One Year Later: Christianson Syndrome Update

It’s been an entire year since my little boy was diagnosed with a rare genetic disorder called Christianson Syndrome and so much has changed in our lives, but yet so much has remained the same. Thatcher is still a happy little boy, most of the time, but he is also now a 6’2″ thirteen year old who has raging teenage hormones and a love for his dog and his family. The past year has been quite an emotional roller coaster for my husband, son, and me, and Thatcher’s service dog, Saul just goes with the flow of it all, still adjusting himself to Thatcher’s needs, whatever they may be.

Thatcher still enjoys cuddles with his dad, even if they are almost the same height now.

A year ago, we received this devastating news and with it came the reality of a shortened life expectancy, a growth on Thatcher’s brain that we still don’t know about, an understanding of Thatcher’s healthcare needs as well as our own, and the frustration of a global pandemic all while my husband and I dealt with our emotional needs and I underwent a complete hysterectomy with an oophorectomy due to pain that I’d had in my left ovary since November of 2019. So much can happen in a year and yet a year seems so short, except now, in 2020 when we are facing the largest global pandemic since the 1918 Spanish Flu Pandemic. But now we have Zoom and Facebook and technology. And for as many downfalls as we can consider of technology, it is all made up for by the fact that I did not have to quit going to my own appointments simply because of a global pandemic.

Thatcher and Saul love riding in Dad’s car for a drive during the great pandemic of 2020.

There has been so much that I have learned this year about myself and about Thatcher that it is overwhelming to even write about what an adventure it has been. I have learned as a carrier of this rare gene mutation, that I too am affected by it on a biological level. I have also learned that there may be more to what I can accomplish that I had never before considered. Donnie, my husband and Thatcher’s father has also learned so much about himself and his family in the past year and we are surviving the best we can during what the world has condemned as a dark time in our world’s history.

Saul is living his best life getting to stay home just a bit more, though he missed going out for a while when things first shut down in March.

And we have met so many wonderful new people without ever leaving our home. The gift that this global pandemic has afforded us was the ability to actually meet with and talk to other parents whose children are like Thatcher via Zoom chats that happen once per week. We are living in a time of immense uncertainty, but we are surviving, day by day and Thatcher is continuing to live his best life as a homeschool student who learns by doing and interacting with his cousins and family. We still go out to the store and still go to therapies, even though that had been put on hold for a time period, but the landscape has changed somewhat.

Thatcher’s 6 year old cousin, Leora. They share a birthday, so she was hugging his Spider Man balloon.

Thatcher now rocks his big blue transport chair when we go out to the grocery and all of his family and friends are more understanding of his needs now that they better understand them. Thatcher wears his mask like a champ, most days and we continue to go to therapies, just as we had done last year, but with some slight adjustments. We avoid the park due to sanitary concerns (the equipment is difficult to clean and multiple people use it per day), but we go for drives and walks and we see friends and family when we are able, though it is not as often as it had been.

Thatcher’s new chair. It’s not easy to take apart and put back together, but he loves it and is so much more comfortable in it.

And finally, we face the challenges of each and every day with support from places we may have never even considered previously, so while 2020 has been deemed the worst year ever, and I don’t doubt that a bit, it has also been a blessing to my family in a time of personal crisis and so we move forward, closing out the year with a new way to spend time with family for the holidays and a new way to venture out into the world while maintaining our composure with a difficult diagnosis and an uncertain future.

A New Diagnosis and Vindication

On Monday July 11, 2011, I finally received the phone call that said my son, Thatcher, definitely has Autism. The most difficult part about this diagnosis, was actually figuring out how to get the diagnosis and the “now what?”

Thatcher when he was 3 1/2 years old, a few months before Thatcher was diagnosed with Autism.

Little did I know that on Friday, September 13, 2019, just eight years later the “now what?” would seem easy in comparison. This was the day that we received the diagnosis of Christianson Syndrome. And now, we are left with this lingering question all over again. “Now what?”

Thatcher at a speech therapy appointment. His service dog, Saul is under the table (not pictured).

This time, however, we aren’t just looking at what kind of services can we get to help Thatcher be his best Thatcher, but instead, where do we fit in in the world of Autism. We have seen the neurodiversity movement take force and wondered what that would mean for Thatcher. Would people be more accepting of him in the future? I am not so sure, to be honest. Yes, this means that his brain works differently, but this new diagnosis also means possible regression in Thatcher’s future. The life expectancy for people with Christianson Syndrome is 25-30 years, but one that I have heard of in a Facebook group is 55 and in good health.

Thatcher as a baby, before we knew, but when we suspected that something was different.

