Down syndrome

[medichopeful]

This happened a while ago, but I thought to ask about it earlier today and so that's what I'm doing.

Last semester, I was standing by at a football game at my campus, working with an EMT (I was the first responder. We sometimes run 1 FR/1 EMT). Anyways, the football team ran onto the field, as they always do. Each team (they were high-school teams) had at least 1 member with Down syndrome. These were not actual players, they were just there with the team.

As the members with Down syndrome ran onto the field, I smiled at them and made eye contact, trying to be friendly, as I didn't really know any better. Unfortunately, one of them didn't take it that way. I think I scared him, because he started crying. I obviously didn't mean for that to happen.

Here's my question: what are some tips for dealing with people with Down syndrome? I know I will run into more in the future, and I want to make the meetings go as smoothly as possible, both for them and for me.

Thanks!
Eric

 

[Sasha]

I found when dealing with people with down syndrome and mental retardation it is best to use simple words and questions. I haven't had a whole lot of them, but those I have had responded better to "Do you hurt anywhere?" than to "Are you in pain? Are you short of breathe?" It also best to explain EVERY thing you are doing BEFORE you do it. Don't smack your scope on their chest and then tell them you're going to listen to their breathing. But that is something you should do with every patient. It's like a big child.

I've also found out that caring for someone with trisomy and dementia is like caring for a very large infant.

 

[Seaglass]

The problem with developmental disorder patients is that you'll get people with the same diagnosis who are very different behaviorally. It's usually a bad idea to make eye contact too often or strongly, though, until you've seen how they react to a little. Remember that they're used to people staring at them as freaks, and those with any social awareness can become very touchy by an early age. A lot of them also don't trust authority figures, or strangers, often with good reason.

A lot of DD pts, especially with autism, tend to be very sensitive to sensory stimuli. The flashing lights might hurt their eyes. The siren might hurt their ears. The feeling of tubing may be simply intolerable, and so on. They might really hate being touched. They're not just being difficult; they're having a tough time processing the sensation, and can't help it. Take things slow and explain what you're doing, like Sasha said. Be prepared to make adjustments where possible; it'll make your life a lot easier.

Rocking is usually a distress sign (though not always--it's a "stim," or self-stimulating behavior, which can be done for any number of reasons). They find it comforting, and it often means they're being overstimulated. A lot of rocking pts aren't going to be very responsive for a bit.

A lot won't get facial expression, body language, or tone of voice. Be literal in everything you say. Learning to talk like that is a lot harder than it sounds, so don't worry if you mess up. Just be willing to explain what you really meant.

Most importantly, don't condescend. A lot of people who aren't otherwise very socially aware can smell that a mile away.

Edit: Read up on disability etiquette. It's more written for physical disabilities, and not so much for medical providers, but still worthwhile as a general guideline.

 

[CAOX3]

I usually incorporate the parents or caretaker in treatment including having them ride in the back with the patient if possible. Feeling comfortable is going to be the utmost importance to these pts.

I could be completely wrong this has just been succesful for me.

 

[Seaglass]

I usually incorporate the parents or caretaker in treatment including having them ride in the back with the patient if possible. Feeling comfortable is going to be the utmost importance to these pts.

I could be completely wrong this has just been succesful for me.

I'd second that (unless, of course, the call carries some suspiscion of abuse). The parents/caretakers may also be much better at understanding the patient, who may not communicate normally or give normal nonverbal signals.

 

[Don Gwinn]

Something else may have been going on, anything from the pressure and excitement of the day to an argument or problem you didn't know about. Down Syndrome causes mental retardation, but the thing to remember about mental retardation is that it is literally retardation--as in slowing down. A mentally retarded person simply processes information and carries out adaptive tasks more slowly than a person in the "normal" range of IQ. That could mean anything from someone who can literally do anything you can do as long as he has enough time to work it all out, to someone who cannot cope fast enough to adapt to much of anything new and is thus completely routine-dependent and must be attended at all times.

There's also the matter of how certain you were that this honorary player suffered from Down . . . did you know that for a fact? Other syndromes can cause the facial characteristics often associated with Down, for instance. And finally, you have to keep in mind that a person diagnosed with one disorder, like Down Syndrome, may show symptoms of others that go undiagnosed because the primary diagnosis makes it impossible to be definite about certain secondary diagnoses.

