Wednesday, August 02, 2006

The Ant Bully

Dear Son was in the middle of his g tube feeding and was getting bored. His feeding, typically takes two hours in the morning and almost three hours at lunch and dinner. He takes his feeding most of the time lying on his bed and in the afternoon, in his tent, which he loves. He was an hour into the feeding and began kicking the wall letting me know he was bored. At almost fifteen, and unable to sit, our options for passing the time are few. I decided to get him out of the house and proposed we go to the movies. Delighted, he stopped kicking the wall and I chose a movie, the Ant Bully. With nearly 100 degree heat, the movies would be an excellent choice to pass the time. The hard part, would be all of the lifts, lifting him into the wheelchair, then into the car, then into the wheelchair to get into the theater and then repeating that whole process again to come home. At nearly 140 pounds, it takes a lot of my energy. In addition, I make sure he has all his meds, has finished his feeding, change his diaper and packed some diapers in case he needed to be changed. Dear Son was so excited.

We get to the movie theatre and it’s wonderful. This theatre is great for wheelchairs. The first row on the main floor, in the center of the theatre, has a few seats and then some of the seats have been removed which leaves lots of space for a wheelchair. You can actually sit next to someone in a wheelchair as opposed to having them sit in a different row, which is frequently the case.

The Ant Bully begins. It’s a wonderful movie that centers around ten year old Lucas Nickle, who had recently moved to a new city with his family and he’s definitely not having any fun-he doesn’t have any friends, his big sister ignores him and his parents are occupied with their upcoming vacation in Mexico. Lucas, a nerd, quickly becomes the victim of the neighborhood bully Steve. Steve, constantly picks on Lucas, pulling him up by his underwear until the elastic breaks and he falls to the ground. Lucas, also known as Peanut, is frequently terrorized by Steve and soon begins his displacement of aggression by taking out his frustrations on the ant holes in his yard. He proceeds to stomp on them and squirting them with the garden hose.

Little does Lucas know but there is a whole world alive beneath the ground in his yard, and the ants view Lucas as a threat to their safety and begin fighting back. In the ant world, he is known as Lucas the Destroyer and Zoc, the Ant Wizard (voice of Nicholas Cage), creates a formula that shrinks Lucas to the size on an insect. Lucas awakens to find himself a prisoner of the ants. The tiny boy is then brought before the leader of the Ant Colony to answer for his crimes against the ant. Showing compassion, the Queen of the Colony (voice of Meryl Streep) sentences Lucas not to death, but to live among them and see how difficult their circumstances can be. Nurse Ant Hova (voice of Julia Roberts), is put in charge of looking after Lucas. Lucas fights this process and continues to do things his way, totally ignoring the “teamwork” of the ants. At one point, he is running away and can’t climb the wall. The ants tell him he can do it and when he can’t, they yell out “chain” and the ants form a chain and rescue Lucas once again. Working together, they are able to do things that any one ant can’t do on their own.

Throughout the movie, Lucas gets an eye opening perspective of how the other half lives and just in time to help the ants in an all out battle against the pest control man brought in to get rid of the bugs. Throughout the movie, Lucas then begins to see the world from the ant perspective. In one scene, we get to see an underground explosion in the ant world, which is huge, and then see the same explosion in the lawn above ground, from the human perspective, where it is nothing more than a little blip. When you are living in the ant world, the explosion is huge, almost overwhelming and yet when you aren’t in the ant world, you just can’t comprehend the magnitude of the explosion.

About a half hour into the movie, Dear Son begins to fuss. At first, I think it may be seizures, because his hands are shaking and I am unable to calm him down. I use the magnet on the vagus nerve stimulator and things seem to get better. A short while later, he begins to fuss a lot and I have difficultly in calming him down. Soon he settles back down and we continue to watch the movie. About an hour into the movie, I am holding his hand and realize that his shorts are wet and he needs to be changed. I suddenly realize that while I brought his diapers, I would be unable to change him. The restroom, while it does have a handicapped stall, does not have a bench or anyplace to change Dear Son. While I could lie pads down on the washroom floor and change him there, I have the problem of not being able to dead lift his 140 pound body off the floor and back into the wheelchair. Therefore, I can not change him here and we must now leave the movie and go home. There isn’t another alternative. He won’t sit still with a wet diaper and I can’t expect him to sit another thirty minutes without being changed. We leave the movie. I am frustrated. What was supposed to be a fun time out had to be cut short because there weren’t adequate facilities to change him.

Life isn’t fair sometimes. I wonder how many times this same scenario repeats itself around the country. I wonder how many disabled kids don’t get to go to the movies because there aren’t facilities to change them. I wonder how many mothers take their other kids and leave the disabled child at home because there aren’t places to change them. I wonder why in the year of 2006, that we don’t have restrooms for everyone to use.