Of course, by now, if you haven’t looked up Christianson Syndrome, you are probably wondering what it is. Christianson Syndrome is a rare genetic mutation that affects the SLC9A6 gene on the long arm of the X chromosome. That is one of the sex chromosomes. Every child is born with either 2 X chromosomes or an X and a Y chromosome. This is true regardless of gender. Thatcher was born with an X and a Y chromosome. The Y chromosome came from his father. The X chromosome came from me. After doing genetic testing over, which we had initially done at Cincinnati Children’s Hospital when Thatcher was first going through the process of an Autism diagnosis, we discovered this gene mutation on the long arm of X chromosome. We also discovered that I am a carrier of Christianson Syndrome, which means that every time I have a child, there is a 25% chance that that child will have Christianson Syndrome. That is actually pretty high odds. 50/50 for a male or female and 50/50 that the male will have Christianson Syndrome or the female will be a carrier for Christianson Syndrome. This very rare genetic mutation is even more rare if a female is born with Christianson Syndrome because that female would have to have the same mutation on both X chromosomes. As impossible as that sounds, I have heard of one such case.

Thatcher playing with his service dog, Saul.

Now, back to how this new diagnosis has changed us, maybe for the better. Thatcher, of course, is still the same Thatcher that his family and friends all know and love, but now we know so much more about how his new diagnosis effects him. For example, in reading up on Christianson Syndrome and meeting with the geneticists at Cincinnati Children’s Hospital, I have found that the odd type of absent seizures that Thatcher’s very first neurologist described as “fascinating” are caused by Christianson Syndrome. I have also discovered that the reason why Thatcher has not been able to walk long distances, like through a grocery store for more than a very short trip is because of… you guessed it: Christianson Syndrome. So, when I see judging eyes as I push my child in his transport chair when he appears that he can actually walk, I can feel a bit of vindication in knowing that I am actually doing what Thatcher needs me to do because he physically cannot walk through the entire store or the whole zoo without getting extremely fatigued to the point of laying down on the ground and refusing to move.

Thatcher and his service dog, Saul at a future planning workshop.

Knowing that I am vindicated in doing everything I can to help Thatcher makes me feel good, but knowing that this rare genetic mutation is regressive and degenerative puts me on edge for what this will mean for Thatcher’s future and whether or not all of my previous planning for him will do much good. I hope that his particular variant (c.2 T>A p.M1?) of this gene mutation will mean that he won’t regress as much as some others, won’t have more trouble with his epilepsy than he already does, won’t be unable to do some things for himself, as he does now. My hope is that by keeping up with his intensive therapies and helping him as much as I can, in the best way that I know, that he can still be the best Thatcher he can be, whatever that means.

Thatcher with his dad, Donnie.

Thatcher is so unique, as am I, a carrier who shows some very mild symptoms in the form of dyslexia, slow reading speed, auditory processing issues, daily pain in every joint, and other heath issues that I have never really felt a sense of fitting in with any one particular group.

Thatcher and myself at The Silly Axe Cafe in Louisville, KY. His service dog, Saul is under the table (not pictured).

I am not sure Thatcher has felt that sense of fitting in either, only to a more extreme sense. I feel that we don’t fit in with the neurodiverse because what we actually have is something that affects more than just our brain, but our entire being. Perhaps we don’t fit in as much with the Autism community either because though I have made some very powerful connections with many wonderful people, Thatcher and myself are different than those with Autism. Of course, Autism is a spectrum and everyone on that spectrum is different, but I haven’t really felt like we fit in well with those who are more able to do for themselves or those who are less able to do for themselves. That being said, I have said for many years now that what caused Thatcher’s Autism is genetic and that Autism is actually a spectrum of many different disorders, many of which have yet to be discovered. Well, in 2012, one of those disorders finally had a name and on September 13, 2019, Thatcher was diagnosed with it.

Thatcher with Dr. MyraBeth Bundy, a Professor of Psychology at Eastern Kentucky University just after her Chautauqua lecture on “Autism: The Metamorphosis of a Diagnosis” in 2015.

This isn’t just interesting for Thatcher and his family. It is also interesting for the neurodiversity movement, those who work with and research causes of Autism, and those who have Autism of one form or another. It is possible that it vindicates those who have said that their child’s Autism was caused by an injury at birth or within the first year of life as well since this could mean that these causes could still be out there, undiscovered. And then, what will it mean for those with Autism if every last type is given a name? I don’t expect that to happen in my lifetime, however, I didn’t expect Thatcher to have any cause found for his Autism symptoms in my lifetime either, so who knows how much science will advance in the next 10 years. This type of research could advance as quickly as our computer processors did from the 1980s until now or I could be right about this not happening in my lifetime or even ever. Some people might not even want to find a cause for their Autism symptoms and that is their right and their choice, but for now, I am grateful for the vindication, but more importantly to be able to hone in on a better way to treat Thatcher’s disabilities as the world changes around us. For now, we will continue to do what we have always done and keep trudging through finding exactly what makes Thatcher’s life the best life possible because he is worth every minute and all of the energy I can muster.

