Constantly Tweeking the Program

V has been in self-directed adult services for 4 years now, and each year has been different from the previous year.
 Most recently, I decided to discontinue participation for her in Fitness for Health sessions. V went there once or twice a week for two years, but never seemed to buy into it. There were times that she gave a good 45-50 minutes of hard work and seemed to enjoy the activities and other days that she refused to even get out of the car when she arrived at the facility. Most often, we could get her to go inside, and she would participat for 10-20 minutes and then head for the door and want to leave. We had a variety of trainers with different approaches. The first was quite authoritative and had a lot of conflict with our support staff about who was in charge of V. Other trainers were more easy going and gave more choice and flexibility to V, welcoming the support of her staff. Our behavior analyst went out to the facility to observe and make recommendations on several occasions. We used a portable DVD player as reinforcement for a while and then eliminated it when it caused more trouble than it was worth. Stickers were offered as rewards for completed activities, but became too much of a focus. Breaks were given to rest in between activities. The Dynavox speech output device was used to model how to appropriately ask for a break or snack, to choose which activities to do, and to request to leave. Nothing really turned things around. It was a 30 minute drive each way and the cost has risen to $110 per hour, from $100.00 per hour. Parking at the facility was difficult in our large Suburban. The garage was hard to maneuver in, and resulted in damage to a mirror on our vehicle, and the outside parking was very limited and tight. When Natalie, our most recent trainer, resigned, V was assigned a different trainer who could not meet with her every week at her designated day and time because of an assignment to work with a school group on alternate weeks. Since V has different staff on each weekday, having to change the day of the week for her Fitness for Health appointment from week to week would have made consistency difficult. I asked for a different trainer who could meet every week on the same day and time, but more than a week went by without any response to the request. I decided it was time to let go of Fitness for Health and move on. We had recently hired an excellent occupational therapist who was getting an hour of happy cooperation from V every week, from her very first visit, and continues to do so. She works on all the same goals as Fitness for Health and more and comes to our home every week at the same time so there is no commute or transition from the car to a facility. For the summer, I will increase her sessions to twice a week, in place of the Fitness for Health session. If she were available, I would have her come twice a week all year, but she can't fit that into her schedule, as she works at an elementary school during the school year, and a clinic as well. I still think Fitness for Health is a great program with wonderful staff, equipment and facilities, and I appreciate the commitment they made to V even when it was difficult. Ultimately, I felt that continuing to push V to participate in something she was so resistant to was not in the spirit of self-direction of services, especially when there are other ways to meet her needs that don't stress her. The benefit vs cost was not working anymore.

Our Special Educator wasn't clicking quite as well with V as the speech therapist or the occupational therapist. I tried an observation of the Speech Therapist and by the Speech Therapist to get some ideas going, but V seemed to become frustrated and agitated with that individual, although he was highly qualified. Was inconsistency due to frequent absences a reason or was it just not a great personality match? I tried to stay out of the room so as not to be a distraction and to get some feedback from the support staff about what they thought was causing V to get upset. Their conclusion was that she responded better when a variety of materials were prepared and brought by the O.T. and S.T, so that if she were uninterested in one activity, they had something else ready to offer. The educator was bringing a much more limited number of activities, and so was unable to offer alternatives to V if she rejected one. The other observation staff made was that V needs physical space when she becomes tense, and the educator was not giving her enough space at those times. After 7 months I decided that it was time for a change. We have a new educator now, and we will see if that works better for V. I have shared the observations of what works best with the new educator, and experienced staff are supporting her as well. She doesn't get the same enthusiastic response yet, as the S.T. and the O.T., but it may come with time.

In the past, we had adapted aquatics. V used to love the pool and water of all kinds, but then seemed to become reluctant to get in the pool. We had a lot of trouble finding an instructor, then had a great one for 6 months, but then lost her due to an increase in her hours at her other job. After that, I had no success finding another instructor and finally just took adapted aquatics out of V's plan of care and budget.

Community outings used to include shopping for produce at Whole Foods with a picture symbol list of items to find and buy. That worked well for while, until V discovered the frozen food section and kept wanting to buy 2 or 3 frozen pies instead of shopping for fresh produce. She hasn't been to Whole Foods for a while. I will probably send her to Lewis Orchard over the next couple of months, as their selection tends to be much more limited to items that I would want her to identify and buy.

The option to move funds from one part of the budget to another through a budget modification or plan modification, has allowed me to change the program as needed to meet V's needs and preferences. The ability to hire and fire staff and vendors has allowed me to find better matches to V's personality and interests over time, to include more things in her routine that work well and eliminate those things that don't. I expect that her program and activities will not look the same this time next year as they do today. That is probably a good thing and what is so great about an individualized program. It is constantly evolving to meet the needs of the person. 

