Today we released a Monarch butterfly. Alexander cared for it so tenderly. He fed it as a caterpillar, talked to it, and watched excitedly when the cocoon formed in the habitat. In the early hours before we awoke, it decided it was time to reveal itself as a beautiful butterfly. This afternoon, we set it free just when I needed a reminder that we all have our own time and pace. Camera ready, we opened the habitat but the Monarch didn't move. Alexander said goodbye, and yet it stayed still. Eventually we got on with our day. Only after we had walked away and were no longer invading it's space did this Monarch take flight. We were there, camera not ready, when we caught sight of it as it fluttered up and off to the neighbor's garden.
Sophie's yearly IFSP is coming up in a few weeks. Once again it's time for evaluations. Mark and I had already been talking about our observations that Sophie's rate of development, her pace has slowed significantly in the past 6 months. We're not saying she hasn't made gains, because she has. I've shared these thoughts with each of her therapists. They have reminded me that as a child is working hard on PT, that often the other skills get put on hold. She is currently climbing on everything and walks (or shuffles, meaning a shift of her weight in her hips vs. lifting her knees) a little everyday, but her preferred method of getting around is still crawling. She could set world speed records.
Still, for me as it is for many parents, the time for evaluations is difficult as we wrestle with so many emotions, truths and perceptions. It is a time for grieving all over again. I read over our goals for this 6 month period and realize many have not been met. Is it my fault? Have we not worked with her enough? Too much? Is it about my expectations and issues of acceptance or has her progress really slowed? Why? What can we do? How do I handle this feeling of sadness when other's would give their left arm for their own child with special needs to do what Sophie can do. Guilt over that is not helpful either as it discounts our feelings, which are just as valid.
Having Alexander has been so good for Sophie. She's had a sibling to imitate and follow around and I know that he has helped her development significantly. Now that Helena is here, I have to say, I was not truly prepared for how I would feel as I watched her develop and grow. To say I don't make comparisons is a lie. I don't want to. Most often it's just that Helena is constantly shocking me at what she is already able to do. It seems so fast as Sophie's pace has become my 'norm.' This too is cause for grieving.
This morning Sophie had her PT eval. After the test and hearing the numbers and age ranges for where she is at, I told her therapist that she's still Sophie. She's still the same little girl that she was 60 minutes ago. I said it not for the PT's benefit, but more as a spoken reminder to myself. The numbers were just where I suspected, so really it did not come as a surprise. And yes, her rate of growth has slowed. It was helpful that her PT read over the notes section of the last eval because I was reminded of how much she has accomplished that the numbers do not reflect.
Sophie has her own time. She has her own pace and that pace can and will slow down or speed up as she grows and learns. I am grateful for her EI therapies despite the negatives that go with it. Lately I've read as other parents struggle with the question of whether or not therapies actually benefit our children or if they would learn their skills anyway and in their own time. Is it worth the time it takes to do therapy? Is it worth being under the microscope at least every 6 months as our children are evaluated and scored? Is it worth the guilt we feel when we know we haven't done enough therapy on our own during the week or the frustration for having to work in too much in our daily lives instead of just living?
For me, the answer is unequivocally, yes. Yes, yes, yes. The research is there. Our evidence, albeit anecdotal, is there. Besides, if we only do therapy for 45-60 minutes per session, but don't work it into our everyday lives, then we're not really getting therapy. Even if I'm just hedging my bets and hoping that EI will make a difference, well, Sophie is worth it. She has an amazing team and I am very appreciative of all they do for her. They have taught us so many ways to help her and meet her where she is at. Things I would not have thought of on my own. They have also held me up as her mom as they grieved and cheered with me. They are invaluable.
So, as I stumble through this time of evaluations, I need to remember our mantra. She's still Sophie. She's not a series of numbers. She is not a diagnosis. She has her own time, her own pace. And she is a wonder to behold.