Mourning the Loss

This Post Probably won't make much sense unless you read Sleep... It's not a Behavior Disorder.  This situation has really profoundly impacted me.   As I start to reflect on why it affects me so deeply there are a few reasons. ...
1. I am seriously worried about how this will affect Naomi psychologically. She is a psychologically vulnerable person. She's already has got puberty going on and that’s as much as I want to deal with. I'm certain that Ms. Supervisor is entirely too confident about how this can be handled if we see the kind of aggression we saw a couple of years ago. If, God forbid, that were to happen, Naomi is also much larger now than she was then. We wouldn’t be able to hold off on medication or just physically resist as we did before.

2. I had grown to like this lifestyle. I will mourn it when I'm lifting Naomi out of bed in the morning, figuring I’ll skip brushing her teeth because otherwise, we’ll be late. I'll remember that I used to have infinite patience prompting her to put her own clothes on as I shove her arm into a sleeve or do up her buttons, because there is no time or patience for prompts anymore. I'll mourn it as we skip the morning dog-walk - when there's no other dogs out and minimal traffic, and thus relatively safe. I'll mourn it as I hand her a granola bar for her to eat in the back seat, instead of making pancakes together. I’ll mourn the life we used to have when I pick her up from school at 2:30 wondering how the hell I’m going to fill the time until dinner.

3. This is the part that I haven't dealt with yet. I am mourning the trust and good feelings I had with someone I thought was a friend. The last time I saw Ms. Supervisor I said "I miss you! We have to go out for a drink some time!" And she readily agreed. We had never gone out for a drink, but we well may have. I met Ms. Supervisor –( let's call her Suzie, ) in a community park in 2012. Naomi, as usual, was touching a little girl's hair and she went to Suzie's daughter. I usually just shrug and say 'Sorry,' when this happens, but the little girl Naomi was touching that day was African American and I wanted to be clear that it wasn't the race of the girl that prompted Naomi to touch her hair, it was just what Naomi did. "She has autism," I told Suzie. Suzie lit up and smiled. I'm a Behavior Analyst!" She was very interested in Naomi and asked a few questions. I asked where she was working and she told me that she was a stay at home mom. She and her family had just moved to Ohio from the Atlanta area and she would be looking for work soon.
"Naomi goes to XYZ school" I told her "They are always looking for people. You should call them if you are interested."
A few months later I saw her with her kids at the Children's Museum. She said that she had gotten through stage 1 of the interview process and would be re-interviewed with the executive director soon. (You'd think they were hiring the CEO of the World Bank)
A month later there was a call on my answering machine. "Hello, my name is Suzie Supervisor and I'm the new Behavior Analyst at XYZ. I've seen you a few times around the community. It will be great to get to know you and Naomi professionally."
I was a little taken aback, because we were in AWE of the Behavior Analyst that Naomi had at the time (Sheila), and I didn't want to change to this new person (Suzie). But I had little choice and I figured we'd give her a chance. There were advantaged to this new arrangement. Suzie came to our house. While Sheila was wonderful, I only really related to her professionally. I respected Suzie as a professional, but I also came to think of her as a friend. When she came to our home, I looked forward to Naomi's 'break times'. There were like a social break for me. I enjoyed her company as we'd talk mom to mom about things. We lived in the same town so we’d discuss the local public school and its services (which we both had issues with.) Both our daughters were girly girls. They both insisted on sparkly dresses and had similar figures although Naomi was taller. So it just made sense for me to give Suzie the dresses and shoes that Naomi had outgrown. (I learned I had to do it surreptitiously. Naomi didn't like me giving her prized fashion pieces away. ) Suzie would gush over how much her daughter loved the clothes and I must admit, I enjoyed knowing that they were loved and cared for. When Suzie had a coupon she didn’t need and she thought I could use, she gave it to me. When we got a dog, Suzie gave me advice on how to work with him and told tales of her own dog. She helped me plan our trip to Georgia when the MRT study came up, we talked about the adoption course Stephan and I had taken and we’d see each other in various community settings. In short, we were friends.
Although our friendship went beyond Naomi, it was based on her. She told me Naomi was her favorite and I naively believed. She said that she LOVED going into Naomi’s classroom, because when she entered Naomi was the only one to get excited as if a movie star had entered the room. As with any involved parent in an autistic kid’s life, we occasionally had issues with the supervisor. Suzie would address them quickly and although we weren’t always completely satisfied with the outcome, we usually were. We always felt like Suzie listened to our concerns and understood them well. In short, we trusted her.
So last week, when Ms. Supervisor called and expressed such a strong resistance to empathize with our situation, showed such callous disregard for Naomi’s well-being, and exaggerated to the point where it came very close to lying…I was crushed. Crushed by the circumstances for sure, but also crushed to find out Ms. Supervisor had this cold, callus nature to her.
At first I made excuses for her. I was certain that someone above her was MAKING her do this. I was sure that she was painfully forcing herself to do something she really didn’t want to do because her job depended on it. But there were so many things she could have said that wouldn’t have changed our circumstances, but would just let us know that if it were 100% up to her, it wouldn’t be this way. At the end of one of our conversations I had said “I’m really sorry we have to go to war like this. I hope you understand, you’ll just do anything for your kid.” She responded with “K”. Not “It’s okay”, or “I’m sorry too. I’m just doing my job.” That would have been something, even if it left everything else the same.
When we pointed out that we had been given no time to prepare or make other arrangements she said it was “Unfortunate,” as if it were an act of God, completely unrelated to anyone’s conscious decision. No apology, no explanation, just “That’s unfortunate.”
When I relented and agreed to bring Naomi at a modified morning time, I think there was something subconscious in me that did it for the friendship. I had hoped to see a little of the Suzie that I have grown to love, but I really didn’t. Everything I had asked for got shot down except speech therapy – which was conditional on open times. Plenty other things were taken away. She, once again, made it clear that she thought that Naomi’s sleep pattern was just a behavioral issue. She acted like an authority figure that was standing her ground because she knew what was best. I felt entirely disrespected as a parent. She thanked me for calling, but because she “had a heavy spirit.” It was as if she was thanking me for coming to my senses, instead of thanking me for making sacrifices. She expressed no concern for how difficult this was for us. The overconfidence she expressed in dealing with any behaviors that may come up as a result of this change just made me feel worse.
So I’m mourning a friendship. It wouldn’t be the first time. I just usually can predict when a friendship is fading away. This one came clear out of nowhere. I can't trust Ms. Supervisor any more. Maybe it's best to find that out now.

