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.
Listen to Brené Brown’s TED talk on vulnerability
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.