Hello from Cincinnati... Let's Have Cake
had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.
In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions and helped to reinsert the button. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.
How I Prepare for Our AAC Consultations
We meet with our AAC team Wednesday afternoon for one of our quarterly consultations. It will be a transitional meeting for Nathaniel as his weekly speech therapist is anticipating a new baby soon. Nathaniel and Miss Rebecca had their last "before baby comes" session yesterday. (Many blessings to you and your little one, Rebecca!) Our therapy plans for the fall include continuing in Development Language Group two mornings a week and private therapy (Occupational and Speech) one morning a week.
As I prepare for our AAC meeting, I am again shuffling papers, making lists, and thinking about goals I have for Nathaniel's language growth. I reflect on times Nathaniel experiences communication frustrated as that often indicates areas that need solutions and work. This document, Language Functions & Early Generative Language Production by Gail M. Van Tatenhove, PA, MS, CCC-SLP, was given to me very early on in Nathaniel's AAC journey. It continues to be a help when I prepare for our AAC meetings. I revisited Tatenhove's word lists and compared the list to open words on Nathaniel's device. I have created a list of words that I feel we need to work on learning.
Printing and Using Low Tech Talker Symbols - Part 2
I shared earlier this week how I print low tech version of Nathaniel's talker symbols. (Read here.) Just as a reminder, Nathaniel uses Speak for Yourself. The symbol set is called Smarty Symbols and I use Custom Boards to create printables. Most of the time, that has worked flawlessly for me. Occasionally, I can not find the correct symbol on Custom Boards. I have asked some questions behind the scenes of both SFY and Smarty Symbols folks and learned that yes, some symbols used when SFY was originally developed are not currently available. I use the following options when I am unable to find the SFY symbol on Custom Boards.
Printing and Using Low Tech Versions of Talker Symbols
Vani, a speech therapist from Australia, emailed to ask how I print high quality low tech versions of Nathaniel's talker symbols. Hope this helps explain how I create and use them. Bonus! A free printable of some Speak for Yourself transportation symbols that fit in the Cariboo game, is included at the bottom.
Nathaniel uses the app Speak For Yourself (SFY). The symbol set for Speak for Yourself is Smarty Symbols. We use low tech versions of these symbols to drill our five weekly words, to offer a visual of word combinations, and for Nathaniel's visual schedules. The photo below shows a variety of these uses. This week's words on the the left, the other photos show some visual schedules.
These Are a Few of My Favorite (Preschool) Things
I have been a stay-at-home mom for twenty-eight years. Next week I start my twenty-fourth year of teaching my children at home. Josiah was born into a homeschool family; he nursed through older siblings' math lessons and overheard first, second, and third grade reading lessons all the same year while playing in his high chair. He was the youngest before Nathaniel and is a senior in high school this fall.
Both Joe and I reap the benefits that he has never known family life apart from homeschool life. For us, there has always been a blurring of what is daily living as a Rankin kid and what is homeschool; Joe has always known his parents, and mother specifically, to carry the duel roles of parent and educator. There were no "before we started homeschooling" habits or relationship patterns to overcome.
I Wish My Child Could Scream... Or at Least Whimper
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.
Happy Second AAC Anniversary!
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
Vacationing at Lakeside 2016: Augmented Communication and Pointing
When Nathaniel was fourteen months old, our then speech therapist asked if he was pointing at things. She expressed the importance of pointing and joint attention in language development and stressed that these were precursors for further language growth. She advised that I should place Nathaniel, who was still new at sitting up, in the middle of the room with everything desirable out of reach. "Unless Nathaniel points to the object, do not let him have it. No toys until he points to them."
Nathaniel was perfectly content to sit quietly for full days without toys.
Three Years of Knowing Nathaniel
Three years ago this morning we met Nathaniel.
He was hospitalized the last week in June for a virus, and one of his physicians came by for a visit. It was primarily a social call. During our conversation we reflected on how little we knew about Nathaniel three years ago. I remember vividly meeting her for the first time in July, 2013. I remember how patiently she explained the airway surgery Nathaniel would need. Though the medical team knew his airway was complex, they anticipated reconstruction. Surgery would be the summer after he turned three - this summer. They anticipated a week in the hospital. They had good reason to hope that he would live tracheostomy free and gain vocalization. Three years ago today we started down a journey of medical complexity that we thought was temporary. Everyone thought it was temporary.