Sleep... It's Not About Behavior

Okay, this is a WAY-too-long rant about my fight with Naomi's program supervisor. I go into way-to-much back and forth conversation detail. This is my therapy. I wrote it mostly for myself.

 Looking back, I think the first symptom of Naomi's autism was her trouble sleeping. I remember telling other moms about her sleep and they'd respond with "Oh I know. Little Joey didn't sleep through the night until he was 4." Sleep through the night? That wasn't even on the radar screen! Our goals were more along the lines of 'sleep more than 30 minutes at a time,' Or 'sleep somewhere other than directly on me!' When a mom pregnant with her second child said she was having the ‘same sleeping problem’ with her first child, I had to bite through my tongue to not say ‘Oh no, anyone as sleep deprived as I am would not be having sex and making more babies!” Other moms clearly had a different idea of sleeping problems. I read all the books from "The No Cry Sleep Solution", to "Healthy Sleep Habits, Happy Child." Nothing really seemed to work.

 As the years have gone by, things have gotten better, (Thank you melatonin!) but we always seem to be doing best in the sleeping department when we are on a 'late to bed; late to rise' schedule. I don't think I can ever remember a time in Naomi's life when she consistently slept before 11 pm or 12 at night. We tried to make an early bedtime, during that year of public school, but it wouldn't stick. I think her constant sleep deprived state contributed to that not-so-successful year.

