Tuesday was Gray’s first day of public school. I came with him as part of my agreement with the district to spend 2 days in the classroom training the staff with Hope. I felt a little nervous for things to go well after all the hoopla we had created with the district over allowing Hope to attend school with Gray. I felt nervous about how Gray and Hope would perform in the new environment and I felt nervous about how we would be received by the other students and staff at the school. I was warned that some portion of the staff would likely be angry over Hope’s presence at the school under the category of “different is bad.”
As we walked through the halls and made all of our transitions throughout the day, I was impressed with the calm and friendly way that everyone greeted us. No one seemed upset and the teachers were very quick to remind the children not to touch Hope as we walked by. I mentioned this to Gray’s teacher and she informed me that, at a staff meeting last week, the principal informed everyone about Hope coming to school. He explained her duties and some of the rules associated with her presence. Then, he told the staff that this was going to be the first service dog in all of Dallas Independent School District. The teacher told me that the entire staff burst out in applause. My heart melted a little bit. I felt encouraged by the idea that this school was going to be a supportive place for Gray and Hope. In fact, we went through the first day with relative ease. Gray was in good spirits, for the most part, and seemed comfortable in his new classroom. Hope performed like a complete professional and the teacher and classroom aide seemed confident in their training with her.
Of course, there were a few meltdowns. Gray got upset in the lunchroom and on the playground. I truly do not know what triggered his tantrums, except, I guess the “different is bad” category applies to him as well. During his playground tantrum, he used his iPad to request a trip to the bathroom. I complied and we tethered him to Hope for the trip back inside the building. Gray wailed and cried as we walked across the grass. There were other autism classes outside at the same time and I could see that Gray’s screaming was bothering a few of the students. Just before we reached the building, a very large boy from the 3rd-5th grade class walked calmly up to Gray. He did not speak or look alarmed. I assume that he was coming to comfort Gray or just study him. Suddenly, the kid raised his right arm and backhanded Gray across the face with such force that Gray was swept off his feet. Then, the kid just turned and walked away. All of the adults on the playground (including myself) just stood for a moment and blinked hard at the scene we had just witnessed. Of course, there were many apologies and inquiries as to Gray’s status (he just continued his screaming on the ground – but with better reason now).
I’m actually glad that event happened in my presence. In a strange way, it was a relief to have my kid be the victim instead of the aggressor for once. Karma can be difficult sometimes. Of course, I have made a request that Gray be kept away from that kid whenever he is upset. This won’t be a difficult request to meet since the kid is in another class and grade. And, in the end, Gray was fine. We ended the day with a lovely P.E. class. Gray’s teacher put orange cones around Hope so she wouldn’t get hit with any balls or tricycles in the gym. I think the cones were probably more upsetting to her than the balls and the kids, but it made me very happy to see her considering Hope’s needs so early in our training.
Overall, Day 1 was a success. Does it make me crazy to see a day where my kid gets pummeled as a good day? Perhaps my perspective is a little off.
As I have been rolling this blog post around in my head, I kept trying to think of some clever way to say that we won our battle with the Dallas Independent School District (DISD). I even googled “victory quotes,” but none of them seemed quite appropriate. They all talked about struggle and bloodshed. In truth, there was very little struggle involved in this victory. I think the greatest stressor (for all of the parties involved) was the anticipation of the long contentious fight that loomed over us. But, once we all sat down at the table, it was quite civil.
In a nutshell, the school district had a hard time understanding what Hope would do for Gray. Because they had already agreed to provide Gray with a one-on-one aide, they did not see why a service dog would be necessary for him at school. Additionally, they were very concerned over who would care for Hope during the day. Of course, these were valid concerns that I was happy to address. The problem came when DISD legal became involved. Suddenly, the district’s curiosity and concern looked more confrontational. Fortunately, I had two big advantages: I’m married to a lawyer who has spent the last 15+ years arguing cases in federal court, and another family who received their dog from ASDA fought this exact same battle in federal court in California. We arrived at our first meeting well prepared.
I explained that there are, in fact, things that Hope can do better than any person. When Gray has to transition from one activity or location to the next, he does not understand the explanation or cues that teachers give him. This often results in a meltdown that can last for over an hour. With Hope, a simple snap of his belt into the tether on her service pack is all the information he needs to understand that it is time for him to move on to the next thing. With Hope, he can walk independently (in his mind) while holding onto her handle and no one has to grab him to keep him from running off. Additionally, if a meltdown does occur, just snapping him into his tether and telling him to get up is often all that he needs to snap out of the tantrum and move on to another activity. These things make it easier for everyone to get through the day with less drama and more education. Most importantly, Gray has learned that he does not go anywhere outside of our home unless Hope is with him. He depends on her guidance. If we sent him to school (a large part of his life) without her, we would risk undoing the bond that he has come to rely upon.
