Thursday, August 1, 2019

If You Have to Exclude Us, Do It Nicely

Special Needs Families - We know about being excluded.  It happens.  Although it's best if our kids can be included as much as possible, it's not always possible.   But what some people don't realize is that it's not an all-or-nothing situation.  There are ways that you can make exclusion hurt less.  I'm drawing on my own experiences as well as those from other blogging autism parents here.  There are many times when someone is  excluded from an event or activity and there were little things that could have made it easier.  

Assess the situation before it is a last minute catastrophe
When Naomi was in first grade we got a notice from the school announcing that her class would be in a singing and dancing performance.  The note strongly stated that this was part of their program and it was NOT optional.  My husband and I looked at each other and said "Naomi is going to be singing and dancing? Okay... I guess if they think she's up for it."   The thing was, she wasn't up for it.   And when did the teacher decide to tell me?  Approximately 2 hours before the show.  Yes, I had been prepping Naomi with social stories and the like for the past week, my husband made special arrangements to get home early so he could see the performance and I had just assured the little girl that would be Naomi's partner that she would definitely be at the performance. But the teacher decided to wait until the last minute to basically tell me that if Naomi participated, the entire thing would be ruined for everyone.  Nice timing Ms. First Grade! 

Give them their money back
If you have to throw someone out, be decent enough to give them their money back. 
When I signed Naomi up for a special needs dance class they made it clear that there would be NO REFUNDS for recital fees or costumes and they would have to be paid up front.   And to be fair, I agreed.  But we only lasted in that class 3 weeks.  We weren't officially thrown out, but the teacher made it clear that Naomi was being unacceptably disruptive and things weren't getting better.  The recital wouldn't be for another 9 months, but we had to pay 100% of the costume and recital fees.  No exceptions.  When I asked to at least get the costume, since we had paid for it, they told me that I would have to pay another $15 for alterations.  - No, the fact that I was willing to take the costume without alterations didn't exempt me from the alteration fee.   The message was - "Either pay an additional $15 or we'll just pocket the $50 you already paid for the costume Naomi will never wear + $75 the recital fees." Not cool.   

Invite them to other events  When Naomi was dismissed from a theater group, I spoke to the organizer and told her I understood.  I didn't ask for my money back and it wasn't offered.  But I did ask for one thing.  "Make sure you let us know when the final performance is and save us a couple of tickets!"  (Tickets were free.)  Well, the time came around for the final performance and I didn't hear from the organizer.  I emailed her and asked for the dates and a couple of tickets.  When she responded she told me that there were no tickets left and she needed to reserve some tickets for the program's sponsors.  (I resisted telling her that since we paid for the program that Naomi was kicked out of we became 'sponsors')   There were multiple night that they were performing.  Under the circumstances, was reserving a couple of tickets really be an impossible courtesy?

Don't make us do extra paperwork  Special needs parents have paperwork up to their eyeballs!  We don't need any more! Often when I see a study or an activity for kids with autism, I call up and ask " My daughter has very limited verbal skills and she doesn't follow directions well, is this a program that would work for her?"  The response quite frequently is "Fill out the paperwork and we'll look it over."  NO! How is writing our name, address, social security number and 3 emergency contacts going to help you assess this?  Yes, there are 3 questions at the end of 8 pages of paperwork that  will help you make a good assessment, but if you can figure it out, over the phone by the information I am giving you, please, don't make me do more paperwork just to find out we are once again excluded.  

Let them know what is going on -  Just because we're not invited to the party, don't avoid telling us there is a party.  When there is a class field trip that a special needs student is excluded from - for whatever reason - safety, staffing, transportation - tell the student and the family about the field trip anyway.  Maybe some kind of arrangement can be worked out.   Even if there is no working around it, there is nothing worse than finding out about an event that you've been excluded from after it happens. It's just inconsiderate.  When there is a therapy workshop or activity that a family has signed up to be a part of, don't just exclude them by omission.  Let them know!   Otherwise you have the family waiting and waiting to hear from you.... Only to find out the activity has come and gone and for whatever reason the kid wasn't given a slot.   This feels awful.   A quick email that says there weren't enough spots for everyone and thus some people  wouldn't be able to participate would have made it suck far less. 

