Summer is ending, and that means it’s time for us to start preparing for one of the biggest highlights of autumn: the National Walk Now for Autism Speaks is just around the corner.
Rory continues to be magical and mysterious every day. She is an absolute joy in our lives. Her musical gifts continue to amaze us. She sings heartily and always in key. She sings the harmonies in songs, and sometimes just makes up her own harmony. She’s become quite the little movie maker, filming snippets on Bob’s iPhone and coming up with new and creative ways to photograph herself. She loves school and has continues to do well on the programs the school devises for her. She’s observant and catches on quickly. She’s hard-headed, feisty, and incredibly funny.
2011 has been an interesting year, one of ups and downs for little Rory. In late winter, the school system was considering placing her in a learning center. This would mean larger class size and a greater student to teacher ratio. However, four cases of strep throat significantly set her back. She started developing new obsessive-compulsive behaviors and her tantruming increased significantly. Diagnosis was hampered because Rory isn’t completely verbal, so she can’t always tell us when she is not feeling well. As a result, Rory was placed in an elementary school autism program. She continues to be in a small class with a 1:1 student teacher ratio. It’s been a step back, but Rory has amazing teachers. She’s in good hands.
We had some promising news this year as well. Rory is part of an autism study at NIH. We learned that the results of her baseline MRI showed that she had low folate in her cerebral spinal fluid. Back in 2009, this was interesting but not particularly meaningful. In 2011, it means something new and very exciting. Over the over 120 children in this study, 13 have low folate levels in their CSF. Other studies have shown that when children with autism are supplements or medicine to boost their folate in their CSF, there has been “partial to total clinical recovery” in many children. It’s incredible. I could barely believe it when I heard it. Rory will participate in another study later this year to see if they can boost the folate levels. Maybe we will see improvements. Maybe not. But it’s so exciting to see how much progress has been made in autism research in just a few short years!
And this is exactly why we walk. Autism Speaks funds studies all over the world. They award grants to finance important, promising studies and also fund larger initiatives and clinical programs like the Autism Genome Project and the Autism Treatment Network. The money Rory’s Rovers raises go to projects like these and also to raise awareness worldwide. Because the more people know, the sooner parents and caregivers see the signs, the earlier the diagnosis and intervention!
Rory was diagnosed almost 4 years ago, and we’ve seen incredible progress. We are lucky to live in a place with great schools and access to incredible services. And we are blessed to have the support of our friends and family, who not only love Rory but support our efforts to raise money for Autism Speaks. Together, we can find the missing pieces.
If you would like to donate, go here:
or here to make a general team donation: