Last week we brought Paige to see a developmental pediatrician (after months of waiting for the appointment). She was diagnosed with PDD-NOS (an autism spectrum disorder). Even though we were prepared, it still felt like a shock when the doctor said those words. You can only prepare so much until something becomes real. You know?
The doctor told us more about it. Pervasive Developmental Disorder is the overarching umbrella (soon to simply be called Autism Spectrum Disorder). Underneath it are a few different disorders including Autistic Disorder, Asperger syndrome, and Pervasive developmental disorder-not otherwise specified (what Paige has). It's a developmental disorder, but she doesn't fit in the autism category nor does she fit in the asperger category. So, she's in a short of "catch-all" category. Her delays were found to be in communication and social skills. Her academics/cognitive skills seem to be ahead, so that is helpful for her. The doctor recommended between 10 and 15 hours per week of floortime treatment with a behavioral specialist (who comes to our house) in addition to her 3 hours of Early Intervention treatments. sigh. It's a lot. I have to figure out how to fit it all in. It could be worse, but still isn't something you plan on, you know?
It's not what we pictured.
The social worker who coordinates Paige's "case" told me a story a mother of an autistic child shared with her. She said that finding out your child is autistic is a little like you were planning on a trip to Paris. You pack, you plot, you plan and you get your tickets. You fly across the globe in excitement. The plane lands and you find yourself in Amsterdam. It wasn't what you planned. It is a cool place, and ends up being a blast. But it just wasn't what you'd imagined your trip would be. But it ends up working out and you have a great time.
I'm so happy that Paige is going to be getting the extra help she needs to make the connections she needs to make. The doctor is confident that she will flourish with this additional therapy and that perhaps her disorder will be undetectable by the time she begins school. Here's hoping!
I'm just sad that our precious Little P has this challenge placed on her little shoulders. But she's so happy-go-lucky and loves having everyone come to play with her all the time. She certainly doesn't see it as a hassle; she doesn't know any different.
We've had family members asking for clarification on what Paige's main challenges are. She seems so typical to most. Among some other things, she has trouble "generalizing her skills." She HAS the skills she needs but has trouble using them in a quality and effective way in terms of communicating her needs and wishes. Her learning, her play skills, etc. are affected. I came up with a metaphor to further clarify. Imagine you have a piece of wood with a nail in it and someone shows you how to drive in the nail with a hammer. Now, imagine you ALSO have a rock and a mallet, but someone takes away the hammer. NOW how do you drive in the nail? Most people would automatically make the connection that you can use the rock or mallet to drive in the nail. But Little P would likely sit there and stare at the tools and not understand that she can ALSO use those to do her work. The house doesn't get built without the hammer. Until someone comes and SHOWS her that she can use the rock or mallet. Then she's all set. Would she make the connection eventually? Probably. But it would take a long time (thus causing delays). So, people will be coming to help teach her about making these connections through play. The hope is that soon she will be able to make these connections all by herself without extra help. They will also be helping her with her communication skills and general play skills (that pave the way for future learning).
In the meantime, I'm still wrapping my head around this whole thing and wondering what the future will bring. We will make lemonade out of lemons; that I can be certain of. The other thing I can be certain of? How much I love Little P to the moon and back. That she is the best thing to ever happen to us. And that none of this changes how wonderful, special and perfect she is. She's our little star and we're so lucky she's ours.