WHERE HAVE ALL THE YEARS GONE?

An article on Jeff Saunders by Donna Campbell Chapin, Jeff’s mother. Donna lives in Florida and Jeff lives on a residential farm in Kentucky. They have been with the SWF since 1993.

The last time I wrote about my son, it was 1995 and Jeff was 18.  We had survived the initial shock of being diagnosed with Sturge-Weber Syndrome, the frightening years of not knowing what was next, strokes at 3 months and 10 months, daily seizures, laser treatments, medication changes, corpus callosum surgery (Split-brain is a lay term to describe the result when the corpus callosum connecting the two hemispheres of the brain is severed to some degree),  VNS, AED, IEP, puberty and where we stood and what kind of a life Jeff was facing for years going forward.  The “cute” stage was over.

With a teen, approaching adulthood, I had to ask myself what future did Jeff have ahead of him, and how was I, as a single parent, going to provide that life for him, both while I was alive, and, parents’ biggest worry, when I was no longer here.  

“I am the only one who can take care of my son, he must always stay with me”.  How many of us say that over and over?  I have always believed in inclusion in the early years, but by the time Jeff was going into the 6th grade class room, it was time to open my eyes and know I now had to protect Jeff and realized it was not in his best interests to be in the “normal” population.  After all, Jeff was small in stature, did not read or write, knew nothing about money, and needed assistance coming out of the boys’ room.  Oh, I almost forgot, his PWB.  He would have been eaten alive in middle school.

Jeff needed a world where he fit in.  He needed others around him with disabilities, he needed to be able to help friends with tasks they had trouble with and he could do, such as shaving, needing a guide to walk to class, or comforting a friend having a seizure. Jeff has a wonderful memory and he is very careful and conscious about his own safety. He needs to use his independent skills whenever possible to feel good about himself.

I was very fortunate to find a perfect placement for Jeff, where he is happy, among friends, challenged every day; where his world includes, for all ages, social interactions, such as dances and parties, travel, school plays, prom and homecoming events, special athletics, classroom for continuing education, and even elections for student government in November.  He is in a “self-care” program at school and is responsible for his own room, and daily hygiene, going to class and going to his volunteer job 3 afternoons a week at the Animal Shelter in town.  And his great accomplishment:  the last 22 years he has flown home many times a year on his own, with a change of planes (of course thank you cell phones).  

So, people say, how does this all work?  How can a special world, and one that can continue long after parents are gone, and siblings do not want, or cannot take on the responsibility of, let’s face it, a big job, work?  It takes a village.  It takes a lot of work, research and setting up finances.  And, I want to share that with you.  There are many pieces of the “support” pie.   Not all families have all parts, but maybe you have enough to pool together.  

It’s never too early to start thinking about finances.  Meet with Social Security and find out when and for what benefits your child will be eligible for, including Medicaid and Medicare.  At age 18, become the Legal Guardian, keep things simple, don’t put any money in your child’s name.  Do not let relatives give him or her money.  Check with your local school board and see what alternative schooling (private) they would recommend, and possibly pay for.  Talk with a special education councilor.  Meet with relatives, an investment advisor, and insurance advisor for the latest advice on life insurance, SSI benefits, annuities, and the new “ABLE” accounts.

Two years ago he underwent a left functional hemispherectomy.  He has been seizure free since the surgery.  He has no use of his right hand and weakness to his right leg.  He wears a Bioness device for his drop foot.  He has discontinued two of his AEDs, and has had his VNS removed.  He wears glasses pretty much all the time and does have only partial peripheral vision in the right eye.  He lives in a community of 350 very wonderful “students” ranging from 15 to 90 years old on a beautiful Kentucky horse farm which traces its history back 125 years. 

Jeff lives independently (with house parent supervision and full medical team 24/7).  He has all his doctors at the University.  He loves to travel on school trips, and to fly home to Florida to visit “Mom”, if I make certain it does not conflict with a school activity, or work!  

He has had multiple (many) gum surgeries while on Dilantin.  Once weaned, he had one more clean-up surgery.  The gums never again grew down over his teeth.  Then came Orthodontics (just about the time my father retired as an Orthodontist!).  Once his braces came off, we had no further issues.  However, since Jeff lives at school, he sees the hygienist once a month for cleaning and watching for any problems.  He also uses an electric tooth brush and a water pic daily.  Jeff may forget to shave, but he takes very good care of his teeth.  

I have battled cancer for many years and I have been so afraid for Jeff’s quality of life when I am gone.  But I have done all I can possibly do to prepare for that eventual outcome.  Jeff now receives SS, Medicare with help, he benefits from an annuity set up by family, life insurance, and I can fund the balance.  It is doable.

If you were to ask Jeff if there were anything he would like to change in his life, he would say he would like to have a driver’s license so he could drive his mother around doing her errands.