It is not uncommon for people to send me various newspaper articles or You Tube videos with subjects that pertain to autism. Usually, they are meant to be inspirational or share information about a new treatment option. While these bits of information are nice to receive and show great thoughtfulness on the part of the sender, they rarely give me any information that I find to be new or helpful. So, it was with a sweet smile that I read the email that a close friend sent to me. Her mother had seen a segment on Jon Stewart’s Daily Show and she had asked my friend to send along the information to me. Here is the segment that was on The Daily Show.
After watching that clip, I immediately got on Amazon to order the book. I decided to get the audio version so I could listen to it on my walks with Hope. As Mr. Mitchell so eloquently describes in the forward, we autism parents read a lot of books about autism. The problem is that they are all written by non-autistic people. They are third person observations and what we autism parents REALLY want to hear is a first person experience. The closest thing I have found, until now, is the writings from Dr. Temple Grandin. I know that her work has been very meaningful for many people, but her autism is very different from Gray’s autism. Her words might offer a glimpse into the autism experience, but they never really felt like they aligned with the experience in my home.
Naoki, on the other hand, sounds very much like my son. I could weep at the excitement that comes from getting a glimpse into that boy’s mind. I have tried to remember that the account of a 13-year-old boy who lives in Japan will obviously be different from my 7-year-old in Texas, but it is hard to keep myself from closing my eyes and imagining these writings as Gray’s own thoughts.
The book is written largely in question and answer format. Here are 2 of the questions that had a big impact on me:
Do you prefer to be on your own?
I can’t believe that anyone born as a human being really wants to be left all on their own. What we’re anxious about is that we’re causing trouble for the rest of you, or even getting on your nerves. This is why it’s hard for us to stay around other people. The truth is, we’d love to be with other people. But because things never, ever go right, we end up getting used to being alone. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It’s as if they’re deliberately giving me the cold shoulder.
Why do you get lost so often?
I’ve already mentioned how I dash off as soon as I spot anything interesting. There’s a different reason for why we get lost so often, however; and I think it’s this: We don’t really know where we ought to be. You could tell us that we ought to follow someone else, or hold their hand. But the fact is that, with or without your suggestion, we are still going to lose our way. Simply put, people with autism never ever, feel at ease wherever we are. Because of this, we wander off, or run away in search of some location where we do feel at ease. While we’re on this search, it doesn’t occur to us to consider how or where we’re going to end up. We get swallowed up by the illusion that, unless we can find a place to belong, we are going to be all alone in the world. Then, eventually, we get lost and have to be escorted back to the place where we were at or the person we were with before. But our uneasy unsettled feeling doesn’t go away. I don’t think we’ll ever be able to reach our Shangri-la, however. I know it exists only in the depths of the forest or at the bottom of the deep blue sea.
While there are parts of the book that are just heartbreaking, these 2 answered questions give me great comfort in the way we have adapted our lives and our family to include Gray and his disability. I know I have said it a million times, but this book just proves that what I suspected was true. Gray was difficult in public because he felt the same way as Naoki describes. With Hope, I believe that Gray finally feels at ease. He no longer feels that urge to run off in search of the place where he belongs. He know he belongs with Hope. Because of Hope, Gray is not left alone. Because of her, Gray can be with us whenever we go ANYWHERE and it is not a disaster. It is a joy. It is joyful because he is with us. And, the gratitude shows on his little face when he looks expectantly out of the car window wherever we go.
If you’re still not sure about whether the book is worth reading or not, watch Part 2 of the interview on The Daily Show.
Last Sunday, the weather was beautiful. I spent the whole weekend looking for ways to be outside. On a whim, I decided that we should take the kids to the fair for a few hours. The fair is close to our house, we had no other plans, why not just make an impromptu trip?
Well, last year, I would have told you that the very idea of taking Gray to the fair was utter madness. There would have been no way on the planet that anyone could convince me that it would be at all fun. I know that, at a minimum, I would have a screaming flailing child that I would have to scoop up off of the ground in a crowded walkway or animal exhibit. There would have also been the very real possibility of just losing him in the crowd. I could envision myself in front of the reporters trying to explain what would possess a mother to take a child such as mine to a place such as the fair — all while a search team scoured the area. No thank you. The fair did not happen last year.
But, this year was dramatically different. The fair just sounded like a good way to kill a few hours on a Sunday afternoon. It wasn’t until we got to the fair and started looking for parking that I really realized how amazing it was to be there with Gray. It almost didn’t cross my mind that this was something to appreciate. THAT is how our life feels now: Much closer to normal than I ever dreamed possible.