Thatcher bonding with his service dog, Saul while his dad, Donnie drives (not pictured) and I sit in the passenger seat snapping photos (also not pictured).

So much life

So much has happened this year. So much that I cannot publicly write about and so much that I can. I feel like I have helped some friends and some family out of some tight jams. Perhaps I let some down, too. I feel like those friends and family have kept me sane for the moment. I have tried so hard to take care of myself in order to take care of my wonderful son. He keeps me going, and keeps me young, as does my wonderful husband. I have much to be thankful for, no matter what is going on. I want so much to feel like writing as much as I felt like writing years ago. It hasn’t been easy, though. I have thought about what I would write, thought about how to word things, gone over what I have said to people a million times. I guess nothing in this life is really easy. I type, I delete. I type again. Where will I be a year from now? I have no idea, but my website just renewed and I am determined to use it. I want so much to start a new writing project that I would love to spend so much time on. I guess all writers go through a rut of not knowing what to write. Maybe life gets the best of us. Life makes us live and we just don’t stop to write for a while, but of course, our love for the written word always brings us back. Maybe this is because writing has truly been our oldest friend. I have been writing since I was a preteen, perhaps how old my son is now. I knew then, so long ago what I wanted to do with my life, but I had no idea how it would really turn out. I just knew that I wanted to write and that thought alone has carried me through my professional life and sometimes my personal life as well. As I type this, I realize that so much has happened this year where I was just living my life and I’d love to share at least the good times with my followers, if I still have any out there waiting for me. Who knows, perhaps I will get some new followers, so I will post some pictures of the past year and perhaps that will get some people interested in this little thing we call life. There is so much I want to say and soon I will know what to say and when, I hope, but for now, I leave you with pictures.

Standing Up

If you are a special needs parent, how many nights do you stay awake wondering about your child’s future or even, their present? The answer is a lot. We special needs parents don’t just fall asleep at night. We crash after a long day of making sure our children have everything they need in this life to be successful to the best of their ability.

Recently, I was in the local news, standing up for my child after an incident at his school. In this instance, my son was refusing to get up off the floor, so a teacher and school nurse dragged him down a hallway, but I was told by the teacher that she had to pick him up instead of what had actually occurred. I’m sure that wasn’t their finest moment. I am also sure that my child got hurt in the process.

My son recently started going to a new school. I insisted that he be moved to middle school on time to prevent incidents like these from continuing to occur because he’d been hurt before. But, alas, as a parent of a non-verbal child, these things do occur. They shouldn’t and I believe that if more support were provided by the district officials and if there were cameras in all schools and all classrooms, these instances would not occur.

After going to the media, I was surprised to learn that the teacher involved was dismissed. I still don’t know what happened with the school nurse who was also involved. I knew that the teacher had been put on administrative leave, but I didn’t know that she was dismissed until after I read one of the articles that was posted by a local media station where I spoke up and called for better staff and teacher training and cameras in every school and every classroom.

Reading and watching the video of this story was how I was able to find out about the teacher’s dismissal and I find it tragic that not only was my child hurt, but a teacher who didn’t have the district support she needed was allowed to make this mistake in the first place that cost her a job and possibly a career. I definitely want to make it clear that while I am appalled that this could happen and while I do not agree with the decision of the teacher and school nurse that day, I also know that this situation could have been prevented. My son could have been unharmed if the teacher had had better training in what to do in such an instance as this.

Let me also note again that this is not the first time my child has been hurt at school in the school district he is in. It is just the first time at this school. The difference was that this incident was caught on camera and the principal of the school took the initiative to keep my child safe in the future. In this instance, a full investigation is taking place (it isn’t even over yet), but in the times that my son was hurt before, nothing was done. The teachers stayed until they finally moved on to other schools. The principal at that school was dismissed over a completely unrelated incident and perhaps things have gotten better for special education students at the previous school, but I really don’t know if they have or not.

The first instance of my child being hurt was the day that he fell and broke his arm at school.


The picture on the left is the x-ray that shows both the ulna and radius bones clearly broken. The picture on the right is my son at the hospital the day he broke his arm. When my husband went to pick him up from school that day, he noticed that our son was not moving his right arm, was holding it, and instantly, my husband knew something was wrong. The para-educator at the time told my husband that my son fell on the playground, that he had been holding his arm like that all afternoon, and that he was moody all afternoon. That fall happened three hours before my husband picked our son up from school. That’s three hours of bone pain without pain medication or medical treatment of any kind because no one knew what to do at the school and they didn’t call his parents to inform us that he had even fallen, despite us having access to three phones that day and plenty of time to come and tend to our child.

