Sunday, April 22, 2007

Emergency Prepardness and Special Needs Children

I had fallen asleep on the couch and had suddenly awoke. It was 1:30 a.m. and Dear Son’s medicine was due at midnight. I get very tired sometimes, getting little sleep and then getting up multiple times at night; when I do get to bed I try to give it between midnight and one a.m. and am pretty good about giving it right at midnight. I try not to vary the times of his seizure medicines to keep him stable. I was anxious to get to bed since I knew I would soon be up again around 2:15 a.m. which for some reason was Dear Son’s preferred wake up time in the middle of the night, almost down to the minute. It is usually at that time, he needs to have his diaper changed.

Earlier that evening, the wheelchair vendor had come to our house to pick up Dear Son’s wheelchair for it’s fourth repair since the beginning of January. Fortunately, I kept his old wheelchair which is much too small, but works for him in a pinch. The old wheelchair was still in the garage and it was only a matter of hours before Dear Son would be up and off to school. I was debating if I wanted to bring the wheelchair into the apartment now, at 1:30 a.m., or leave it there and bring it in when he got up for school. After all, it was just a couple of hours and I was really tired.

Suddenly, it occurred to me, “What if there were a fire?” “What would I do without a wheelchair in the apartment to get him out?” I was furious at myself for my stupidity to leave the wheelchair in the garage with no way out in case of an emergency. It’s not a mistake you can make more than once. But I was really tired. I began to debate with myself the odds of having an emergency in the next four hours versus bringing it into the house right away. With Dear Son’s issues, he would be totally dependent on me in case of an emergency and now that he’s a man, I can’t quite carry him very far. I could maybe carry him ten feet tops, but at almost six feet tall and 154 pounds, I am not sure I could carry him any further. In case of a fire, I could carry him to the window and get him out, but without a wheelchair, I couldn’t just leave him on the ground. With that image in my head, the decision was made to get the wheelchair from the garage. Now. It took me a full ten minutes since I had to open the garage and move a rocker out of the way to access the wheelchair. Thank goodness I didn’t leave this task until the morning since I wouldn’t have that kind of time trying to get him off to school. I berated myself some more as I brought in the wheelchair. “How on earth could I have left the wheelchair in the garage and not have access to it in case of an emergency?”

As a mother of a Special Needs child, you can not make these kinds of mistakes. Ever. I was reminded of that this morning when I read about this story. Five babies died in a Sarajevo Orphanage. There was no indication these babies were Special Nneds, however it doesn’t matter. The message is still there. You have to make sure you can take care of your child and get them out of the house in case of an emergency. The article goes on to quote a woman who says, “These children have such bad luck; first they are orphaned and now as babies they die in fire.” Stories like this break my heart. First, because they are babies, and I love babies, and second, because I worry and think about Dear Son and children like him.

I remember over ten years ago, when I first began to think about emergency prepardness when Dear Son was quite young. It was October of 1995 when there was a tragic bus accident in Fox River Grove, a far north suburb, where seven children died when the school bus crossed over the tracks and was hit by a train. “The body of the bus was torn from the chassis and 7 young lives lost. Our investigation found problems with the crossing signal system and the interface with the traffic lights. Even more surprisingly, however, was the fact that it was extremely difficult to hear the train horn inside the vehicle.” I can’t remember any more details but I do remember the impression it made with me. I want to say these were Special Needs children but I just don’t remember. I thought to myself, “What if Dear Son’s bus were in an accident?” “How would they know what issues were caused by the accident versus his disabilities?” For example, suppose he was in an accident and thrown from his wheelchair. How would emergency and hospital personnel know that his inability to speak or walk was due to his disabilities and not due to the accident? How would they care for him until I was notified and could provide information for them? (It’s not so easy to attach medical ID bracelets, necklaces to these kids since they often can cause more accidents than they would prevent. The necklaces can get caught and choke them and the bracelets, well, they get caught on things as well. It’s harder than you might think.)

It was then that I created his first “Emergency Information Sheet”. It is a one page document that lists everything you need to know to treat and care for Dear Son in case of an emergency. This document is on my refrigerator, so that in case of an emergency I can hand it to the paramedics. I have done this on many occasions. It is attached to the back of his wheelchair, in a plastic page protector that says, “Emergency Information Enclosed”. Inside there is information about Dear Son, everything from a physical description including his current weight (it has a date next to it so they know how current the weight is since they would need to know his weight to give him an accurate dose of medicine in an emergency), the date the information was updated, all his medications, his physical and mental abilities, how he needs to be fed and cared for in case of an accident down to the type of diet he needs in he’s in the hospital. I created and refined this document many years ago and never looked back. Typically, whenever anyone in the ER cares for Dear Son and reads his emergency information sheet, the response is always the same, “Where did you get this?” “This is fantastic.”

