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.
Beth