. 

What is so different between them and any “other” family from “that” side of town?

You see an 11 year old boy who is overly loud and obnoxious and often acts like his two year old brother.

I see a child trying to connect with the world he doesn’t understand in the only ways he knows how.

You see a toddler who is seemingly undisciplined and screams over everything and is constantly climbing/jumping off things.

I see a child who doesn’t know how to use words to express his needs and wants. His screams are the only thing he knows to try and get his parents and maybe you to understand. I see a child who needs to “feel” the world around him to connect.

You see a 4 year old who “talks” a lot, and to you is trying to grab attention.

I see a 4 year old who is “older” then he really is because he tries to not only be a big brother to his younger sibling but also to his older. He is in an incredibly tough position and sometimes acts his age. Sometimes he models his brother’s behaviors in an attempt to appease them both and connect with them the only way he knows how – by their rules.

You see two parents who don’t: “discipline” or “correct” their child the way that you would if you were out in public with them. You see someone who is obviously frazzled and you don’t understand why they can’t “just do better by their kids” – whatever that “better” is whether it be clothes, the car you see them getting into, the neighborhood they live in or whatever the case maybe.

I see two parents who are stretched to the ultimate thinnest a person can be. Yet they continue to stretch and bend but receive little to no help because no one understands. And they ARE doing their absolute best by their children – often going without things so that their children can receive the absolute best help they can.

I am not the parent of a special needs child. Yet they are. I have no firsthand knowledge of their lives on an endless minute by minute not to mention day by day basis.

However, I choose to educate myself on things like Asperser’s Syndrome, the “spectrum”, sensory integration disorder and what terms like “high functioning” or “low functioning” mean and what they are up against for no other reason than to be someone who has empathy and attempts to be someone they can lean on.  Even if the only thing I have to offer is an ear to bend when the pressure builds to point of near explosion (and believe me it does).

It angers me to no end when people pass judgments on a child and subsequently the parents because they are assuming that these things aren’t real. Autism is NOT an excuse for anything. Ask any special needs parent. They probably expect more out of their child then you do – just on a different level. If they get through the short trip to the store with only four meltdowns instead of fourteen hey it’s a good day and they are proud of their child. But you wouldn’t know that. Perhaps instead of making off hand comments about how “that child needs discipline” you should offer a smile and a “Rough Day? I’ve been there too.”  Perhaps even taking ten minutes out of your day to do a web search on Autism would help you have a greater insight into my friend’s lives.

But you don’t know my friends, and it’s a shame.  But the truth is – they are probably better off without you if you think their children are “undisciplined” or just shouldn’t be out in public. No one deserves to be discriminated against – especially them. Just because you don’t understand their situation doesn’t give you the right to be ignorant or at the very least intolerant. Odds are you are missing out on one of the possibly richest connections in your life. My children amaze me everyday – they are “typical”, but when my friend’s children hit milestones or overcome a challenge (even if they regress) I swell with pride even though I’m a 1000 miles away. But hey your too narrow minded to be tolerant so you won’t know what that’s like. Hilary may not be my favorite politician, but she did have one thing right – it does take a village but my friends and their kids aren’t the ones who should be “evicted”- they aren’t the one’s with “problems”.  If nothing else I think they are the best teachers that I could ask for.”

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Brianne Knight

Tolerance is the one thing I wish more people would have. I have 2 children with autism as well and everytime we have a meltdown in public, the nasty looks and comments start. If people would just put themselves in my shoes for 5 minutes they would realize.

Lost_and_Tired

I completely understand. People are far to quick to judge without knowing the story. This is why I share our story in the manner in which I do. Hopefully people will see what goes on behind the scenes and not be so quick to judge. Hang in there and please feel free to join our support group. We are parents, just like you, frustrated and overwhelmed with many things but completely dedicated to our kids.
http://www.facebook.com/groups/realityautism/?id=

Heather

I meant to add that understanding, empthy, and patience should come from both sides. Take care.

Lost_and_Tired

Hey Heather, you spoke very well. I just wanted to point out that this post was in response to something that had happened in our lives and Nikki was expressing her frustration with someone in particular without actually using their name.

Thanks again.

Heather

Hi Lost and Tired: Yes, I just got the scoop from my friend who filled me in on the actual sitation Nikky was commenting about. 🙂 Just a lil late! In any case, we could ALL use a lesson in slowing down, realizing life is too short and precious, and just basically support each other instead of tear each other down. We all carry burdens and baggage. Not one of us has this thing all figured out, so let's just help each other through it! Blessings to you and your family. (and Nikky!!)

Lost_and_Tired

Heather, once again you express yourself very well. Very nicely put. We need more people out there with a good head on their shoulders. Thank you for commenting. 🙂

Dearest_Nikky

Heather – I took no offense 🙂 And I admit – your right. I probably could have found a better way to express my thoughts on the experience my friends, had experienced. I also realize that I am in a peculiar postion. Not many people have the desire that I do to TRY and see what others are going through who have special needs children, and plain and simple that is what fueled my post. It doesn't make me any better (or worse) then the person I was railing against. Lets just go with it's all I would have loved to say to that paticular person… and all the others who choose to judge Rob, Lizze and every other parent and child out there who is in a similar postion 😉

Dearest_Nikky

Rob- can you add a link to the orignial post that you wrote so that there is a ~tie~ between that and why I chose to express my feelings? 🙂 Perhaps it will help so that others will understand where I'm coming from 🙂

Lost_and_Tired

I honestly don't even remember what this was all about. Do you? This was like a year ago.

Dearest_Nikky

The idiot @ the dealership. It took me a moment but I figured it out. 😉

Heather

Hello Nikki. Your blog entry certainly comes from your heart and from a place of intentions of pure gold. That is clear. It is clear you are passionately dedicated to your friends and their children. Your friends are lucky to have you as an advocate for them and for their children. However, I wish to point out that I read some pretty strong statements in the othr direction, kind of judging the reader, without cause to judge. It was assumed the reader is ignorant about Autism, Autism Spectrum, ad Asperger's. Please see your statements below:
"But hey your too narrow minded to be tolerant so you won’t know what that’s like."
"Just because you don’t understand their situation doesn’t give you the right to be ignorant or at the very least intolerant."
Please take care not to assume people are narrow minded, ignorant and intolerant. There are many reasons behind people's various reactions to children with Autism and other cognitive disorders. Thank you!

Nikky

Thanks Marc. Yes I'm blushing 🙂

I wish I knew how to make more people understand that just a smidge of tolerance can go along way. And I can unapolagetically say that had *I* been at the dealership with Rob, I would have been the next person on the news. :/

Tolerance can go a long way for a lot of things. Sadly there aren't enough people advocating for special needs tolerance. Don't get me wrong but the tolerance being advocated for right now doesn't include what Rob, Lizze or you and your wife or any of your kids could use 🙁 and that really does break my heart!

Marc

Hey Rob…..Thats the kind of friend that every special needs parent could use. Nikki, i don't know you personally, but thank you for being there for this family.You are right on EVERYTHING that you had to say.We sure could use more people like you in this world.