I also explained that Hope’s care at school is really quite minimal. She does not need bathroom breaks during the day or meals. She only needs a cup of water at lunchtime and a few treats throughout the day for doing a good job. Ironically, that is much less care than any of the children in the classroom require. The aide or teacher who is working with Gray only needs to know about 10 commands and how to hold Hope’s leash. Granted, there is training that I need to provide, but the actual skills are minimal.
At the end of our first meeting, the teachers and the principal all agreed that having Hope at school with Gray would not be a problem. In fact, they stated that they were excited to welcome her to the school. That was the point when the attorney for the district let us all know that teachers and the principal were expressing opinions that were in violation of district policy. We had to call a recess so that the district could take time to review the federal case we showed them and consider changing their policy. When we reconvened a week later to hear the district’s decision, Barry and I were both prepared to hear a “no.” Barry was ready to file suit and I was ready to call the television networks. We were delighted when the attorney surprised us by saying that they considered our request to be a “reasonable accommodation” and they were ready to allow Hope to come to school.
I am pleased that the fight was so short and civilized. I am humbled by the teachers and principal who were willing to risk their jobs by speaking up for something they believed in. One of Gray’s therapists told me that she was glad it was our family that had to go through this. I agree. I suspect that many other families would have been intimidated or overwhelmed at the prospect of legal action. I know that other families may have given up without a fight. That is why we were ready for one. I am proud to say that, starting tomorrow, DISD will have its first service dog attending school. Now, the doors will be open for the next family that finds themselves on a path similar to ours.
“Victory belongs to the most persevering” – Napoleon Bonaparte
Let me give an evolution of my shopping trips with Gray to the grocery store. When Gray was younger, he was an excellent grocery store companion. It was one of the few places where we could really bond and enjoy each other. With him sitting in the grocery cart, we could face each other as I pushed around the store. We had a great time making faces at each other, and I would sing songs to him while he grinned and threw his arms around my neck. We both enjoyed going to stores with lots of samples and we could make a whole lunch out of moving through the aisles. Around the time that Gray turned 4, I noticed that he started reaching for items in the store that had brand logos or appearances like items that we kept in our house. I distinctly remember buying Ritz crackers on one grocery trip because I was so thrilled that Gray recognized the box and pointed to them. Gray was equally thrilled that I recognized his request and we both left the store happily stuffing Ritz Crackers in our mouths. By the time he turned 5, Gray began lunging for the items that he recognized instead of just pointing to them. Which brings us up to the last year or so…
Over the last year, Gray has become so excited about going to the grocery store that it now has turned from a pleasant experience together to an unpleasant one. Just pulling into the parking lot is enough to start him squealing and jumping in his car seat. If I even dare to leave him in the car with Barry to dash inside by myself and grab something, I will most certainly return to find Gray having a meltdown in the car over the missed chance to go shopping. One of the last big shopping trips happened the week before I left for my Portland training.
Gray was having a manic day and generally terrorizing everyone at the house. Because I needed leave the house well-stocked before my trip, I valiantly volunteered to take Gray with me to the store and get him out of everyone’s hair for a while. As we pushed up and down the aisles and stopped to gather groceries or wait for deli meat to be sliced, Gray jumped inside the cart with such force that it actually made the cart jump with him. People stared. I made jokes like, “The smoked ham really is phenomenal here!” When I paused on the coffee aisle, Gray lifted a bin lid and scooped up a handful of coffee beans that he scattered across the floor. The best part was when a representative from a wine company stopped us to offer me a sample of their new white wine. I listened as she told me all about how it was a perfect wine for just sitting on the patio and sipping in the afternoon. I paused for a moment to envision a life where I just sat on the patio with a bottle of wine each afternoon. I smiled at Gray. He smiled back. And then he slapped me full-force across the face and laughed like a lunatic. The woman from the wine company was shocked. She just blinked at me for a moment and then she said, “Oh, Honey. You better take two bottles.”
That was about the time I decided that it was time to end our shopping trip. The lines were long at the registers. I held my breath and tried to decide if I should just abandon my cart and make a run for the car. A lady in front of us turned around and smiled. She said that I have a beautiful son. Before I could thank her, Gray whipped off his shoe and threw it at her. More crazy laughter. More jokes and apologies from me.
