I Have Down syndrome

Courtesy of the NDSC......

........The impact Down syndrome has on an individual is, well, individual. In the majority of cases, the result is a mild to moderate level of impairment. For those folks, life will present a fair share of challenges, but most with patience, creativity and understanding can be overcome.

 

A few will experience very little impairment. But the reverse is also true. For some individuals with Down syndrome virtually everything they encounter will prove demanding. But, again, each is an individual and will be a unique blend of strengths and areas of need, just like all of us.

 

Neither I, nor anybody with but two copies of the 21st chromosome, can tell you precisely what it is like to have Down syndrome.

 

If I could be an average person with Down syndrome, however, I suspect the experience would be quite like what I know as a person with just 46 chromosomes. 

 

Virtually all that makes any of you happy or sad, bored or excited would have the same effect on me. Loud noises would startle me, the unknown might scare me. I would laugh at funny movies and cry when sad. I would love my family, cherish my friends, grieve if they died and take joy from my accomplishments.

 

Importantly, I would want to be treated fairly and as an individual. Injustice would annoy me and being judged by standards that do not apply to me would irritate. All of that would come from the part of me that I share with all people.

 

A part of my experience, however, would come with difficulty.

 

I have Down syndrome.

 

There would be some things I could not or would struggle to understand. I may receive far more information than I can process and have difficulty expressing my wants, needs and ideas. I am pretty sure that the more exact and concrete people are in what they tell me, the better I would understand what they say.

 

If they could break down complex things into simpler pieces, I might understand them better. And, when I try to tell people things, I might be extremely exact and literal. For example, if you asked me if I had watched a video last night, I might say no, but in response to further questioning I might tell you that I did watch a DVD.

 

I might have trouble understanding abstract ideas. For example, concepts of time you use routinely – like soon, next week or ten years ago – may have little meaning.

 

As has been noted by the Adult Down Syndrome Center in Chicago, I might be able to recall events long past in vivid detail – so vivid in fact that I might think they happened only moments ago or even be taking place in the present. That might be very painful at times. I might, for example, recall the death of a grandparent as if it had happened just yesterday when, in fact, it may have been years ago.

 

Finally, I think it is safe to say that my passage as a person with Down syndrome would be driven more by my experiences – by how I was raised and educated – than by the fact that I have Down syndrome.

 

If, as a child, I was isolated from other kids or shorted on education; if people assumed that I could not learn and therefore did not teach me or believed I was beyond discipline and therefore set no rules, boundaries or standards, I would have few skills and behave inappropriately.

 

If on the other hand, I’d been treated like any other child – a being packed with potential just waiting to be taught and nurtured – I would likely be filled with useful knowledge, packed with self esteem and get along very well in my world.

 

If that is true, then how would I be unlike the rest of you?

 

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