 Every once in a while, we make an attempt to put our circadian rhythm in sync with the rest of the world. Last year, when we went to do the MRT study in Georgia, the doctors conducting the study told us we had to be outside from 8 am to 9 am every morning. I decided it would be a perfect time to work on changing our sleep cycles. The timing was perfect. Steven's work schedule wouldn't have to be considered, all therapies and treatments were daytime events and we were in a new environment where new habits could be established and set from the get-go. Bzzzt! (Insert 'wrong answer' buzzer noise here.) We were completely unsuccessful. I'd load Naomi up on Melatonin put her to bed at 9. After lying in bed for about an hour, she'd sleep until about 2 am. Then she was WIDE awake and stayed that way until around 6:30 am at which point she'd fall asleep again. I'd wake her up at 8 am trying to put a coat on her and coax her out the door in my efforts to follow the doctor's orders. 3 weeks later, sleep was not improving and I had a grouchy kid on my hands. I spoke to a few other parents that were part of the study and it seemed none of them were following their morning directives. I decided we wouldn't either. We started back on our late to bed; late to rise schedule and we were both much happier.

 So when I tell people about Naomi’s school, one of my strongest bragging points is “She goes to school from 11:30 to 4:30.” It is so perfect. I think the world would be a much happier place if everyone did this. We don’t struggle against time now. Naomi goes to sleep some time between 12am and 1am. I go to bed around 2 and we get up around 9am. If we have a bad night, there is always time to make up for it in the morning. If not, we can spend the morning doing leisurely things. We walk the dog or do Naomi’s nails or make pancakes. We are not in a constant rush. It’s the time of day that Naomi is comfortable just being at home; when she is home in the afternoon she is anxious and restless. It also allows us to participate in the local university's music therapy internship. There are lots of pluses!

 Last year we were told that Naomi would be ‘promoted to another class’ that ran 8:30 to 2:30. We simply let them know that the time we had worked better for our family. The school said “okay,” pretty much immediately. And I thought we were good. I was wrong.

 The other day Naomi’s program supervisor called sounding very upbeat and a little nervous. “There are going to be some changes in Naomi’s program. I’m really excited about them. We are changing to a ‘needs based’ format. These changes will benefit her both socially and academically.” Then her tone changed to something more serious, “But there will be some other changes. Please give me a call.”

I felt a knot in my stomach. I instantly knew what this was about. The time was too late to call her, so I sent an email.

 Ms. Supervisor,

 Thanks for your message; sorry I didn't get back to you. It was late when I got it and I figured it would be your family time. I must admit, I'm nervous. I kept waiting to hear the reassurance that Naomi will still be in the 11:30-4:30 time slot and I didn't hear it. This outweighs any other consideration. Please don't change the time. We can tolerate just about any other change and we're certainly happy to make changes for her benefit.

 Thanks,

 Shanti and Stephan

 Stephan added his own email

 Just to add to that, the time slot was the main reason we came back to XYZ from Suburbanohiotown school, and Shelia at that time assured us that we will retain that slot. Naomi's sleep (or lack of) was one of the reasons she had all those meltdowns and disruptions while at Suburbanohiotown school, and that is not something we are willing to reconsider.

 When we still hadn’t heard from her the next morning, I knew there was little hope. Finally, her call came around 10:00am. She was ready for battle. So were we. I saw a side of her that I hadn’t seen before. Cold, condescending, long-winded and nauseatingly clinical. It was as if she believed she would be more convincing if she made her sentences longer, hammered on points that were completely not of concern to us and repeated herself again and again and again.

 To make an hour and a half conversation short it can be summed up in a few sentences.

 The classroom she is currently in is not appropriate for Naomi.

 We do not have an appropriate placement for Naomi during your preferred time slot.

 It would be unethical for us to continue to keep Naomi in that classroom.
The only spot we have for Naomi will be a class that starts at 8:30 and ends at 2:30. 

 I didn’t buy “inappropriate and unethical.” Naomi has been doing well there. It may not be optimal, but she is doing well and she loves it. She is constantly asking to go to ABS on the weekends and rushes out of the car to get to class every day. She is happy. She is making progress. There is nothing unethical about it. “She will not make progress if she stays in that room and that would be unethical,” Ms. Supervisor said. I don’t believe it. The only thing that doesn’t fit is that all the other students in her class are boys and physically shorter than she is. (Almost everyone Naomi’s age is physically shorter than she is, so that’s not unusual.) Everyone has an individual program. At least a couple of the other students in her class speak more fluently than she does. This is primarily an administrative issue and for the convenience of XYZ staff. They were trying to justify it by throwing her in with some girls and telling us how much progress she has made.