Truthfully, I don’t even have anything that interesting to say about last Sunday except that we went to the fair, we ate some fried food, we watched a pig race and the kids got whiny after about 3 hours, so we left. It was so easy that, when Zoe and Gray had the day off of school on Friday, I made another last-minute decision to take them to the fair for another 3-hour go ’round.
Our second trip was equally pleasant. As we walked around, we stopped so that Zoe could go on the bigger rides. I figured that we would make our way over to the kiddie rides so that Gray could enjoy some as well. Even though he seems like a thrill seeker, I felt nervous putting him on rides that were meant for kids his age. I explained to Zoe that I was concerned that if Gray got upset or tried to get out of his seat, she would not be big enough to control him. Of course, I was not going to go on any bigger riders with him. I needed to stay with Hope and my post-40-year-old vestibular system couldn’t take it anyway. So, Zoe and I checked out various rides that looked like they might be possibilities for Gray. We stopped at one ride that looked like a spinning octopus with spinning pods at the ends of the tentacles. Gray stood at the fence and watched the ride go around while Zoe and I discussed the safety harnesses. In the end, we both decided that it was probably too much for Gray. We turned to move on, but Gray pulled back and started whining. I pulled out the iPad and asked him what was wrong. He opened up his communication app and pressed “Fun” -> “Leisure” -> “Ride Bike.” Then, he pointed to the ride. Zoe and I looked at each other in amazement. There are not any amusement park choices on Gray’s iPad, so he just came up with the closest thing.
Minutes later, I was strapping him into the octopus pod. He was genuinely happy and gave no protest when the safety bar came down over his chest and across his lap. I asked the ride operator if there was an emergency stop switch. He assured me that there was, but looked very uneasy that the lady with her kid strapped to a dog was asking about emergency plans. When the ride took off, Gray was the happiest kid at the whole fair. Zoe got him to raise his arms and squeal and he did it over and over again with each passing spin.
After the ride was over, we went for more fried food. Zoe walked with her arm draped over her brother’s neck. “I’m so proud of you, buddy! You’re my best friend in the whole world!” Then, she looked at me and said, “I’m so glad that Gray is just the way he is. A normal brother would be a bratty pain-in-the-neck, but my brother is the sweetest one around. I definitely would not trade him for any other brother.”
Me neither, Zoe.
This weekend carries great significance for the Golden family. The first couple of weekends of October are always focused on decorating for Halloween. Because we are Jewish, we don’t decorate for Christmas and our Hanukkah decorations are somewhat sparse. Halloween is our big decorating holiday. It’s a very big holiday in our neighborhood and Barry feels passionately about decorating the house to the point of overkill. Each October, we pull out the boxes of Halloween decorations and costumes from years passed.
This year, as we were sorting through the boxes, I realized that it was exactly 2 years ago when we submitted our application to ASDA. This was probably just a week or so after I had first learned of the existence of autism service dogs. I remember that this was the week we submitted our application because part of the application process required us to submit two videos. We had to take a video of our family at home and we had to have a video of Gray interacting with a dog or dogs. Stacking the decorations out in our dining room brought back the image of our video that I sent during our decoration process 2 years ago.
It is incredible to think about how much things have changed since I made those videos. As I listen to the sound of my own voice narrating, I can remember how hopeful I was that a service dog would make a difference for Gray and our family. As time passed over the 15 months that we had to wait for Hope, I can say that my anticipation moved from unreasonably optimistic to completely skeptical and back again in a cycle that probably didn’t end until about 2 weeks after I brought Hope home from Portland.
I often say that I wish I had a crystal ball so that I could just have a little glimpse of how things will turn out for Gray. Today, I wish I could be the vision in the crystal ball so I could go back and tell that 2-years-ago version of myself what to expect. I would tell her that things are going to first get a lot worse. I would tell her that there are going to be some scary moments with Gray’s mania and self-injurious behavior and running out into traffic and ruined family outings. I would tell her that she will have moments of feeling overwhelmed and unsure of how she will even make it through a day let alone her whole future. And then, I would tell her that it is going to get so much better. I would tell her that she made such a brave and smart decision in leaping head-first into the service dog decision. I would tell her that things are going to get so much better that she will be inspired to write about it so that other people can find out about this life-changing and game-changing possibility for their child.
I know I will never have a crystal ball, but knowing that the story I would share with my younger self has such a happy ending gives me peace. I’m certain that there are tough times and decisions ahead, but I have learned to trust my instincts.
