Rich and I are professionals at a consistent bedtime routine. I think we crave it as much as the children. It closes our day familiar and predictable. We share responsibilities; we know our roles. Nathaniel knows the schedule too. After bath and g-button care, trach ties, lotion, and pajamas, he is ready for stories. Then a short cuddle on a parent's lap in the rocking chair, and he crawls willingly into bed. Many nights, Rich shares these last moments of the day with Nathaniel, while I use the time to catch up on emails, prepare for the next day, or write. Last night, Nathaniel came into the living room between stories and getting in bed. Something new. He was carrying his talker. He said, "Night Night, Mommy," and offered a hug.

It has been about six months since I offered a review of Nathaniel communication growth and shared what we are working on. Nathaniel's new bedtime routine reminded me that I have much to write about.

We are having fun with a snow today! We had a little dusting about a week ago, but today was our first playable snow. This homeschool mom does not allow snow days. I save them up for spring fever days - those first days of spring that are so beautiful one can not possibly stay indoors and do school. So after my normal morning meeting with Josiah, Nathaniel and I headed outdoors.

Nathaniel first insisted on exploring the snow mittenless. That, and our entire outdoor experience, last less than two minutes. That smile faded quickly into many tears. We found a different pair of mittens that he seemed to like better than the first I tried, and went out again. The experience went much better the second time. 

Yesterday I visited my own blog to find a link for someone and realized it has been two weeks since I posted last. It takes our family at least a week to recuperate after one of Nathaniel's hospitalizations. Thanksgiving, recuperating, and now preparing for Christmas have all tumbled into each other and filled the empty crevices in each day.

Rich took off a couple hours early one Friday evening so we could go cut down our Christmas tree. With two of our older boys working retail, finding times for this traditional family outing was tricky. We can't remember the year we started going to this tree lot, but we think it has been around twenty-years. It is one of my favorite Christmas moments.

PrAACtical AAC, a popular blog for speech therapists working in augmented communication, shared a post this morning that hit me hard. "No matter what the age or type of disability," it said, "almost all AAC learners face the challenge of communicating effectively during encounters with healthcare professionals. People with AAC needs are among those who are considered to be communication vulnerable and do best when there are planned supports in place."

Communication vulnerable.

Three years ago tonight another woman held Nathaniel warm and secure in her body sheltered from the encroaching world. I don't know when her labor pains started or who drove her to the hospital. I don't know how many needle sticks it took to start her IV or what type of pain reliever she had. I do know that three years ago tomorrow morning, the doctors delivered a baby boy from her womb and she heard no cry.

Last week, my father asked me how I know if Nathaniel wants to add a new word to his talker. Isn't that just like a grandparent - challenging the middle generation on behalf of the younger - I love it!

Thankfully, I had a recent example of Nathaniel and I negotiating the addition of a new word to share with him.  Nathaniel became infatuated with the movie Frozen this month. Despite our encouragement that he let it go, he hasn't. His usual show requests are Curious George, Daniel Tiger, or Cars Movie - all titles he has on his talker.  Rather than using his talker to request his normal shows, he repeatedly brought me the DVD case for Frozen.

I have had two busy weeks since I returned from Wyoming. Three priorities have been filling my days: Josiah's homeschool work, Nathaniel's speech program, and getting ready to leave again. I will dedicate an entire blog post to our homeschool year someday, and I will write a bit below about new developments in augmented communication. But first some details about my next trip.

Nathaniel and I are leaving Sunday for Cincinnati again. We will be there two weeks this time. On Monday he will have a FEES study to evaluate his aspiration. On Tuesday he will have a tonsillectomy and adenoidectomy. Hopefully he will spend just one night in the hospital for observation, but we will need to stay in a hotel the Cincinnati area until October 3rd to be near the surgical team through a post-surgery risk period. 

Augmented communication is hard. Nothing about it is easy or normal. 

Take last Saturday morning.

Rich, Joe and Nathaniel were outside working on Josiah's bike. When I walked into the situation, Nathaniel was upset and on the verge of a big melt down tantrum. Rich filled me in that it was regarding a tool that Nathaniel had confiscated as his own, but Josiah needed periodically. I asked where the talker was, hoping to offer everyone another tool to work through the situation. The talker was not outside.

Ben, Nathaniel and I went to Lowe's this week. Nathaniel had his talker in the cart and when the cashier started talking to him, I reached over and used the talker to say HI on his behalf. It is the easiest way to let someone know he is not going to respond verbally. Most often, hearing the talker catches people off guard and I can quickly sense the individual's familiarity and comfort with special needs children. The cashier came alive when she heard the device. She had questions. By the end of our transaction, she had shared that her own son has Down's Syndrome and was given a Speech Generating Device (SGD). He does not use it because he was teased and told it was for babies. She wanted more information. We wrote down the name of the app, name of my website, and the name of Nathaniel's new Facebook page.