About 8 months ago, I had the kids sitting down for dinner at our dining table. The weather was beautiful, so I had cranked open the windows to let in some fresh air. Barry was still at work, so I sat with my 3 little angels and set their little plates in front of them. I was working towards the all-important family dinner that so many parenting experts recommend. I imagined the girls telling me all about their day while everyone enjoyed a peaceful well-balanced meal. Unfortunately, my plan did not work out.
Gray, at that time, was very resistant to sitting at the table while he ate. He wanted to carry his food around and eat while he jumped all over the house and the living room furniture. In an effort to carry over the goals from his behavioral therapy, I decided that I would not let Gray get up from the table while dinner was in progress. This was infuriating to him. He started throwing a huge tantrum and flailed around in his chair. That’s when Lena got upset. So, I turned on the TV for her in an effort to distract her from her raging brother. That’s when Zoe got upset. She started complaining that Lena always got to watch her baby shows and I should look for a show that they both could enjoy. Of course, I could not browse around the TV guide right then because Gray had taken his tantrum to the floor. He had slid off of his chair and was writhing around on the floor like he was possessed. When I scooped him up to put him back in his chair, he swept his entire plate of food off the table and sent chicken nuggets scattering across the room. I bent down to pick up the food while Gray screamed and pulled my hair. As I was lifting my head to put everything back on the table, I saw my next door neighbor’s face appear in the open window next to the table.
“Are you okay in there?”
I couldn’t help but feel amused at the idea of what our little episode must have sounded like from his backyard. Gray was screaming, the girls were fighting, Bella was eating Gray’s dinner off of the floor and my hair was puffed up on the side of my head where Gray had pulled it from my pony tail. I just smiled sweetly and said, “Well, of course everything is okay in here. This is just dinner at my house.”
He shook his head and said, “If that was dinner at MY house, I would be a raging alcoholic.” We both laughed and then we both went back to our respective realities.
Of course, stories like that and others that I have posted here on the blog lead many people to tell me, “I don’t know how you do it!” My response is generally, “I don’t really think I have an alternative.” But, of course, that is not what people mean. Often people will clarify their intent by saying, “I know you don’t have an alternative, but you always seem so happy. I don’t know if I could handle your situation and still be cheerful.”
One of my close friends called me the other day to say that she was reading a review of a play in the NY Times and a quote from the play made her think of me. I don’t remember the exact wording of the quote, but it was something like, “A cheerful nature is a ruthless thing.” I never thought about it that way, but I have to say that I agree. It is my basic nature to be cheerful and seek happiness and peace. I have never been comfortable dwelling on painful or depressing thoughts. I do not understand how worry, anxiety or doomsday predictions accomplish anything for anyone. When I stop and think about it, I guess I spend the better part of my time working towards happiness and peace for myself and everyone around me. I do it for myself, my family, the patients I have worked with and, honestly, anyone who enters my orbit. I know that might sound unbelievable, but I honestly don’t know any other way to be.
This is not to say that I spend my life eternally happy. I certainly get angry or worried or frustrated to the point of tears, but as soon as those feelings take hold of me, I am on a mission to solve the problem — either by actually solving it, or by changing my perspective. I accept the fact that Gray has autism, but it does not dampen my resolve to make life happy and peaceful for him and our family. After telling the story about Gray’s little dinner episode to his behavioral therapist, we set a goal to make sure that he learns to sit at the table during meal times. It took a few months, but now he actually enjoys sitting at the table when the whole family is together. Likewise, when it got too difficult to go out in public with my crazy kid, we just tied him to a dog and carried on! (I pray that anyone reading this has read my other posts and knows that there was a little more to the solution than that, but in the interest of making my point, I will go with a drastic understatement.)
I also try to take lessons from my yoga practice. In yoga, we take positions that are uncomfortable and exhausting. We often hold those positions for long periods of time. During those trying moments, we are encouraged to breathe and observe how we are feeling. Yes, the discomfort can sometimes cause feelings of panic or a need to escape, but the important thing is to recognize that the position we are in is only transient. We may be in an unpleasant position right now, but it will end. It may end because of the graceful exit we have learned, or it may end as we fall to the floor out of balance and out of breath. In the meantime, we are building strength and flexibility so that the next time we are in that position, it will be a little easier. The same is true in life. Breathe, observe…keep calm and carry on!
Or, you could try these options!
Today, we took Zoe to sleep-away camp. This is her first time and she decided to jump right in. She will be gone for 24 days. When I tell people this, I always get a surprised, “Wow, that is a long time! Is she going with friends?” The answer is no. She did not know of any friends going to camp…and that made the idea even more thrilling for her. She was enticed by the idea of going somewhere new where she could reinvent herself as she likes.
