Thursday, April 24, 2008

Thinking Ahead...Way Ahead, I Hope

Warning: It's a rather dreary day outside and my back is aching, making me feel much older than my years, so the following diverges from my mostly cheery views of living in a family with a person with Special Needs.

I was reading a review of a book recommended by my good friends at Amazon, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Paperback) by Kathryn Lynard Soper, and one of the comments in that review by a sibling took my thoughts in a direction that I don't choose to explore very often.

What will happen to Walker once his dad and I are both gone? Oh, we've done all the planning necessary to assure to the best of our ability that he will be well cared for. (More on that another time.) He has two sisters who live in Memphis with their families, and one in California. They are all loving, responsible, successful adults, so he won't exactly be thrown out into the world alone. A couple of health scares last year necessitated a few discussions on this topic, but no one, especially Walker, wants to talk, or even think about the day when he won't be living here with his dad and me.

Walker has a deep understanding of the grieving that follows the loss of a loved one, and he knows it is difficult. He was only about twelve when the first of his friends died of lukemia. Before he was thirty, there had been three more. He has lost grandparents, but they lived out of town, so it didn't seem that unusual that he didn't see them often. He has a simple faith that he will be rejoined with all those who have gone before him when he gets to heaven, and he has never thought deeply about "sin", so he really doesn't have any idea that some people think that everyone doesn't go to heaven. His certainty of heaven is so concrete that he was positive that he saw my daddy peeking out at him from a cloud.

But Walker's loneliness will be difficult. Losing a parent is difficult, adjusting to a totally new life could be unbearable.

I wonder whether anyone will notice if he slips away and weeps. Will someone check to see if he is sleeping peacefully or gaining or losing weight? Who will check to see if his athlete's foot has returned or notice the slight symptoms that something else is wrong physically? Walker doesn't like to be bothered with going to the doctor or dentist, so someone is going to have to be aware of scheduling things and deciding whether an unscheduled appointment is needed. Who will decide when he needs new shoes or underwear?

All his sisters have assured me that they will certainly take care of him, but everyone is so busy with their own families that I hate to think of them having even more responsibilites.

I never, ever thought that Walker would all be living with us as an adult. I can remember stating with absolute certainty in the required group therapy sessions of Infant Stimulation Class that I fully expected Walker to live on his own or in an appropriate facility as an adult. In all my wisdom, I was certain that no household was big enough to house three adults. Well, circumstances change, things work out, and here we are all living together, happily for the most part.

Sometimes I wonder whether it would be better to get Walker settled into a nearby residential facility before it is suddenly necessary. There's a fabulous one, The Baddour Center in Senatobia, Mississippi. But then I think of how successful he is at his job, and how it seems a shame to confine him to a facility, no matter how idyllic, when he's happy and productive in the larger community. I've thought about a group home, but he craves his time alone, and I'm afraid that living with others would be extremely stressful. Then there's always the issue of physical or sexual abuse in those situations.

Walker really doesn't require a lot of caregiving. He fixes his own breakfast, buys his lunch at work, and our main contact with him is driving him to and from work and at dinner for a short time every night. He might watch a bit of a sit com or reality show with us, but enjoys most being in his room, free to sort his Polaroid pictures or watch one of his vast collection of movies or watch Hannah Montana. He comes down just before bedtime everynight to take the one medication he needs, an antihistamine. We're usually in bed by then. I gave up monitoring his bedtime soon after he started his job. As long as he is up and ready for work on time, he can stay up or go to bed as he prefers, just as most adults do. His work schedule, 11:00 am to 6:00 p.m., accomodates his night owl preferences.

Right now, the plan in place is for Walker to move into a smaller home of his own with trusted caregivers after we're gone. That could change at the discretion of his sisters, or based on his own preferences. Our experiences with the services offered by the state have varied widely, so the family will probably have to take an active part in monitoring his care.

I hope Walker will always have people in his life who love him and are aware of his emotional and physical needs. I trust that he will.

Please share your thoughts on all this complicated process by clicking "comments" below.

Blessings, Janie


Terri said...

Boy, this is something I think a lot about, too, especially since both my kids have special needs. I think my daughter will be able to live independently and have a family, but she doesn't have a lot of tolerance for her brother and I don't know that I could ever ask her to be in charge of him.

My fondest wish is that my son will meet a bossy woman who loves him and will provide him with an extremely structured life (there's one marriage in our extended family that's a good model for this). Short of that, I think my husband and I are just going to have to live forever. That's an option, right?

Leah said...

Oh man, these types of thought haunt me! My daughter's dad is totally incapable of dealing with any child once they develop their own opinions. We've been divorced for many years because of it. He rarely takes her now, and then it's only for appearances sake when he's with relatives. That said, my daughter has 4 big brothers. The oldest is now 22 and has 3 little kids of his own. He's also in a very depressed area of southern Illinois. Although he'd take great care of his sister, it would certainly be a hardship for him, and I'm not so sure that his wife would deal with the situation well. But they're young, and things can change. The next brother is turning 21. He's not been diagnosed, but based on family history I'm 90% sure he has paranoid schizophrenia. He has a girlfriend who I ADORE, and who is excellent with my daughter. But again, they're very young so it's hard to know what will happen next week, much less a few years down the road. The next brother is 19 and currently at home for a few months trying to get his feet back on the ground. Although, sometimes I forget he's here because he keeps to himself. He does have diagnosed paranoid schizophrenia. He used to be the brother who couldn't STAND to be around his sister, but now he's so close to her that watching them together makes my heart ache! (there is hope for your kids Terri! LOL) That said, he'll have all he can manage to care for himself. The last brother is also 19, and just joined the National Guard. When he's done growing up he'd take great care of his sister. My biggest prayers is that everyone has their lives figured out a bit before anything happens to me! By the way, about the book "Gifts", I'm one of the contributors!