Now, I don’t expect the average person to know this, but children with Autism, like our child often experience pain differently than a neuro-typically developing child, but those who work with children with Autism should know that fact since it is well documented in current research. Instead, as my husband took our son to the ER for treatment, I was being lied to by the principal of the school at the time about what had actually occurred. Of course, I was mad when this happened and who wouldn’t be, so I called the school district office and demanded to know why my husband and I never received so much as a phone call. I was told that the principal would call me and she did. She called to me and proceeded to lie to me about what had happened, stating that he didn’t fall on the playground, but that he fell at the end of the day, but then, why would the para-educator tell my husband something different? It was definitely a poor attempt to cover up responsibility on the school’s part. There was no incident report, despite my requesting one. There was nothing. We hired a lawyer that day and have been working to challenge the school district to change and provide better staff and teacher training since that day. At the time, my son was in second grade. He is now in sixth grade.

After this incident, we didn’t have any issues for a while, but alas, our non-verbal children who cannot speak out for themselves will always have something occurring so long as there is no one to protect them.

This was taken the morning following an incident at school. I was told that at the time, my son was having a meltdown in the cafeteria and that the crisis team had to come and get him off the floor. Again, there was no incident report in this case. I wasn’t even told that my son had a meltdown until after I saw these marks. This happened in December of last year at my son’s previous school and I was only told about the incident the following day when I talked to my son’s teacher about how marks on my child was not acceptable and I didn’t know what happened, but there should have been no reason to leave marks. I was later told that my son probably had sensitive skin and that is why I found clear thumb print marks on his arm pits.

These were taken after my husband picked up our son from school one day. We had been told that he fell and that he scratched his head a little bit. It was seen as “not that big of a deal” to school staff, but obviously needed to be checked out since it was a pump knot on our son’s head. Keep in mind, again, that he has Autism, he is non-verbal, and he has other conditions (epilepsy and celiac) that the school was aware of at the time. Due to his epilepsy, this could have been much more that just “a scratch” for him, as we were told.

A year before that incident, my son was bit at school. I found out that he was bit at school later that day when I got home from work. My mother-in-law picked up our son from school where they informed her that he had been bit. Again, my husband and I did not receive a phone call.

I do realize that kids get hurt at school, but to not call parents and let them make medical decisions for their medically fragile children is just unacceptable. In all of the previous incidents, nothing was done. I had to demand incident reports that I never received. I only actually have a copy of one incident report because I sent my son’s state waiver case manager to obtain a copy of the report after I was initially denied access to the report.

These are issues that other parents in many other school districts face as well. It’s not just the school district where we are, which is the second largest district in our state and probably the very reason why people are afraid to stand up for our children.

But I am not afraid. I have been afraid, having suffered childhood trauma. I was that child who couldn’t speak for myself. I am now a survivor of that trauma and I won’t back down. I won’t be bullied into believing that I fucked up someone else’s life by protecting my child and trying to make public school a better place for our children. I don’t want to have to take my child out of public school where he is making friends and could be thriving, if only staff were better prepared to handle an incident such as the one that occurred on September 14, 2018. In all honesty, when the teacher and nurse made the decision to drag my child down a hallway, regardless of their intentions, which I honestly don’t believe were ill-willed, they fucked up their own lives and I am sorry that any of it happened, but I will protect my child who cannot speak for himself and all the other children like him.

If that is something that disturbs you (I have noticed the dirty looks I am getting from some of school staff and other parents who liked this teacher lately), then you are part of the problem.

These issues don’t just simply go away. Our children aren’t just hurt physically by them. Our children change. They lose their trust of adults meant to protect them. They over react to pain just so people know that the pain exists at all, which was the case with my son after his broken arm. They go on through life genuinely believing that no one can prevent these incidents from occurring and in some cases we can’t, but often, that isn’t the case. Some of these things can be prevented with better staff training and when things can’t be prevented, our children should be able to trust that their teachers know what to do if they are accidentally hurt so that they don’t spend several hours in pain without medical treatment.

Now, in case you are wondering, am I mad at the teacher and the nurse who dragged my child. No. I am not. I am mad at the district that failed them by not providing adequate training. However, I mad that this action was somehow deemed appropriate in this instance by the teacher and school nurse and it took my going to the local sheriff’s office and a good principal to create any change in the pattern of what has been happening to my son for years. Each time I spoke out and I won’t hesitate to speak out again. If those involved are mad at me because people lost their jobs, let them be mad. I don’t care if they are mad. I care that children are safe in our public schools and I will stand by teachers who do what is right in caring for our children, but I will not sit by while my son is continually hurt and say nothing due to fear of him being hurt again. Retaliation will get those involved in things like this nowhere. Hate me, disagree, I am okay with that, so long as my son can safely go to school and learn in an environment that protects him and does what is right.