The supervisor didn’t respond to our concerns about sleep and how sleep deprivation would affect her behavior at all. It was clear that she believed this was a lifestyle choice or a behavior issue and not a biological fact. She suggested that Naomi needed to learn how to cope with it when she was sleepy by asking for breaks. – First of all there is an enormous difference between “sleep deprived” and “sleepy” in any child – even more so for an autistic child. Second of all ‘breaks’? Really? You think that will work? She also suggested that if the negative behaviors we see when she is sleep deprived should come up, we could implement a behavior plan. That’s right! Counter sleep deprivation with Skittles!!!! Maybe that’s an answer for the torture allegations our government is facing right now.

Finally, I asked. “Are you saying, Ms. Supervisor, that if we do not accept this new time schedule we will have to find another provider for Naomi’s education. “

“Since we do not have an appropriate class at the time you have specified, Yes.”

There will be exactly 6 more school days before this is implemented. Not really enough time to come up with an alternative.

I had to go get Naomi ready for school. Stephan continued the discussion for another hour. From his accounts they just kept talking in circles. Finally he came downstairs and said “She wants to meet with us tomorrow.” I said we’d arrange that later. I had to get Naomi to school. As I was getting Naomi and her lunch packed up Naomi repeatedly said “Mommy is angry.” It’s scary how she can feel that vibe off of me.

“No sweetie. I’m not angry. Mommy is happy.”

She wasn’t buying it. “Mommy is angry.”

“I’m not angry with you sweetheart, I’m angry with Ms. Supervisor. “ Yes, I know I shouldn’t have said that. I just didn’t know what else to say. My brain was buzzing and honesty was all I could come up with.

When I got back from Naomi’s school I was PISSED. I wrote the following email.

Ms. Supervisor,

Quite frankly I don't see much point in meeting if you are only going to repeat that her current classroom is ‘inappropriate' and that there is no choice.

Without a decent quality of sleep there is nothing else to consider. You seem to think you know better. You don't.

Your are asking us to play Russian roulette with our daughter and trying to convince us that it is really in her best interest. She should 'learn to deal with' sleep deprivation by 'asking for breaks'? Please tell me you don't really believe that. It makes it very difficult for me to trust you professionally or otherwise if that is truly what you believe.

The betrayal I feel is enormous.

We have been very clear on numerous occasions about how important this time slot is to us. The least that could have been done is given us some notice. That is what is really inappropriate and unethical. So don't try to tell us that you not willing to be inappropriate and unethical. That is what you are doing right now.

 Shanti

 I sent it to Stephan for revisions. I knew from previous experience not to hit send in the heat of the moment. There is no “retract” button.

 A couple of hours later (and luckily before I sent the email) Ms. Supervisor called us back. She had spoken with the administrator and they had a couple of proposed compromises.

 1. We could take the new classroom and have an understanding that Naomi will start arriving later than the other students in her class. The intention would be to have her arrive at an earlier and earlier time until she was used to arriving at 8:30.

 2. We could remain in her current classroom with the full awareness that professional people STORNGLY feel this is inappropriate an unethical. We were also told that our decision to have Naomi in an inappropriate setting would mean that the person intended to take her place would not be able to do so, thus depriving another student of the placement he needed. [I imagine they weren’t sending that student away nor refusing his money] Furthermore, we were being put on notice that Naomi could only take this placement until May and at that time there would be a complete refusal to put her in any other classroom other than the one with an 8:30- 2:30 timeline. In short they we could stay in that classroom with the complete disdain and disapproval of the staff.

 Steven and I looked at each other and quickly chose option #2. Their approval didn’t matter shit to us at that point.

 Ms. Supervisor was not pleased. She told us they would start taking data and working on Naomi’s issues so that an earlier time could be arranged in the future.

“IT’S NOT ‘ISSUES’. IT IS A BIOLOGICAL CIRCADIAN RHYTHM!” I said. I couldn’t listen to any more. Although we were getting what we wanted ‘sort of’ I couldn’t take the condescending tone about ‘data’ and ‘issues’ and ‘appropriateness.”

