Friday, December 12, 2014

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.
 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.

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

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