We Bought a House

That’s right. We bought a house and this is the first time that I have even slowed down long enough to post to the blog without being extremely exhausted or sick. And to top it off, I haven’t really stopped to be stopping. I am at an Autism Society meeting and this is where I finally get a rest. My husband, on the other hand, has so much energy that I can’t keep up, or maybe it isn’t energy, but drive to get everything the way we want it. We are finally able to have a home to call our own and to do with what we want, but like any older house (built in 1986), it isn’t without it’s problems.

The house we ended up getting after starting to put in an offer on one, but quickly changing our mind due to location in a bad neighborhood and then putting in an offer on one in another city, seems to be the perfect house for us. It has four bedrooms, two and a half baths, a fenced-in backyard, extra room in the basement, and a one car garage. It honestly is a cute little house and Thatcher and Saul are making themselves right at home. My husband and I, on the other hand, are having a hard time with the stress of not being able to find our things and things we need still being packed. That will be a memory soon, but right now, it’s how we are living. That being said, a lot of our furniture is already in place, thanks to my husband. After a week of using two dorm fridges of different sizes and not really having the space in the kitchen to cook, we have brand new, stainless steel appliances that are so nice. We were never able to have such nice things living in an apartment. We also didn’t have a yard of any type where Thatcher and Saul could play without having to have restrictions on how far they could go.

There have also been other things going on that have made our move take more time to complete. For example, when we first moved to the city we are now in, we didn’t really have any kind of obligations. Thatcher wasn’t yet in school and we really didn’t know anyone. It was also December, which meant only family obligations. Now, Thatcher is in school, I am on the board for our local chapter of Autism Society, I am also volunteering to tutor one day a week, my husband teaches, and I provide community living support services to my son. He also has other therapies that he attends and there are meetings with the school. We are beginning to introduce Saul into the school environment beginning with one hour a day. And then there is my family and my family friends who have been so wonderful in helping us get out of the apartment and into the new house. I don’t think near as much would have gotten finished without them and my husband who has worked so hard to make everything perfect in our new house.

I absolutely love living in a house and am having a little trouble adjusting to not having to include an apartment number or letter since I spent more than the last decade doing so. But I love having this issue. I love that Thatcher and Saul are finally enjoying so much more space. I think that once everything is done and we can just go back to relaxing in the evening, most of the time, Donnie and I will enjoy it as much as Thatcher and Saul are already enjoying it.

Genealogy and Diarrhea

Saul has been home now for 53 days and we are still dealing with doggie diarrhea. We have called the vet and tried Imodium. We have gone to the vet and after spending $200, we were sent home with antibiotics and probiotics.The Imodium worked, until he wasn’t taking it. The antibiotics and probiotics worked, until he wasn’t taking it. Another call to the vet and an ultrasound would cost $325.


We seriously need to invest in “pet” insurance, stat. (*Note: Saul is not a pet. He is a service dog. There is a difference. Ask me about it if you want). So, yeah, we have had diarrhea and then normal looking poop and then diarrhea again. Saul is still playful, except for that one morning that he didn’t feel like eating, which is so not like him. He was obviously sick at that time and blood work came back showing elevated white blood cell count.


Now he is acting like his playful self again, but still has diarrhea. My solution? Try putting him back on the probiotic. He might just need a probiotic for the rest of his life and I am okay with that. $50 at the vet’s office and the same, exact stuff on is $30. Yup, we’ll go with for that. The only other recommendation from the vet is to change Saul’s food. That won’t work since Saul has to be on a gluten free diet to keep Thatcher and me, who both have Celiac, healthy. Also, this wasn’t an issue in Ohio and Saul had been on the new food for a month before we got there (we sent some to 4 Paws). So, yeah, not the food. But maybe too much peanut butter and Powerbites (those are his regular treat). We cut out the Powerbites and replaced regular treats with kibble. Peanut butter is given in very small amounts and not as often. Hopefully, that will help. If not, it’s back to the vet for a $325 test.


*This is Saul trying to figure out how to get all three nylabones into his mouth at the same time.

Can we write this stuff off on our taxes next year? I don’t know, but I am definitely going to find out. So, yeah, my life is full of poop. Doggie diarrhea and wiping my 10 year old’s bottom. That is my life. I’m not mad or resentful. I love my life and wouldn’t have it any other way, but man, I sure hope we can get Saul having some normal poop soon because if it’s just poop and not also doggie diarrhea, I can handle it much better.


