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.

Original Post: October 2014. Updated: October 2015, October 2016

I think a lot about how to help Nathaniel understand and engage with the world and how to help the world understand Nathaniel. In this light, Halloween has been troubling me.

How does a child who can not speak and does not eat participate in Halloween?

We could skip it. There are many Christian homeschool families who avoid the holiday all together. We did at one point in our child rearing. In recent years Halloween has provided an excuse to spend time with our friends, Dan and Kelly and their seven children. October 31, 2013, Nathaniel's first Halloween, was a cold and rainy week night. After enjoying soup with our friends, we brought him home and missed the door to door part of the evening.  In 2014, we celebrated Halloween with Nathaniel's foster family. We visited a few homes and went home early again.

Nathaniel climbed through the van door and scooted past his car seat to grab his water bottle. We had stopped at park near home after therapy; we were leaving for home. "Thirsty Buddy?" I asked. He nodded, opened the folded yellow straw top, and tipped the bottle up. A drop of water dripped down his chin. We have been working on drinking since February. I have bought countless cups and water bottles. Some with lids leak on the cup side. Some with no lids leak on the Nathaniel side. Some seem to fill his mouth quicker than he can swallow and the leaking comes from his lips. I had high hopes this new one would work. Nathaniel handed me his cup and crawled in his car seat. I wiped his chin, buckled him, handed back the cup, and prepared to leave. I had high hopes the first drip was an opps. Before the van was to the park entrance, I had to pull over. As he continued to drink, water continued to drip down his chin and into his stoma causing him to cough and needing suctioning.

Nathaniel is taking a college class! Well, not really. Nathaniel is a college class. He has been accepted into a preschool level Developmental Language Group (DLG) at a local university. This summer he attends for two hours two mornings a week. The program is offered through a hands-on clinic where students enrolled in a Masters of Science in Speech-Language Pathology program work with patients under the supervision of university faculty members. For the summer session, three clinicians and an instructor are working with six children. Nathaniel is the only AAC user. He is learning to navigate play and preschool programing alongside peers capable of speaking.

Nathaniel's airway surgery is about a month away. Now that Christmas and New Year's is over, it seems close. We wanted to share our plans and the needs our family has as the date approaches.

Both Rich and I will go to Cincinnati for the surgery. We have been told to expect a five hour surgery and for Nathaniel to spend a week in the Critical Airway ICU afterwards. Nathaniel will have a new stoma and possibly medical new care routines that we will learn before his discharge. We have been asked to stay in the Cincinnati area for a second week to be close to the surgeon and hospital in the event of complications.  There are three different ways you can help our family now.

A friend sent me this photo on Christmas Eve. "Baby Jesus has a trach this year," her text said.

Doll baby Jesus' mother is six-year old Maggie. Maggie's mother is a medic who spends her days training first responders in tracheostomy emergencies.  Maggie's grandmother is a Sunday School director. Maggie's grandfather had a trach. Blend it all together and it is logical that when a baby was needed for the Family Service nativity at church that Maggie's trached baby doll was cast for the leading role.

The baby wrapped in swaddling clothes and lying in the feeding trough had a tracheostomy.