Define what 'special needs' kids the event will be serving. Before the family  arranges for child care and drives across town, to attend an information fair for '"Lots of Programs and Activities for Special Needs Kids"  let them know if this is an event with their children in mind. If all of the activities are for children who require some level of independence or a 4:1 student supervisor ratio note that on the flyer.   If the family puts all their time and energy into going to an event that excludes their children, the family goes home despondent.    Do don't fill our families with hope, just so we can be excluded.   

Try to offer them something - Little things mean a lot.  When overnight camp didn't work out for my daughter, (because she didn't sleep)  we asked if she could attend up until bed time.  We said we'd could pick her up between 10pm and 11pm.  NOPE!  This camp was offered to give the parents overnight, so if that didn't work, Naomi couldn't participate.  They couldn't explain why not, nor offer us any alternatives.  
On the positive side, there are lots of wonderful accommodations that we see in the community.  One of the best ones is Sensory Performances in the theater.  There are also churches that give sensory services, sports events,  as special needs proms that find ways to include our kids.  This is a growing practice and I am grateful for it! 

Check in on them and see how they are doing  This one just says "You matter".  So often once we are excluded, it's as if we never existed.  Luckily, I have a positive story for this one.  We had a respite provider last summer.  She saw Naomi at her very worst.  Things were so bad it wasn't really safe to leave Naomi alone with her.  The fact that she didn't quit was a miracle in itself, but even better, after she went off to college she checked in every once in awhile to see how things were.  She helped us solicit funding for more support by writing a letter to the county of Developmental Disabilities.  This meant so much to me.  It was so helpful to just be able to tell her that Naomi was doing much better and the Naomi she saw last summer was not the Naomi she would see today.

Make sure the exclusion is really necessary
Sometimes exclusion is necessary; often it's not.  Let's not forget that the American's with Disabilities Act states that "reasonable accommodations" are required for a disabled person.   So you can't just exclude some one because you'd rather they weren't part of the program. The library had a "Read to a Therapy Dog" program and I signed Naomi up.  They told me that she couldn't take  part because she couldn't read independently.  She had some reading skills, but I would need to be by her side to help and make sure she was well behaved. They thought that was good enough reason to exclude her.  Obviously, allowing me to join her was more than 'reasonable' but I had to fight for it.  Would it really have been so difficult to say "Okay."  would the dog really mind?
When Naomi was at the local school, they wouldn't even let her participate in recess with other kids.  They couldn't give me a reason other than, "She just couldn't control herself and would always run away to grab the assistant teacher's hand."  This was a lame excuse for such extreme isolation.  Did she ever do something that would upset the other kids or even try to hold another kid's hand? Nope!  Again, unnecessary exclusion should not happen.
So, I will repeat - I understand that exclusion is sometimes necessary.   BUT - there are ways to make it hurt less.  I hope the community can put some of these things into practice.

Wednesday, February 3, 2016

ABA and Mental Health: A Poor Match?