I'm a Learning Behavior Specialist I (which is a fancy way of saying beginner) special education teacher by trade, and I've had students who were presented as mentally retarded (and were) but showed symptoms of autism and responded well to autism interventions. They were extremely routine dependent, had what appeared to be communication deficits, obsessions with objects (my favorite little guy had been born hydrocephalic--he literally had a five-second attention span most of the time but could identify the carriage and engine manufacturer of any school bus in the district, as well as the wheelchair lifts in all the accessible buses.)

Now, you couldn't have diagnosed those kids with autism, because our methods of autism diagnosis require average or above-average intelligence in the pt. to work. But you could treat them like kids with autism, and they would be happier and learn more.

In other words, you didn't necessarily do anything wrong.

Actually . . . . were you in uniform? Or even in uniform with a shiny badge? You never know how someone with a learning disability has learned to react to the police, and often anyone in a uniform is suspect.

 

[Medic744]

I'd second that (unless, of course, the call carries some suspiscion of abuse). The parents/caretakers may also be much better at understanding the patient, who may not communicate normally or give normal nonverbal signals.

Parents/caretakers are wonderful at being a go between for you and the pt. Again unless abuse is suspected. The best choice is to go slow, if possible, explain everything, and treat them with the same kindness and respect as any other pt. Just keep in mind not to treat them as if they dont understand anything and are stupid. You dont know their level of function and understanding. I watched a nurse treat a pt like crap because she assumed the pt didnt understand and was being demanding because he was Down Syndrome. I knew the pt because he was an asst football coach at my high school and knew he wasnt making any demand that anyone else would have made. I took care of the request and let the nurse know that she was out of line, in front of her supervisor.

 

[foxfire]

Also take things at there pace. Don't rush them into anything if you can.
being calm also helps. Alot of them read emotions very well, they will shut down out if you are rushing them.
everyone else has good points also.

 

[firetender]

Working with these special people was always the hardest of it all for me. You see, I have a brother, ten years older than me who is one such person. There are many extenuating circumstances in the situation and our relationship that have always made it one of the most emotionally challenging aspects of the work I did as a medic in the patients I faced.

So, here's what I learned; and to be honest, it was NOT while I was a medic.

There are certain parameters that define the afflictions you're talking about, if identifiable. But many of these people have been hit with multiple blows. If you expect to study and find out about each individual affliction, its symptoms, the "general mental capacities" of the afflicted and then fit your patient into a specific box, you're going to drive yourself nuts; and not get too far with the patient.

Working with these people is very much a moment-to-moment thing. You must constantly keep your eyes open to "What Is" rather than seeking "What's supposed to be". For years I treated my Brother as if he were damaged in certain ways. I swear to God I was 50 years old before I realized that he was an eight year old boy who was in a 60 y.o. body! He had always been an 8 year old boy, I just refused to see it, and, like the world around him, kept pressing him to be more than he was capable of being.

So here's some thoughts for you to consider; I have no formula.

Each person who is developmentally challenged is unique. Do your best to meet them where they are at. Often, you can gauge what age a person is working from, regardless of numeric age. Relate to them from that perspective. You can meet a six year old who works from the perspective of an octogenarian as well.

Space is very important. Take the time to observe and then carefully test the space the patient needs between you and her/him to feel comfortable. Touch can be a very strong tool, but it must be approached consciously, without making assumptions.

...and Touch may be the only way you can establish a connection; with the emotionally challenged, which often is a by-product of the primary affliction, establishing trust may make all the difference in your effectiveness in what you've been called on to do.

Without abandoning speech, adjust the proportion of time you spend communicating non-verbally with the patient to suit his/her tolerance. Some can handle a sentence or two, but are limited in what they can "hold" at any one time. Work with the capacity that is by starting small.

And do be aware, there are many caretakers who have placed their charges in a very narrow box and they, themselves cannot see what is really there. Sometimes, they will interfere because things have always been done this way. If that gets in the way of what you know you're supposed to do, don't automatically assume they know what's best. Trust what you see. Use them rightly!

That's just off the top of my head.