Disability Pass

Did you know that some theme parks, events, zoos, and museums offer discounted passes for being a person with a disability?  You might be wondering why this would be necessary, after all, their body is taking up space at the park just as much as a person with out a disability would. In fact, they might be taking up more space due to a wheelchair, walker, and/or medical equipment. Yet, they get a discount. Seems a bit unfair from the outset, yes? I honestly had never considered what a benefit that could be until we had Liam. Now I get it.

We recently went to the NC Zoo in Asheboro and I called ahead to see if they offered a discounted pass for bringing my child who just so happens to be in a wheelchair. The first person I talked to said they did and she directed me to get more information from another woman who then told me that they didn't. "But," she says, "we have braille placards at the exhibits." 

Well, la-ti-da. 

Braille cards.

How helpful.

Knowing the zoo was handicap accessible we went anyway, even at full price admission, because it was Liam's first time going to the zoo and I figured it would be worth it.

Meh.

I figured wrong.

Liam thoroughly enjoyed the otter exhibit. Since we could wheel his chair right up to the glass and he could watch the otter dance and play in the water directly in front of him, it turned out to be the highlight of the trip.

However everything else was a joke. Seriously, a laughable joke. The animal exhibits would be too far away to even see the animals, they were at awkward angles from the viewing area so you had to stretch to get a glimpse, or the animals were all asleep, hiding in the grass or in their homes. I walked away knowing why a discount on his admission pass would have been such a big bonus.

•  Admission prices are high. When you are bringing a child that can't stand to look around obstacles and can't manuever his chair into positions to see anything, the point of the zoo becomes pointless.
•  Liam is legally blind. Braille cards are of no benefit on an exhibit that doesn't even have an animal present or has an animal so far away that people with no vision issues can barely see. 
• There was constantly something in the way preventing a child in a wheelchair from being able to see properly. Even the glass enclosed reptile exhibits had fogged, opaque glass that made it hard for me to see in.
• Liam's wheelchair weighs almost 50lbs. With Liam in it we are close to 100 lbs. Even though the park is handicap accessible, pushing a 100+lb stroller and child loaded with supplies up hills is exhausting. I'm not in great shape but I'm not totally out of shape either and I had to pass the stroller off to my son several times due to the incline of the hills and the weight we were shoving up it.
• There were few places to relax in the shade. We went on a sunny spring day but Liam got overheated sitting in his black frame chair and there was no where to go to get him out of the sun to cool off.

I'm not trying to be a complainer here. I'm pointing out what wouldn't have been obvious before Liam came along. Even though this is a handicap accessible place, it's not handicap friendly. And there's a big difference between the two. We paid the same admission across the board when my handicapped son couldn't participate, engage in, or see most of the exhibits. And I think that's a shame. They should offer a disability pass.

Caring for a child with multiple disabilities is hard. Getting out of the house and engaging in family-friendly activities is even harder. Not only due to the logistics of his handicaps but due to costs. That's why a discounted pass for Liam would have been helpful. Costs run high when you care for a child with disabilities. Getting to take a family on an outing that is expensive can be very financially limiting and paying for a ticket for a non-participating participant is painful to the pocket. We would be more inclined to make an effort to do outings of that nature with an incentive.

I appreciate all of the companies that offer discounts and services to those with disabilities. Truly grateful. Because they see what most people don't. If you want to get a family of 6, one with major disabilities, into your facility, make it worthwhile for them. Offer them a discount. Offer them special incentives to get them in the door. After all, having a family pay full price for only 5 family members is better than the family not coming at all.  

Love anyway

Something I don't talk about often is that I deal with disabled adults as well. I never imagined I would be working with disabilities at both ends of the age spectrum and in my own family .

My dad has dementia. He got it when he was only 47 and I was 27. It's a very young age to start having problems with remembering your own grandchildren's names and what state they live in. I wish I could say he had some rare condition that caused this to happen, but I can't. Because he did this to himself.

My dad was addicted to alcohol. He had been a functioning alcoholic all of my young life. His parents were alcoholics along with two of his siblings. But drinking a lot never interfered with his ability to work and never prevented him from being my daddy. He was what was considered a functioning alcoholic. He never missed a game and never appeared drunk. In my late teen years my parents divorced and that was when his slippery slope got out of his control.

I lived thousands of miles away from him at the time he started to lose it. I was living in southern California, he was in Missouri. At one point he didn't even have a phone so long periods of time went by without me speaking to him. After Shawn made a trip back to MO for work and checked in on him, he found him in a really bad state and we knew something needed to happen. We just didn't know what. He had brothers and sisters a few hours but no one wanted to help. They said he needed to hit rock bottom and then he would be ready for help. "What if rock bottom is death?" I had asked.  Their answer was that rock bottom was death for some people and that might be what it was for my dad.

I didn't believe that. They just didn't even want to try.

