Public Transportation
For some people using the New Directions Waiver, the most economical transportation option is Metro Access and DDA will allow waiver funds to be applied to this cost. It operates like a taxi service with handicap accessible vans. For V, having to wait when she is ready to leave a community destination could put her support staff in a difficult position. When V is ready to go, she is ready to go and will begin walking if no vehicle is available. Physical restraint tends to escalate any agitation on her part, and there is just no reasoning with her if she is determined to do something. A private vehicle that is ready to go when she is, for V, is the best and safest option for her, for the staff and for the public.
We have taken a successful subway train ride and will probably try that again at some point, but there is no subway stop near our home.
Safety in the Home
Adaptations have been made to our home that have created a safe place for V to relax and play. Around the age of 15, V escalated her physical expressions of frustration to a level that caused me such worry for her personal safety that I considered placement at a residential school for her. Glass topped coffee tables and dining room tables were intentionally tipped over by V and the large chest of drawers in her bedroom were pulled over, with nightstands being rolled end over end across the room. A medication change to Topamax gave nearly miraculous relief from this behavior for a couple of months and I began to address the furniture issue by bolting the chest of drawers to the wall so that she could not pull it over onto herself. One of the scarier things that she wanted to do was to shake the t.v. and pull it toward herself when she became emotional about a movie that was on. Close supervision anytime the t.v. was turned on became very important for her physical safety. She began to pull the drawers out of the entertainment center and throw them or pull them out just enough to climb up on them, like stairs, risking a dangerous tip over of the entire unit.
Eventually, I found a small local custom furniture design center, Sarkissian Interiors in Gaithersburg, MD. Mr. Sarkissian and I sat down and I described to him a custom wall unit with 3 parts. The first part needed to house a T.V., VCR and related entertainment equipment, with the T.V. protected by a heavy duty plexiglass door, that could be pounded on and not break. The storage space needed to be lockable with keys, but no handles to pull on or step on, and the entire unit needed to be strong enough to handle kicking without damage. The second unit needed the same locking plexiglass door to house a computer monitor and a locking drawer for the keyboard and mouse. It needed a roll out bench seat below the computer desk, so that it could not be thrown or tipped over, and that could be pushed under the desk and locked in place so that it could not be climbed on. Finally, the third part of the system was a simple work desk with the same locking roll out bench seat. Mr. Sarkissian took it step further, and made the seat cushions out of a removable vinyl pad that could be wiped off or removed for cleaning, and that attached to the bench with velcro. This custom entertainment system works beautifully and addresses all of our safety concerns. Mr. Sarkissian has the plans for our system and could reproduce any or all of the 3 components for anyone who wanted one. Mr. Sarkissian had designed the furnishings for the pychiatric ward of Georgetown Hospital, and so I had confidence that he could help me with my project, and he did. The one part of the system that we don't use very much is the work desk. V prefers to work on a large folding table that we bring into her room for the purpose of her artwork. Because the workdesk has closed in sides, it is hard for a caregiver to sit next to V and help her with anything that she is doing. If I were to make a design change to the desk, it would be to open up the sides of the desk.
As for other features of the playroom that we built for V, the only light fixture is on the ceiling, out of reach. The closets and bathroom doors can be locked with keys, so that no destruction can occur if she needs to be left alone for a few minutes to calm herself. Walls are covered with construction paper artwork that V has created and if she pulls it down when she is upset, it can be thrown away and replaced with new artwork that she creates. The floor is washable tile, easily cleaned if glue or tempera paint spills, and Ikea couch cushion covers are all removable and washable. This is V's space, though she likes to join me in the evening on our family room couch for snuggle time before bed. Having a safe space for V allows our family to coexist with less stress for everyone. I realize that not everyone can go to the lengths that we have, but for us, this works.
