30-Day Review: The meeting yesterday reviewing the first thirty days of adult independent living was a kind of love fest. The conference at Ability Beyond Disability had nine staff members, our daughter and myself. When I walked in at 12:30 our daughter was seated at the table nibbling on a bag of cheese crackers and drinking a Snapple lemonade. Next to her was the amazing residential staff person who has the tattoo of her amber eye on her foot. The twosome is awesome, totally bonded and utterly adorable. I was so excited to see our gal, it was a week ago when last we met, but she was not offering any hugs, which is not unusual. She doesn’t like a display of affection towards Mom though she may be quite pleased to see me. I am the demonstrative one in the family and tend to veer toward embarrassing our children too often so I let her be.
Pegasus Hurrah: Coincidentally on the way to the meeting I received a cell phone call from Pegasus, the equestrian program, saying our daughter has been invited by her summer instructor to join their Saturday morning group come this Fall. Wow! The instructor asked the Pegasus director to allow our daughter to participate in a peer appropriate group even though it meant adding an additional rider to her class. When I entered the conference room at ABD I had the pleasure of delivering this wonderful news to our daughter who had stolen yet another heart.
Braving The Spaying: The staff presented their summaries of our daughter’s activities of the last month, goals and areas that needed focus and strengthening. Our daughter was invited to describe her feelings about her apartment-mate, staff and programming and responded with her classic honesty and humor. She hates getting up in the morning, loves her apartment-mate and staff, needs help with portion control, does not like vacuuming and was treated rudely by a new member of the DSO (Day Services Options.) She also filled out an ABD questionnaire prior to the meeting which reflected these views. Staff told some pretty hilarious stories including an anecdote by the vocational director who, while substituting for the absent individualized day staff, took our daughter to her Complete Cat Clinic job. They were invited in to the operating room at the Clinic where they witnessed the spaying of a four-month old kitty whose male sex organs were displayed on the operating table. The ABD staff person was horrified and had to turn away, whereas our daughter moved right in and watched the whole procedure, including the sewing up of the kitty’s “behind”. Familiar with our daughter’s tolerance for explicit surgical imagery, (years ago, while working in our kitchen I had the privilege of watching a bloody eye surgery televised on one of those medical shows with our daughter, who refused to change the channel, despite the fact that her mom was about to swoon over preparations for the evening’s meal) I not only could envision the scene but gloried in our daughter’s lifelong interest in all things living, no matter the condition.
Safety and Money: The usual concerns were highlighted in the meeting including street safety, money and budget management issues, and housekeeping responsibilities. The iTouch apps program was being explored to provide more resources for travel and emergencies. Our DDS case manager had a series of questions for our daughter and sign-offs required from both she and her guardian (mom). Once again I had to affirm that our daughter had no burial plan in her name nor other funds.
Weight Stuff, Ugh: The staff, having spent a month in her company, displayed a real grasp of and appreciation for our daughter’s strengths and talents as well as areas of weakness and vulnerability. The love fest aspect of the meeting was conveyed by warm descriptions of her sociability and enthusiasm in all her activities. My one remaining concern is related to weight control. Her snack at the meeting was made up of carbs and sweetened liquid. Last night when she called, she mentioned going to Starbucks following the meeting where she downed a hot chocolate. Though her physician’s goal is that she lose ten pounds, which I reminded the team at the meeting, no one seems to be able to deny her the means to gain weight. Her cognitive disability does not connect the dots that link all these food items with unhealthy eating. An occasional treat is great but I get the feeling that the occasions are at least once daily or more. Ugh, I hate this weight stuff. Who doesn’t?
No Hugs? When we said goodbye at the end of the meeting, I didn’t get a hug. But several hours later I did get the call requesting we shop for some winter boots this weekend. Uggs are the preference. Hey, I can take it. We have so much fun shopping together. You can’t have it all. What resounded most clearly in that conference room yesterday afternoon was the unanimous pleasure all receive from spending time with our gal and I am super grateful that this gal belongs to our family, most of all.
©Jill Edelman, M.S.W., L.C.S.W. 2011