This is the first week of year 2 under the self-directed program called "New Directions Waiver" for V and our family. It's a good time to take a look at where we are and what we have accomplished. It's a good time to look at what we still need to do and what our goals for the next year should be.
We were fortunate to be fully staffed for personal support staff from the beginning of ND. We were lucky to have a special educator to continue with us from school into the adult program.
What I needed to find, as a support broker was a speech therapist. One of the bigger goals I had for V was to reduce her frustration by increasing her ability to express herself. We now have a great Speech Therapist coming once a week for an hour and I see it making a difference. V is using a Tech/Speak device in a purposeful way to ask for things she wants to do. In some cases we have switched from generic symbols to digital photographs in our picture symbols in hopes that V will understand them better. Currently we are using a mix of both.
I also needed to find an Occupational Therapist. Impaired motor skills continue to limit V's ability to perform basic skills and she deserves the support of someone who can help her continue to improve her function and independence. I had an evaluation a few months ago for an OT, but it didn't work out to even get started. This week there is an eval scheduled with another OT and I am hopeful that this one will agree to work with V. The obstacle has been the desire to have services provided in the natural environment instead of in an office. Doing this will eliminate the need for V to transfer skills from an office to her everyday life. Now that Special Olympics cycling is beginning, I can really use the help of an OT to assist me in how to teach the pedaling, steering and braking skills V needs to acquire. Progress in performing tasks has been lacking this first year because of a lack of an OT to help us.
About half way through the year, I found someone to do adapted aquatics instruction who was wonderful, but now has been promoted at her full time job and is trying to help us find a replacement. In the meantime, we are without an instructor once again. I saw V working on floating, kicking, blowing bubbles in the water and learning to use the slide at the pool. She also helped V to learn to use the stationary bike when she wasn't in the mood for the pool.
We have made great progress in therapeutic horseback riding in this first year. We went from minimal participation on V's part to riding a full 30 minutes and asking for more each time. We learned that it was important to make the caregivers a part of the lesson so that she felt safe enough to remain on the horse.
V has learned to enjoy her community on a daily basis this year. She can use the library to choose videotapes or look at magazines, and seems to choose this outing each Monday morning, creating her own routine.
She can enjoy the experience of eating in a restaurant and has increased her ability to sit and wait for her food. We are using photos to give her greater choice about where to go and what to order.
She transitions much better than she did a year ago. For many years she would not leave the house without me, but now she happily gets in the car and goes with her caregivers. She can go to 2 or 3 locations each day, in and out of the car and the transition between the car and these locations is usually uneventful. She does occasionally change her mind and decide not to leave the car, but that is okay. The agenda is usually hers.
Her physical health has improved from opportunities to walk each day. Her stamina and endurance has increased dramatically from all the walking she does, at parks, at zoos, at malls, and everywhere she goes.
Support staff have learned how to better support Valerie on her computer and with communication devices.
I have figured out what to include in the budget after this first year of expenses to look at. It helps to know what has been successful and what has not been successful after a year of experience.
So, now, at the start of our second year, I am still busy with my management of this program. I have been on the phone, scheduling interviews for new staff to replace one that is moving away and scheduling the evaluation by the prospective OT. When the new staff are hired I will need to train them and supervise closely while they get the hang of things. I am scheduling the dental cleaning for this month at the hospital and the prerequisite doctor appointment in advance to clear her for anesthesia. I am still filling out time sheets and mileage reimbursement forms every two weeks, and vendor reimbursement forms for all the people who support V and her staff. I still email and call to coordinate schedules for all these services. But I see how well and how happy my daughter is and every minute of effort is worth it.
I am still a fan of New Directions at the end of our first year. I am still learning how to do things more efficiently so that it takes less time for me. I would say that this has been the happiest year of V's life and I expect that it will only get better for her.
