I recently read a news story about a mom from Illinois who drove five hundred miles to Tennessee with her nineteen year old developmentally disabled daughter and left her in a bar-just got in the car and drove away without her. The state is not going to press charges because the state’s attorney said they have no precedent for such action and did not know how to proceed.
The mom reported she had been trying for ten years, with no results, to get help with her daughter, who has the mentality of a three year old and was desperate for an alternative living arrangement for her. I guess some folks resort to extreme measures to make a point. The daughter is now being cared for by the state. Comments from people, following the article, ranged from, this mom is a selfish creep who should be strung up by her toenails to actual empathy for her situation.
The news flash here is not all people with developmental delays are alike. Some are happy and compliant, some are stubborn and unreasonable and a few are downright aggressive and some swing back and forth at any given time through all of these descriptions. Some can work; others can’t or won’t follow the simplest directive. There is a broad range of cognitive ability, personality and behavior on the disabled scale. Most of the adults who get media coverage are those who function at higher levels of ability and do something that was once thought impossible; get married, live independently, become a violin virtuoso or someone like the boy with Aspersers (a form of autism) I recently heard about, who is going to compete on a popular TV game show because he has an astounding memory for facts and trivia. Many in the population, however, require constant supervision and care, and those who are difficult to manage from day to day create unimaginable stress on caregivers, parents, siblings, marriages and families.
You expect a toddler to act like a toddler and you can also pick them up and move them if they’re up to something mischievous or dangerous. But a nineteen year old who behaves like a three year old, might be taller than you, stronger than you and outweigh you and that creates an entirely new struggle that quickly converts to continuous exhaustion both emotionally and physically, leaving a care giver or parent overwhelmed and sometimes desperate.
Remember the 1990’s movie, “Honey I Blew Up The Kid” which depicted a stereotypical geeky inventor dad who accidentally turned his two year old into a giant? The over-sizedkid roams the town, inadvertently destroying things and putting him and others in harm’s way; developmentally he is incapable of sound judgement or reason. This movie is a somewhat accurate metaphor of the behavior of some adults with mental delays. Imagine taking care of your two year old forty years from now in adult form and you get the picture.
In an ideal world, people like this mom, would receive all the support and encouragement her situation warranted. While I certainly don’t condone what she did, after thirty plus years being Jonathan’s mom and main care giver, I can relate to her distress. There are too many days when Jon is so moody, stubborn, ornery, uncooperative and unbelievably slow that the minuscule events of everyday living turn into nonstop skirmishes and ridiculous drama. It is comparable to living with a perpetual adolescent.
There are moments when I wonder how much longer I can hold on, how many more years can we do this? But I love our son unconditionally so I put one foot in front of the other, day after day and plod on. When necessary, I count to twenty, fifty, one hundred, pray a lot, sing, ask God for grace, strength, patience, recite scripture, pray some more, look for the humor and laugh as much as possible. I participate in all forms of morally correct and legal stress relief to keep my wits about me.
And I write. I tell you the reader, what it’s like in this world so you will understand more, criticize less and possibly be inspired to lend a helping hand or a word of encouragement to a worn out, weary soul.
Many times throughout the four gospels; Matthew, Mark, Luke and John, preface the interaction of Jesus with people as, “He was moved with compassion…” When Jesus physically left the planet, the responsibility to be His hands, feet and heart in action, to a hurting world was transferred to us. Each of us can make a difference one person and one day at a time by seeing others through eyes of compassion, then inquiring of our own heart what can be done to reach out and give someone a hand or a break.
That is what Jesus would do and we can do no less.
Matthew 9:36 But when He [Jesus] saw the multitudes, He was moved with compassion for them, because they were weary and scattered, like sheep having no shepherd.
Not sure what to say, Diane, other than "WOW!!" You are able to pack so much insight into so few words — I am REALLY blown away. I thank you for giving the rest of us that do not have your particular cross (i.e. living with a special needs child) a very poignant and graphic picture of the daily struggles that are ever-present as you continue to provide the best care for Jon that you can. May we each be challenged to lend helping hands to those that so desperately need it — God bless you for all you do and all that you express so wonderfully in words!! Full-fledged BOOK ahead for you?? I'd buy it!!
This is insightful. I'm glad Jon has you for a mom. Keep up the good work, "your labor is not in vain." 🙂