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.


zoe said...

Another excellent post Dream Mom and another example of how a mother of a special needs child always has to be thinking and planning ahead for all the what if's. The timeliness of seizure medicines is important to keep your child stable. My son has intractable epilepsy also and I hate it when I am late or make a mistake because he pays the price for it. They truly depend on us to get it right or the quality of their life suffers. That said, we are human and we do make mistakes sometimes-- but we learn fast don't we!! My own system of record keeping has evolved over the years and keeping everything current and updated is important. I am currently writing a support plan for my son who will be attending summer camp--away from home for 5 days. A great deal of time goes into this because the more thorough I am at giving a clear picture of who my son is and what his needs are the more he will get out of his camping experience. And he loves camp! The emergency information sheet is a great tool and I am glad you are getting the opportunity to help other parents organize and prepare for emergencies. With your background, experiences and expertize I am sure you are a great teacher and advocate for these parents!

catherine said...

great recommendation. i just updated my son's!

madge said...

this may sound odd, but does your son have a wallet? i mean, he doesn't really need one like you or i would, but what if he WERE in an accident and separated from his wheelchair, etc. since he is a man now, EMS personnel would look for a wallet. what about something waterproof that you can put in the back pocket of his pants with the information sheet you mentioned?

Fat Doctor said...

Very frightening. I will say that as "safety girl" I have already rehearsed how I'd get Son out of th house. His bedroom is on the second floor, mine on the first. We have a rope ladder hanging from his window in case the staircase were in flames. And, along with what Madge said, I actually safety pinned a ziplock baggie with contact info for us to the back of Son's shirt when we flew for T-giving. Husband was horrified, insisted I removed the "dog tags."

The Preemie Experiment said...

The thought that consumes me the most is what would happen in a fire if I could not get to our daughter. Although she is physically capable of getting herself out of her room, she has very severe sensory/anxiety issues. When the smoke detectors started sounding, she would be on the floor with her hands over her ears, screaming bloody murder. She reacts this way with everyday loud noises. We have tried to practice, even by setting off the smoke detectors ourself, to no avail. We purposely chose the location of her bedroom when we had our house built so she would be low to the ground by going out her window. Unfortunately, she would be stricken with fear and would never leave her bedroom.

Very scary!

Great idea about putting the info on your fridge Dream Mom. I have a copy in my car, purse and at school. I never thought of keeping one in the house.

The Preemie Experiment said...

Forgot to add... Dream Mom, I also remember that bus accident. We didn't live too far from there, in Hoffman Estates at the time (we now live out of state). It was horrible.

I know it may sound neurotic but I don't let our daughter ride a bus to school. Statistics show that more accidents happen in cars but I just can't seem to bring myself to put her on the bus. I have thoughts of loud kids and my poor kiddos being crouched down covering her ears and crying.

Dream Mom said...

Thanks, everyone. Good suggestion about the wallet. Fat Doctor-LMAO at the dog tags, however it works. I made an emergency information sheet for myself that I keep behind my driver's license in case I am ever in an accident.

The Premie Experiment-I totally understand your concern about the fire. I always worried about a fire too, down to the ladder Fat Doctor talked about but figured I'd need one with more stability since I'd have to carry Dear Son down it as well and the whole rope thing wouldn't be firm against the house. As for Dear Son, he has no concept of danger, so when things go wrong, he thinks they are funny and laughs.

As for the bus accident, that was horrible. I remember some time later they wanted to send Dear Son to another school, further away. I drove to the school, which meant passing over railroad tracks and being on the highway. I refused to allow him to go and got an attorney to fight it citing that the time to transport would be well over an hour on the school bus and state law deosn't allow transport to exceed that; I did it because I didn't want to worry about the bus getting stuck or crossing the railroad tracks and the fact they would be transporting them on the highway in the winter.

Finally, Dear Son has little protection in the case of an accident. His hands, arms don't really work so he could not use them to brace himself in the event of a sudden stop or crash.

There are so many concerns with children of special needs and riding the school bus.

Amanda said...

The Hurricane Rita evacuation gave me a horrible taste of what it was like to be in an emergency situation. I was stuck in deadlocked traffic for six hours alone with my son, then 4 (PDD-NOS) and 22-month daughter. There was nowhere to pull over to go to the bathroom. I feared my car would overheat and we would suffer a heatstroke without air conditioning. Several of the deaths during the evacuation were caused by that. He truly did amazingly well during the process. It was the next day when he kind of fell apart. Next time we're getting out earlier! That's my plan. Those of us who went through Rita and I am sure Katrina will never feel quite the same about Hurricane Season.

Kath said...

I have to ask Dream Mom, who takes care of you? Getting by on an hour of sleep here and there has to be horrible.

How do you do manage to take care of Dear Son and get thru the day without falling asleep?

Dream Mom said...

Kath-I try to take good care of myself for the most part and I get a good night's uninterrupted sleep two nights a month and that works for now. I'd like more but we all do. Other than that, it's just a matter of taking care of myself, eating foods that give me energy and staying organized.

Dreaming again said...

Hello Dream Mom, I just dropped by to let you know, that my friends baby, the one with the brain cancer, passed away this morning at 4 am.

Thanks for your support last summer when she got diagnosed. I was re reading some of my posts when I first posted. It's been a long year.

Anyway, just wanted to let you know.

Dream Mom said...

Dreaming Again-Thank you for letting me know. I am sorry to hear about her baby; please send her my heartfelt condolences. She is blessed to have you as her friend.

Kelly said...

I live in California, so the thought of a huge earthquake making things difficult for my child haunts me all the time. We have extra g-tube supplies, extra formula, extra diapers. But still, even watching what people went through in Katrina, I just cannot imagine not trying to be prepared, especially when my daughter's needs are so special, and life sustaining!

Thanks for this reminder, and excellent information!

Matt said...

Never thought of how important not being organized could be, until I read this blog.

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