 “I’m sorry. I said. I appreciate your willingness to give us more time one this. I just still have the adrenaline running though me.”

 “Okay,” she said. I knew by her tone she was really offended.

 We hung up. Our battle was won.

 But…. As everything sunk in I wondered if we were making the right choice. If their approval didn’t matter to us, should we really be trusting them with Naomi’s education? It was going to be difficult to work with them since we had refused their recommendations. There was something unspoken but implied in those choices. They were saying “Pick #1 and we’ll be nice; we’ll be flexible. Pick #2 and you are on your own when things go wrong. Every time you come up with a concern or a suggestion, the response will be “We told you this wasn’t appropriate.” On top of that, this solution was only temporary and I didn’t know what we’d be able to come up with in May. There were no good choices. Everything had been going so well. Why did they have to come in and mess it up?

 There was one other thing bugging me. It seemed that Ms. Supervisor was indirectly suggesting that the teacher in the 8:30 –2:30 classroom would be a better fit. The teacher of her current classroom is WONDERFUL but she will be leaving at Christmas. Her replacement may not be so wonderful. This is an extremely important factor. I also considered that if I was the one to make compromises I would have leverage when it came to future requests. First, on the agenda was getting rid of sessions with Miss Samantha and getting speech therapy services we wanted. It helped that we had the agreement that Naomi could be consistently late. It still sucked. But every option sucked at this point.

 I asked Naomi. “Do you like Miss Natasha?” (the new 11:30 to 4:30 teacher)

“No.”

 “Do you like Miss Maria?” (the 8:30 to 2:30 teacher)

“Yes.”

 “Which teacher do you want? Miss Maria or Miss Natasha?”

"Miss Maria."

 I kept asking her these annoying questions all night. This is one of my greatest flaws as a parent. When I’m flummoxed, I ask Naomi what she thinks. I just can’t help myself. Her answers are usually less than reliable, but in this case, she was consistent. Miss Maria won hands down.

 So after a sleepless night, I called Ms. Supervisor. “Be straight with me.” I said “Who is the better teacher?” While carefully treading and letting me know both of them were ‘good’, she ultimately said that Miss Maria was the best fit for Naomi.

 We spent the next 20 minutes negotiating. The demanding bitch in me came out in full force. If I was going to give up sleep, politeness was going out the window. I got some things but gave up others. I HATE that we’re giving up group music therapy and home visits. Naomi lives for music therapy and I have come to think of our home visitor as a dear friend. This sucked. But the only question at this point was which option sucks less.

 I told her that we wanted to drop Samantha. "But Naomi was so happy with Samantha yesterday," Ms. Supervisor said.

 "Naomi continues to say "No Samantha" and quite frankly, I have NEVER been impressed with Samantha. I don't want you to tell her that because she's nice. I have basically spent the last 2 years just being polite. I'm done with that now. "

 "Well Samantha’s services are paid through medicaid and you can't use that money for anything else, " said Ms. Supervisor. Yes, the person who recently lectured me on what was 'appropriate' and what was 'ethical' basically said - 'it doesn't matter that her services are useless because they're paid for by the government.' As a taxpayer, I was wasn't pleased.

 I got the speech therapy services we were hoping for.

 She offered to help change Naomi's sleep patterns and I politely declined explaining that I knew this child better than anyone and her sleep problems are not behavior based.

 She clearly didn’t believe me. She started talking about how negative behavior could be addressed with a behavior plan.

 BUT WE KNOW THE CAUSE! If her negative behavior is caused by sleep deprivation, the answer is more sleep!!

 But we can address those behaviors to minimize them.

 Call me indulgent, but I think it's cruel to deprive a child of sleep and then respond to her behaviors using any other tactics other than letting her sleep at times when she can sleep.

“Look, “ she said “The world is not going to start at 10:00 so Naomi can get her sleep. It is up to us to get her ready for the world as she progresses. “ Here she's kind of got a point, but I stand by my point that it is not behavior based and when something is just part of your biological make up it's best if the world environment can be adjusted in a way that works. We had that. We were there. It can be done. If the environment will not adapt to her needs, the only other answer is drugs. I'm not going to put my kid on drugs so that XYZ administration is accommodated. (Too bad I didn’t think to say any of this at the time. That’s why I’m writing this down. It’s my therapy.)

