Ups & Downs

Some of my friends have recently pointed out to me that I’ve been a little MIA lately. And, it’s true. If I owe you an email, a phone call back, or a thank you note, well, I am really, really sorry. We’ve had so much going on the past couple of weeks and I’ve been quite busy with daily life with the twins. I will get back to you…and you, and you, and you, and you. Eventually.

This week sure has been a week of ups and downs. First, good news at our neurology appointment for Taylor. Backtrack to the details on that appointment in this post here: http://ashley-twinsanity.blogspot.com/2008/10/taylors-neurology-appointment-update.html

That was on Monday, an up day.

Then came Wednesday, a down day.

Wednesday began with an appointment to our physical therapy clinic for Taylor where I had a chance to sit down one-on-one with Taylor’s physical therapist. I talked with the therapist about the recent meeting that I had with the school district and their dismissal of Taylor as “no longer eligible for physical therapy services” once she starts school because in their words: “Taylor’s doing great, looks like she’s doing so well.”

The physical therapist was livid; just as I have continued to be ever since my meeting with the school district last week. How is it that the physical therapist, Taylor’s neurologist and pediatrician as well as my husband and I all agree that Taylor is doing as great as she is ONLY BECAUSE she has been in a very rigorous physical therapy program for the past couple of years and that it is no coincidence that Taylor is doing as well as she is simply because she’s adapted or overcome all aspects of her disability on her own. That is just not the case.

The physical therapist put it in very plain words for me: “If Taylor doesn’t continue to receive the levels of physical therapy that she has been receiving in the coming years and if the school district does not make these resources accessible to Taylor in her early school years, she will most certainly regress, her leg muscles will stiffen, her range of motion will become limited....” Her therapist even said, “We could lose so much of the ground and progress we’ve made with Taylor that she could wind up in a wheelchair.” (GASP)

These words and references to a wheelchair by Taylor’s physical therapist, whose judgment and experience I wholly trust on such issues as child development, physical therapy for special needs children, etc., resulted in my having a little meltdown. I have remained a little discombobulated, a little freaked out and a little panicked…I have also felt sorry for Taylor, sorry for myself, and wondered why us, why so much to deal with (because there’s much more than just Taylor’s physical progress at stake, more that I just won’t go into right now, but more, more, more, much more).

Then came Thursday and I woke up feeling like, it’s going to be okay. We’ll get through this. Taylor will continue to be fine and continue to make progress in overcoming her disability. We’ll just continue to take things one step at a time, one day at a time. I took Taylor to her warm water therapy class today at Easter Seals where at the end of the session, I was informed that her swim services would likely come to a halt in December when Taylor turns 3.

I suppose that the school district has already begun making their rounds to Taylor’s service providers and Easter Seals too must have received the memo from the school district saying how “great Taylor is doing.” Arrrrgh.

According to Easter Seals, “there are children who may benefit more from our services than Taylor in the coming months.” And, then once again, I heard “Taylor’s doing great, she’s really doing well.” Okay, that confirmed it – they did get the school district memo!

I hesitated for a moment, then protested. I said in my kindest, sweetest voice, “I agree, she’s really doing well and I’m so happy to see that she’s making such good progress; however, I am very concerned that interrupting or discontinuing these types of services for Taylor too soon will have negative consequences and will halt Taylor’s progress significantly. We're going to need to revisit this issue.” Blah, blah, blah.

I then shared with Easter Seals what Taylor’s lead physical therapist shared with me….that without continued physical therapy services for Taylor during her early school years she will likely regress and may even be facing time in a wheelchair. The Easter Seals therapist understood my concerns and more importantly she heard me and said she would speak to her supervisors about what they might be able to offer to Taylor after she turns 3…so, now we wait and see. I am hopeful that Easter Seals won’t discharge Taylor from the program because they think she’s doing “so great”. Let’s really translate “so great” and just what that means….I believe it actually means that they think Taylor is doing “good enough.” Well, “good enough” is not “good enough” for my child! In fact, the "good enough" expression doesn't really exist in my vocabulary at all.

So, I am pressing on and continuing to fight the good fight for our little Taylor. I know that God only gives us that which we can bear. Somedays, particularly this week, I have found myself saying, “God, you have really overestimated what I can bear…” In the end though, I know that God will open the right doors and I am just praying and trusting that He will continue to help Taylor and make her much-needed physical therapy services accessible to her in the months and years to come. Of course, I'll be doing my part and fighting the school district and whatever other bureaucracies, including our insurance company, may rise up to impede upon Taylor's access to physical therapy services...and, in the end, that truly is all that my husband and I can do. Fight the good fight and keep the faith.