I have been trying to decide what to share with regard to my observation day at Evie’s school. I’ve decided to post my email to school because I am interested in sharing our journey with the community–possibly saving another child some of the pains that I believe that Evie has suffered. As a parent, there is a vicious learning curve and maybe my fumbles will serve as lessons/warnings to other parents. I am interested in holding the school accountable both to Evie and to the community. But really, selfishly, I am most interested in saving my daughter pain and sharing on my blog has been eye opening and door opening. So that’s what I am doing…here is my email:
Thank you for letting me share the day, on Thursday, with Evie. I know that it is difficult to have someone watching while one does her job. I also realize that my presence was disruptive of Evie’s day. I wanted to share my observations with you.
I really like how Evie’s day is structured. I am very happy with each segment as I think all of them have value and are on par with the goals that we have been discussing. I was particularly pleased with what I saw during speech with S. Specifically, I like how S made adaptions, on the fly, based on how Evie was reacting–like recognizing that Evie was focused on having the DVD taken away and allowing her to keep it longer so that she would be more receptive to the picture exchange.
Additionally, I am over the moon with both of Evie’s paraeducators. I have always been pleased with S. MK is also excellent with Evie. They both have a demeanor which is very suited to Evie. Please pass along my compliments and appreciation of the wonderful job that they do with Evie.
I am very impressed with the independence that Evie is exhibiting at school–pulling her backpack, carrying her lunch sack, selecting her own snack from her bag, and selecting her milk. I was also happy to see how well Evie is eating using utensils at lunch with S. This is very good progress and I see that I need to have higher expectations of her at home with regard to eating and independence.
I also like that Evie seems to be attending to her visual schedule, somewhat.
I couldn’t believe that Evie sat for the entire story time with her class after recess–and that she seemed to enjoy it. Evie stood in line with her classmates after recess as well–which MK said she doesn’t normally do. I would like to see her work towards doing this on a regular basis. I also would like to suggest that the bathroom time immediately following recess be eliminated/moved so that Evie can stand in line and then attend the full story time with her classmates as tolerated.
There were several things that are of great concern to me. The first being, as I emailed M, that Evie was not offered a single ounce of water the entire day. She did have milk with lunch which she did not touch. This is, certainly, not a new concern for me as we have discussed it quite a bit in the past–where I said that water needs to be available to her at all times. When I had to pick Evie up last week when she was sobbing all day, I emailed M after and let her know that Evie guzzled water when she got home–sharing my concern that thirst/dehydration may have been playing a role in her discontent. Evie was truly happy once she was out of school. M had emailed that next time she would make sure water was offered.
Not giving Evie access to water endangers her health. Further, it is not good for her mood. I am really upset that I have to continue to reiterate the importance of water being offered to her as this is a basic human need. In the afternoon when Evie was washing her hands, she was trying to drink from the faucet and MK was telling her not to drink that water. However, she was not offered water even upon exhibiting obvious signs of thirst.
This is an extreme example of what I mean when I say that it is dangerous to label all of Evie’s negative reactions as protestation behaviors. Her very basic needs are not being met. Being thirsty can affect her mood, her stamina, and her ability/willingness to participate in her education. We need to fully understand why Evie is flopping before we assume it is a behavior. Until Evie’s communication needs are being met, I am even less willing to have anyone make assumptions after seeing what I did with the water.
Another example is that I observed Evie batting at her head and fussing. When I looked at her scalp, she had a psoriasis patch which was obviously really uncomfortable. I don’t expect staff to pick up on every single nuance with Evie that I do as her mother, but again, the assumption cannot be made that she is simply protesting when she may have a physical ailment that is affecting her. And again, until Evie’s communication needs are met, this is going to be impossible to know.