 When she started talking about data and behavior plans and adjustment time I said “Look, I know you are the Behavior analyst and the data-gal, but I don’t have to have data to justify my choices. If we start seeing scary behaviors, we are simply GONE. I’m not going to sit there and try to convince you that I know my own kid. I’m not going to wait until you collect enough data to prove this isn’t working. We’re just gone. “

 “Well we are going to see some of these behaviors just as a result of the transition,” she said.

“I can’t put it in clinical Behavior analyst speak for you, but I know the difference between heading down the road to anti-psychotics and ‘just needing a little adjustment time’. If I see one, you will not be able to convince me it is the other and I’ll be gone before you analyze the data.”

 “Okay. As long as you know there is a difference. “

As we finished up she said "Thank you for calling. I had a really heavy spirit yesterday, so I'm really glad we got this worked out."

 My gut screamed "It's not worked out! It's been more or less forced upon us!" Instead, I said "I am not convinced that this is going to work out. I'm committed to trying it. I'm not committed to forcing it to work. I will not hesitate to remove her if I see a negative change in behavior."

 And the cycle of data collection and behavior modification started again. Groundhog day!

 As I got off the phone I felt again, like I had made a mistake. I felt awful. I wanted to phone back and say 'Scrap everything I said! We're not going to give up that time slot! We'll find something else in June!'

 But what was done is done. I think this may be my wake up call. I've been concerned about a number of little things at XYZ school lately. Maybe this is the thing I needed to get me looking elsewhere. We'll try this until May. I just pray that it won't adversely affect Naomi before that. 

 I’m questioning myself. Did I fold for the right reasons? Was there something subconscious in me that didn’t want to be ‘that parent’? Was I afraid of coming across as too lazy? Should we change schools now instead of waiting until May? Yes, I torture myself with these little things.

 I imagine many that read this would be thinking 'You're lucky you got the 2 years that you did! Most kids just have to get up early with the rest of the world. Suck it up!' I understand. But I think you'll also understand that when you find something that works; When you find something that seems to offer the equilibrium that was missing in your family life and scared the crap out of you when it wasn’t there, you’ll fight to keep it. You’ll fight not to change it one iota.

Where Do We Draw The Line?

It's hard to decide when to let Naomi get her way.  There have been times when I think I understand what she is talking about/what she wants /what her reasons are and then I find I was way off the mark. I think many autism parents go through this.  Last night was a good example.  We have gotten into a habitof reading 8 books before bed every night.  Last night, after I had gotten through the 8 books and was anxiously working toward "lights out", Naomi said "Mortimer!"    I took this to mean "I want you to read another book," as we have a book called "Where is Mortimer?"

"No, Naomi, we've done 8 books and it's very late.  We're not going to read any more.”

"Mortimer!"  She repeated.

"No! Naomi you've already picked all 8 books.  See? 1,2,3,4,5,6,7,8,"  I said counting each one.

"Mortimer in the bed!" She said.

"Okay," I said handing her the book to set beside her in bed.  It was an odd thing to do, but I was willing to let her sleep with a book if it would get us one step close to ‘lights out’.

She then jumped out of her bed and grabbed a teddy bear - who happens to look just like the character in "Where is Mortimer?"

That's a case where I figured out what I got wrong; there are many where I never figure it out.

Likewise, there are times when I know what she is saying, but I don’t understand the emotion behind it.  For example, last year Naomi got in to a silent ruminating, brooding mood.  It scared me because I know what could follow.  She kept saying "No page, bye-bye page! No reading."

"No reading what, sweetheart? Which page?"

She couldn't tell me.

My kid who happily went to school started dreading school.  She cried and cried in the car as we approached it.

In my sometimes over-polite manner, I wrote to Naomi's teacher in her communication book. "Naomi keeps saying "no reading, no page."  She seems really upset.  Could we skip reading for a couple of days?"  There was no response and judging by Naomi's behavior the reading war had intensified.