Emergencies are always at the top of my mind when it comes to Dear Son and his Special Needs. You always have to be thinking about the “what if’s”. Like, when you are driving on the highway and there is a freak accident where someone needs to be airlifted and you are sitting in traffic for three hours while they take care of the victim, what do you need to do? For Dear Son, I have to carry an emergency bag in the car. It has one full day’s worth of medicines, plus syringes, water, something to mix them in along with things to feed him, change him, etc. If I got stuck in traffic for a freak accident, I have to be prepared so that he doesn’t miss his medicines and then have seizures because of that.

You never know when an emergency will happen, but I sleep better at night knowing I can take care of Dear Son and get him out of the house if I have to. In addition, as a Professional Organizer, I have recently started teaching classes for parents and care givers on Home Medical Organization (HMO), called “Parent HMO” (Copyright 2007) where I teach them how to prepare for emergencies as well as how to organize their medical records, medical bills and general home organization as it relates to caring for their Special Needs child.

In the meantime, I can’t help but feel sad over the tragic loss of those little babies. When your child is Special Needs, it changes how you think about a lot of things. And being prepared is one way to sleep better at night.

Tuesday, April 17, 2007


I walked into Dear Son’s classroom and the young man was just recovering from lifting Dear Son into his wheelchair. I had just finished his Individual Education Plan (IEP) this morning and asked if I could go to the classroom to visit Dear Son. I had told him last night that I would be going to school today and that I would try to stop in around his lunchtime to see him. That is one of the high points of my world since Dear Son is always excited to have me see him in the classroom. Where other kids may no longer want to see their parents at school, he glows when he sees me. He hears my voice then looks up to see me, his eyes lock onto mine and never move. He’ll drop his head down as he breaks into a big smile. Everyone notes how glad he is to see me and they can feel the love as he stares right at me. I get closer to him and resist kissing him on the head. After all, this is high school.

One of the classroom aides, is a graduate student who is quite fond of Dear Son. Dear Son has bonded with him too from what I understand. The young man, was sweating profusely when I came in. I felt somewhat relieved to see someone else sweat, someone who could identify with me on a personal level. It takes a lot of energy to lift Dear Son and I sweat too. Sometimes I have to sit down after lifting him, especially if I’ve moved him around quite a bit or if it’s been a difficult move. My back gets pretty sore and well it’s hard sometimes. He agreed it was a lot of work to lift Dear Son and that he had just put him into his wheelchair when I came into the room. We talked a bit more and then he asked if he could do some Respite on the weekends this summer. I said that would be fine and knew Dear Son would be excited to have him come to our house and do things with him.

It’s ironic lately, that many of the people that have begun to care for Dear Son are young, well, much closer in age to Dear Son than before; the aide at school and two of his young babysitters, one who is eighteen and one who is sixteen. I can’t help but wonder when I see these people, what Dear Son must think. Does he like that they are closer in age to him or is it embarrassing for him, especially in terms of the babysitters? They are after all, changing him and providing personal care in terms of feeding him as well.

Probably the bigger issue when I see these people is that I can’t help but think of “what might have been”. I see them and talk to them about their lives. I pay attention to what kind of people they have become, what they are doing now and what they are interested in. It would be cool to see Dear Son all grown up and normal. I wonder what he’d be doing or what he would like. I saw different newscasts this weekend of the high school students getting ready for prom and I wondered what type of girl he’d ask if he were normal. I admit I felt a bit like I missed out. I’d miss the excitement of him getting ready, taking pictures of his date and hearing all about it. The thought of hearing my son speak and having a conversation with him would be exciting. I’d also miss his Dad and I talking about him going to the prom. It’s funny because I can’t say that I ever really spent much time over the years thinking about this and yet, because all of these people are so close in age, it seems to have started the process.

Or maybe it’s because he’s almost all grown up. It’s been a real pleasure seeing the young man he’s become: the long legs, the big muscles, the shaving and his own maturity. He’s grown into being a man. I wonder sometimes if Ashley’s parents will have second thoughts. After all, when your children grow up, it a pleasure for you and for them to watch them mature. Everyone wants to see their kids grow up and I am certain, at one time or another, they wonder what their kids will be like.