For your viewing enjoyment: This first video is the family at home decorating for Halloween. Zoe is 7, Gray is 5 and Lena is 2.
And, our day at the dog park. Gray is much more interested in the other people than the other dogs.
On April 24, I wrote my Insurance companies are evil post discussing my frustration over getting Gray’s therapy paid. For the last month, I have been living through Part 2 of that story.
When last we left off, Gray’s behavioral therapy hours had been cut back from 20 per week to 15. That was a loss, but it only lasted for a short while because we were able to get more hours approved for the summer when he was out of school. Concurrently, I was told that our insurance carrier was not going to continue their individual contract with my therapist. As I detailed in my post on April 24, I won that battle. We were given a 6-month extension of our therapist’s contract and she was encouraged to apply for in-network status.
As our glorious summer came to a close, I started thinking about the renewal of Gray’s treatment plan that was do mid-September. Our therapist began the process of applying for in-network status with our insurance company at the end of July. Unfortunately, we quickly found out that was not enough time to complete the process. We were told that the process generally took many months. I was stressed, after spending the required $10K out-of-pocket on in-network providers, all of Gray’s therapies have been getting paid at 100%. On the other hand, our out-of-network benefits require us to spend an additional $20K out-of-pocket before the insurance will pay for any portion of our bills. At a rate of approximately $1,500 per month, you can understand why it is important to me to keep our therapists in-network.
Gray’s therapist furiously submitted the required information and begged anyone she could to fast-track her application. Fortunately, it has been going much quicker than anyone expected, just not quick enough. As the September re-authorization date came and went, his therapist’s in-network status remains in process. I spoke with our autism care advocate at the insurance company and the conversation quickly headed down the same road as the one that we had in April. I asked for a short extension of our therapist’s contract, she said it would not be possible, I asked to speak with her supervisor, she said she would pass on the message…same story different month. After speaking with her (yet unnamed) supervisor, she told me that my only option was to file a letter of appeal with the appeals department. I asked her if she thought that would be productive and she said she had no idea.
Then, things got a little weird. I already had the name and phone number for her supervisor because I had found it back in April through my amazing sleuth-skills. Rule number 1 for parents in my situation: always keep a record of who you have spoken with, their position and their direct extension. So, I left a message for our advocate’s supervisor giving a brief explanation of our situation. I told her that I knew she wanted us to file an appeal, but I would really appreciate the opportunity to speak with her personally. I got no response. I left another message the next day. Then, I got a call from our advocate who said that her supervisor had received my message and told her to call me and say that my only option was to file a letter of appeal. I asked her if she would ask the supervisor to call me. After a couple of days, I called the supervisor and left another message. This dance went on for about 2 weeks. I would leave 2 or 3 messages for the supervisor and then her subordinate would call me to say that my only option was to file an appeal. It was maddening. When I asked our advocate why her supervisor would not call me herself, she said she did not know. When I asked her if she thought that was strange, she just said that I was making her uncomfortable. Fair enough. I hung up the phone with her and called the main number to start hunting down the supervisor’s supervisor (the grand-supervisor, if you will).
One hour and 3 call-transfers later, I was on the line with an unspecified person who claimed to be able to access the supervisors, but would not grant me access. She said, “I guess I don’t understand why you don’t just do as you’re told and file an appeal.” Well, my first thought was, “It’s not for you to understand. You have no authority to affect this situation either way, so I don’t really care what your thoughts are on the matter.” Of course, I did not say that. What I said was, “as the mother of a child with severe autism, I don’t have a lot of spare time to draft letters with my therapists and send them off to some unknown place where they may or may not be read or answered. I would rather speak with someone who knows this case so we can have a productive conversation.” Her response was astounding.
“Ma’am, you can CALL and CALL and CALL and CALL and CALL, but the answer is still going to be the same. File and appeal and stop trying to talk to supervisors.” Once again, I was brought back to the film that I referenced in my Insurance companies are evil post from April. During the trial, the mother of an ill child reads a letter from her insurance company in response to her repeated phone calls. The letter says, “you must be stupid, stupid, stupid.” I’m pretty sure that was the same thing that this insurance representative was saying to me. She thought I was being stupid, stupid, stupid. She was wrong. I calmly asked to be put into the voicemail of the grand-supervisor. She complied. That gave me the name of this mysterious wizard behind the curtain and I was able to use my super-sleuth skills to figure out her email address. Here is the email that I sent to her:
Good morning Dr. Hxxxxs,
I left a message for you yesterday after spending a very frustrating 40 minutes on the phone with a UBH representative who did not want to allow me to contact you. Here are the issues that I would like to discuss with you:
1. My 7-year-old son, Gray, is severely autistic. He is non-verbal, not fully toilet trained and has many behavioral challenges. I have been very fortunate to find an excellent BCBA who contracts with truly gifted therapists. Together, they have made some wonderful gains with my son over the last year. Until last March, my son’s BCBA has worked with Gray under an individually negotiated contract with UBH. Last March, when his approval was up for renewal, we were surprised to find that UBH would not continue their contract with Lxxxx. Fortunately, after much discussion, UBH agreed to extend her contract for another 6 months so that Lxxxx would be able to apply for in-network status.
