WSFN Knows No Borders
by Alan Schroeder - Athena, Oregon

Hello from Athena, Oregon! I’m Alan Schroeder, and I have three wonderful daughters - Katie, Ali, and Emma. We live about 20 miles southwest of Walla Walla, Washington. Athena is a small farming and commuter town. I am a civil engineer for an engineering and surveying firm serving southeast Washington and northeast Oregon. Most of my days are spent in Washington and nights in Oregon. People tell me that’s backwards for tax purposes!

My three girls were all born in Walla Walla. Katie is 10 years old, and is clearly a firstborn child. She is responsible, caring, reserved, and well liked by all. She loves softball and soccer, and is getting interested in volleyball. She reads with a passion. Katie finished the new Harry Potter book the first day the book was available. Ali is eight-years-old, and very much a middle child, like her dad. She is full of enthusiasm, sometimes transitioning to stubbornness. She is my ice fishing and grouse hunting buddy. Katie and Ali both enjoy road trips to new places.

Katie and Ali have embraced their roles as sisters to a sibling with special needs. It is amazing to see how they interact with and encourage their little sister, Emma. It is also rewarding to see them interact with others in the special needs community. Katie and Ali have a comfort level with the special needs world that I certainly did not have when I was growing up.

Emma will be six in October. Emma has a chromosome deletion known as 22q13 Deletion. That means a segment of the long arm (q) of the 22nd chromosome is missing beginning at the 13th band. Genes associated with the missing chromosome segment are also missing. The missing genes result in atypical development.

22q13 Deletion is transitioning to Phelan-McDermid Syndrome, named for two of the research doctors leading the charge to understanding 22q13. The ability to diagnose 22q13 Deletion is a result of modern science and technology. 22q13 Deletion is certainly not new, but it was not until the 1990s that a detection method was developed. Since then, more doctors have been informed of 22q13 Deletion and more testing has occurred. Consequently, the confirmed cases of 22q13 Deletion are largely a group of kids in developed countries born in the last 15 years. Emma has the proud distinction of being the very first confirmed 22q13 child in Oregon! There are around 300 confirmed 22q13 cases in the world, including several in Washington.

22q13 Deletion characteristics often include hypotonia (low muscle tone), speech and language delays, fine motor delay, and various physical anomalies. Some children exhibit more severe delays or characteristics than others.

Emma is a very happy young girl. She does not speak words, but has her own verbal squawks, shrieks, and laughter. She used to be prone to falling or tripping, but her muscles have caught up a bit this past year. She overheats and overcools easily. Like many 22q13 kids, she has a couple of flaky toenails that never require cutting. Her fine motor skills are a work in progress, and her receptive and cognitive abilities are delayed.

Emma was diagnosed at 18 months. Sarah, my girls’ mom and my ex-wife, caught on early to Emma’s delays in sitting up, crawling, babbling, and some respiratory issues. Emma’s pediatrician searched and searched for answers. We ultimately ended up with a diagnosis from a genetics clinic in Spokane. It took awhile to understand what that diagnosis meant and how it would shape our lives. We are still learning. Emma will always require assisted care of some type.

In the first several years Emma was in the hospital on a regular basis. Respiratory issues, reflux, a fall, and vulnerability to viruses sprinkled throughout those years. Thankfully there has been no surgery, just a lot of intraveneous fluids, oxygen, monitors, prodding from doctors and nurses, and one life flight from Walla Walla to Spokane. We also had a big scare with dentistry. Emma had several molars capped. The anesthesia hit her hard and she had respiratory difficulties coming out of the procedure.

Right now Emma is doing very well. She is healthy. She is motivated when we give her opportunities. Creating new and more opportunities seems to me the biggest challenge. Emma is a sponge right now and anything we can do regarding her development will help her later. But I also have two other kids, work, and a regular life. The right balance is still a foggy concept. Emma does have many caring people around her, and our hometown of Athena is very supportive. We all are looking forward to her venture to kindergarten and hope that spurs more excitement for Emma.

Emma’s biggest challenge now is communication. We can tell she is just bursting with thoughts, but can’t express them easily. Early on we tried sign language for communication. Emma started to sign a few words, but that eventually faded. She has since picked up some basic picture exchange capabilities. We are now moving to an assisted communication device that has a broader range of pictures. Her kindergarten will use the same device that Emma has at home. We hope for great progress based on Emma’s interest in assisted communication.

Emma is stubborn, and wants to do things on her own. That is great but is accompanied by spilled cups, messy tables and counters, and food on the floor. We have our own special experiences at Applebee’s... and therefore, we tip well.

On the 4th of July the girls and I went to a fireworks show. When the show started, Emma stretched both arms high into the sky with delight on her face. There was a brief lull between each round of pyrotechnics. During the lulls Emma would lower her arms with palms up - the “what” sign. Then when another burst hit the sky she shrieked and stretched her arms up to the sky again. Cyclical joy and wonder - that evening hit me as a dad, like I am sure each of you has experienced.

There is a web-based group for 22q13 families. The 22q13 Deletion Foundation has a group website and a Yahoo chat group. There is an organizational structure to keep track of families and maintain a centralized data base. A big role of the foundation is to organize a conference every-other-year. The conference is held in Greenville, South Carolina. We have been to conferences in 2004 and 2006. The group is growing, with over 300 people representing about 100 families at the 2006 conference.

I joined the Washington State Fathers Network (WSFN) a few years ago when there was a Saturday event in Spokane. I have since been to a couple of gatherings in Yakima, and the state conference last fall in Seattle. So far the Yakima group is the most “delinquent” group of the bunch, but they do seem to enjoy themselves! The WSFN has given me the opportunity to hear from other dads in the same boat as Emma and me. I’ve learned a few practical things, and some impractical things that were still worth hearing. WSFN has also given me the audience to share my situation to people that are following the same path.

With mixed results, I am trying to set up a Walla Walla group. There are three other dads locally and two from Oregon that have expressed some interest. I got a bit discouraged this past spring. I was trying to find other dads through several local school districts, but then summer hit and all my contacts went home. We are starting again this fall knowing that the timing will be better with school in session.

The girls and I just christened a brand new house. We stayed the weekend in sleeping bags on the floor. We had take-out Chinese food and watched a couple of bad movies. We did a little unpacking and a lot of contemplating about how to fill the rooms. Emma carried around a red Easy Button from Staples - it says “that was easy” when you push it. She wore it out over the past few days and then micro-waved it. So I need to get a new Easy Button and put a latch on the micro-wave. Emma also christened many of the windows in the house with hand and face prints. I am still not accepting that the windows have to be smudged. Windex is my friend. Emma and I will work on that together.

As far as myself, I am a work in progress, too. I still wonder how I find myself as a single father of a child with special needs - not exactly what I anticipated. So I am adjusting to the circumstances to find the right fit. I think that involves more hunting and fishing, more trips to the beach, and better shop tools. However, I do know it starts with my three girls!

Alan Schroeder lives in Athena, Oregon. He is an outdoorsman who enjoys fishing, hunting, and hanging-out with his three beautiful daughters. Alan has also taken on the leadership role of facilitating the local Walla Walla, Washington Fathers Network group. For more information about the Walla Walla group, please contact Alan at: (509) 520-8012.