The joy of the “disabled” child

Earlier today, I wrote that fearing a bad genetic outcome is the wrong reason not to get pregnant.  Tonight, completely coincidentally, I had the pleasure of attending a talent show in which the performers were all developmentally disabled children.  It was the best show I’ve seen in I don’t know how long.  Despite disabilities ranging from autism, to cerebral palsy, to what was to me undifferentiated mental retardation, each of these performers gave his or her all to the audience.  Surrounded by love and approval, they had no stage fright, no performance anxiety, no artistic neurosis.  They just got out there and sang a song, danced, or played a musical instrument.

It is quite obvious that each of these children is a challenge for his or her parents.  Long after their siblings have grown up enough to give Mom and Dad some free time, these kids need constant supervision.  And when a brother or sister is making his way alone in the world, these children will continue to need full-time care.  I’ve known several parents of handicapped children over the years, and all of the parents were worried about what would happen to their children when the parents’ strength and/or money ran out.

Those worries are real . . . and yet!  Those kids brought so much joy.  With fully-abled children, we take their accomplishments somewhat for granted.  We expect them to read, sing, dance, play music, or whatever else.  When they do well, we applaud them, but we also think, “Of course that’s what they’re going to do.”  With the children tonight, however, everything they did exceeded expectations.  Every note sung or played, every dance step, every happy chortle was special, because these kids are special.

I feel blessed every day that my children were born physically and mentally intact.  I honestly don’t know if I would have the moral courage, not to mention the mental and physical stamina, to raise a handicapped child.  Watching the children tonight, though, I was reminded, as I often am, that disabled children are not only a greater burden, but also a greater gift to their parents than so-called normal children.

Incidentally, while I’m on the subject of children whose disabilities are offset by tremendous gifts, I’d like to recommend a website that an autistic young man writes:  Ido in Autismland.  Ido has confounded autism experts because, contrary to theories about an autistic child’s empty mental and emotional state, Ido is an academically gifted young man who is thoughtful, articulate, and an extremely good writer.  Reading his blog provides a rare opportunity to see behind the often blank face of autism.

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  • Libby

    “I honestly don’t know if I would have the moral courage, not to mention the mental and physical stamina, to raise a handicapped child.”
    It’s like any other life challenge, you deal with each part of if as you need to. To look at the list of things you’ll have to deal with over 5, 10, 20 years would be too overwhelming. The other part that’s often overlooked when considering a theoretical or unborn disabled child is that you’ll be doing this with a person, not some inanimate object. It’s a rare person that would declare that they just couldn’t handle a gravely ill or injured spouse or parent, because you take into consideration the relationship, the person that it is happening to. You have a relationship with the child that transcends their condition.
    In addition to having a greater appreciation for accomplishment, you have a greater appreciation of what constitutes a crisis. I’ve seen my sister shrug off very public meltdowns of her autistic daughter, which would horrify most parents, as if it’s no big deal. Because it isn’t. And my husband says whenever we have something bad happen in the family (job layoff, etc.), “Well, it’s not like it’s heart surgery.”

  • Simplemind

     thanks very much for the IDO link.  It is very helpful to see him write about his perspective.  Especially how he describes stimming. It makes much more sense to me now – as I compare my kids actions to his descriptions.  Very interesting and thought provoking.   He also seems like a heck of a nice kid, very mature and self aware. Very interesting indeed.

  • Danny Lemieux

    Someone once said that societies should be judged on the basis of how well we take care of the weakest and most vulnerable around us.

    For those of us that believe we are on earth to fulfill God’s purpose, even if we can’t easily discern that purpose, it’s easier to understand that handicapped kids have a lot to offer us in teaching us the values of compassion and love for our fellow human beings. Also, their handicaps may be intellectual or physical, but I would rate their handicaps as far less harmful than those of other people in perfect health and of great intellect who suffer from handicapped souls. Sadly, those in the latter group are all too common.

    Finally, regarding autism, if you haven’t seen this TED presentation by Colorado State U. Prof. Temple Grandin, who is autistic, you should…or, alternately, see the HBO movie that was made about her. The world really does benefit from all kinds of minds, especially those that were wired just a little bit differently.