As for the genealogy portion of this post, I am working on a massive genealogy project in an attempt to better understand the genetic factors of Autism, Epilepsy, and Celiac, all of which have genetic factors, in Thatcher. So, recently I made an interesting discovery in my family. My grandmother grew up in the backwoods of Kentucky in Breathitt County near Troublesome Creek and some of her relatives turned out to have the last name Fugate. If you don’t know what that means, let me explain it. The Blue Fugates of Kentucky or of Troublesome Creek were a family with a genetic blood disorder called Methemoglobinemia or Met-H. It has been documented that a man from France named Martin Fugate immigrated to the region and married a woman there named Elizabeth Smith. Martin Fugate was blue and of their seven children, three of them were also blue. Being that they were in the backwoods of Kentucky with no real way to get out of the area, they married people that were around where they lived. Generations of this family inbred several times due to their circumstances. You married the people you met and if you didn’t meet anyone that wasn’t your cousin, you married your cousin. This was just the way it was done. This caused the genetic blood disorder to take hold of the family and there were many blue people living in the area. As technology got better and people could leave the backwoods and spread out, the disease was seen much less since it is caused by two parents both having the recessive gene for the disease. The last known case of this disorder was in 1975 with Benjamin Stacy.

This new knowledge that I acquired by simply watching television cause me to start thinking. If Met-H is genetic and Autism, Epilepsy, and Celiac all have genetic factors, answers might just be hiding in our genealogy. I already know that there are several other genetic disorders running within the family. So, my research began with my maternal grandmother’s family. That has been pretty easy to piece together, but getting the rest isn’t as easy. Two relatives in my maternal grandmother’s family have already done much of the leg work. The real trick will be getting the information that I need on my biological father’s side. I know a little bit, but since we have a cracked (I don’t say broken because I still am able to make contact on occasion) relationship, it is difficult to acquire all of the necessary information. When I take my cemetery trips this spring, it will be impossible to fit in my father’s family since he lives in North Carolina.


It wouldn’t be too far to travel, but we are also purchasing a house, so anywhere we can save money has to be considered. The cemeteries in North Carolina will have to wait. But I can visit the ones that are closer, in the backwoods of Kentucky and in Ohio. Those are easier for me to get to on a budget, so that’s what I will do. The research is interesting, time consuming, and difficult at times, but I know it will be worth it to have this more complete picture. I have already discovered that a great uncle died of Bright’s disease, which is no longer used in medical terminology, but basically means he had kidney failure due to an underlying condition. I don’t know what that underlying condition was, but I do know that it could have been an autoimmune disease, like Celiac. Specifically, in my research another autoimmune disease, Lupus, was mentioned. Did my great uncle have un-diagnosed Lupus? I don’t know, but I am hoping to find out. I plan on asking my grandfather what his brother’s symptoms were like. I realize that opens old wounds and I don’t know if he will be able to answer my questions, but for Thatcher, I must try.


*Please note: We are taking part in two genetic studies. One of them is the Spark study, which is the largest genetic Autism study in the U.S. The research that I am doing could help me better understand the genetic disorders that Thatcher has, but it could also help many other families. I am hoping that the research won’t take too long, but that isn’t how research works. I will keep working on it until it is finished.

The cool thing about researching one’s genealogy, though, is that I am not only stumbling upon medical information, but also information about who my relatives were. I have found some WWII draft cards, one WWI draft card, some WWII registrations, a death certificate, and several handwritten US Census records that all tell me more about my relatives. There is still so much work to be done, but half the battle is the journey to get there.

The Case of the Mysterious Disappearing Poop

It’s been just over a month since Saul came home and we are now settling in much better. We have quickly learned Saul’s signals that he needs to go out and he’s quickly showing us exactly what we need to know. The bonding process between Thatcher and Saul is going so well and even after it was so cold, with snow on the ground that we couldn’t even get out of the house, Saul is still finding his boy like the champ that he is. He doesn’t like when Thatcher leaves to go to school and he loves when we pick Thatcher up. Thatcher will occasionally pet Saul with prompting and even offered to help brush Saul after his weekly bath on Sunday without prompting. Though we did have a bit of trouble with tracking for a bit, we were able to quickly get Saul back on track with practice and plenty of bonding opportunities. We have even had meltdowns, mostly at home, that lasted way less time because Saul is here. It’s been amazing having Saul in our lives and we could never thank the people who made it possible enough.

All this being said, however, it must be stated that dogs are fun. And having a dog in our lives leads to some funny situations. For example, the case of the mysterious disappearing poop. This happened yesterday. Here’s the thing about dog poop… it’s almost always brown. When a dog poops on white snow, it is extremely easy to see and pick up. When dog poop hits the snow, it gets cold and much easier to pick up. But when the snow melts away in Kentucky, all those leaves that fell in the fall that still lie on the ground are brown. The same color as dog poop. Saul’s favorite place to do his business is close to the trees that are in the grassy area behind our apartment. And Saul is having a bit of digestive trouble again. If he eats anything out of the ordinary (i.e. snags a chip from the floor that our son dropped), he gets the nasty poops. But we live in the city and the city ordinance is that we ALWAYS clean up after Saul. *Note: We’d do that even if we lived in the middle of nowhere because we prefer not stepping in doggy poop bombs. Well, I messed up yesterday and I forgot to grab a few paper towels for clean up. I decided that rather than walk all the way up the stairs to grab a few paper towels, I would walk to my car and get some napkins that I keep in the glove box to use. I walked over to the car, grabbed the napkins, walked back, Saul in a heel the whole way and by the time I got to his area, I had lost the poop. That’s right, the poop pile was just gone. Well, not really gone, but camouflaged by the brown leaves littering the grassy area. I stood there for a good five minutes searching the area for that pile of brown slightly runny poop before I found it again, and yes, for the record, I did find it and clean it up, but in that five minutes that seemed to go on forever, it appeared that Saul had magical disappearing poop. And if only that were true. Every dog owners dream would be for their dog to have magical vanishing poops that disappear without the dog eating it. Saul has yet to eat poop, however, he does like to try and eat everything else.