If we put ourselves in Dear Son’s shoes, we couldn’t go very many places if we had to go out and never be allowed to use a restroom for the entire length of time we are out. Can you imagine going out for the evening to dinner and a movie and not being allowed to go to the washroom or not having facilities available to use? Can you imagine what it would be like to have to go home anytime you are out somewhere, because you have to go to the washroom? And why, why do we insist on making lives more difficult for special needs children and adults? We need to make their lives easier.

I have to wonder if this is really the absolute best we can do as a society for these children? Being disabled should not be a handicap to having some fun and having a life. We need to begin to make things easier for these children and those who take care of them. We need people to understand that we anyone can be disabled in a heartbeat. One small car accident and you can be disabled for life. We need people to understand that making things easier or putting in facilities that disabled people can use aren’t just for the disabled. These are things that “everyone” uses which is why it’s called “universal” design.

We need a family restroom at public places. As a mother, I need a washroom I can take Dear Son into to change him. I don’t feel comfortable taking him into a woman’s washroom, lying him on the floor in full view of all the teenage girls, young girls, and adult women, and changing him. I don’t feel that allows him any dignity, even if I can lift him.

I also don’t feel comfortable going into a men’s washroom and changing him on the men’s washroom floor. It would be humiliating for me and I can only imagine what Dear Son must feel like to go into a woman’s washroom.

If I had a family washroom large enough to get in a wheelchair and with a bench of some kind to lie him on, I could change him. I know that this washroom would be used by fathers who take their daughters in to be changed, mothers of kids in diapers, disabled children and the like.

Like the Ant Bully, it’s all about perspective. You never know what it’s like until you are shrunk down and forced to live in the world of the disabled.



That Girl said...

Amen! I think stories like this need to be told more often. People are often so caught up in their own perspective of things they dont realize how it seems to others. While it would be nice if everyone could think of these things on their own, most people need to be told to grasp the importance of access for everyone.

Fat Doctor said...

I can't even imagine.

Wrkinprogress said...

I still say this is your calling -- create a campaign for this, link up with the ADAPT people, write a book, create a foundation. Of all people, you would be the one who could do this best. (Yes, of course I mean in all your spare time! lol)

Love ya, honey. I'm sorry it was a crappy time for you both in the end. :(

bald01 said...

I am truly sorry. And I know this is going to appear very "ugly", but wouldn't it be better to buy or rent the movie. I'm sure "dear son" would love to see anything new to him. Your eliminate all of his embarassment and your discomfort. We must learn to cope with our lives

Becca said...

I've been there, Dream Mom... with one of my dearest friends. SOME places do have a fully accessible bathroom, though - perhaps you could write to the cinema and draw their attention to the problem? You never know, the next time the toilets come up for a refit...

In Manchester, England, our biggest out-of-town shopping mall (which also has restaurants, cinema etc) has a proper 'assistive bathroom' with an adjustable-height changing table and ceiling hoist, with slings provided. If the Trafford Centre can do it then dammit so can everyhwere else.

Incidentally, DM, have you looked at trying to get a car hoist? Here is a site about things like that - it's a UK site but I'm sure the technology is international.

It's good to see you blogging again - and to hear that the gorgeous chap is in such fine form.

Anonymous said...

I couldn't agree more. We all need to CHAIN.

I'm really sorry that your afternoon out got cut short. :(

When Twinks was in the chair, luckily she was still able to (mostly) toliet on her own, but I quickly became an expert on which places had the most "friendly" bathrooms.

Where we live, all of the new (and recently remodeled) Target stores now have Family bathrooms, typically at the front of the store next to the Customer Service. Most of the Wal-Mart Supercenters have one also - they seem to be back at the Lay-Away department. Of course, they have fold-down tables, but with a weight limit of 50 pounds or so; intended for an infant.

I know that you already have to carry *a lot* of stuff whenever you go out, but have you considered keeping a folding cot in your car/van? At least that way, you could zip out to the parking lot to grab it, and then set it up in a handicapped stall, so that you don't have to try to dead lift him from the floor.

Just an idea...

I used to feel like I was provisioning for a trip up Mt. Everest, instead of an afternoon of shopping - but until family bathrooms become the norm, and not the exception (and until they are equipped with benches) you may have to be a bit more *creative*. It's not right - it's not fair, in fact, it downright STINKS that you should have to consider carrying a folding cot to change your son. But the people who can make the changes...

...havent been down the ant hole.


Your blog helps take them there.


T. :)

Terry said...