When Kati and I discussed places in the community where we had difficulties, I told her all about my last trip to the store. She did not seem too surprised. Apparently, this is a common problem for kids with autism. Kati informed me that Gray would no longer be riding in grocery carts at the store. Now, with Hope, he could walk with us like a big boy instead of “contained” and “managed” in a grocery cart. I must admit, this has been one outing that I have avoided. Of all of the brave places that I have ventured with Gray and Hope, the grocery store causes me the most angst. I guess the reason behind that is because the grocery store is a place where both Gray and I have strong needs and they rarely coincide. I do not go to the grocery store to just kill time or entertain myself. When I am in the grocery store, I am on a mission to gather up all of the supplies my family needs in the shortest time possible. Gray, on the other hand is furiously trying to gather all of his favorite snacks and eat them, or he is getting himself so whipped up that he is just looking for the next “exciting” event he can create. So…for all of the preceding reasons, I have dropped that outing from my priority list and chosen to do my shopping when Gray is otherwise occupied.
But, then, last Saturday, Zoe made a good case for a fresh batch of DVD movies. Lena was going to a birthday party for 90 minutes and I did not really have a good plan for entertaining Zoe and Gray. I decided that a little training trip Target would effectively kill 2 birds with one stone. Because it was an unplanned trip, I was able to stifle my urge to be productive. I informed Zoe that we needed to stay focused on the task at hand: get the movies and do not let Gray ride in a cart. She was ready to assist. As we walked through the parking lot, I told Gray that we would be walking in the store. I told him that we would not be getting a grocery cart. When we walked in the store, Gray tried to make a beeline for the stacked up grocery carts. Hope held steady and Zoe took Gray’s left hand to guide him away. After we cleared the front entrance, Gray had an easier time walking with us. Then, we passed our first person who was pushing a cart. He immediately latched onto the side of that cart and started to throw a leg over. I decided to keep my attention focused on Gray and I gave a little tug on his belt. I told him that we were not using the cart and he needed to get his handle (on Hope’s pack). He immediately climbed down and took his handle like he was hypnotized and had no control over his actions once I said that magic “handle” word. This same scenario happened a few more times while we crossed the store to get to the movie section. I ignored the startled looks of the cart owners who were so confused by a boy and his dog commandeering their cart. I considered their bewilderment a necessary casualty as I held fast to Gray’s behavioral plan.
Thankfully, there was only one aisle of movies for families. As Zoe browsed, Gray and Hope sat on the floor. When it was time to take our purchases to the checkout line, I gave Gray a DVD to carry so that his left hand would not be available to grab people or their carts. Twenty minutes after entering the store, we were leaving with all goals accomplished. I felt like we were making baby steps in our shopping skills and Zoe was thrilled to have some fresh movies to watch. I am so grateful to Hope for the calm alternative that she provides Gray. There is no running in the store. There is no jumping in a cart. There is no grabbing items off of shelves. With the simple phrase, “Get your handle,” Gray has no choice but to calm himself and walk with me.
Friday night was one of those glorious nights when I made myself go to bed early, slept all night with no children waking me up and awoke at 7:30am feeling like a Disney princess after 9 hours of sleep. I felt so calm and pleased on Saturday morning as I stretched in bed…until I heard the laughing and squeals coming out of Gray’s bedroom. That is when my stomach dropped.
I leapt out of bed and made my way to his side of the house. By the time I was 10 feet from his room, I knew by the cartoon-like waves of stink seeping from behind his door that there was a “pooptastrophe” on the other side. I bravely opened the door to witness the scene that I can only liken to a bloody murder scene except with poop. Gray was standing in the middle of the room smiling with a wild look in his eyes. He was covered in poop along with the walls, the floor, the bed, the blinds, the toy box and the chair that sits next to his windows. Unfortunately, this was not a unique situation. I have had many mornings like this. They have been happening less frequently in the last couple of months (which is probably why I allowed myself to sleep until 7:30), but here we were again.
I have told Barry before, that I think I am a lot like the characters in the movie “Sunshine Cleaning” who start a business cleaning up crime scenes. The first time I encountered a scene like this, I recoiled in horror. I remember standing in the middle of Gray’s room, dumbfounded by idea of how I would even begin to clean up a mess like that. By the second, third and fourth times, I had come up with a reasonable system and I remember thinking to myself, “I have a masters degree and I’m using it to be a poop scrubber!” But, like the girls in “Sunshine Cleaning,” I have developed a system that works thoroughly and efficiently to get Gray and his room clean. I will spare you the details here, but I am happy to share my system with anyone who might find themselves in a similar situation — either with a pooptastrophe or a bloody crime scene.
