Welcome to my blog. I write about life as a Christian wife, mother of eight children, and grandmother.
Enjoy.
All in Disabilities
Nathaniel and I left his Cincinnati Children’s Hospital check up last May with an interesting recommendation from his ENT: look beyond the pediatric community for information and support. I had arrived with questions about Nathaniel’s options for voicing. They shared of another patient with a laryngotracheal separation who learned to use esphageal speech. They also expressed a great deal of hope that given the right support, Nathaniel had a good chance of voicing.
I’ve been watching the daffodils in my yard cope with a slow coming spring. They sprouted up fast after a few warm days in February. Then it turned cold again, snowed a few times, and they stayed at their four-inch height for close to a month. They doubled in height this last week, and now have buds. But evidence of enduring the extra weeks of harsh weather remains in the dried and browned ends of the leaves.
I know it has been a long time since I posted on the blog when I can not remember my log in password. I have many topics for blog posts floating around in my head; I haven't made writing a priority this last month.
I am going to ease back into blogging. Nathaniel and I participated in a week long challenge to share photos that represent the hash tag #seemeseemyaac. The goal of the Facebook campaign was to bring awareness of alternative and augmented communication. People participated from all over the world. Pretty cool. Here are our photos and the snippets of information I shared with each photo about our AAC efforts.
I shared on my personal Facebook wall that we received our first rejection notice from a private Christian school for Nathaniel’s enrollment next fall. Someone commented, “I get how the school could make that determination. If they don't have a special education program with self-contained classrooms, then Nathaniel would have to be placed in a regular classroom. His medical needs and communication would most likely create classroom management issues.” The school’s reason "Our methodologies do not allow for a child to have a disability in the area of communication,” was the first hard blow of the day. The comment was a second and harder blow.
Nathaniel saw the hand surgeon today. It has been almost a year since surgery to rotate his right thumb and six months since our last check up. The surgeon is very happy with the placement of the thumb and Nathaniel's ability to do the pincher grasp with the right hand now, something he was not able to do prior to surgery. Nathaniel's right hand will probably not be his dominate hand; we expected that. But surgery has created a very useful support hand.
We have been working on hand strength for months in occupational therapy. Nathaniel struggles to pull up his pants or separate pop beads. The right thumb, while in a good position now, lacks normal muscle structure. Surgery included splicing a muscle on the pinky side of the hand and bringing it over to the thumb to increase muscle support. Nathaniel has a curled pinky finger as a result of relocating the muscle.
I did something Monday that I have only done once since July 30, 2013. I drove alone with Nathaniel in the van. We went to the park and took a walk. We stopped by Barnes and Noble. We were away from the house for almost two hours.
It felt so good to be out together. Alone. Together.
