Happy Fourth Birthday Nathaniel

Nathaniel turns four tomorrow. Since it falls on Thanksgiving Day this year, we gathered family and friends a couple weekends ago to celebrate. This birthday carries some significance - the first that Nathaniel can eat cake. I decided on a Very Hungry Caterpillar theme to commemorate and had a lot of fun making with the preparations, especially making the cake decorations out of fondant. Nathaniel blew out his candles and then signed "awesome." Yes, Nathaniel everything about this milestone is awesome. Happy Birthday!

Trick or Treat for Nonverbal Children

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.

Some Big "Little" Exciting News - Speak for Yourself on iPhone

In the middle of setting up our camping trip on Saturday, I received an email that rocked our world - Nathaniel's communication app was released for iPhone and we were invited to be beta testers.

In the time it takes to brown hamburger and open cans of beans to make chili, the app downloaded and I synced Nathaniel's vocabulary from a recent Dropbox backup. On the next trip carrying things outside, I sat down next to Nathaniel on the retaining wall from where he was watching his brothers cut wood. I handed him my phone with Speak for Yourself open. Inquisitively, he grabbed it, stared at the home screen for a minute, and then said "CHAINSAW."

Camping with a Tracheostomy

When I googled "camping with a tracheostomy" last week, I mostly found short lists of summer camps that accept medically complex children. A few forums suggested using an RV for traveling and camping experiences with a trach kiddo. We rented a large RV in 2008 and took five children to the Devil's Tower, Badlands, Mount Rushmore, Yellowstone, and the Grand Tetons. I can easily imagine how convenient it would be to "RV camp" with Nathaniel. Except we do not own an RV; we own a tent.

What Nathaniel's Grandfathers Taught Me About G-Tube Feeding

Rich's father lived with us when Nathaniel came home in August, 2013. He was ninety-two years old at the time and required assistance with meals. My days were punctuated by preparing, serving, and keeping Grandpa company while he ate breakfast, lunch, dinner. Our family talked at length about how a new baby with intense medical needs would intersect with the responsibilities we were carrying at the time for Grandpa. Grandpa participated in some of those discussions. He firmly encouraged us to move forward with fostering and eventually adopting Nathaniel. He expressed a trust not in our ability to manage the additional demands, but in God's ability to help all of us adapt and make room for a little one who needed a family. "I can make myself a peanut butter and jelly sandwich when I need to," I remembering Grandpa offering.

Nathaniel qualified for private duty nursing support, and I was immediately faced with the question of how to use that help. Do I leave Nathaniel in his bedroom with the nurse for the hours I spend in the kitchen and with Grandpa? Or do I include Nathaniel in those times and try to merge his medical care and staff intimately into family life? His brief stay at the pediatric rehabilitation hospital influenced the decision strongly. The morning of Nathaniel's discharged, I met a Craigslist seller on my way to the hospital and bought a used high chair. Three hours later, Nathaniel was within cane's reach of Grandpa at the table. Grandpa and Nathaniel spent mealtime side by side for close to year. Our day nurse at the time, Danielle, attended to Nathaniel while I prepared Grandpa's meal. Danielle and I slowing altered Nathaniel's g-tube schedule to match Grandpa's meal schedule. Daily at breakfast and lunch, she would warm her packed food and the four of us, plus any older boys who where home at the time, would gather around the table.

A Day Without G-Tube Feeds

My granddaughter can roll over. She did it the first time when her Nana, my son-in-law's mother, was taking care of her. My daughter called me to share the information excitedly later that day, "Blaise can roll over! Well... nobody actually saw her do it, but Jan laid her down on her back and went to heat her bottle, and Blaise was on her stomach when Jan came back."

I am jealous. Not because the other grandmother witnessed this milestone. Rather, my emotion stems from the contrast I sense in adults' reactions to Blaise and Nathaniel learning new skills.  It only took one time of rolling over for all the adults in Blaise's life, me included, to consider the skill achieved. Blaise CAN roll over. There is an unspoken assumption there - she did it once and we fully expect she will keep doing it. She CAN roll over. It means thinking twice about leaving her on the couch or bed. It means keep dangerous things further away. Once was all it took.