So this is now my reality. Saul is wonderful and Thatcher and Saul get along great. I love that Saul is here for Thatcher and I don’t mind cleaning up after Saul, but now, I will also have the story of Saul’s mysterious disappearing poop.

Saul Came Home for Christmas

There is nothing like the cold, crisp January air and the smell of dog shit to wake you up at 6:00 a.m. That is how I was woken this morning. Of course, I woke to the sound of the alarm clock, but is one truly awake before they’ve smelled the dog’s morning dump? That is a smell that will definitely clear your sinuses. Regardless, I am happy to get up early enough to put on boots, a fleece jacket, a coat, and gloves, let Saul out of his kennel and take him for his morning “walk.” We were finally told that we would be able to pick Saul up from 4 Paws for Ability in Xenia, Ohio on December 21st. Naturally, with the ups and downs of a life lived with a special needs child, plans change at the drop of a hat. We were told only two days before picking up Saul that he’d finally be coming home. Could we meet in Rotary Park in Xenia, Ohio for a “tracking” practice with such short notice. Without knowing for sure, I said that we definitely could and then asked my boss for that day off. I figured, if she said, “no” that I could always just send Donnie and Thatcher who would both be out of school for winter break. Fortunately, though, she said, “yes” and Saul would come home.

We got to Rotary Park thinking that we had this dog thing down. We’d get through these “tracks” (where Saul searches for Thatcher and finds him, in case he should wander off) and we’d practice at home. We’d be just fine. I mean, we were doing well in the hotel, so why not at home?

But there is more to learning how to “dog” than those two weeks of advanced training. There is so much more. For example, how does one “dog proof” their home? Having never had a dog in adulthood and therefore, never being responsible for one, I really didn’t have any idea. I knew that it wasn’t like with a baby where you make sure they can’t open the cabinets, doors, toilets, etc. Dogs really don’t care about your power outlets, so no need for those plastic inserts. But we would soon find out what would be necessary to “dog proof” our home.

And then there is the poop. Oh my god, the poop! How do you read the signs of when your dog has to go? How do you know if he’s sitting next to the door to cool off or when he really needs to go? He’s a highly trained, sophisticated service dog, so there is no way that he will be outside for any length of time beyond play/exercise time. He’s not like a farm dog that can come in and out of the house as he pleases.

So, the first few nights of Saul’s homecoming were highly stressful. Not to mention, he had been given some treats that we had not been giving him, so his tummy wasn’t feeling 100%. We also gave him the wrong kind of Fresh Pet (different flavor than the trainers were using) for our first practice “track” that we did at home, so that exasperated the tummy issues.

And then there was Christmas. We had to get through Christmas. That was really stressful. It was pretty easy to get through that Saturday, December 23rd at my in-law’s house, but there aren’t as many of them as my side of the family. Then on Sunday, we went out to Target and then to Five Guys for some food and Saul and Thatcher did great. The previous Friday, Thatcher, Donnie, and Saul joined me at work for the annual holiday luncheon and then we left in time to take Thatcher to his speech therapy appointment. Thatcher still wasn’t quite sure about having Saul back. I mean, from his perspective, Saul could disappear again, so he was having a tough time when we went to his speech therapy appointment. This, along with issues at the school the previous week caused one of Thatcher’s worst outbursts that he’s ever had during Christmas at my family’s house.

Naturally, with all of this added stress, Donnie took it out on, well, everyone around him when we went to my family’s Christmas. Saul had already had an “accident” in the house that morning and the day before, he didn’t want to follow any of his commands, and we had just put around 25 people into a small, three bedroom house for Christmas dinner, which came later than we expected and only furthered the stress that Donnie, Thatcher, Saul, and I were all feeling.

And boy were we glad when Christmas was over. Even Donnie was happy to be taking down the Christmas tree, though Thatcher loves the lights and thought they should stay just a bit longer. I am glad to have more room in my living room and glad that we are better learning how to keep good control over Saul. We have taken to putting him in his kennel at night because he prefers to wander about the apartment at night to see what he can get into. We tried just letting him sleep in Thatcher’s room, but after he attempted to eat a decorative crystal rock (he didn’t swallow any of it, thank god), that is definitely a thing of the past. Nope, Saul is a good dog, but he’s still a dog. We have learned that the hard way and though I am glad for the wonderfulness he has brought into our lives and most especially Thatcher’s, Saul is still a dog. That is what we have all had to learn, seeing as how, aside from a cat that I had when Donnie and I first met, neither of us have had to care for a furry animal in adulthood.

