Mildred was married to a wonderful man.  However, his philosophy was that she should answer to him at all times, in all things.  “My husband is like the dog that our family had when I was a child.  We also had a cat.  The dog wanted the cat with him at all times.  When he took a nap, he would pick up the cat by the neck and carry the cat to the spot that he would be sleeping.  Then he would put his arm over the cat so that the cat could not move.”  Mildred laughed, “It wasn’t that the dog loved the cat so much.  He was just afraid that the cat was going to go somewhere and have fun without him.”

I’ve found that a lot of relationships are like that.  Within the mentally challenged community, there are times that the child who is disable will adopt this dog mentality in regard to their parents.  It isn’t that the child loves the parent so much that she can’t be away from them.   They are merely afraid that the parents will have fun somewhere without them.  The parents have no wiggle room.

Parents, often, understand that this relationship has formed and recognize that it is unhealthy.  Yet, they feel stuck.  Moreover, they may not know what to do about it.  “Sam wants to be with me every minute.  I need a break.  I love him but 24/7 is too much,”  Marlene, Sam’s mom, confessed.  She had gone back to work to try to help Sam to adjust without her constant presence. But by the time she became employed again, Sam’s life was set in these unhealthy patterns.

This is the reason that Special Gathering is not a parent-oriented organization.  Of course, we want to have parent involvement but too often mom and dad need a break. Additionally, if our program is on Sunday mornings, parents can attend the worship services at their church.  Therefore, we don’t encourage parents to come if their need is for a time apart.  “Thank you, ” Marlene said, after pulling me aside the day after camp, “I cannot tell you how much I needed this wiggle room.”

Wiggle room is vital for everyone–especially parents of disabled children who have developed the doggie syndrome of “You Can’t Have Fun Without Me.”

As a program director for a ministry called Special Gathering, I find myself in the interesting place that I’ve seen the parents and caregivers of our members in for several decades.  I am now a full-time caregiver for a person with a disability.  Yes, my husband has had a disability all our married life.  However, his disability was never a handicap for him or our family.

My husband, Frank, worked hard at not letting the disability that he inherited from his mother limit him.  And by and large, it has not.  He was an Aerospace Technologist for NASA until he retired in 2002.  (They almost had to force him out the door.  He worked his maximum time.)  He rarely missed work.  He had many inventions and innovations within the space industry.  He was known as one of the world’s leading experts in the field of cryogenics. 

He never thought of his having any additional drawbacks.  He was contantly endeavoring to insure that he had as few physical obstacles as possible.  His off-the-charts IQ didn’t hurt him either. 

Because of a small inheritance, we have been able to continually upgrade our home to accommodate his growing physical needs.  Thereby we have been able to minimize his increased weakness and maximize his abilities.  However, his vascular dementia has added an increasing concern for both of us.  He has become increasingly dependant on my physical presence.

I still work full-time with The Special Gathering which is a ministry within the mentally challenged community.  Our sole mission is to evangelize and disciple people who are intellectually delayed.  However, in my position as area director, I have a flexible schedule that allows me to do much of my work in my home office.  Computers, Internet access and cell phones are amazing wonders that make any office job as mobile as you want it to be.  Yet, I find myself needing time away.

In February I’ll be going on a cruise with the Special Gathering program director.  She is taking three or four of her members on a Disney cruise.  They will be sailing from Cape Canaveral which is 20 miles from my office.  Recently, people have said, “Why are you doing that?  You need to really get away.  Not go with some of your members.  That isn’t a rest for you.”

Actually, it is.  I will be rooming with our SC program director.  She will be in charge of her members–not me.  I’ll be able to enjoy them, without having the responsibility of their care.  What could be better?

You see, of all the people I’ve ever met, I think I enjoy teenagers (especially junior highs) and mentally challenged people the best.  They are playful, unassuming, grateful and easy to please.  Of course, they are also people and they can be prima donas and bullies.  They can pitch fits and work the system.  But their lack of sophistication and child-like desire to please limits their ability to hold a grudge or pout for years and years. 

All in all, the mentally challenged population is a group of amiable and pleasant adults who like to have fun, shop and eat.  What better group could you vacation with?

Do you find your members to be fun or a burden?  What do you enjoy about your members?  What do you not enjoy about your members?