When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.
Now I wonder about their life, their future, their heartaches to come. That change occurred in me when a friend’s son was born. As the child grew and changed. As autism and seizures took him away.
When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.” I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand. How they lost their little boy without a funeral.
I thought about how unaware everyone was when this happened.
Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities. How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family. How these parents are expected by our society to be super-human. How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point). How they are forced to advocate for their child with healthcare providers, educators, legislators. How they are supposed to have the money and wherewithal to pay for whatever special services they need. How so few people understand that these parents are all alone.
I held a tweetchat on Thursday April 12 and advertised it on LinkedIn. I received this response from the father of a child with autism
Dear Dr. Kathleen Hoffman!
You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!
Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?
The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.
Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….
The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.
I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.
Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.
I am humbled by this father’s comment.
We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world. Please do your part to spread the word and advocate for these devoted, loving people. They need our help.