I do know of how much of a problem it can be when out in public places and there are no community restrooms. Over the years I have needed this particular type of restroom for my mother in a wheelchair and father with Alzheimers and of course, my son. I am so glad to see that the newer public places are installing family restrooms. When my son was in diapers, I would insert an extra thick sanitary pad in his Attends. It helped to keep him dry and was easy to pull out, leaving the dry diaper intact. Maybe this might help...I hope so.

Fat Doctor said...

You've been tagged. See this post:

Dreaming again said...

bald01 said... I am truly sorry. And I know this is going to appear very "ugly", but wouldn't it be better to buy or rent the movie. I'm sure "dear son" would love to see anything new to him. Your eliminate all of his embarassment and your discomfort. We must learn to cope with our lives

Mom has not responded to you yet, so let me take the stand. First, you're not truly sorry, or the comment would have stayed inside your brain and never made it past your fingers. You are one of those who thinks "well, things work for me, and I make my life cope, why can't anyone else do the same"
While not looking that their obstacles are totally different from your own.

It would be EASIER to buy or rent a movie and stay home.

But at what cost? Physically easier, ... timewise easier.
Less stares from strangers ... less ...less. ..less...

MORE Isolation for Dear Son and Dear Mom. Which brings more costly damage to the emotional system than any trip out to the movies (even when you find one as frustrating as this) can ever think of doing.

Do you realize Bald01 that isolation is used as a form of torture in some societies ...yet, you're telling Mom to keep her son home ...don't bring him out in public. Stay behind your closed doors.

Why? Because it's easier? Or so that we as a society don't have to be reminded that there is real suffering in the world? So that people like you don't have to LOOK at people who are not 'quite right'?

Keep them away, at home where they belong ... "Make it EASIER" make it better your words ...Better for who? Who benefits by them staying home? Certainly not Dear Son who was excited to go see the movie!
Certainly not Dream Mom who doesn't get enough of these opportunities and has spent far too many hours with him at the hospital bed.

Elimenating WHOSE embarrassment? Yours?

You knew that the comment would come off as ugly said so yourself ..but did you really understand WHY it was ugly?

Did you understand the implication of what you were asking?
Did you understand the true ugliness behind your selfish suggestion?

I suspect so, because you gave no link back to a blog, or email for anyone to respond to.

There was a time when our society thought this thinking was acceptable ... lock away those who were different, keep your special needs kiddo's at home. Don't make Us deal with your problem. But, we've grown since then! WE'VE made strides and our society continues to grow and change as things are learned about what those with disabilities need to function as a productive member of society ...and WE as a society find out people who live it saying "HEY I HAD THIS EXPERIENCE! It didn't go as expected ... THIS IS WHAT I NEED TO FIX IT!"

Bald01 ... your comment was indeed ugly. As ugly as it gets.

wolfbaby said...


sorry your time out got messed up, maybe they will have those big and manaverable bathrooms soon.. we can only hope...

if your at a mall would the dressing rooms be big enough to work? they have the benches so you wouldn't have to lift from the floor.. you'd still miss alot of the movie but you wouldn't have to go home... just a thought..

it's not right that you guys have to go home... you should be able to get out and have fun!!!

zoe said...

Most people cannot even imagine the energy or stamina it takes just to have the "outing" you described Dream Mom. I applaud you for continuing to seek out new adventures for Dear Son and I am sorry it ended early because of the bathroom situation. Although my son who is disabled can handle his own personal care needs I am always happy to see a family bathroom because I am leery of sending him into a mens bathroom alone for safety reasons. On occassion I will take him in with me to the womens if I have the slightest doubt about his safety. I am not comfortable doing this as he is older now (24) but safety comes first with me always.

Dream Mom said...

Thank you all for your responses. When I started this blog, one of the things I wanted was for people to understand how big the obstacles are today for the disabled. I do this not for me, (although it does bring me much comfort) but for those disabled children who come behind us, those born after Dear Son. It should not be so hard in today's world to get out and to have some fun. Certainly Dear Son is not the first disabled child and certainly we are not the only ones with these issues, but I feel it's important when I highlight these issues, to explain the issue and to offer solutions. One of the biggest benefits to all of these blogs is that it gives us all perspective, myself included, to see what others are going through. Having such perspective at every part in the healthcare system, makes it a better system for all of us. (Off soap box now.)

When I do tell a story, I try to keep my emotion out of it and to let the reader come to their own conclusion. In this case, it was tremendously frustrating for me and for him. I was angry that day that we couldn't finish the movie. I wasn't angry at anyone in particular, nor was I angry at the movie theatre but just frustrated that with all of the advancement we have today, that we need to live like this in 2006. I tried to illustrate this by trying to get people to imagine what it would be like to have to go home every time you are out and have to use the bathroom.