2. Lxxxx began the application process at the end of July. Both of us thought that would be enough time to gain her status before his current authorization expired on September 18th. We were incorrect. Although she is VERY far along in the process and her audit is almost complete, she has not yet received her in-network status.
3. I spoke with Dr. Nxxxx, our autism care coordinator, to ask if we could have a short extension of Lxxxx’s contract to bridge the gap until her application is approved. Dr. Nxxxx told me that was not possible. I asked if I could speak with her supervisor about this and she told me that she would issue a request on my behalf. The next day, Dr. Nxxxx called me back to tell me that her supervisor, Dr. Hxxxx, said that my only option was to write a letter along with our BCBA and send it to the appeals office. I asked Dr. Nxxxx if she believed that this would be an effective option in getting our claims paid at in-network rates. She said that she did not know because she had never seen an appeal for this kind of issue before. This option is not very appealing to me because I am very skeptical that it will be effective at all. As a mother of 3 children with one being severely autistic, I do not have time to compose and file paperwork unless I am certain that is will be a worth while endeavor.
4. Because Dr. Nxxxx told me that she was not authorized to do anything other than offer me the appeals information, I decided to contact her supervisor, Dr. Hxxx. I know from our experience back in March that Dr. Hxxxx, unlike Dr. Nxxxx, has the authority to extend Lxxxx’s contract. I have left several messages for Dr. Hxxxx on her voicemail asking her to contact me in hopes that we could discuss our situation. Dr. Hxxxx has never returned any of my calls or directly contacted me in any way. Instead, she has asked Dr. Nxxxx to call me and reiterate the message that my only recourse is to file an appeal. I asked Dr. Nxxxx why Dr. Hxxxx would not speak with me directly and she said that she did not know, but could only give me the message that Dr. Hxxxx had passed along.
This is why I am now attempting to contact you, Dr. Hxxxx. As a customer of United Healthcare who is in good standing, I feel that I am receiving poor customer service. As a mother of a child with a severe disability, I feel that I am being treated in a callous and unsympathetic manner. At a minimum, Dr. Hxxxx should make the time to contact me directly and listen to my request. Her manner of responsiveness is insulting and unacceptable. Additionally, I do not feel that I am making an unreasonable request. My son’s BCBA is very qualified and has all of her credentials in order. I have no doubt that she will be approved for in-network status. By extending her individual contract for the brief period of time that it will take to get her approval in order (perhaps 12 weeks), this will prevent me from having to cancel my son’s therapy sessions or pay $2000-$3000 out of pocket to bridge the gap in coverage. It is not beneath me to beg on behalf of my son and his therapy treatments. He has been making very promising gains in ABA therapy over the last few months and it would undoubtably be detrimental for him to stop those services. I would also like to add that Lxxxx has reported that the contracted in-network rates that she will be receiving from UBH once she is approved is actually a bit higher than the individually contracted rates that she has been receiving. Therefore, it would not cost UBH any extra money to extend the contract with Lxxxx.
I would be extremely grateful if you would contact me directly so that we may discuss the possibility of just one more extension of Lxxxx’s individual contract so that my son may continue his therapy without interruption or undue financial hardship on my family. Please respond to this email or call me at your earliest convenience.
The grand-supervisor called me 10 minutes after I sent this email. She was as nice and friendly as she could be. She asked for the information to contact Gray’s therapist and said that she would set up a phone call ASAP. She said that she would do her best to help us because our request seemed reasonable. Four days later, she overturned the denial of our therapist’s contract and approved the extension. I’m back to paying nothing out of pocket through the end of the year.
The moral of the story:
Don’t give up. Don’t take negative outcomes from subordinates. I don’t think that the grand-supervisor was intimidated or annoyed my be. I think she genuinely saw my point and wanted to be helpful. The trick was climbing over all of the other obstacle-people who were thrown in my way.