Saturday, November 3, 2012

Some people really do get it! Most do not!

Not many people talk to Jax, acknowledge that he's there, or try to engage him. If I do talk to someone about Jax, they talk over his head, never to him. Obviously we get a lot of stares. Sometimes we get such blatantly rude stares that I want to punch the people in the face! We also get a lot of snide comments when people see two young adults pull into a handicap spot. In all honesty we deal with a lot of crap. We would probably deal with less if we walked around buck naked!

I think sometimes people are afraid to talk to Jax. Their afraid to get too close, afraid they will offend us in some way, or they just don't know what to do. The only people that really talk to Jax are people that know him.
Here's the thing, if you talk to Jax, more than likely he's not going to smile back. He's not going to look at you, and he's definitely not going to talk to you. You have to get right in Jax face, his hearing and vision are poor. Trust me, he does smile, he even laughs, you just have to know how to do it!

Friday I was having a bad day. The boys were super sluggish getting ready for school. Mondo made Carter and Tanner miss their bus, so I had to drive them all. Then the Medicaid office called and said I filled out the paperwork wrong, even though I did it how they asked. I really need to know if he's going to get on the waiver, because it will determine how I choose our benefits for next year. We currently have a PPO, so it has high deductibles and out of pocket. That was extremely hard to pay for this past year. I need to know if the waiver is going to cover what his regular insurance doesn't, otherwise I'm going for the HMO with lower out of pockets. But enrollment is happening now, and I only have a couple weeks to re-enroll. Now I have to fill some paperwork out all over again before even seeing if he'll get on!
Needless to say I was a bit cranky when daddy, Jax and I pulled into a fast food restaurant. There was an older couple standing outside, staring us down as we pulled into the handicap spot and proceeded to get Jax out. When I'm already having a bad day it can be hard for me to keep my mouth shut, so we quickly walked past the couple and into the restaurant.
While we were eating our food a lady in the booth next to us got up to leave. I saw her looking at Jax, and thought, here we go again! But as she walked past us she stopped. She asked me if she could talk to Jax. I said of course she could. She bent over and proceeded to talk to him. Then she asked if she could touch him. I said yes, so she grabbed his hands and kept talking to him. At first he didn't even look her direction, but after she got closer and grabbed his hands, he gave her a smile!
Honestly, I think this is the first time EVER that someone has done that. For once it wasn't staring and gawking. It wasn't, "why does he have that?" It was just a person talking to a child, not the tubes or the disability. It was amazing, and it made my day.
Let me tell you, if you see an obviously severely disabled child, don't be afraid of them. Talk to them, its not only good for the child, but for the parents who usually only get negativity!!
Trust me, there is nothing negative about my little boy!! And I promise you, an encounter with him will change your life!


Heather said...

You know how much I love your boy, don't you? And you know how much I get it, don't you?

You and I carry similar chips on our shoulders Lacey. We do. And then, out of the blue, something amazing like that wonderful woman's interaction happens and we soften and we see, some will understand and accept our children and engage and others will not and the one's that do cancel out the ones that don't.

Love to you all.

dannette said...

Great post! We get the stare down too when using a handicapped spot - usually they don't wait long enough to see us lower the lift and bring out our princess! I love, love, love when people take the time to talk to Meya and she loves it even more. I have found that elderly people are the ones willing to just stop and enjoy her and our joy in being her family.

Anonymous said...

that is awesome!!!! He is such a beautiful boy!! We love Jax!!!

Alison said...

That bought a tear to my eye - what a lovely moment.

Emma said...

Love it - he's obviously a big blessing and people will love him if they're not scared!

E x

Melanie L said...

If I ever saw Jax, I'd ask if I could hold his hand (after washing mine!), and I'd tell him how much joy he has brought to my life, just by seeing pictures of him.

Becca said...

Oh, Lacey, tears in my eyes reading this. What a beautiful post - I'm so glad you had that interaction, so sorry you have so many negative ones. And, you do realize, that when I finally get to meet you guys in person, I'm not likely to ask permission... :-)

Sandryte said...

I want to be like that lady! She is such a good example of humanity and kindness! I am still learning how to come closer to a differently abled child and to tell him/her he/she makes a world beautiful.

Thanks for this post!

The VW's said...

What a wonderful encounter! It is so heartwarming when people make a point to be kind to our special kiddos! That lady is obviously a wonderful person! Thanks for sharing such a touching story!

Colleen said...

Wonderful post! I find it mentally exhausting and it's so nice when someone doesn't just see the trach/wheelchair for a change. Jax probably made her day with his smile!

EN said...

What a fantastic post! It's such a good point, too. Having grown up with a sister whom people find difficult to understand, I totally relate to your frustration and I LOVE it when people speak directly to her instead of looking to me to translate.

When we were in college, my husband played wheelchair basketball (the real wheelchair bound people played able-bodied people in wheelchairs and always wiped the floor with them. Every once in awhile they mixed up the teams to make it fair. But I digress...) I sat on the sidelines and talked to the individuals who were wheelchair bound and quadriplegic. One man could talk but was very difficult to understand. One woman could not talk but communicated via Morse code by blinking her eyes (amazing!). I'll admit it was awkward but it was so enlightening. So I guess I've been on both ends of this and I, too, would encourage everyone to work through your discomfort and talk to people with special needs. You'll be amazed at how rewarding and informative the experience will be :-)

Lindsay Marie said...

Thank you so much for writing this post. I never know what to do when I see someone who is severely disabled, other than smile at them.