October is Augmentative Alternative (AAC) Awareness month. It is also the month annually that I have to resubscribe to the website building program I use to write and host this blog. The overlap strikes me as appropriate. My blog has slowly migrated into a site that focuses on Nathaniel and his need for communication; it is meaningful that I yearly recommit to sharing that journey during AAC awareness month.

Nathaniel's medical conditions stole time from being a student this week. He has recently experienced some complications with his trach stoma, and we think he might have a respiratory infection. Thankfully, we've managed at home, which is a huge improvement for this kid who used to need ICU support for minor viruses. But we've been to the doctor a number of times and have added additional treatments to our routine. He hasn't been sleeping well, which means I haven't slept well.

We are like every other AAC family.

Despite all the blog posts I've written this month about providing an AAC immersion educational setting for kindergarten at home for our son, we struggle daily. Sometimes we go long stretches of the day without modeling language on Nathaniel's device. There are times we have to search for the device to advert a communication frustration meltdown. Sometimes we leave the device in the car. Under the bed. In the other room. Sometimes we are too tired, too hurried, to doubtful that this will really work.

Like other AAC families, we need constant encouragement to keep on keeping on.

We need simple ideas of incorporating language into our lives that require little set up, little clean up, and no expense.

We are using PrACCtical AAC's list of core words for our July augmentative and alternative communication work with Nathaniel. My goal is do one fifteen to twenty minute activity per day that allows me to model the words and motivate Nathaniel to use his device and learn new language skills. There are twelve words in the list; that is a lot to take on all at once. I've found success with focusing on four words per week for three weeks and then having the last week of the month to mix it all up and revisit some of our favorite activities. The words we are worked on this week were FIND, COLOR, AND, and LOVE. Nathaniel loves to speak in one word utterances and let his communication partner do the work, but he more than capable of two to three word utterances; longer utterances are emerging. I tend to model between three and five word phrases and sentences. He is becoming aware of pronoun use, present progressive verb endings, and adding a plural s.

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.

It was during the second session of developmental language group that I realized another layer of complexity because of Nathaniel's inability to produce any audible noise with this vocal cords.

He can not scream to protect himself from others or get help.

Two years ago today we gave Nathaniel an iPad mini with an augmented communication app. He was twenty months old. There was much we did not know at the time. We knew very little about augmented communication or Nathaniel's long term communication needs. We did not know about key guards or child friendly cases or stands or modular tubing to hold the device at an easy access point. In some ways this might have worked in our benefit. In all our not knowing, we did not know how unusual it was to give a twenty-month old a high-tech, voice output device. We wanted to give our son access to words. Lots of words. All the words he would need to be fully twenty months old

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 had a very happy little guy at dinner tonight. Nathaniel ate orally. And he loved it.

I had one overriding thought when the team in Cincinnati told me we could start oral feeds - "I want this to be simple." Advocating for someone's safety is hard work. Watchful waiting for three years is stressful. As we find a new routine to life post surgery, we are just beginning to see how much strain our whole family has lived with for a long time. Intense feeding therapy is the last thing I want to start right now.

When Nathaniel discontinued oral feeds, we decided to keep him at the family dinner table. He prayed with us. He listened and participated in our conversations. He received his g-tube feed while we ate. Almost nightly, he would reach for our silverware, plates, and glasses. I broke my heart. Often he ended the meal with someone's fork or spoon in his mouth. We kept his oral stimulation toys and other quiet activities available, but I think holding and pretending to use a utensil, even without food, gave him pleasure and helped him feel like he belonged.