My mind wanders briefly again as I am in his classroom. Suddenly, I hear my name repeated again and again as P tries to get my attention. P is Dear Son’s classmate who used to ride his bus home every day. He’s grown as well and is anxious to speak to me. I am happy to see him as well and I have to admit to being a little depressed this year knowing he wasn’t on the bus with Dear Son. I had grown to enjoy our little chats every day while they got Dear Son off the bus after school. And P, well he was a happy and delightful kid. I walk over and put my arm around him. He drops his head down and blushes as I ask him how things are going. I ask him about “school” and he quickly corrects me, “this is high school”, “high school”. “Yes it is, I tell him.” I talk to him for a bit and ask him about his girlfriend. She attends a different high school and they still go out together. He seems a bit worse than he was last year and I wonder what has happened to account for his decline. I finish up with him and go back to Dear Son. I leave and give him one final hug, and try not to overdo it in front of his classmates. I finally lean over and kiss him on the head. I hope I don’t embarrass him when I do that, but I can’t resist.

In the end, I am proud of who Dear Son is and who he has become. I think back to when he was younger and how I wondered what his life would be like and wondered what mine would be like caring for a severely disabled child. I would imagine the “what if’s” , only it was the reverse, wondering what it would be like to have a disabled child all grown up when a normal child was the default so to speak. Now that I know what it’s like to raise him, I find myself switching back and pondering the “what if’s”, only I wonder “what would he be doing if he were normal?” Overall, I love who he is and who he has become but sometimes, on a nice spring day like today, I can’t help but be transported to the “what if’s” and wonder “what if he were normal, what would he be doing?”

The young man lifts him out of his chair once again. It’s odd to see him doing this, a man who is shorter than Dear Son. All of his life, he was just a child and the care takers were adults and always taller than he was. Now, he’s taller than all of them. Just another reminder of how much he’s grown over the years. Come to think of it, so have I. I am in a good place now.

Friday, April 13, 2007

Less Than

We had planned for weeks to come to the big event. The event was a special invitation for the physically and mentally disabled children for a fun afternoon consisting of a children’s play followed by lunch. We had never accepted many of these invitations, up until a few years ago, because, well, sometimes they are a lot of work and even if we plan on doing them, sometimes Dear Son is not able to due to health issues. I say “we” as in Dear Son and I.

The invitations were sent weeks ago. They are fairly detailed, in the sense that they require certain information regarding the children’s abilities or lack thereof. They need to know if they are deaf (they have two women who sign during the play), require a wheelchair (pediatric or adult), the child’s age and the number of people attending. They also want to know if the child must remain in the wheelchair so they know how many theatre seats they need to remove in advance to make room for the wheelchair. I responded by saying that Dear Son was 15, used an adult wheelchair and needed to stay in the wheelchair.

There are a few things which make the day a little tougher. On average, we need to start a minimum of four hours earlier to get ready for an event. In this particular case, I needed to get Dear Son’s g tube feeding started at 4:10 a.m. so he would be finished by 6:50 a.m. and then I have to allow another 15 minutes or so and hope he goes to the washroom prior to dressing him. I have to figure in time for him to go to the washroom, since there aren’t any bathroom/changing facilities there for me to change him. This means that he has to go to the washroom before we go and then I’ll double diaper him so he’ll stay dry until we get home. Once he’s dressed and we are ready to go, it takes another twenty minutes to take the wheelchair totally apart so it fits into the car, then travel time followed by another twenty minutes to assemble it again once we arrive, so we can go inside. All in all, a lot of lifting, since I’ll repeat the entire exercise for the ride home.

We arrive on time and enter the theatre via the handicapped ramp. The ramp is not to code (that means the elevation is one inch per foot) so it’s a steep ramp to go up. Dear Son is 150 pounds and the chair is another 100 so it’s pushing 250 pounds up the ramp. I have some trouble and one of the men offer to help me. We arrive inside the theatre and the usher asks if we are with the adult disability group. I say no and he proceeds to lead us over to the single row for the wheelchairs. This event has 800 attendees, most of which are disabled, and there are exactly six theatre chairs that have been removed for the “wheelchair kids”. Since Dear Son’s chair is so large, the usher decides that we can not sit in this row and tells me that we have to sit in the far corner of the theatre. To be exact, he takes us to the very last row and the furthest possible seat from the stage. The reason is because, the other row was only for “pediatric” wheelchairs and there isn’t any other place for us to go. Translated, it means, they didn’t plan well and didn’t remove enough seats. You have to understand that, for the “adult” disability group, there were several rows removed and plenty of wheelchair seating available.