We prayed about the situation. We brought it before our small group and had them pray with us. We knew this was a big deal. We didn't know exactly what was going on and why he was having such a hard time remembering things. We knew that with the issues he was facing, moving him in with us in CA would be life altering for all of us. I had only been living on my own with my husband for 8 years. We still had a young life to live and bringing in a sick parent was not something we wanted to take on lightly. Life for us would never, ever be the same.

So, we prayed for a sign. We needed to be sure.

When I found out he no longer had a job and hadn't for months, when he couldn't recall basic information, and when he told us he kept trying to get a hold of his mom (who had died the year before), we knew it was time.

We packed up our three little ones and drove the thousands of miles to MO to pack him up and move him in with us.

I was so angry at him for doing this to himself. I made him quit alcohol and tobacco cold turkey. I refused to have any of it around my children.

Once we got back to CA we got started right away on the process of discovering what was wrong. It would become clear to the Dr's upon speaking with my dad that things just weren't adding up. And when we finally got the psychological exam it was eye opening to say the least. Everything finally made perfect sense. They diagnosed my dad with Korsakoff's Syndrome. He had given himself dementia from his chronic alcohol abuse. They told us he would be able to get better with a proper diet and no more alcohol, but that he would never be the same.He would never be able to function with a real job again.

And he has never been the same. God has been so faithful to us as we've cared for my dad. It has not been easy. We've certainly had a hard road. It's been tough trying to raise our kids and deal with someone who has dementia. It took us a while to figure out the kids weren't lying, that it was my dad making up stories because he couldn't remember what really happened. They've learned sarcasm from him, something I hate. They've learned to try and get the last word, which I hate. But they've also learned some very valuable life lessons.

They see that you don't have to win an argument. It's ok to not have the last word.

They see first hand what abusing your body can do to you. 

They've learned that God's mercy is granted even to those that seem beyond hope.

They've learned that while you can't pick your family, you can choose to love them anyway even when it's not easy to do, but because it's the right thing to do.

Rubber neckin'

An open letter to all you rubber neckers out there:

We can see you staring. I can see you out of the corner of my eye, that place I don't want to look because I know you won't stop staring. Even though I don't give you direct eye contact I can still see what you are doing. I won't look at you because I don't want you to think that by my meeting your gaze I have approved of your irreverent stare. It is times like this that I am thankful my son is so near sighted and doesn't care about social eye contact. But you see, I don't have vision issues and I can see you staring, practically gawking. Do you think we can't see you or did no one ever teach you manners?

 If I hadn't had to throw my trash away I wouldn't have even given you a second glance, but I had to walk by you to get there and you just couldn't leave well enough alone could you. You just couldn't stop at staring. You had to go to the next level and ask a stupid question. Why? Do you have the same disorder? Then you should understand and start out by saying so and after relating to me I might be inclined to carry on a conversation with you. Does your sister, brother, uncle, friend, or cousin have a condition that looks similar? No? Then you are just asking to satiate your curiosity.

We are not out in public to answer your questions. We are out as a family, even though it's difficult, so we can experience some normalcy like everyone else. We are not here to answer your questions about what disorder my son does or doesn't have. I am all for education but not when we are at dinner. And not when you have been staring so impolitely. And not when you say, "What does he have?"  How insulting. How about a hello first? What do you mean what does he have? That is a big box of alphabet acronyms that you couldn't even translate let alone understand.

If you are so inclined to indulge in your curiosity, might I make a suggestion? In the future, when a person who is different catches your eye, they would be more interested in talking to you if you didn't stare so openly, if you didn't talk about them where they can hear and see you, and if you approached them in a manner they wouldn't find offensive. How about beginning a conversation with one of these starters?

•  A simple hello is a perfectly normal, typical, conversation starter. It goes a long way.
• What's his name?
• How is he doing?
• How old is he?
• My friend has some issues very similar to your son and I was wondering if they were the same.
• I noticed your son was having trouble, is he alright?
• Your son is adorable! I don't mean to sound rude, but I was wondering if you wouldn't mind sharing a little bit about him.
• Ask my son something yourself! He might not be able to speak back to you but you just acknowledged him as a fellow human being and that goes far in my book.

This note might sound snarky and while in a way it is, it is almost certainly an acknowledgment of the fact that I wouldn't ever mind speaking about my son and educating others about what issues he faces if I was approached in the right manner. Don't just blurt out *"What does he have?" as I'm walking by. You would never approach someone with no hair and assume they have cancer and shout out, "Whatchu got?"

* After he asked me what Liam had I asked back, "Who?" He then replied again with the exact same question. I felt like I gave him an opportunity to converse with me in an appropriate manner by giving him a second chance to rephrase or engage but all I got was the exact same question again. Liam was holding a stuffed otter and I reallllly wanted to say, "He's got an otter!" and walk away. Obviously I knew that wasn't the info he was after and I felt a tiny bit of education was in order. So I gave a very simplified response and said, "He has cerebral palsy." He immediately turned to the other guy he was with and that guy said something about so and so having that too. I waited. He didn't say anything else to me and frustrated, I just walked away.