When we were filling out the camper information forms a few weeks ago, there was a section where the camper had to answer some questions. When asked what she most looked forward to at camp, she replied, “some time away from my crazy house and a chance to meet new friends.” The answer was a little surprising to me and it made me feel a bit sad. I have always worried that there will be some negative impact of having a brother like Gray. She is right, this is a crazy house. Most kids are taught not to tolerate physical abuse, but my girls are regularly pinched, slapped, or have their hair pulled. When your 9-year-old can casually step into the shower and then call out, “Mom, there is poop in the shower. Could you clean it up before I get in, please?” It makes you wonder how this bizarre life will affect her. Of course, Barry and I do our best to give Zoe lots of one-on-one time. We work hard to make life as normal as possible for both of the girls, but the fact remains: our life is not normal.
I am so happy to send her to camp where she can escape Crazy Town for a little while. She deserves the chance to live in a bunk with girls her age and do normal camp things. She deserves to spend some time just focusing on herself and her own social growth without having to make concessions for her younger siblings.
Surprisingly, she was remarkably calm on our drive to camp. Usually, she fills the space with nervous chatter when she is going into an uncertain situation. The subjects just run into one another and she can talk on and on. This morning, she just played video games on the iPad, made jokes, and enjoyed the sunflower fields that passed. Upon arrival, she happily unloaded the car and went through all of the check-in stops with us. When we got to the bunk, the counselors were waiting with friendly perky greetings. As I started unpacking her bags, Zoe made her way around the bunk and started introducing herself to the girls who had already arrived. I had to coax her off of a new friend’s bunk bed just to come put things away so that she would know where to find her things. After unpacking, the three of us went to the mess hall for lunch. We were just finishing up when one of the counselors announced that a new parent orientation meeting was about to begin in the adjoining room. I said, “Well, I guess we need to finish up and head in there.” Zoe replied, “No thanks. That meeting sounds boring. I’m ready to head back to my bunk.” I explained that we did not have time to walk her back before the meeting started. She replied nonchalantly, “That’s fine. I’ll just catch up with you after the meeting. I’ll find my way back. It’s no problem.” And then she turned and skipped out of the dining hall. Just like that, she had grown up.
I guess one of the benefits of living in Crazy Town is that the normal world becomes much less intimidating.
When we came back to her cabin after our meeting, I noticed that Zoe was speaking with a girl in her group that had forearm crutches by her bed. The counselor announced that everyone should get ready to go swimming, so Zoe hopped up to get her bathing suit. I asked her about the girl she had been talking to. She told me the girl’s name and said, she has trouble walking, but she is really nice. On our way out, I spotted one of the camper care specialists who had been introduced to us in our new parent orientation. This camper care specialist was designated for the campers with special needs. I went up to her and introduced myself. I told her that I noticed one of her campers was in the bunk with my daughter. She nodded and looked a little concerned as to what I might say next. I told her that Zoe was quite comfortable around people with any kind of disabilities and had already struck up a conversation. I told her that, if she needed to find a camper to help ease any awkwardness in the cabin, Zoe was her girl. In all likelihood, Zoe wouldn’t even see the crutches as an issue at all and she is quick to step in and be an advocate for anyone who might need it. Her face lit up and she told me she was so glad to know that she could count on Zoe.
We were on the road back to Dallas a full hour before I had expected. Her last words before she trotted off to the pool were, “This is already so much fun. I am not nervous at all! I’ll see you in a month. Love you both!” I really thought I would cry when we left, but it just didn’t seem necessary.
I have often said that I feel like I have been well-prepared to take on the job of being Gray’s mother. It is an incredibly difficult job, but I think that many aspects of my personality and my background have lead me to feel like I can take on this challenge. Let me be clear: I do not think that I have this autism-mom thing mastered by any stretch of the imagination. I am constantly questioning if I am doing all that I can for Gray and wondering if there is something I am missing. This is an uncertain lot that I have drawn in life, but at least I feel like I have some good resources to help me make the best decisions I can.
On the flip side, I have often said that I cannot imagine how other parents in my position are able to manage when they do not come from a healthcare background or they have no financial resources or they feel intimidated by authority figures. I have always tried to make myself available as a resource to others who don’t even know where to start when it comes to finding a good therapist or doctor. I have offered advice on navigating insurance companies and disability rights. Of course, the parents that I generally speak with have SOMETHING working in their favor: They might not have a medical background, but they are extremely well-educated in other fields and, therefore, do not feel intimidated in researching options; or they might not have many financial resources, but they are tenacious in getting all that they can from their insurance companies and public services. It is easy for me to give advice when all I need to offer is a little addition to what people are already doing. It is entirely different when I see kids whose parents clearly have almost nothing working in their favor.