After I had Gray sequestered in the shower, I started removing items from Gray’s room to be hosed off outside. I took the chair and its cushion, the blinds off of three windows and a very unfortunate soccer ball out the front door. I laid them out on the front lawn and I returned inside to strip Gray’s bed. Because there were no blinds on the windows of his room, I looked out onto the street as I pulled sheets and blankets off of the bed. I wondered why there were so many cars on our usually-quiet street. And then I remembered. This was the day of the neighborhood garage sale. With the neighborhood association paying for the advertising, many households planned to have their garage sale on this day to maximize buyers. Suddenly, I had an image of some unsuspecting buyers strolling down the street and happening upon Gray’s blinds and furniture on the front lawn. They would walk across the driveway to take a closer look, catch a whiff of the stench wafting out of Gray’s open windows and then they would realize: all of these garage sale items were covered in poop! I dropped the bedding and bounded out of the house in my pajamas to grab the hose and spray everything off as quickly as possible. Then, I tried to arrange the items close to my house to decrease the likelihood that anyone might think I was selling them.
I went back in the house, finished my clean-up, scrubbed my arms up to the elbows and started making coffee and cinnamon rolls for the family. I even made it to yoga by 9:15…just another day on the job for my little biohazard cleaning company.
As a kid, I remember looking forward to field day all year. The games, the popsicles and the prospects of winning ribbons at school were almost too exciting to bear. Last Friday, was field day at Gray’s school. I showed up with my camera ready and an uncertain feeling as to how the day would unfold. I had visions of potato sack races with Hope stuffed into the bottom of a potato sack or Hope being made to run across a field with an egg on her back while the other kids ran with their eggs in a spoon. I also had visions of Gray just laying in the grass crying because he was overwhelmed with the whole thing.
As I have mentioned before, Gray attends a school for kids with learning differences. I can’t comment on what the kids’ differences or diagnoses may be, but I know they are all much higher functioning than my kid. A day like field day really highlighted to me how different Gray’s needs are from the other kids at the school. For them, a special day is fun and exciting in a good way. For Gray, a special day is confusing and exciting in a bad way.
On a typical day, Gray has learned what to expect as far as activities and scheduling go. He has also learned what is expected of him in each of his daily activities. On a special day, all bets are off. On Field Day, Gray did not know what he was supposed to be doing. For short stretches, he could engage in an activity like the obstacle course or the horseshoe toss; but in the wait before and after his turn, he did not know why he was waiting or what would come next. This resulted in him alternating between tantrum and manic crazy violent happiness. Another confusing notion to him was having his mom at school. I think that my presence totally threw him off. He kept asking me to go “bye bye,” and would either pull at me in tears so we could leave or he would squeal and jump and slap me in excitement.
Unfortunately, that was only the first of 3 special Fridays during the month of May. This Friday is Grandparent’s Day. Although I feel a little guilty about throwing a bucket of cold water on all the plans that go into a special day, I think I need to limit “special” for Gray. As I imagine Grandparent’s Day going, Gray would be doubly thrown off and excited to see my parents at his school. Any plans that the teacher might have for showing Gray’s grandparents the kind of work he has been doing would go to waste as the day would be spent trying to calm him down and protect everyone around him from the happy-excited pinches, hair pulls, and slaps that he would undoubtedly deliver.
I know that “special” days are inevitable. There are holidays and vacations every season. And I dread those days. Kids like Gray just do best when life is as predictable as possible. So, I will push aside my guilt over denying my son the possibility of a truly memorable moment in favor of keeping things as routine and calm as possible. I will hope that the teachers and administrators will understand my position and not feel too disappointed that my kid won’t participate in the special activities that they have planned. Tomorrow, I will send him to school like it is a regular day. I won’t tell my parents that they could have come because I know that everyone would go to a lot of trouble only to be let down by the fact that the only thing “special” they would witness is Gray’s very erratic behavior. I will pray that, without his own grandparents present, Gray will not notice the other grandparents and be able to participate in his school day just like he does on every other regular day.
When I was in Portland doing my training with Kati from ASDA, she warned me about situations where I might have to defend my right to bring Hope in all of the places we like to go. I remember thinking that she was a little hyper-sensitive. Of course, I knew that I might have to tell the random grocery clerk or restaurant worker that Hope was a service dog and, therefore, protected by federal law. The shocking thing is that I keep encountering resistance from people who I would otherwise consider to be educated and socially savvy.