Our situation is not unique by any means. As some of you indicated, there are many examples, of disabled children and adults and the elderly where these washrooms are needed. This need will only get worse as the baby boomers get older. People today will not tolerate having to stay home because we don't have the items needed to get out.

Many good suggestions but I especially liked the one about the cot. While I can't leave Dear Son unattended anywhere and go out to the car, I am going to look into to see if I can find some kind of portable cot that I could attach to the back of a wheelchair that I could use to change him on.

A bench in the washroom would be all I would need to change Dear Son and a curtain for some privacy. I also wish more places had family washrooms. I think many of us could benefit from that for the reasons mentioned in many of the comments.

As some of you know, I think that having accessible washrooms for the handicapped is extremely important and it goes beyond having a handicapped stall. I have given much thought to this and I will most likely start a foundation to address some of these needs. I anticipate that I will not be able to do that until Dear Son passes since I don't have the time or energy right now to devote to these issues on a national scale.

In the interim, I have spoken with the Big Academic Medical Center with regards to installing restrooms to change disabled teenagers and they are building a new emergency room with that in mind.

I appreciate all of your responses. Dear Son and I like to get out like everyone else. Staying in the house is not good for anyone all of the time. Dreaming Again-you are so right, it takes a tremendous amount of effort to do something simple like go to the movies (you have to make sure they have their meds, their g tubes feeds are done and you have to get out between the feedings plus pack all of the changing items and then all of the lifting).

Anonymous said...

You probably may think this is from Bald01--it is not. I also will remain anonymous since Dreaming Again chooses to blast someone who suggests something that is contrary to her belief system. Bald01 was smart to do that in order to avoid the wrath of people like Dreaming Again.

I find it interesting that since Dream Mom had not responded yet, Dreaming Again felt it was her responsibility to take the stand for what appeared to be Dream Mom's stance. I think Dream Mom is very capable of responding to the comments directed to her in her own time.

I can also understand how Bald01 thought that his/her comment might appear ugly. Of course, it would to someone who doesn't want to consider another's opinion or suggestion, when it doesn't coincide with their own.

Dream Mom said that life is unfair. How very true and eventually everyone will experience loss and tragedy of some kind. No one is immune. That is life and we must live on life's terms. I feel that is simply and nothing more what Bald01 was trying to say when he/she posted the words about coping with our lives. Who knows for sure except Bald01, but negative assumption and reading between the lines doesn't help.

Acceptance and denial are huge issues when we are faced with overwhelming life situations. It may be time to reevaluate the type of outings taken. Dream Mom may want to consider the mental, emotional, and especially physical toll that lifing Dear Son takes on her body. Also, the time spent going to the car to get the cot, etc. may create more frustration and interfere with the overall enjoyment of the movie.

I also agree that Dear Son probably loves being with his mom, no matter where they are or go. Maybe, a special movie time at home with Dear Son and a special, relaxing time for Dream Mom at the movie theater with a friend would be beneficial. You deserve that and more, Dream Mom.

Unfortunately, we do not live in a perfect world, nevertheless, we should continue to strive for perfection. I think it's wonderful for Dream Mom to be concerned for her son and others. Those concerns and actions taken continue to make the world a better place for all. But, I also hope that Dream Mom considers and places her well-being first and foremost, because without her health she will not be able to help Dear Son.

My best wishes to you, Dream Mom, and your son.

Ruth said...

As an adult with a disability , I am going to add my two cents. For many years, people have argued reasons for not creating accessible facilities and using universal design. They argue cost, inconvenience, etc. As a result, people with disabilities were stuck at home because simple functions such as using restrooms were not possible. So along comes the ADA which, to some extent, mandates change and there is an improvement in facilities some extent.

What the ADA cannot do and no law can do is force attitudinal change and lift attitudinal barriers. Before any access is given, there usually needs to be an impetus in that direction. It might be a loving parent such as DreamMom who, although she can go to the movie alone as suggested by one commenter, wants her son to have the experience of going out.

I believe we are in the process of positive change toward inclusion of those with disabilities. I see instances of backlash, where people resist change. They argue various reasons as to why its impractical or unreasonable to envision a world where Dear Son can go to a movie and be comfortable. They may even suggest that those of us who ask for such things are being unreasonable! (This argument has never worked on me, as you can tell.)

The problem with those arguments is that this is about providing dignity and respect to human beings. It is an issue of social justice.

Simply because someone is disabled does not mean they are "less than" an able bodied person. That assumption underlies any denial of basic reasonable accommodations.

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