During Gray’s first week at his new school, I spent 3 full days in his classroom. Although I was there to train Gray’s teachers with Hope, I also got to know the other kids in the class. There are 6 other kids in the class besides Gray. Of course, I don’t know what any of them do at home after school, but in the classroom, it looked like a few of them were not reaching their full potential. I can say, without hesitation, that at least 3 of those children would be able to use an iPad to communicate at least as well as Gray. So, why didn’t they have iPads, too? Well, there are several factors that must come into play before a kid can own and use an iPad as their very own communication device. First, that kid needs to have access to a device and a person who understands how to instruct him or her on how to use it. Then, that kid needs to be able to work with that instructor for an intensive period of time. Finally, that kid needs someone to provide the device.
Here are the road blocks for the kids in his class that appear to have excellent untapped potential: Of the 7 students in Gray’s class at school, only 1 other child receives any kind of therapy outside of school. In school, therapy services are once a week per kid at most. Employees of any given school district (teacher, therapists, administrators) are restricted from recommending anything for a student that does not directly correlate with their ability to complete their Individualized Education Plan. This is because the district is legally required to supply (pay for) any therapy or device that is recommended by a teacher or therapist. As I have been reminded during all of Gray’s ARD meetings, the school district is required to provide an adequate and appropriate education, but not an optimal one. It is the job of the parents to make up the difference.
Of course, I do not know any of the families of the children in Gray’s class and I can only make my own assumptions about what their lives are like. But, if I were to make those assumptions, I might assume that they do not have many of the advantages and resources that our family has. I suspect that most of those parents have limited financial resources, a language barrier, a cultural barrier, a job that pays by the hour with few benefits and very limited knowledge of the medical field and what it has to offer. That is why I believe these kids do not have communication devices. I think that these parents don’t have any idea where to start and, if they could start, how they would continue with all the therapy and repetition that is required.
So, it was with great trepidation that I decided to speak with the mother of a little girl in Gray’s class. Her understanding of directions, ability to do activities independently and social behavior on the playground all made me think that this kid could express astounding things if she just had the opportunity. The teacher agreed with me, but, as I said before, her ability to share this information is limited. On Thursday afternoon, after 3 days in the classroom, I decided to wait for her mother at carpool pick-up. I had written the name and number for the Callier Center for Communication Disorders on a piece of paper and it was burning a hole in my pocket. I was worried as to how I would be received. The mother does not speak English and, although I speak Spanish pretty well for a white girl, I didn’t know what she would think of me. I had heard that the mother was quite overwhelmed with the care of her daughter and had very limited resources at home.
As the children filed in line to leave the building, I got really nervous. I could imagine someone advising me to leave this woman alone. Who was I to try and tell her what to do with her child? Who was I to offer advice when none was requested? But, then, I thought of someone I really admire. Her name is Brené Brown and she has written books and given many lectures about vulnerability and whole-hearted living. I was privileged to hear her speak in May about her new book, Daring Greatly. She began the lecture with a quote from Theodore Roosevelt:
It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.
This was my moment to dare greatly. This was my moment to decide whether I wanted to enter the arena and try to help this mother or to just stand on the sidelines and be a critic to the failures of our system. I decided to accept the possibility that she might get angry with me or ignore me or complain to the school. When she arrived, the classroom aide introduced me as “the mom of the kid with the dog” and told her that I would like to speak with her. I could see the suspicion on her face. We stepped out into the school yard and I began my unrehearsed speech. I told her that I had been able to observe her daughter over the last few days and I felt that I could see a light in her eyes. I told her that I suspected her daughter was very intelligent and capable of great achievements, if she could just have a way to communicate. I gave her the paper in my pocket and assured her that there were therapists at Callier who speak Spanish and accept Medicaid. I told her what kind of evaluation to ask for and I told her to ask if they might be able to help her find a home-based speech therapist for ongoing support. She smiled a big wide smile and told me that she thought her daughter was intelligent, but she did not know what to do about it or where to start. I pulled out my iPhone and showed her what Gray’s communication program looks like. I wanted her to see all of the subjects that Gray could talk about and I told her that I thought her daughter could do even more. She told me that she would call Callier and set up and appointment. She thanked me for the information and then she left.
I do not know if she will follow up on the advice I gave her. I do not know if she kept that paper or threw it in the nearest trashcan. At a minimum, I hope that I planted a seed of inspiration for her to explore something new that might help her daughter. When faced with the task of fixing our educational system and getting our kids all that they need, it is easy to get overwhelmed and shut down. But, last Thursday, I stepped into the arena to try and chip away at the problem in the best way I know how.