Missing Saul

We’ve officially been home from our trip to 4 Paws for Ability in Xenia, OH for about a week and a half and it seems like our time there was only a dream.

Of course, I know it wasn’t a dream. No. Saul will come home, but unfortunately, he had to stay back at 4 Paws for more training. We’ve been told that we can pick him up in 3-5 weeks and I just keep counting the days on the calendar. Has it been two weeks yet? No. Darn. In the meantime, we’ve been preparing for Saul’s arrival. We bought him a brand new kennel now that we know the exact size and we made room for it in our little two bedroom apartment.

We have been working endlessly and aggressively on fixing our credit so that we can buy a house with a fenced in backyard and at least a bit more space. I even did some Google searching to find out that has the lowest prices on the expensive gluten free food and dog treats that we have to buy for Saul since Thatcher and I both have Celiac. So, yes, Saul will also have to be gluten free, and really, should dogs be eating gluten containing grains anyway? That is, wheat, rye, barley, and oats when they’ve been grown near fields of the previous three grains? I think I will stick to a gluten free diet for Saul. That’s just what is best for the best dog in the world, right? Even Thatcher misses Saul and tears up a bit when we mention him. I keep telling him not to worry and that Saul will be home soon, but 3-5 weeks seems like forever when you are just waiting. And as far as Christmas spirit goes? Well, I’m not sure we have much at the moment because we just want Saul to be home.

Everywhere we go, we think about where Saul will be in a down and how comfortable will this be for Saul. Will his paws get too hot if we go to the outdoor mall when it’s warmer? Where will Saul go potty if we are here? Would it be safe to bring Saul here? The Grayson family has Saul on the brain and everything that is being done right now in the Grayson household that isn’t a part of the every day routine is with Saul in mind. All of this is being written here and I know there are people out there who say that service dogs have it hard being made to work, but this just isn’t the case. Service dogs and really any dog has a life that is better than any human that I know. I think that the Grayson family wants to make Saul’s life the most perfect life for any service dog, especially since he is giving us something that is priceless. That is, peace of mind when it comes to Thatcher and his very dangerous wandering/elopement behavior. I think that maybe, dogs were put on this earth to show people how truly unworthy they are to have such creatures in our lives.

Thatcher and Saul practice tethering which prevents dangerous wandering/elopement behavior:

Saul finds Thatcher during tracking training:

Dogs Are a Man’s Best Friend: Saul Is Thatcher’s New Best Friend

Three years… That’s how long it took to get from the point of making the decision to get my son, Thatcher, who has Autism, an Autism Assistance Service Dog.

$14,000 was the fundraising goal that we had to meet to get here. We ended up with just over $15,000, meaning that some lucky kiddo out there got a portion of what we fundraised to go into their fundraising total. We don’t know who that lucky kid was, but I’m sure that child’s parents were searching in desperation for a miracle, much like I was when they received that little bit of extra funds.

Finally, the day came yesterday when Thatcher finally got to meet his new service dog, Saul.


A lot has changed in three years time, though. When I initially signed the papers for Thatcher to get a service dog to help with his elopement (a very dangerous behavior found in around half of all children with Autism), we didn’t know that Thatcher had epilepsy. I had my suspicions, but we weren’t sure yet. We also didn’t know that I, or Thatcher have Celiac, which is an autoimmune disease for which there is no cure and the only current treatment is a strictly gluten free diet.

The first year of fundraising was practically non-existent. I really didn’t know what I was doing, which direction to go in, or how to do fundraising of any kind. I was so busy with Thatcher that I pushed things aside a bit, but Thatcher elopes, meaning that he has been known to run away from his parents in a public place or just wander away. When I first started the process, Thatcher bolted away a lot. Now, after years of ABA (behavior) therapy, he doesn’t do that as much, but he still, on occasion and when overwhelmed will still bolt. This is especially true if he sees an escalator, even though he used to love riding on them. Still, though, because the behavior is still so common and Thatcher does still wander off when he thinks no one is paying attention, I decided to continue on the process of getting him Autism Assistance Service Dog from 4 Paws for Ability, Inc. that will be trained in tethering, tracking, and behavior interruption. So, here we are, now in a tracking class in Xenia, Ohio, staying at a Homewood Suites, and continuing our journey.

Thatcher has been talking about Saul on random occasions all week prior to us coming here. We have been told that we will definitely see some 4 Paws magic, but to be honest, just the look on Thatcher’s face yesterday was magical.