The majority of people in the community are incredibly kind and sympathetic and interested the relationship between Gray and Hope. The majority of people are rooting for us. And then there are the people who are not… I am puzzled by these people. I am curious to understand where they are coming from, because, for the life of me, I cannot wrap my brain around what motivates them. We have had two experiences where I have had to fight to get Hope admitted to places where our family frequents. Of course, I was naive in the beginning and assumed that simply everyone would welcome us with open arms, so I was blindsided whenever the opposite reaction occurred. Now, I’m getting better at reading the subtle messages in people’s body language or choice of words that lets me know when there is going to be a problem.
I would like to clarify here: I am not talking about people who are not aware that Hope is a service dog. I am not talking about the restaurant hostess who tells us that she is very sorry, but they do not allow dogs in the restaurant. I am not talking about the security guard at the mall who follows us around until he can get close enough to read the words on her service pack. And, I am not talking about the teacher at Zoe’s school who looked very worried when we all walked in to drop her off. These are all people who truly did not realize what kind of dog Hope is. These are people who have only seen service dogs attached to blind people with sunglasses. The simple solution in all of these scenarios is just an explanation of Hope as a service dog and Gray as the boy she assists. Generally, the conversation stops there.
The people I am talking about are the people who completely understand that my son has severe autism and that Hope is his full-fledged certified service dog. And yet, these people do not want to allow her in their establishment. I don’t know if people have some “oh no! something different must be bad” alarm that goes off in their heads. Perhaps, they just cannot conceive of an animal behaving in the remarkably civilized manner that service dogs do. Or, maybe, they are intolerant or uncomfortable in the presence of people with disabilities and the dog just highlights that situation so that it cannot be ignored. A kid with autism is weird enough to have around, but a kid with autism and a dog is just too much to bear. Honestly, I do not know which answer is correct, but regardless of the reasoning, I will not back down. It is one thing for people to say that they support autism awareness, but I say that people need to be willing to push that boundary into autism acceptance. With the newest numbers finding that 1 in 50 children are diagnosed with autism today, it is time for people to get comfortable with autism and whatever strangeness (or dogs) that might bring.
Tomorrow, Barry and I will be meeting with the school board for our district because someone in the higher levels there does not want Hope to come to school with Gray when he begins next fall. Regardless of the fact that Gray’s future teacher and principal and many other people within the district are excited to see how a service dog can assist a child with autism, there are a few powerful administrators who want to kill that possibility. Fortunately, we have federal law on our side. A family who also received their dog from ASDA had to sue their school district in federal court to allow their son’s service do to attend school with them. They won. I hope that, by presenting their case, the powers-that-be in our school district will quickly fall in line. If not, then I am ready to stand and fight.
On Saturday, Barry and I took the kids to an art festival that we have enjoyed many times over the last several years. The weather was beautiful and I knew we had to get out of the house because Gray was trying to fling open every door and would throw himself to the ground in an angry crying heap each time he discovered the doors were all locked. We had not been to this festival since Gray outgrew his stroller and I was curious to see what new artists might have popped up in our absence. Zoe and Lena were fired up because the kids’ area promised to have some exciting projects. Barry was nervous, but agreed to go under the premise that I promised to buy an extra-large bag of kettle corn.
As we descended on the festival, we split up in the traditional manner: Barry took the girls and I commandeered Gray and Hope. At first, I tried to join Barry in the kids’ area to see if Gray might be interested in any of the activities. When he started grabbing at other people’s food, I knew we needed to move along. We walked over to the kettle corn cart and purchased a very large bag. Gray was excited and kept saying “pa pa pa” as we strolled back to find Barry and the girls. We shared our kettle corn as the girls finished up painting their canvases and went to check on their spots on the pottery wait list. I felt very relaxed with Gray and Hope close by my side when, suddenly, I felt a strong pull on Hope’s tether. I was bewildered and looked around to see what kind of large fish I had hooked on my line. In the crowd of kids, I could not see Gray and I could not imagine where he had gone. Just like a fisherman, I walked my hands down the tether line until I found him at the end. He was standing at the pottery table eating clay. I gave Hope a good pat and said a silent “thank you” prayer. Without her, I would have felt panicked in my inability to find Gray. With her, his retrieval was just a simple fishing expedition. I peeled the clay out of his mouth and we left the kids’ area to walk around in less interactive areas.
We walked up and down the aisles looking at the booths of the various artists. Of course, there was no stopping or shopping, but I reminded myself that that my two typical kids would not allow me to stop or shop either. The difference is that while my typical kids would just whine and complain, Gray would protest by dropping to the ground and wailing. Either way, I set my expectations for a quick tour of the festival and I considered all of the money I saved by being denied a thorough inspection of all the booths.