For those of you who don’t know the public school terminology, let me give you a very brief tutorial. When a child is identified as having special needs, they qualify for an Admission, Review and Dismissal (ARD) meeting. During this meeting, all of the professionals who have evaluated your child are present along with the principal of the school, the special education teacher, a general education teacher, a compliance specialist, the parents of the child and any other district members who might want to participate in the meeting. The purpose of the meeting is to generate the child’s Individualized Education Plan (IEP). This document is legally binding along with the minutes of the meeting. The overall goal is to develop an IEP that provides the child with a Free and Appropriate Public Education (FAPE).
Are you bored yet? Well, I can assure you that I was bored and ready to poke my eyes out by the end of Gray’s 2-day twelve-hour ARD meeting last November. The layers of bureaucracy in a public school system are truly astounding and the rote processes that must be followed are mind-numbing. (ex: At the beginning of our ARD to discuss Hope, we had to open the discussion verifying that she was, in fact, a dog and not some other animal.) I felt like it was worth it, though, because Gray’s needs are quite extensive when it comes to the “A” in FAPE. At the end, the ARD committee agreed that Gray would need a one-on-one aide at all times to ensure his safety and to make sure that he is doing productive work during his school day. Of course, in true bureaucratic fashion, we couldn’t just start looking to hire an aide a month or two before his arrival, we had to wait until he was actually enrolled to even open the position to applicants. You see the irony here, right? This is a kid who cannot attend school without and aide, yet one cannot be hired until he begins school.
To remedy this situation, the district agreed to provide Gray with a “crisis aide” for his first 3 weeks of school to assess his need for a permanent aide and then begin the process of hiring someone permanently. This is why I decided to enroll Gray in school with only 2.5 weeks left in the school year. I wanted us to have the summer to run the traps of getting a permanent aide hired. Additionally, in our last ARD meeting discussing Hope, I agreed to come to school with Gray for the first two days to provide training for the teacher and aides regarding handling Hope. So, when I arrived at school last Tuesday for Gray’s first day, I was only a little surprised that the crisis aide was not in the classroom yet.
I spent Tuesday working with Gray’s teacher and classroom aide to show them how Hope would fit into the classroom routines. During my breaks, I left messages for the district’s compliance supervisor and spoke with the school principal. By 10:00am Wednesday, when there was still no aide on the horizon (except me), I started getting upset. After finally speaking with the compliance supervisor and then the principal, it became clear that they were both pointing fingers at each other to assign responsibility for finding the temporary aide. They were sending emails and calling human resources, but no one was actually pulling the trigger on naming a person and telling them to show up to the room. On Thursday morning, when Gray and I arrived, there was still no aide. The teacher told me that she had received a list of substitute aides the night before, but had not checked her emails until very late and had no time to call. She looked exasperated. I went down to the office and spoke with the principal. By this point, I could tell he was growing weary with me. Before I could even ask, he told me that he had not yet located an aide, the teacher could not call substitutes and his secretary was out leaving him with no one to make calls.
“Do you need me to make the calls?” I asked, half-serious.
“Sure. Let me print the list.” He replied and disappeared into his office.
A few minutes later, he returned with four pages of single-spaced names and phone numbers. I looked at the list incredulously. He told me that he didn’t know how current the list was, but that was all we had to work with. I left the building and went to sit in the parking lot to make some calls. Boy, was he right. Almost every number I dialed was either disconnected, a wrong number, or a person who said that they no longer worked as a substitute. After about 20 minutes, I decided to call the DISD attorney who had come to our ARD meeting. I explained the situation to her and she seemed equally baffled by the situation. She assured me that she would make some calls and get things resolved.
I returned to my post as the classroom aide and waited. I am certain that, before Gray enrolled, the teacher and her assistant were running that classroom with great efficiency. But, with Gray and Hope added to the mix, the days were mostly about keeping everyone safe and avoiding problems. There just weren’t enough adults to make the day go smoothly. Around 1pm, the principal showed up and asked to speak with me. He took the list of substitutes from me and told me that his boss was not too happy that I had been in possession of the list. He also informed me that he had located a substitute who would be in the classroom the next morning. It’s funny how things happen when lawyers get involved. It’s a sad statement on our society that people will only act under the threat of legal consequences.
Honestly, I do not know who dropped the ball in this situation or if they thought I might just go away (I can’t imagine that). I only know that, Friday morning, there was an aide in the classroom for Gray. When I picked him up at the end of the day, the teacher was beaming. She said that things had gone very smoothly with the new aide in the room. Gray had spent almost the whole day working on educational goals along with the rest of the class. For the first time, I think both the teacher and I felt like this is really going to work.
G-d bless teachers and their assistants. After spending 3 days among them, I have nothing but respect for the job they do. I was wrecked and desperate for adult conversation at the end of each day. I don’t know where they get the stamina for the job, but my teacher Christmas gifts are about to get a lot better.
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.