The Evie that I saw at school Thursday was nothing like the child that I see at home. Certainly I realize that my presence played a role in that. I also realize that I have less demands on Evie at home. However, the way that I deal with “flops” is far more effective. I understand that J feels that ignoring flops is reinforcing to Evie’s “behavior.” I whole heartedly disagree. At home, Evie flops very infrequently, maybe once or twice a week at most. And they never turn into the all out meltdowns that I saw at school. They last seconds. I consider her flops to be communication and her only way to let us know when something doesn’t feel good or that she is frustrated. Until her communication needs are met, it is unfair and it is dangerous to assume otherwise.
The way that I saw flops dealt with are still not consistent with what I have asked to have happen. When I saw them at school, there was, immediately, a hand right in her face. I had intended to keep my comments to myself, but I did share with both S and MK that they should take a step back, wait until Evie calmed down a bit, and then offer a hand from the step back, not in her immediate body space. I can see that what I observed is an ingrained habit as even after my suggestion, it was their automatic response. I am not blaming them for this but I am insisting that this change.
I observed that the hand in the face was too quick and too invasive. As soon as it appeared, Evie became more frustrated. If what J says is true, that not immediately reacting is serving to reinforce, then I believe that we would see more frequent and intense flops at home than we do at school. From my observation and from the flop journal, I see that the reverse is true. I think we can all agree that it is best for Evie to come to the decision on her own that it is her only option to rise–sit there or get up. From our experience at home, she always does come to that conclusion quickly.
J had mentioned at our last meeting that Evie, sometimes, becomes aggressive when she flops–biting at people’s legs, etc. Evie never does this at home. This tells me that the way that school is approaching flops is not effective and very frustrating for her as she is not by nature an aggressive child.
The other thing that I noticed was that Evie would put her hand in her mouth and have it quickly removed by paraeducators and M. M said the reason was that it gets messy. I recognized that she did this when she was frustrated and that it was a coping mechanism. I do not want her coping mechanisms, which are safe, to be thwarted. I can send in some hand sanitizer if this is a concern. In my research, I have learned that many adults utilize chew fidgets instead of their hands. I can purchase and send some in for Evie.
There are several things that I would like to recommend to help Evie. One is that she be given access to bubbly wrap or something crinkly to help mitigate frustration and to ease transitions. I think it will help to soothe her and could make her more available for learning. I realize that we don’t want whatever she has to be distracting, but we do want her calm and I think this might help. I also think the use of holding hands would be effective both in preventing flops and establishing relationships. At present time Evie communicates a lot with her hands–she uses hand holding to both guide and be guided. Since this is her only form of communication at this time, I would like to see us maximize the use and would like to discuss this in greater detail. I think the RDI is a great idea–I think incorporating some physical play would be effective. We can also discuss this at a future date.
When I was observing Evie, I was alarmed to hear a staff person say to child, “Child, are you going to have that same haircut for your whole life?” I am not misunderstanding what she said because she repeated to J as J thought the question was directed at her, not Child. I found this to be incredibly inappropriate and possibly reflective of a climate where children are not, in general, respected–given the fact that this was said freely, twice, while a parent was in the room. It leaves me to wonder what kind of things are said when there aren’t parents in the room and I am gravely concerned by these thoughts. I told Child‘s mother, what I heard because I would want to know and because I believe that the responsibility belongs to everyone to guard against bullying by children and adults alike–especially where vulnerable people are concerned.
Through my research about Autism, it has come to my attention that many adults are emotionally scarred by experiences where they were where subjected therapies that demanded quiet hands, eye contact, and cessation of self-stimulatory behavior. I recently read a book, which I would be happy to loan to anyone that might be interested reading it, called “Loud Hands.” It is a collection of essays which include discussions on what these types of therapies. As such, I was taken aback by the many posters I saw in the school about “Whole Body Listening.” Having developed awareness about these experiences, I know that I don‘t want Evie to be subjected to the same approaches and encourage the school to consider that these approaches may be detrimental to Autistic people.
