Shaffer Family Expands!

There's exciting news in the Shaffer household. We are expecting a new family member...No, I am not "in the way of women." But this little girl will be moving into our home this weekend.

This is Riesa Kay Waggoner, born March 18. Riesa has been previously cared for by her mother, but needs a new home now. She was born with Down's Syndrome and probably some degree of autism as well.

The thing is...Riesa no longer looks like the photo above. She is my aunt and was born in 1958! At the present, she resembles the picture below much more than the one above.

I am blessed to have a husband and children who are happily sacrificing at least some degree of freedom and are actually looking forward to having her in our home. Though most of Riesa's personal care will fall to me, it will effect the whole family, and quite honestly, I don't know to what extent. There are many uncertainties surrounding this move.

Here are some FAQ's from friends and other family:

Does Riesa understand that she's coming to live with you permanently? I don't know...when I told her, she rubbed her hands together (her way of showing joy) and responded, "Oh, boy! I like that." But maybe she just thinks she's coming for a visit. I'm doing everything I can to make her room feel like "home"...utilizing her favorite colors, putting family pictures on the wall, tailoring it to her lifestyle, etc. Maybe I'll post pictures in a couple days.

How will she adjust to being away from her 85-year-old mother who has been her primary caretaker for 49 years now? I don't know...they are attached at the hip, but at times, Riesa seems to long for some independence. I'm more worried about my grandmother being lonely. She will be alone for the first time in her life, and she will have no one to take care of. Someday I'll post more about her and the way she has lived her life.

How much care does Riesa need? I think I know...she can complete most of her daily hygiene with minimal to moderate guidance. She needs help washing her hair and she needs reminders about most other self-care. She is mobile, although with age, she is becoming less so. She has fairly minor health issues: she is nearly blind - she sees the world through a rain-laden windshield - but she opts not to wear her glasses most of the time. Her hearing has faded somewhat, though some of us think she just hears "selectively" like the rest of us. Her main issue is pain in her feet, hips and back, which hinders her from moving freely or quickly.

Does Riesa work or attend any programs? Finally one I know...since "graduating" from high school at age 21, she has always been involved in some sort of workshop or day program. She is currently attending a program 3 days per week in Festus where she socializes and participates in community activities such as delivering "Meals on Wheels," visiting nursing homes and learning to function in public settings.

Fortunately, we have discovered a program right next door to the boys' school (.9 miles from our house!) which is incredibly similar to the one she's in now. It's small, they do similar activities, most of the "consumers" are older, they allow part-time, and it's pretty laid back.

How does she spend her time when she's not at the program? Riesa loves to watch game shows, especially The Price is Right, Jeopardy and Wheel of Fortune. She sets her life by her watch and the time of these programs! She also loves music and owns quite a collection of LP's which she listens to fairly often. Riesa owns a very old, but well-loved ATARI, and plays Pac-Man and some hunting game. So, she's a lot like a teenager...TV, Music and Video Games. Sigh. Oh, yeah...and she absolutely loves to write. She goes through tons of notebooks each year. She'll write the names of all the family members (which is no small feat in this family), their ages and birthdays; she'll write whatever words she sees on TV too. Her writing has become less legible as her eyesight has diminished, but she still does it endlessly.

Can Riesa be left alone? Yes, but only for an hour or two at a time. Though she poses no danger to herself - she wouldn't get out the knives or matches or leave the house - she also wouldn't know what to do in case of emergency. She knows HOW to dial 911, but probably can't discern WHEN to call.

Is Riesa able to communicate? Somewhat. She learned to do simple reading and writing, we taught her the sign language alphabet which she loves to use, and she can talk plenty...just not usually to real people in space and time. When you ask her how she is doing, she may say, "She's fine," referring to herself in the third person; she might look off to the side and talk under her breath to an invisible person, after which she may or may not directly answer your question. If she is in pain, she will pat or rub the involved area and say, "It's fine...it's not hurting," but will NEVER say, "My leg hurts." Then if you ask her if her leg hurts, she tries to be tough and says, "It's O-K...it's better." When asked to do something she either doesn't understand or doesn't want to do, Riesa will twist her foot and jamb her finger into her leg - a sort of minor "fit" - but can't tell you why she's upset.

Riesa has a good sense of humor and she loves to be silly...and boy can she be silly! She loves to laugh at others' silliness too. She loves hugs and kisses...IF she's in the mood. Sometimes touch that catches her off-guard is disconcerting, but she'll usually adjust.

So, this is where we are heading, by faith. Pray for all of us.

BTW, since I don't completely know in what ways my life will change, I don't know if I'll find time to blog or not, but if I have dry spells, don't give up on me!