I called her supervisor.   Apparently there were 2 pages in a book Naomi was working on that she didn't want to read.  One was of a teacher, the other a police officer.  The text was “I can see a teacher” and “I can see a police officer”. They were kind of odd looking pictures but there was nothing distinctly villainous about them.  Apparently, her teacher was using all the ABA branded means to get her to read the pages.  She was denying her playtime or free choice and she was offering her tokens and things she liked if she would just read those 2 pages.  Sometimes Naomi would relent, but for the most part she would not.  She was clearly dreading that book.

When Steven heard about this, he came to a swift conclusion.

"Rip those pages out! " He said emphatically, and I agreed.

"Well, given the right reinforcer she has read them in the past," said the supervisor.

"Maybe so, but it doesn't quell her fear and she is ruminating night and day about this," I said.

We went on to describe a past experience at the public school where her behavior started like this and then became more extreme until we had a prescription for anti-psychotics.  We never figured out what was bothering her so much, but whatever it was went away when we changed schools.

The supervisor got it.  And while she didn't rip out the pages, she folder them over so they were no longer required material.  Naomi read the rest of the book without difficulty. To the rest of the world there was nothing particularly wrong with these pages, but to Naomi, they were horrible!

For the standard ABA theory this was a power struggle, something that required the right reinforcement.  To Steven and I this were something completely different.  Naomi was not in a power struggle. She was sincerely horrified by those pages.  This is where "Treat them the same as anyone else her age,' doesn't apply.   Most likely anyone else that age wouldn't be horrified by those pages and if he/she were, they would be able to explain why and resolve the difficultly.   The horror that Naomi felt seemed to transcend an explanation that could be given in language, but we knew it was there. 

Now we have a situation that isn't as black and white, but I am concerned.  Naomi has been emphatically saying "No Miss Samantha."  Miss Samantha is her counselor.   Naomi sees her once a week.  She isn't ruminating about her day and night, it just comes out every once in a while.  She can be distracted from thinking about Miss Samantha pretty easily.  She hasn't expressed any reluctance to go to school although that's where she sees Miss Samantha.  In short, it's not that serious.

I could ask to sit in on a therapy session, but I doubt that would give me much insight.  Samantha has told me about some of the things they are working on and what they are doing.  While I'm not particularly impressed, I don't think there is anything distinctly off-putting. It could be similar to those pages.  There is nothing that most of us can understand as being so awful, but it's awful in Naomi's mind.  I'm really tempted to tell the school "Naomi will no longer be getting counseling here."  End of story.

Someone outside of the autism world may say.  "Are you going to stop everything any time Naomi says she doesn't want to do it anymore?  What is that teaching her about life?  What is that teaching her about reality?"  And that's a fair point. But if we had forced Naomi to read those pages she dreaded, I imagine her behaviors would have intensified until she had to start on an anti-psychotic medication.  What is that teaching her? (By the way, I totally understand that medication is often necessary, but if you can avoid it by avoiding 2 pages in a book, that’s probably what should be done.)

So where do I draw the line?   No one gets to call the shots all the time.  Yet, I want to teach her that by bringing her problems to me we can change things and make them better.   I think I'll give it another week.  I know that the school will not be pleased if I stop her counseling and I want to pick my battles with them just as I pick my battles with Naomi.  To be continued.....

The Stigma of 'Disorder'

I recently heard on the radio that the military with changing the name of Post Traumatic Stress Disorder to Post Traumatic Stress.    The idea is that by dropping the term "disorder' there will be less stigma associated with it and thus less resistance to getting treatment.  'This is not a disorder." One spokesperson said "It is a normal response to the trauma that men and women in combat may be exposed to."
I have no particular opposition to this.  After all, it's just a label and I'm all in favor of encouraging service members to get treatment - even if it's just preventive- and I'm certainly in favor of reducing the stigma associated with Post traumatic stress. (disorder)  At the same time, I think this is indicative of how we deal with stigma.   I wonder if we are going at this ass backwards.   If 'disorder' is seen as a stigmatizing, negative term, does anyone with a medical condition really 'deserve' to have the label 'disorder'?    None of us like a stigma whether we are soldiers or not.   I imagine that next we are going to stop referring to Autism Spectrum Disorder and just call it 'Autism Spectrum.'  Bipolar, obsessive compulsive, anxiety, will all follow up with a name tweak. 