This piece is WAY too long. I'm working through and over-thinking some of my mixed feelings about ABA and mental health.
One of the people that I spoke to over the past couple of weeks was a behavior specialist. She sat down with me and I explained what has been going on lately. After a little back and forth she suggested that we participate in a 90 day program. Naomi would be followed at school and at home and we would be given feedback and advice. I said “Yes,” but I’m leery.
First of all, I am a believer in ABA. It makes a significant difference in the quality of life for many people and their families. Naomi has been going to an ABA school for years and it has been good, (although more helpful in the beginning than it is now.) I benefited from ABA seminars and trainings. I learned a lot when Naomi was little. I could apply the principles as I saw fit.
Over the years we have had many behavior specialists in our home. The ones that have primarily worked with Naomi have been good. The ones that come to give me advice. Well…. They’ve all been nice people, and I enjoyed their company, but I wouldn’t say any of them were particularly helpful. Naomi has always liked having visitors to the house, so when they came she wasn’t restless and difficult. We weren’t trying to get her to bed, or dealing with a lost toy. In short, the behavior specialists didn’t see the difficult behavior. So instead of showing me how to correct it, they spent a lot of time talking. General principles about ‘putting your foot down’ and ‘being the one in control’ were the overall gist. I felt a little frustrated that I was getting 'why' more than 'how.' I wasn’t getting the specifics I needed on how to best use my 'control' in the most difficult moments without making things worse.
I got along with the behavior specialists, but sometimes felt like I was being lectured. Other times I felt like I wasn’t listened to or at least not understood. For example, I always found myself arguing that the ‘picture schedule’ was bullshit. Since no one acknowledged that my arguments were valid on that topic, I wrote a blog post about it here. It was cathartic, but the behavior specialists never cared to read it. When I explained why certain approaches have backfired or did not work, I always get a response that essentially means – ‘you must be doing it wrong. ‘ It didn’t happen all the time, but often enough that it bugged me.
So when the behavior specialist came the other day, I had a little déjà vu. Here’s some samples of our conversations.
Behavior Specialist: The schedule seems to be a trigger, so you should probably stop doing that.
My response was pretty blunt. “If I take the schedule away she will beat the shit out of me.”
But I was thinking: Are you &^%‪#‎ing‬ kidding me? I begged all of you predecessors NOT to force the schedule on us. Now, that we have relented, it has made things worse and Naomi is attached to it in the most OCD way, you want me to just make it disappear?
Behavior Specialist: Well then, put down all the things that you know you are going to do on the schedule and then give her some choices.
I said “There is no time or space for more choices our schedule has way too many things on it as it is.
I was thinking: I just explained that our main problem is that the schedule is full of too many things in one day!
Behavior Specialist: Well, pick a few things and then let her choose which ones are the most important. The other ones don’t get listed on the schedule
I said: Giving Naomi choices between 2 things causes anxiety, because she will want to do both of them and cannot choose just one.
I'm thinking: THIS IS A HUGE TRIGGER! I have tried. I know. I would say it is our main problem and you think it is a solution?
Behavior Specialist: When she starts to get aggressive, just walk out of the room
I'm thinking: Naomi is often upon me before I even realize she is getting aggressive. If I am fortunate enough to see it coming, ‘walking’ is not an option.
I said: I don’t walk away from Naomi, I run. If I am lucky enough to get to another room and hold the door shut, she attacks the dog.
Behavior Specialist: Take the dog with you when you go.
I'm thinking: Yeah, you know that part about having to RUN? Stopping to find the dog and bringing him with me slows me down considerably. I will not make it to another room if I have to take the dog. The dog and I will probably both get hammered. I figured if she couldn’t figure this out, I wasn’t going to explain it to her. I just said “Okay.”
When I told her I bring up Naomi's behavior the next day when I explain why we won’t be doing her activity of choice, the behavior specialist told me ‘Don’t talk about it the next day because it’s over and done with. Sit down and talk to her 5 or 10 minutes later about how she could have made better choices .’