  • Kevin_B

    Allow me to say a few things, mostly regarding the autism part. First of all, as you might or might not be aware of, autism is a spectrum of disorders; it’s not a single disability. While there may be some common traits, the different disorders differ – simply speaking – in the symptoms and the severity. Some autists are almost completely unable to communicate to the outside world, cannot speak and cannot be selfrelient. Other, ‘milder’ forms are called ‘high-function autism’. These people are often highly intelligent, and while there disorder may, at least at first, seem to pass under the radar, they do suffer social and communicative dissabilities. They are not unable to lead a normal life, but it’s not always easy for them.

    I’m speaking somewhat from experience here. I myself was at age 14 diagnosed with Asperger’s Syndrome, on of these high-functioning forms of autism. It is sometimes a pain to live with, most certainly. But I must say it has become easier as the years go by (I’m almost 23 now). You do learn to deal with things, and some things have gotten easier.

    Right after I was diagnosed, some rat bastard of a psychologist (sorry, no nicer way to put this) had the temerity to assume I was destined to a life of, basically, misery and incapacity. He assumed I would never be able to finish high school in the study stream I was in at the time (which was Latin – Old Greek), and probably wouldn’t even ever be able to travel by bus and train on my own. And I wasn’t even diagnosed with a severe form. Anyway, luckily my mother put a stop to this, and I never saw that piece of garbage again.

    Yes, there have been a lot of difficult times over the year. But, I did finish in Latin – Old Greek, and have by now achieved a Bachelor’s Degree, and am currently working on my Master’s. I travel, on my own, by train, bus and bicycle every day. And I have an incredible distrust, and dare I say it hatred of psychologists and psychiatrists.

    On another note, some very famous people from history are said to have been autists of the high-functioning kind. Amongst others, Albert Einstein and Leonardo Davinci. You can’t seriously say they were in any way underachievers or uncapable, now, can you? I’m certainly going to watch the video Mr. Lemieux posted. Sounds rather interesting.

    Finally, with regards to children. One day I would have said I wouldn’t want any children, because I wouldn’t want them to go through some of the things I have. But I have now realized I don’t have it all that bad, at all. Also, if I ever do have children, I might just have the right tools to help them survive, and if at all possible thrive, if they were to have the same disorder. That is, assuming that it is at all hereditary to begin with.

    With kind regards,
    Kevin B.

  • Beth

    Thanks for the post as well as the video link from Danny.  A special thanks to Kevin–I have a friend whose son was diagnosed with Asp a few years ago–a shock and then relief.  I want ot share this post, especially your comment with her.

  • Earl

    Kudos, Kevin_B:  You may be only 23, but you’re far more lucid than many a lot older. 
    Furthermore, your outlook is light years more realistic and humane then any of the people I know, read, or hear from who consider themselves of “the better sort”.  Peter Singer is only the most notorious of these.
    I wish you the best, and I’ve said a prayer for you…..
    By the way, there ARE decent folks who do psychology and psychiatry (my Mom was one), but they’re by no means common, so I’m supportive of you staying far away from them.
    G-d bless.

  • Kevin_B

    Thank you, Beth and Earl.

    Asperger’s and similar disorders can be a pain, absolutely, but as I alluded to in my previous post… there are worse things. It is something that you can live with very well, and you can be happy with it. It doesn’t have to be an impediment, I believe.

    Such things don’t doom people. But, you will have to work – hard. I value that, even if I may profoundly lack in that respect. At least, that would be my advise and outlook.

    As for the psychologists and so forth: I don’t trust them anymore, and I don’t think I need them either. I can work it out largely on myself, and family and friends help too.
    Thanks for the responses and well-wishes. Earl, I must remark that I am not christian, although I am not an atheist either. I don’t mind people saying prayers or God bless at all, though. Doesn’t bother me.

    Kevin B.
    PS: I’m a non-native speaker of English… I hope that doesn’t show too much.

  • Earl

    Kevin_B:  I would NEVER have guessed that English was your second language….good job, my friend!       I can look back now and see a spelling glitch or two, but my brother doesn’t spell as well as you do, and he’s a native and a lawyer!!  :-)
    Happiness is a choice – something that it appears you’ve figured out.  Dennis Prager has a magnificent book out on the subject…it’s probably long enough ago to find it in the used ads on Amazon for very little money.  Great stuff.
    I have lots of non-Christian friends, and I pray for all of them (as well as for the Christian ones!) – some more fervently than others.  If they don’t like the idea, I don’t tell them, but I find that mostly they’re like you and value the thought, if nothing else.  People who would get intensely upset about it aren’t my type, anyhow……
    Stick around the Bookworm Room – plenty of very nice people here.  Welcome!