Transitions for Taylor

Today, I met with several service coordinators from the local school district to discuss Taylor’s cerebral palsy and her anticipated therapy needs as we begin to plan for her school-age years.

I had been anticipating this meeting for quite some time now. As I met with the school district personnel and service coordinators, I spent a good deal of time talking with them about Taylor’s disability, her medical history, her progress in managing/overcoming her disability, her challenges/struggles, and ultimately our goals for her in the future. The service coordinators and school staff, in turn, spent a good deal of time observing Taylor. They observed her gross motor skills (walking, jumping, climbing), her fine motor skills (holding crayons, coloring, manipulating small toys/objects), her language/communication, her self-help skills (eating, dressing, toileting, etc).

Taylor was noted to have...

- Age-appropriate fine motor skills. YAY!!!!
- Age-appropriate self-help skills. YAY!!!!
- Age-appropriate langugage/communication skills. YAY!!!!
- Age-appropriate social/recreational/play skills. YAY!!!!
- Delays in her gross motor skills, as we expected, due to the type of cerebral palsy she has.

After an extensive evaluation, the therapists determined that Taylor would not be eligible for ongoing services. Yep, not eligible.

Now, keep in mind, to this point, Taylor has been receiving ongoing weekly therapy sessions (physical therapy, aquatic therapy, occupational therapy, therapeutic horseback riding) for the past 18 months. To be told today, that Taylor will not receive ANY of these services once she begins school was very disappointing!

Now, on the face of it, you might be thinking to yourselves, “oh, well that must be a good sign…Taylor must be doing well enough that she doesn’t need the continued, intensive schedule of physical therapy, occupational therapy, etc.” That is not the case. The fact of the matter is that Taylor is doing as well as she is BECAUSE SHE HAS BEEN RECEIVING AND PARTICIPATING IN ALL THESE SERVICES FOR SO MANY MONTHS.

When I pressed the school district further, much to my dismay, they would not budge. I learned that the school district’s team of physical therapists and service coordinators are currently very understaffed, are currently only working part-time due to state budget constraints, have to serve 1/3 of the entire county in which we live, and as a result have a significant waitlist for pediatric services. At best, the school district informed me that they would only monitor Taylor’s progress by merely checking back in with Taylor for observation either one time every six months or one time every twelve months to simply update her charts and school records.

As Taylor’s mom, this is simply unacceptable. I am not about to truncate my child’s progress or hinder her abilities to improve and continue to overcome her disability because the school district is unable to provide continued treatment and therapy services for her. So, now I will continue to advocate to our insurance company for all the services that Taylor has been receiving and in my estimation needs to continue to receive. Thank God my husband and I have a good PPO insurance plan!!!! Between the various therapy services that average $150.00 per hour/5 times a week (that's $3,000 per month of therapy services), the purchases of her little braces to the tune of $1,500.00 each/purchased 2 times a year, our insurance company must really love us. Yeah, right! If the insurance company doesn't continue to provide for all these services, perhaps I will have to go back to work in order to help pay for these services...whatever it takes...whatever I've got to do....Taylor is not going to be short-changed with getting whatever she needs. As a parent, I must consider the rest of her life, the quality of her life. God has entrusted Taylor to Mike and me and charged us with the awesome responsibility of helping her to become all that she can be. We know that she can ultimately overcome her mild disability but not without continued hard work and dedication from both Taylor and a committment from her mom and dad to make it happen.

So, tomorrow I will begin the discussions with our insurance company to make sure that they will continue to provide these much-needed services for Taylor. I just pray that the insurance company will continue providing these services to Taylor. Over the past 18 months, she has made such incredible progress and I really believe that with continued intensive weekly therapy services during the next couple of years Taylor will achieve her maximum potential, complete motor independence and overcome her disability.

Today's Swimming Therapy

Taylor has only been doing the aquatic therapy program for a few weeks now, but already I am noticing some big improvements in her overall walking and motor planning, not only during the swim sessions but following the swim sessions on dry land too.

This type of therapy is proving to be a great addition to her overall therapy regimen! She’s still getting all of the physiological, motor skills exercise and stretching routines that are achieved in her in-clinic physical therapy sessions each week, but the water therapy is definitely one of Taylor’s favorites because she doesn’t realize that she’s “working” and just thinks she’s playing in the pool. Once thought of as a ‘faddish cure’, water therapy, when combined with Taylor’s other physical therapy programs, seems to be netting significant benefits to Taylor.

Taylor is now showing improved coordination when walking independently and also when entering and exiting the pool. She is also improving her overall trunk/abdominal strength from all the exercises she’s doing while sitting on the kickboard in the water. Additionally, the swim therapist has been working with Taylor on improving her stair-climbing skills. This is a task that still presents quite a few challenges for Taylor on dry land. In the water, however, because of her weightlessness within the water and the warm water to keep her leg muscles relaxed, Taylor is now starting to walk up and down the stairs pretty efficiently in the pool. Today, she walked up 3 steps and only required minimal assistance from the therapist and walked down the same 3 steps with moderate assistance from the therapist. The challenge that Taylor is still encountering when walking down the steps is that she is not quite coordinating her weight-shift from one leg to the next. The therapist tells me that in time this will be achieved but it's one of the harder skills to acquire. In the meantime, the therapist is going to continue focusing on Taylor’s downward stair-climbing skills. The therapist has also recommended that we modify our house’s stair-rail system to a kid-friendly handrail which will make the stairs safer for Taylor when she's practicing walking up and down and to help facilitate correct form and movement patterns even further. Below is a picture of this kid-friendly stair-rail.

During today’s swim therapy, Taylor joined in a game with a few other tykes receiving therapy as well. She had a great time playing ball with them!