I tell the usher that we are not going to sit there. I state that Dear Son can not see the stage from that position. I tell him that we were invited guests, and the purpose was to “celebrate” these kids/adults and that it’s not much of a celebration if we can’t view the play. He proceeds to argue with me and tell me in no uncertain terms that we can’t sit in the “pediatric” wheelchair row. I proceed to move Dear Son’s wheelchair back into the row, where he can see the play perfectly. We enjoy the show.

I couldn’t help but feel a little miffed by that situation. We were invited guests. It took a lot of preparation on our part to get there. That is not their issue. They failed to plan well on their side, so we should be inconvenienced? It was also a big deal because the event would be followed by lunch, which Dear Son couldn’t eat since he feeds through the tube and even if he could eat by mouth, he was never able to eat a cheeseburger or foods that weren’t finely chopped or pureed. In essence, we were there to see the play.

I wonder how many times disabled people are treated as “less than” when they go somewhere. Because they require extra assistance or particular seating, it’s a “problem”. It’s not usually a problem to get good seating if you tip someone well but apparently, if you need wheelchair seating, well, that’s a different story.

The rest of the day was uneventful and we had a great time. It was great being able to see and hear the play when you have good seats. It was interesting that the able bodied people who came late, a few minutes before or after 10 a.m., when the play was supposed to start, weren’t seated at the end of the theatre. No, the other patrons had to make way for them in the better seats in the place. Interesting.

A few days later, Dear Son’s Dad would experience a similar issue. He had wanted to include Dear Son in a huge family get together over the holidays. All of the relatives would be there, include the new “great granddaughter” who I must say, is cute as a button. But one relative who was hosting wasn’t keen on having Dear Son there. After all, the wheelchair is pretty big and he gets “in the way”. Of course, there are the g tube feeds and the pump/pole and well, it’s just a lot. Dear Son’s Dad was furious. Of course, I guess it’s only a big issue if you are a kid in a wheelchair. If you are an elderly adult, and people make accommodations to assist “you”, it’s o.k. But well, Dear Son, that’s another story. The new baby and all of the baby stuff, well, that’s not a problem.

I couldn’t help but think of these two events, as nothing more than “less than”. When people define you as “less than”, somehow you aren’t as desirable. If you take maybe a little more time to do things, well, you are “less than”. After all, we live in a “more than” society. We reward people who fall “above the curve”. We award those who strive to “get ahead”. We associate those qualities with winners and leaders and all of that good stuff. We don’t care much about the “less thans”. The ones who take a little more time to do things, the ones who are always “below the curve”, the ones that make the “other people” shine when comparisons are made.

But everyone can be a “less than” in a heartbeat. It only takes one accident, and your life can be forever changed. But I have to wonder, when will it stop? I think sometimes, what a different world it will be in a few years, as the baby boomers age and more disabled people will be living. Who will take care of them? And how will we treat them? Whatever happened to kindness? Is that the best we can treat people? Being disabled is not about being “less than”. Being “less than” is when you put yourself ahead of those who have less or are able to do less.

Saturday, April 07, 2007

Someone Special

It had been two years since we had been to this event. Every year, many of the local Lion’s Clubs in the surrounding area host an annual event called, “Someone Special” where they celebrate the mentally and physically challenged disabled children and adults in the area. The concept is that they are special and in turn, they deserve a “special afternoon where they are comfortable, happy and celebrated for who they are.” This year, the event would be the play, "You're a Good Man, Charlie Brown". They hosted 800 guests this year. We had a great time and Dear Son seemed to really enjoy getting out of the host and attending this event.
I took many pictures however I don't think it was Dear Son's best day. I didn't think any of them turned out particularly well, which is a bit unusual for him. I was amazed to see how much he has grown. I never really notice it as much until I see the pictures. The picture on the left is of Dear Son at this same event two years ago, when he was 13 years old and the one on the right is how he looks now, at age 15. Those legs look very long.
Secondly, my apologies for not posting anything in the last week or so. I have been exceptionally tired and not getting more than 1.5 hours sleep in a row. That, along with working more hours and starting a new business have left little time for creative pursuits. I will probably take a few more days off then start back again. Ex Utero and I will be writing the Baby Toby sequel in another week or so and from what I understand, he has several "guest" bloggers which will make some cameo appearances. It looks to be quite an exciting sequel!

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