Evie has impairments that are co-occurring with her neurology. She is also, very much, disabled by her environment. I want to reiterate that she needs appropriate supports with gaining skills that respect her as an individual, help her to cope with her environment, and achieve the ability to communicate. Evie is an individual and needs to be treated as such. There is no one size fits all approach to helping her achieve her goals. What has been employed. thus far, has achieved limited progress. We need a different approach and I insist that this approach not be disrespectful or rigid.
Approaches to working with Evie’s behavior and reactions should not ignore the underlying motivations, demand robotic response, be aversive or teach automatic compliance.
I am not alone in my thinking. DIR/Floortime is a widely accepted therapy which is far more respectful of individuals. I was very happy to hear that J has training in this model becuase I find that much of what is said resonates with me and that I think that parts of it could be used successfully with Evie–this article has information which I find particularly valuable. http://www.communityresourcesforautism.org/matriarch/documents/Floortime%20Information%20Packet.pdf
I feel like my input is unwelcome and resented often. I am certainly not an expert on Autism. But I am the best expert on Evie. It feels like there is a reluctance to depart from the approaches that have been mostly unsuccessful thus far. I feel the lack of success is due to the fact that Evie’s needs as an individual are disregarded in favor of adhering to rigid practices. In my reading, I have encountered many experts that say that not every type of intervention is for every student and that individual differences need to be considered first.
If you’ve gotten to the end of this, I am impressed 🙂 Thank you.
This is so hard for me to read – just as a parent. Terminology and instruction that focuses on behavior – that is what our response as a society and in educator – and it is wrong. It makes us believe that the problem lies within the child/person – not the environment – and that their behavior is wrong – not that they are communicating that they need supports. I’m sorry you and Evie are having to go through this. I hope as a community we can change these beliefs and I hope your message gets through to them.
I couldn’t agree more Brenda. I think your blog and essays will help to change these beliefs. I just wish it would hurry up mand catch on already!
I couldn’t agree more Brenda. I think your blog and essays will help to change these beliefs. I just wish it would hurry up mand catch on already!
This is amazing!!!
I can’t believe they wouldn’t offer her water all day. Do they not make sure that ALL the kids have a chance to get water sometime during the day? We got at least 2 water fountain trips per day when I was in first grade.
Being disabled by your environment is also such an important concept. I hope they get it….
Yes, Emily. It was amazing…in the most awful way. I am the type of person that thinks that water should not be restricted at all for anyone. Meaning when I think back to my two water bubbler visits a day in grade school, I think, not good enough. I hope they get how her environment is totally disabling her too. But my hope is running thin when it seems like the most elementary concepts are missed.
The part about water has actually triggered a memory for me, of how often I asked to be excused to go to the bathroom, simply to drink some water. I think I didn’t dare ask to get some water, for what reason I can’t remember. But I do remember guzzling water on my bathroom visits. I have never liked juices or sodas or milk, only tea, watered down syrup, and water. I still get a lot of remarks about the amount of tea I drink, but I’ve learned to shrug them off because I get very fractious and unhappy when I don’t drink enough.
You are so awesome!! I want to hug you. I want to hug your girls! One day I swear I want to meet you!!
Thank you Tina! I would love to meet you and your crew too 🙂
How is not offering water even legal? Here now I noticed all kids actually have waterbottles at their desk but a child who may have trouble noticing they are thirsty and need prompting would get it if needed as during the hours the child is in the care of the school they are responsible for health. (although as someone with 24 years of doing respite care behind me I know how far short of the mark even a shool that seems to be taking the right steps can fall)
I don’t know if it is legal or not…I’m assuming it is at least negligence but I have no legal background. I am surprised when I think back to the days pre-water bottles where there were designated drinking fountain times and water was not permitted in between. My daughter currently has almost zero communication so she definitely needs to be offered and prompted to drink.
If she needs to be prompted they need to prompt here. She has the right to an appropriate education and being dehydrated every single day doesn’t seem appropriate.
I have been hearing this a lot and experiencing some of these same concerns about basic needs not being met, my son has other disabilities, but communication and basic needs are something everyone should have met. Sad that it not practiced in the way that it needs to be. We do know our children and what they need.