I said: I’ve tried that. But Naomi’s violence comes in waves. Once it has been triggered it comes back much more easily the next time. NOTHING triggers it more easily than reminding her of what she recently did and telling her that it was wrong. You either wait until the next day to talk to her, you let it go altogether or you brace yourself for another meltdown.
To be clear, this woman was nice, knowledgeable and doing the best job she could. The thing I liked best about her was that when I explained why her responses wouldn’t work, she didn’t give me the ‘you must be doing it wrong’ sense. I think she believed me. But like many behavior specialists I have known, she made assumptions and gave advice long before she got the full context. And here’s where my greatest concern with behavior specialists is – They come to quick conclusions and give advice more than they ask questions. My understanding of the qualifying test for a behavior specialist is that it consists of an enormous number of questions to answer in a very short period of time. That’s how they work. They come to the answer quickly and make sure it fits the behavioral model. It may not fit the mental health model. They understand human behavior much better than they understand mental illness.
One of the most significant examples of mental health not squaring with the behavioral model happened a little over a year ago when Ms. Supervisor changed Naomi’s school hours. I explained that sleep deprivation would surely ensue if her hours were to change. We had seen sleep deprivation result in behavior so bad that she was prescribed anti-psychotics. Her response was “She needs to learn to ask for breaks if she’s sleepy.” Thinking about that one still gets me! Yes, I hold grudges!
I told the behavior specialist about Naomi’s uber-attachment to nail polish. Nails have to be done every day. “She may agree to not do them temporarily,” I told her “I really believe she wants to follow through. But when the rubber meets the road the idea of going to bed without having her nails done gives her enormous anxiety. ‘Nails! Nails! Nails!’ She’ll say. She’s not just being a brat. It’s just that the nail polish has a hold over her that she can’t resist.”
“I know it’s hard,” she said “but once you’ve told her ‘no nail polish’ you can’t go back on that.”
“With that level of anxiety she won’t sleep all night,” I said. “And aside from the fact that sleep is essential to her emotional control, I don’t think it will work. Everything I have read about OCD is that you can’t discipline it out of a person.”
“You have to teach her coping skills,” she said.
“What are the coping skills?”
She went on to describe hugging a pillow or stuffed animal. This really didn’t seem like a reasonable answer.
As I told the behavior specialist about other difficulties, it was clear that she thought that maybe Naomi was being a brat. Maybe she is. The thing is I don’t know and neither does she. My maternal instinct says she’s not. I see her trying to fight herself all the time. “I DON’T WANT TO PULL HAIR,” “TOO MUCH NAIL POLISH. NO DOING NAILS.’ “TOO MUCH GRABBING!” “I’M ALL DONE TOO MANY THINGS!” I honestly believe that if she could articulate what she is going through she would say “I understand and I really want to do what you’re asking, but my nervous system is fighting me on this.” I don’t know that Naomi feels like she’s going to die if her nails don’t get polished, but judging her reaction, I wouldn’t be surprised. Forcing her to do so may be like torture to her. Mental illness is not logical. It doesn’t always fit the behavior model. Every day I see Naomi trying to accept changes, trying to work within limitations and she just can’t win over the struggle. She is well aware of where our difficulties are, I really believe she wants to overcome them, but knowing what they are and struggling with them only brings her more anxiety. It doesn't help her get past the problems. We need someone that understands OCD better than they understand typical behavior. We need someone that can help us make transitions with more effective strategies than hugging a pillow.
I’m still going to agree to the 90 day program. Why? Well, that’s all we have access to right now, and it’s clear that we need help. She may give me a few pointers I can use and maybe I’ll be pleasantly surprised by under understanding of mental health. Also, I figure it will be good for the rcounty record if the paper trail shows that I tried. Still, I don’t have the blind faith in the wisdom of a behavior specialist anymore. I’ll still be looking for other avenues of help and support. I just felt the need to write my doubts down and prepare myself for what may end up being more lectures on putting my foot down and being in 'control.'