Gray seemed to be enjoying himself as we maneuvered through the crowd. There were lots of sights, sounds and smells. Then, he started enjoying himself a little too much. As he started jumping and increased his walking pace, I felt nervous that mania was about to rear its ugly head. Within moments of me having that thought, a person who passed us let out a yelp. I immediately looked at Gray and considered the look of glee on his face. His left hand (the one that does not hold Hope’s handle) was up and ready to pinch any poor soul who might wander too close. I struggled to correct him, but I won’t lie: many people were pinched that day. I made a quick turn and started guiding Hope and Gray back to the kids area so that Barry and I could make a plan. On the way, there was a bench where an older man was sitting peacefully. Gray sat down next to him and let out a sigh to show that he was getting tired. He then draped his arm over the man’s lap and leaned into him. “Sorry about that. We are not really good with boundaries,” I explained. The man couldn’t have been nicer and told me that he was happy to have such friendly company. Gray looked very calm, so I let my guard down and sat on his other side. The man asked me about Hope and commented on how pretty she was. Gray stroked the man’s leg and I started apologizing again. The man just looked down at Gray and said, “He’s fine! He’s not doing any harm.” In that moment, Gray and I both made the same realization: that man was wearing glasses. My stomach dropped. With lightening speed, Gray had ripped the glasses off of his bench-mate’s face letting out a squeal of laughter. I quickly unwound his fingers from the glasses and gave them back to the man with deep apologies. We got up to go and that sweet man just laughed and told us to enjoy our day.
It’s unfair really: One of the reasons that ASDA uses labradors, golden retrievers and doodle mixes is because these are friendly-looking breeds. The idea is to attract other people and kids to interact with a child they might otherwise have avoided. This is supposed to encourage socialization and help children with autism get comfortable interacting with others. Instead, Gray uses it as a web to trap his next victim. I am grateful for the kind people who pretend to understand when my clearly disabled and adorable 7-year-old causes harm, but I know we must get this problem fixed soon. I fear that, by the time Gray is a teenager, he will be far less adorable and downright formidable.
I think I will pour another glass of wine while I ponder that dilemma.
His blood had been drawn, I had filled out a book of documents and I had a 5-inch thick folder containing all of his previous medical and therapy records. As our plane landed in Corpus Christi, I let my mind go to the places I had carefully kept at bay: What if this doctor had the answer to Gray’s disorder? What if I had a shot at having a relatively-normal son? What if this treatment actually worked, but it was just so new that it had not had time to go through all of the research and testing that I used as a qualification for all of the other things I did for Gray? I was excited and hopeful and very very vulnerable.
I had arranged for our flight to arrive 3 hours before our appointment time. I didn’t want to risk a flight delay or any other travel problems that could cause us to miss our long-awaited appointment. When our plane arrived as scheduled, I knew I would have to think of some ways to spend our extra time in this unfamiliar town. We got our rental car and made the 50 minute drive to Port Aransas where the doctor had his office. One hour down, two to go. The drive was bleak and the scenery was unimpressive. Port Aransas is a fishing town next to oil refineries. I suspect that there is not one building there over three stories tall. After we burned about 40 minutes in a Dairy Queen (we finally had to leave when Gray became fixated on running into the kitchen), I found our way over to a playground. It was sticky-humid and hot. I pushed Gray on the dilapidated swings and called a girlfriend for emotional support. I was stressed. The combination of eagerness, anxiety and the burden of entertaining Gray in this strange place felt lonely and wrong. I remember telling her that I just could not imagine that “THE ANSWER” was in a place like this. It couldn’t reside among these shirtless retirees with fishing poles. Suddenly, Gray leapt off of his swing and started sprinting for the parking lot next to the playground. I dropped the phone in the grass and ran after him screaming for him to stop. And so he did; right in front of a car that was driving through the parking lot. He just sat down on the ground with no awareness that a car was about to plow him down. I waved and screamed and the driver of the car slammed on his brakes about 3 feet in front of Gray. I snatched Gray up off the ground and dragged him back to my car. When he was securely buckled in the back seat, I went back for my phone where my girlfriend was waiting to hear that disaster had been averted.
With an hour left to burn, I drove around the island and parked my car by a public beach. We were far from any traffic, so I unbuckled Gray and we went for a little walk on the sand. Within 5 minutes, Gray wiggled out of my grip and ran headlong into the surf. I caught him before he actually entered the water, but he threw himself on the ground in the wet sand and let the thin waves wash over his fully-clothed body. When I had scooped him up and we were securely back in our car, I lamented our state of affairs. I had brought a change of clothes for him, but not for me. We showed up at the doctor’s office 30 minutes early. We were both sticky, sandy and disgusting. I did my best to breathe deeply and remind myself that I just needed to get through this day and this appointment. There was never a mother more desperate to find help for her child than I was in that moment.
