Our sons have autism and other challenges. The experts wrote them off. The experts were wrong!
It has been a long road. Nineteen years ago our son Kenneth was changed overnight (literally) from the sweet loving child he was into something uncontrollable. The experts – medical, psychological, educational, etc. were worse than useless in our search for answers. After three years of struggle, Sue and I discovered the word Autism. Stephen was also affected but in a different way. Joseph nearly died at age one due to a three-hour grand mal seizure brought on by a fever. The drugs they gave him to stop the seizure depressed his respirations so much he was life-flighted to a major medical center for care. Devon was almost missed in our efforts to care for Ken, Stephen, and Joe but he too was struggling in some ways and we discovered he
was also legally blind in one eye. More visits to experts who only said that we should accept that our four youngest children would NEVER be able to care for themselves and would REQUIRE assistance their entire life.
I have never been one to accept pronouncements from experts as if they were carved in stone unless the expert can demonstrate their ability to walk on water and change water into wine. So Sue and I got up each day and did our best.
We eventually homeschooled our kids, all eight. Ken, Stephen, Joseph, and Devon all became altar servers at church, participated in Cub Scouts and Boy Scouts, played Miracle League Baseball (not Ken he hates baseball), did Judo and Hapkido. They all received the Sacrament of Confirmation,
Ken asked to go to public high school when he hit 10th grade. With trepidation, we agreed because we could tap into their connections for vocational training. We had to constantly urge the school to challenge Ken to stretch his limits. Stephen, Joe, and Devon also entered public school, and for them too, we pushed the system to push them.
This past week, Ken and Stephen received their Red stripe in Hapkido and Joseph and Devon got their Yellow belt. Ken works about 25 hours a week at Kentucky Fried Chicken and has done so for about a year now. He is doing really good. Stephen is looking for work and now Joe and Devon as well. Devon and Joe also babysit their 2-year-old niece each afternoon so her dad can go to work until mom, my daughter, gets home from work. So much for not being able to do anything.
The journey’s not over and hopefully God will grant me enough years of life to get my sons to the point where they no longer need my or their mom’s help.
The experts were expert ONLY in an academic field. They were not experts on our children. I was and so was Sue. We refused to give up on our kids when we constantly were told to do just that.
To any parent facing similar ordeals, please, Do Not Give Up. The journey is incredibly scary and hard. But I promise you, no one knows the future for your son or daughter. It is better that their reach exceeds their grasp than to set the bar so low that success is truly meaningless to them.
If you know one challenged person – YOU KNOW ONE CHALLENGED PERSON. The biggest obstacle people with mental and physical challenges face are the so-called normal people, especially the experts, who believe they can predict the future and assume incompetence and failure in the disabled. They need to get out of the way.
I do not know how much further my children will go but I will be both alongside them encouraging them and behind them nudging them to go further. One day maybe they will be in front of me as old age slows me down and I will be able to look to them for help. Who knows? Not me.