I’m sorry to hear that you are experiencing these same concerns. It is frustrating and scary to say the least. I am at a place where I just don’t know how to make my daughter’s school listen.
If you find a way please share with us. I have various people helping me from outside the school but yeah getting the school to listen and follow my sons needs is another story. I am hearing the same thing from parents that don’t have a child with special needs but still being denied basic needs like water, nurses office, bathroom, food in some cases. Good luck. I have been following your blog for a while I enjoy hearing about you and your family…love the way you talk.
I just realized that you are local to me–when I saw your name pop up in my email on the VFN Listserv. I can’t tell you if it works yet, but we are starting the Act 264 process on 4/16. If it doesn’t, I don’t see any other option but to pull Evie out of school and start homeschooling. I am not really comfortable doing this for many reasons…but it is better than the alternative.
Yes I am fairly local, in central VT, but I go to FAHC often. I have also thought of homeschooling, but then I look at my kiddo and know that socially for him that would hurt him because he is so social and I am a single parent with him as my only child, his interactions would be severely limited. So I am fighting for what he does need and deserves to have…hes nearly 13 and I have never had to fight with a school or really anyone as hard as I have since returning back to VT in past couple years. Very disappointing. I have not heard of Act 264 what is that? I would be interested in talking to you further I use yahoo messenger, the email these come to is the screen name if you use it and would like to add me.
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Sorry that happened. 😦
Loud Hands is a wonderful book.
You’re a true warrior mom (and not the Jenny Mccarthy kind).
I found your blog by Googling “Alfie Kohn opinion of ABA for autism” and I finally found what I have been searching for. I think I read your entire blog from start to finish and what’s better have discovered a whole community that respects and accepts my son’s neurology and his individual self.
I am really writing right now because I am in need of some advice on public school. My son started kindergarten last week and only enjoyed the 1st day when parents were welcome, after the second and third days on his own he has refused to go back. How do I submit a question for the PACLA Facebook group?
Thanks in advance and thank you so much for sharing your insights with the world, they have been more valuable to me as a parent than anything else I’ve ever read.
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I’m saddened to hear about the problem with water accessibility, but I am not shocked. I was halfway through high school before my school adopted a “water policy” of installing fountains and allowing us to have a bottle of water in the classroom. Before that, we had to bring water from home, or do all of our drinking at lunchtime, or fill bottles from the sinks in the restrooms. Before highschool, our only access to drinks was what we were given in packed lunches or in water pitchers at lunchtime. I can’t imagine how a whole generation of kids managed when we were so clearly dehydrated. I, too, used to guzzle water the moment I got home.
All schools should be adopting a policy of allowing (even encouraging) children to have a water container with them at all times, and that they have access to a water source to fill their bottles at regular intervals during the day. Dehydration and hunger are the main contributors to me “flopping” as an adult. I become dizzy, weak, lightheaded, and just have to sit/lie down, even if I have to sit on the pavement somewhere.
If Evie can use a drinks bottle, I would strongly suggest sending her to school with it full. It will serve as a visual reminder to staff, and if they allow her to select snacks from her lunch bag, she should have access to it regularly. At least then she’d be getting some water rather than none.
There are lots of different bottle designs, so I’m sure you’ll be able to find one with a closure that she can work without help.
You’re doing brilliantly. It restores my faith in humanity to see that you’re so strong and you’re advocating for your daughter so confidently. That you’ve listened to the voices of Autistic adults and taken all of that in and that you’re actively using it to improve Evie’s wellbeing gives me hope that we can turn perceptions of autism around.
Keep up the good work, and good luck!
I love reading your blogs! I’m a second year OT student based in Perth and have a keen interest in working with people on the spectrum. There is so much pressure on kids (or people in general) to conform to society’s expectations and norms and it’s awesome to see how much you advocate for your daughter. I hope I can do the same for the people I’ll be working with as a future OT
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