The doctor and his staff could not have been more kind and helpful. I tried to reserve judgement on the very small-town feel that this tiny clinic in a strip mall radiated. The doctor went over all of Gray’s lab work and completed his examination. At the end of it all, he told me that, while Gray’s symptoms were the same as his other neuro-immune deficient patients, Gray’s lab work did not show the same (or any) abnormalities. The theory behind this treatment approach is that our children have been infected with a virus similar to herpes. This virus had attacked their brains and caused a neuro-immune dysfunction that presents as the disorder we call autism. Gray did not show any viral load in his blood work. He did not show any yeast overgrowth or signs of infection of any kind. This doctor and his clinic were not Gray’s answer. I felt my heart fall. And when the doctor recommended that we try the protocol anyway (the special diet, the anti-yeast medication, the anti-inflammatory medication, and the other medications on the plan), my heart fell even more. I knew that there was nothing this doctor could do or prescribe that would make any difference in Gray. I knew that proceeding down this path would only make me like the other parents that I had judged and pitied.
Over the next few hours as Gray and I made our way back home, I considered my feelings. I had allowed myself to have hope and I had spent time and money and unbelievable energy to pursue it. As I mentally put an “X” in the box next to this possible treatment, I no longer felt judgement or pity for the other families who felt the need to go on a similar search. For us, this was a dead end. For me, it was a stretch beyond my comfort zone of certainty and evidence. I had joined the ranks of parents who are willing to try crazy things for their kids.
So, although this was not our solution, I am glad I gave it a try.
When I worked in an in-patient hospital setting on the brain injury team, I saw a lot of families struggling to make sense of the devastating thing that had happened to their loved one and, by extension, their family. I watched people move through the stages of grief and I watched people get stuck on the idea of finding a way to make this injury go away. I knew families that traveled to foreign countries for treatments that were not available in the U.S. and families who sought advice from alternative medicine advisors here in our country. There were stories of stem cell transplants and hyperbaric chambers and herbs and oils. Of course, all of these treatments and travel expenses cost large sums of money that were not covered by insurance. It was hard to watch these families act in desperation and, at times, turn against the established medical care they were receiving. It was even harder when the patients returned with little or no improvement after their treatments.
When Gray first began receiving services for autism, he was enrolled in a pre-verbal program at the Callier Center for Communication Disorders. This was a preschool-type program for very young children who had not developed language skills.The program lasted for 2 1/2 hours each morning. Many of the families traveled for up to 1 hour to get to the center, and there was an observation room above the classroom, so lots of moms would just go up there and wait/observe while their children were in therapy. Because of the age of the kids enrolled, many of them had not yet received a formal diagnosis or were going through the process and had just been diagnosed with autism or some other developmental delay. This mixture of anxiety-ridden moms with extra time on their hands was a dangerous combination. I am sure that there are women who were in that room who would tell me that it was a fabulous environment for collaboration and support, but to my eyes, it was the same as I had seen before: desperate parents being exploited by “alternative” medical professionals.
These moms would sit in the observation room with their binders of contacts and lab work and diets and supplements and compare notes. The problems I had were these:
None of the contacts were medical doctors with hospital privileges. They were doctors, but they were operating outside of the established medical environment. None of them were in network with any insurance companies. There was only one lab in the country that would process their bloodwork or urine/stool samples. They sold supplements that ran up to $1000 per month that could only be purchased in their offices. And, they did all of this under the premise that the traditional medical field could not be trusted. They claimed that there was a conspiracy among doctors and the pharmaceutical companies that kept the truth about curing autism suppressed.
I took issue with all of this. First, I do not believe that doctors are conspiring with anyone to keep autism from being cured. I have known too many doctors in my life to believe such a ridiculous claim. Doctors go into the medical field to help people. Yes, there are good doctors and bad doctors and ethical ones and unethical ones; but overall, the vast majority are just trying to help. Conversely, these alternative doctors are trying out treatments on patients that have no evidence-based research to support the things they are trying on these kids. That seemed dangerous to me. Second, I am immediately skeptical about any lab work that can only be processed by one lab in the world. Lab work should be an objective measure and any lab should be able to look at anything that is legitimately out-of-whack. Third, the expensive supplements just looked like a money-making scheme to me. Why must they only be bought from the doctor who prescribed them? If a doctor truly believed that a patient had a deficiency of some vitamin or essential nutrient, they could write it down and let the family buy it at a store that sold vitamins, right? So, I concluded, these doctors appear to be exactly what they accuse traditional doctors of: charlatans who take advantage of parents who would do anything for their disabled children.
