Fantastic

Today is Sophie's IFSP. We have a great team and I expect it to go well. In the meantime, be sure to take a look at the new Halloween theme blog background and new header (for my RSS readers).

And now, I'll leave you with one of my favorite Special Olympics PSAs.

Time

To every thing there is a season, and a time to every purpose under heaven.

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.

What Do Therapies Look Like Pt. 3

Sophie's first IFSP with Early Intervention (for her therapies) was last October, (the 6 month was in April) so were due for another in the next couple of weeks. In my mind IFSP stands for I Feel Sophie's Perfect.

To prepare for this meeting her therapists have been testing her, which means working her hard, scoring her based on how she performed, and asking me lots of questions. Questions like, "does Sophie respond to her name?" Yes, just not when you're here. "What words does she say?" Her favorite is Baby, but she'll wait till you pull out of the driveway to say it. "Does Sophie look between you and Mark when you're having a conversation?" I don't honestly know, but you should see her tackle long division.

As Sophie has a diagnosis of Ds, she does not need a 30% delay to qualify for services, but we get to see how she scores anyway. I know it's a good thing to know where we are with her speech, gross and fine motor, and cognitive abilities, and to come up with goals for the next 6 months, but dang it is not fun. Our new plan is to increase her DT to twice a month which means weekly ST, every other week PT and once monthly OT.

"What are your concerns right now?" You mean in what glaring ways has she already slipped behind in her development? Ds effects every person in different ways. Sophie has peers who have lots of different health concerns, skills, and challenges. I know my daughter is a Rock Star in her own way, but it's times like these when we're forced to put her under a microscope that it can be hard.

Today I just want to shut the world out and eat ice cream by the bucket. (give me 9 months and I'll be begging for a good red whine). Then, like clockwork, a friend showed up when she didn't know I needed her with a pair of neon pink spandex HipHelpers for Soph that she ordered herself after learning EI still hasn't gotten around to it. The order with EI was placed in early July. We both blamed my tears on pregnancy hormones. HipHelpers will help keep Sophie from doing the splits while sitting/crawling/kneeling/and eventually standing. More on HipHelpers another time, but I'll just quote Paris and say, "they're HOT."

I'm off to do some damage to the chocolate chip ice cream. And now, more on therapy...