 Along the same note, it is frequently and loudly stated that "AUTISM IS NOT A MENTAL ILLNESS!!!"  When I look up the definition of mental illness - there are several but most of them say pretty much the same thing.  It comes down to impairment of cognitive, emotional or behavioral functioning.  How is autism not a mental illness?     I can hear someone responding already "Autism is a neuro-developmental disorder."  Yes, but many mental illnesses are also neuro-developmental disorders. Child onset schizophrenia for one.  Maybe the objective should be de-stigmatizing 'mental illness' period.  We could give it another name, but the real objective should be fostering an understanding that people with mental illness should not be shunned or shamed any more than someone in a wheelchair should be.  They are not a danger to society and with the right accommodations and/or treatment can lead productive fulfilling lives.
I've seen parents get angry when their child is referred to as 'disabled' and then get upset when their child is denied services intended for the 'disabled'.  'We'd like the services but not the stigma please.'  Here's the deal: All of our children deserve services without stigma.  You kid isn't any more deserving than another.
Yes, we can drop the term 'disorder.'  But is that really going to have the impact that we are hoping for?  By dropping a term used for one group to distance themselves from another aren't we making it clear that we should judge and stigmatize certain groups of people but not others?  Soldiers that have post traumatic stress should never be blamed for their condition.  It is a natural response to trauma.   However, no one with a health condition should be blamed for it.  It is a natural response to our environment and our genetics.

If You Want One More Person's Opinion on the Jerry Seinfeld Revelation

I have read so many pieces on Jerry Seinfeld that I find myself forming an opinion where I originally had none. Like so many things (vaccines, a "cure", ABA, the actions of desperate autism parents,) people seem to be strongly on one side of this issue or the other. I imagine most people are really just somewhere in the middle. They just don't write about it on a Facebook page.
I wasn't "offended" by Jerry's statement. But I did roll my eyes and quietly laugh. I almost did a face-palm, but not quite.
For so many, autism is a serious quality of life issue and for someone who has as comfortable a life as Jerry Seinfeld, there is no quality of life issue. Could his life be less comfortable than it appears on TV? Yes! Quite likely, in fact. But nobody's life is as comfortable as Jerry Seinfeld's life appears on TV. There is no doubt that autism hasn't held him back the way it has for so many. As a TV personality, he has a responsibility to show the big picture when he makes statements like this. To his credit he said “On a very drawn-out scale, I think I’m on the spectrum,” indirectly acknowledging that his 'autism' only affects him mildly.
To his discredit he also said “I don’t see it as dysfunctional. I just think of it as an alternate mind-set.”
It would have been nice if he had prefaced that with "The way it affects me," and then went on to recognize that it affects others in a very profound way and therefore, is a serious disability and far more than an alternate mind set, regardless of  how he sees it in himself.
I liken it to someone who says "I think I have OCD. My sock drawer always has to be set up with matching pairs." Someone with a really disabling case of OCD would roll their eyes and do a face-palm.
Personally, I think I have a very mild case of dyslexia. I am an atrocious speller (Thank you spell check!) and I am in awe of bloggers that can just bang something out without re-reading it several times before they hit post. (You can be sure I'll re-read this at least 3 times and there will still be mistakes.) I read slower than most people in spite of taking a speed reading course and spending a lot of time reading. Nevertheless, if I were on TV and I said "I think I'm dyslexic," I hope I would qualify that with saying that it is very mild and that I understand there are people who  have serious dyslexia.  They can't read at all and have trouble with road signs or finding the right grocery isle.   I also wouldn't portray dyslexia as a simply 'different'.
So I get those that see his statement as trivializing the level of struggle that they or their kids go through on a daily basis. I get that some worry his statement will make others who know very little about autism think "If Jerry Seinfeld can overcome his struggles with autism and make it in life, why can't your kid?" Haven't we all known some one that finds out about our kid's diagnosis and gone on to tell us about another autistic person they know of as if our kid would have the exact same abilities? I know I have!
Overall, I don't think it's that big a deal. We've all got bigger fish to fry. It's just such a hot topic I find myself thinking about it a lot.