I spent the next few years keeping my head down among other autism parents. I continued to load Gray up with therapy and I started him on medication that our neurologist prescribed. I did not put him on any special diets or give him any supplements. I took him to a regular allergist for allergy testing and management and I consulted with a licensed dietician (note the word “licensed”) to ensure that his diet had all the nutrients he needed. I did not share my opinions with the other moms unless they asked me. Much like anything else in parenting, I understand that a parent must do whatever they can to feel like they have done everything they can for their child. There is no peace until you feel like you have explored all viable options. I get that, but, in many instances, I would poll therapists in a variety of professions who worked with children like mine and they all reported few to no improvements in the kids that they saw who were participating in alternative treatments.
Then, about a year ago, I read a book that was suggested to me entitled, The Myth of Autism, by Dr. Michael Goldberg. I won’t go into all of the details, but, in a nutshell, Dr. Goldberg proposes the theory that our children are not actually suffering with classic autism, but a neuro-immune dysfunction that is caused by a viral infection. This was interesting to me. He described kids with symptoms that were similar to Gray’s: lots of allergies, digestive problems, eczema, increased susceptibility to upper respiratory infections and bizarre instances of body parts turning red (Gray’s right ear often turned red for no reason). As I looked into this doctor’s practice, I felt relieved to learn that he was in-network with several insurance companies, did not sell any supplements or prescribe any alternative treatments and he only ordered lab work from national lab companies that could be processed anywhere. That made me feel like he had a level of legitimacy. On the flip side, there are only 3 clinics in the country that practice his protocol: his office in L.A., a clinic in New York, and a doctor’s office in Corpus Christi. This part was a little strange to me, but the other factors outweighed my bewilderment and I decided to make an appointment with the office in Corpus Christi. My neurologist was extremely wary of my decision and warned that his methods had no research to back them up. I told her I understood, but I needed to pursue this avenue if only to learn more about it.
Two months later, Gray and I were on a plane for a day trip down to the Gulf Coast.
In the interest of keeping these posts a manageable length, I will continue my story in my next post.
Last Friday was a rare day. Zoe and Lena were out of school and Gray was not. In my anticipation of this monumental event, I spent hours considering the best way to spend this precious time when the girls would have me all to themselves. I savored the thought like I was planning some elaborate vacation and imagined the three of us at a beach or day spa. Of course, with a 9-year-old and a 3-year-old, my options were limited to activities that they would both enjoy. I decided that the most special activity would be a trip to Six Flags. We all have season passes and the weather was perfect and I knew they would both be thrilled with the plan.
After we dropped Gray and Hope off at school, we started our day with a girls breakfast. Over croissants and strawberries, we talked about our plans for the day, excitement for summer and Lena’s plans to get her hair cut like Zoe. Instead of zoning out to movies in the back seat, the girls requested dance music on the radio so we could get revved up for our outing. We were pleased to find a practically empty amusement park with no lines to slow us down as we ran from one ride to the next. The weather was overcast and 75 degrees, so no one complained about being too hot or too cold. After doing such a nice job taking turns on who got to pick the next ride, I granted their wish to commemorate our special day with airbrushed t-shirts. I must admit, as a child of the 80’s, I have always wanted an airbrushed shirt. Unfortunately, they don’t have the kinds with beaded fringe at the sleeves anymore, but I was very pleased with all of our choices.
As we rode the train and the girls reclined on my lap, I made note of how RELAXED I felt. The idea amused me because I know most parents have a hard time feeling relaxed at an amusement park with their kids. I suspect that most parents see it as a labor of love to endure a day like this. Instead, I soaked in their happy little faces and I noted that I was independently enjoying the day. We were just 3 carefree girls who were not at the mercy of Gray’s unpredictable mood swings or limited patience. Even though Hope has allowed us more freedom as a family, taking her and Gray out is still a big project…in a way, I am tethered to the service dog along with Gray. By contrast, a day with these 2 typical kids was a breeze. With my best deep-yoga breath, I soaked in the moment.
We returned home just as Gray was coming in from school. Zoe exclaimed,”Hi Buddy!” Lena ran to give him a hug before laying on top of Hope. Everyone sat down at the table to have a snack and watch some cartoons. After a day on our own, we all felt ready and recharged to reconnect with Gray on his terms.