Appreciating Progress

There is a lot of debate in the disaiblity community about what to expect from children with disabilities. Some people say we need to treat them the same we would typical children, because the world isn’t going to adapt to them when they’re grown. Others say we need to stop expecting and start encouragign, valuing and being grateful.

Both these philosophies have some value. I derive my quality of life from meaningful activities rather than meeting expectations of measureable progress, but measureable progress is what politicians and insurance companies look for when fudning or deciding on funding of our care.

It is my belief that expecting a child to be the best self they can be, does not contradict being thankful for the little things they achieve. However, for this, we need to let go of comparing our children to others at all times. I can see how life skills training is important, because, well, the care system is on a tight budget and that isn’t likely to get ay better. But that doesn’t mean that as people with disabilities, as parents, as friends and family, we must take these skills for granted. They’re important, yes, but they don’t come naturally.

It’s true that health insurers won’t care to appreciate the little achievements your child has made, particularly if they don’t end up costing the insurer less money. Same for future employers if the grown child’s skills won’t make them more employable. That doesn’t mean you as a parent need to stop appreciating your child’s progress. Also, as parents, you will more than a future employer or health insurer appreciate progress that is not measureable, such as the child growing into a strong-willed, kind, honest individual, for example. Continue to appreciate this.

I derive quality of life from meaningful activities, from contact with caring relatives, from spiritual growth. These don’t cost my health insurance company any money. If you as a parent don’t appreciate your child’s activvities, friendships and spirit, who will? Friends, if they’re genuine, appreciate your child for who they are, not for the life skills they have or grades they earn in school.

4 thoughts on “Appreciating Progress

  1. Astrid, it is unfortunate that most institutions and corporations disregard quality of life for those who are disabled in any way. They are, as you rightly said, only interested in whether or not you progress to make a contribution (pay taxes, etc) to the system. This forces disabled individuals into quite a tight corner because, sooner or later, they will reach the limits of their ability to progress and will be written off and made to feel worthless. It is happening… now, almost to the point of eugenics as voluntary euthanasia becomes a political and very current topic.

    Keep on the way you are! There will also come a time when the only thing any of us have left are the connections we have made and the spiritual growth we have undertaken. Much love, blessings and peace to you!

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    1. Jean, I totally agree. I was inspired to write this post byaa couple of special needs parent bloggers who wrote about progress repots, the expectations they had for their child when they were born, etc. I was also inspired by what’s happening in the Netherlands (where I live) now, where there are budget cuts to long-term care of over one billion euros. My husband and I were debating these and the philosophy behind them, which is claimed to be self-reliance blah blah blah. Well, quite frankly, that may be so but the real philosophy is: too bad for the disabled but we don’t have the money. Euthanasia is its own topic as I’m not personally against it but am against the discrimination inherent in it (ie. only those who are judged to be severely disabled can be euthanized, while their non-disabled neighbor’s life may suck twice as much). My point with this post was, everyone’s life can be good or bad and what should matter most is subjective.

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  2. “It is my belief that expecting a child to be the best self they can be, does not contradict being thankful for the little things they achieve.” I think this is a beautiful and perfect philosophy Astrid, for all beings.

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