Patience

Last week we had a home visit from Natalie, Val's trainer at Fitness for Health. With Val's Suburban in the shop for repairs, I was nervous to take her 30 minutes each way in my little car in case she became agitated during the trip. Although we had to pay for the travel time for Natalie, it was an opportunity to work on Valerie's tricycle riding skills. It was a beautiful day for November and perfect for doing an outdoor activity. We got the trike out of the garage and took it across the street to a protected side road that gets very little traffic. Val walked out of the house nicely and willingly got on the trike. She steered as we pushed, and all went well until we came to the part of the road where a noisy truck was parked. Something about that truck and the sound it made, upset Valerie and she got off the trike and began to have a tantrum in the street. I went back to our house to get my car and drove it to where Valerie was sitting in the street, which motivated her to get up and climb inside my car. I drove back into my garage, closed the garage door and smoothly transitioned Valerie back to her room for indoor recreational activities. Afterward, Natalie and I chatted about how things had gone with our first attempt at tricycle riding. She was happy that Valerie got on the bike and had stayed on it for several minutes until the distraction of the truck. Valerie loves working with Natalie because Natalie is happy for whatever Valerie is willing to give to an activity. Natalie respects Valerie's feelings, interests and limitations on any given day. Some people respond to being pushed, but Valerie pushes back. Everything is on her terms, at her pace, and nothing can be forced without negative consequences to all concerned. I agreed with Natalie, that it was a positive start, and keeping Valerie's experience with Natalie a positive one is critical to her continued willing cooperation during future sessions. I have learned to expect progress in any area of Valerie's learning to take several months, if not years, of work on a weekly basis. Those people who have been successful in their work with Valerie have had to have faith in Valerie and themselves. Those who are in a hurry to get results and who want to be in charge become discouraged before they see what she is capable of. It took over a year to get Valerie to stay on a horse for more than a few minutes during therapeutic riding sessions. It took about 5 months for our speech therapist to get Valerie to want to work with her for a full hour most sessions, and it took about the same length of time for the tutor to get her engaged in work for most of an hour long session with hardly any behavior outbursts. Valerie is kind of contrary, like her mom. When she understands that no one is going to force her to do more than she wants to do, then she becomes more willing to participate for longer periods of time. She becomes happy to see a therapist who respects her wishes, lets her take a break or move on to another activity if she wants to stop. Then the the therapist, staff and I begin to see what she can really do, and we see skills grow. Building rapport and trust first is critical to making progress with Valerie. Keeping things low-pressure and relaxed is important to making progress with her. If Valerie is using all her energy to fight for control, she isn't learning anything. Natalie said, "I wish you could talk to some of our parents at Fitness for Health. Some ask me what progress was made after one session. I was just happy that the child was focused during that session." She and I understand that progress takes time and patience when working with a person who has special needs. She is a perfect trainer for Valerie because she appreciates what Valerie gives to each session, and if that is only 30 minutes of work without any inappropriate behaviors, even though the session is for one hour, so be it. Valerie leaves happily, and is that much more willing to come back again the next week and work for 40 minutes because it was fun last time. I would say to parents who expect quick results, that it will not happen on your time schedule but it will happen if you are patient, accepting, and respectful of your child. A therapist can give your child what they need to move forward if you take away the pressure for measurable results in a specific period of time. Take the pressure off of your child and the therapist and let it take as long as it takes. I came close to giving up Val's sessions at Fitness for Health before Natalie became her trainer. Valerie was spending most of her sessions there fighting with other trainers and her support staff to leave the place almost as soon as she arrived. It had become a negative experience for her and at times she wouldn't even leave the car to go inside when staff arrived with her. Then there was fire in the building where the sessions took place. The sessions were cancelled for about 7 weeks as a result of repairs. When she returned, it was after a home visit by a new trainer, and the facility had moved upstairs and had a different layout. We had some tantrums during the first couple of sessions with Natalie, one really rough one, but things improved really quickly and our last session at the facility was 50 minutes of participation with no behavior problems at all. We started slowly, with only once session a week, but now things are going so well that I am ready to increase her schedule back to two sessions a week, which she had before the fire. I am thankful to the therapists and trainers who have worked with Valerie when they did not see progress, but believed that Valerie had it in her and believed in their own ability to find a way to bring out her potential. They didn't give up or become discouraged and it paid off for them and for her.

Fitness for Health: 2nd Visit

Just because Nyle (V's O.T.) and I were impressed by the facility and founder of Fitness for Health, didn't mean that V would feel the same. The only way to decide if the center would be a good fit for V was to take her there to work on the equipment with the FFH trainer that would be working with her as a client. Today we did that. I was hoping that Nyle could join us, but her schedule didn't allow her to be present again, but since we had left her evaluation with Marc when we went for the first visit together, they were prepared.
The timing of the visit was not ideal because they had several other children there who were very active, loud, and dealing with emotions... all issues that could have caused behavioral issues with V. She handled the sensory load pretty well. First, she saw a bag that someone had left on the trampoline, grabbed it and looked inside and found food. Uh Oh. Food obsession triggered. It was tricky getting it away and out of site, and required that one of her own snacks be retrieved from the car and brought in for her. Time was lost to snacking. Now they know not to have food laying around when she comes again. We went first to the the larger of the two rooms that use a black light and floor lights to make equipment glow in the dark. V surprised us all by kicking around the glowing soccer ball. I didn't know she could or would kick a ball, so that was good to see. The balloon caused a little sensory overload and V needed to sit down and collect herself before continuing. Then we went into the main room with the rock wall and 30 foot long trampoline. She walked with me over several long, 10 inch thick floor mats that made for a nice, unsteady surface. Good. Walking on unstable surfaces is one of her OT tasks to work on her balance. She walked on the trampoline. Good again. We tried out the equipment that required her to tap on various lights to put them out and involved bending, stretching across, and stretching up, along with visual and auditory tracking. At first we motivated her to tap the lights with stickers, but soon she became so engaged with the activity and the verbal praise that everyone was giving her, that she forgot about the stickers and only cared about finding and tapping the lights. For a first visit, she engaged quickly in each activity presented and experienced fun and success. She was in no hurry when it was time to go, and turned back around to the tire swing and crawled into it, hanging on it, smiling happily.
My decision was made. I can see that she can make progress on her goals at this place, where the staff are patient, skilled and understanding, the activities are motivating and fun. The staff agreed that she could benefit from the activities that they have to offer. Now I have to write it into the plan of care and budget for the new fiscal year, and justify it well with the O.T. evaluation and goals. I am crossing my fingers that it will be approved.