Wednesday, October 28, 2015

What’s Love Got to Do With it?

It's been ages since I've posted anything on this blog.  I usually just post on my facebook page these days.   This one has been on my mind for awhile.  I'm just finally writing it down. 

The question comes up every now and then on Autism Facebook pages – If there were a pill that could cure your child’s autism, would you have your child take it?
Some people say “YES!” Some say “NO!” Some say “I’d like to cure some variables, but not others” and some say “It depends - would there be any side effects?” All legitimate answers
Then there’s the answer that gets me “I love my child just the way he/she is.”
The implication is that anyone who wants a cure for autism doesn’t love their autistic child.  WRONG!!! The other implication is that the purpose of a cure would be for our children to be loveable to their parents.  WRONG AGAIN!
For those of you that wouldn’t want a cure, I get it.  Though I’m not one of your tribe, I can truly imagine that there would be a ton of things I would miss if Naomi’s autism were to go away.  I imagine her energetic, happy dance wouldn’t be significantly toned down or may disappear altogether if there were not autism.   Her taste in wacky hairstyles and funky jewelry would change.  In many ways she’d lose her innocence, and we’d probably lose our closeness.  She’d probably ditch me in favor of hanging out with friends at the mall. There are probably many things I haven’t even thought of that would change if Naomi’s autism were to disappear.  I would miss many of them deeply. 
But here’s the thing - I’m not the center of Naomi’s universe. – A mother’s love is a wonderful thing, but it’s not the be-all and the end-all.  I love my mother dearly and I am extremely grateful for her love, support, home cooked meals and financial assistance. But was her love all I needed to offer me a satisfying life?   In a word “No.”   When I look back over my life thus far, my mother wasn’t there at the most thrilling moments.   Don’t get me wrong, she celebrated with me and is still a wonderful audience for my rants and stories.  But in the moment itself, she usually wasn’t there.  The most thrilling times were times when I was at my most independent – allowing my inner guide to be the leader – taking risks while no one – at least no one who had any particular concern or interest for me–  was watching.  I want this for my daughter. Not because I will love her more if she has these experiences, but because I believe it will improve her quality of life.  Several things that we generally refer to when assessing quality of life are impeded by her autism - a romantic partner, a satisfying social life,  a good job with good pay and significant control and choice over their environment as an adult, to name a few factors.   In general, loving her will not make up for the absence of these things in her life.   I still have hope.   I realize there are many autistic people with a high quality of life by anyone’s measure.  But at this point in Naomi’s life, any reasonable person may see that autism is a huge obstacle to obtaining the quality of life that we all want.   I want a cure for autism because I love my daughter, not in order for me to love her.
And even if my love were all she ever needed… Some day I’m going to die.

Wednesday, March 25, 2015

Respecting People Just Because They Are…

“Did you see that pink letter?”  My hair dresser asked while washing my hair.  Of course, she was talking about the infamous hate mail that was sent to a family of a child with autism in New Castle, Ontario.  She continued. “Obviously, whoever mailed it hasn’t heard of people like Temple Grandin or John Elder Robison,“  I just acknowledged how awful the letter was while ignoring the reference to Temple Grandin.    It was another example of something that I’ve been hearing a lot lately.   When hateful and hurtful things are said about people with autism, some think the best way to defend them is by bringing attention  to the intellectual and accomplished people with autism , rather than simply pointing out how all people deserve respect and it’s reprehensible to deliver vicious, nasty insults.

In various cases when people with autism are put down in one way or another (often by using the “R” word),  I’ve seen many respond  with statements like “My son is autistic and he has an IQ of 180.”  “My niece is autistic and she is going to college in the fall.”  And even “You are the one who is retarded! ”  I want to ask these people, “So if your son had a low IQ and your niece didn’t make it into college, would these nasty, hateful things be any more acceptable?” “By labeling someone who is vicious, hateful and shallow as ‘retarded’ aren’t you really insulting those that had a diagnosis of being ‘mentally retarded’ and therefore, adding insult to injury?”

 If there were no Temple Grandin and no John Elder Robison, that pink letter would be no less offensive.  I understand the desire to recognize the achievements of people with disabilities, but in the face of hateful attacks, this is not the time for one-upmanship.  We simply need to stand together and say “This is wrong”.   We don’t care how many or how few accomplishments can be referred to, it’s still wrong.  Making it about intelligence levels says “Hey, it’s justified to talk about some people that way, but not about  us!”  Nobody deserves to be referred to so hatefully, regardless of their IQ, their level of education, or even their lifetime achievements.  People deserve respect just because they are living, breathing beings. 

Wednesday, December 17, 2014

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.

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.

Friday, December 5, 2014

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.....