Having had a downright, dreadful experience at our daughter’s ABA based preschool that was publicly funded and had come highly recommended, we were determined not to make the same mistake twice. We found a private school, the only non-ABA based school around at that time and for the next six years she went to it. She was loved, she was well taken care of and she learned almost nothing. It wasn’t that no one tried to teach her, it was that the way she was being taught was not a way she was able to learn. So we hired a private literacy specialist and over the next two years, Emma learned to read and write. But there was a “behavioral” piece to this person’s program that came at a cost. I don’t mean a financial cost, though there was that too, I mean a different sort of cost, the kind you can’t completely assess or gauge until years later. It was the cost that comes with being put into an emotional strait jacket. So, at a certain point, as I learned more about autism from Autistic people I realized we could not continue, despite her terrific gains in learning to read, write and type.
A year ago we found a public school (most no longer adhere to any one methodology, thankfully) where Emma is loved and well taken care of AND is learning. Her teacher is wonderful. The kind of teacher all parents dream of for their child. Loving, patient, kind, observant, respectful, presumes competence of all the children in her class, smart, has a sense of humor and open to anything that may prove helpful in teaching. The sort of teacher who takes time out of a Sunday afternoon to sit in on a session with Soma Mukhopadhyay and Emma and takes notes and then asks to borrow books written by Soma on her method. The sort of teacher who then comes over to our house to do a strategy session and begins to incorporate what she saw and has learned into her teaching. Suddenly Em’s backpack is filled with material from a grade level curriculum she is now doing at school with this amazing teacher. The sort of teacher who seems too good to be true. The sort of teacher you wish you could clone… The sort of teacher who is better than Xanax, Wellbutrin and Prozac without any of the side effects. Except that the school year is almost over and this amazing teacher is leaving to teach somewhere else and Emma is entering middle school, so we must say goodbye to her wonderful school and her incredible teacher.
This morning we toured a middle school. And guess what? It emphasizes the performing arts AND it looks wonderful, with a fantastic sensory gym and a “theatre room” with photos lining the hallways of the children performing their own musical that they wrote and performed in. Could we have created such a place more perfectly suited to Emma? It could be a little closer to where we live, but that would be nit-picky of me. So come this September, Emma will go to yet another school. That’s three different schools in three years. For any kid, that’s a lot of change. For Em, who was such a trooper about her “new” school last September, I am keeping my fingers crossed the transition will be as positive. Anyone have a cloning machine perfected? Because if her current teacher could just be cloned and her head teacher in this newer new school, I’d have no stress at all!
In the meantime, Em will visit her “new” school a couple of times over the summer months. From what we’ve seen so far, we are filled with hope!
I have no doubt that your instinct, steeped as it is in respect for your girl, has led you to the right place for her. None.
Jess – I’m going to hold these words of yours close when I start feeling that familiar wave of stress heading my way…
Performing arts! Yeah! Super flappin’ mega bounce with a twirl!
Oh Ib… you have no idea how much I thought of you this morning. It was as though you were invisibly by my side. AND Nic is SO bummed you aren’t coming to visit us in July… It was so good for him (and ALL of us) to hang out with you. (((Ibby)))
NO KIDDING, RIGHT?!
Theater skills=life skills.
Wonderful news! Best of luck with this new adventure. It sounds so perfect for Em, and I can’t wait to see how it all works out. ❤
Thank you Chou Chou! They pretty much had us when the principal said, “We are a performing arts school…” 😀
It is awesome that you found Emma a middle school that fits her needs. Sounds like she will love the sensory gym and the performing arts piece of it. I hear ya on the worry part, though. We are sending Nathan to school for the first time this fall. High stress!
Oh Beth, I know the feeling. Wishing you guys lots of luck with Nathan’s new school! We were so worried last year at this time and then Emma ended up in an amazing class with a teacher who is better than anything I could have dreamed for and now we are so sad to be leaving! Such a great reminder that stress and worry are not based in fact.
I feel this way about my girls’ para. She is everything you describe, plus she is quiet so my girls don’t get overwhelmed by her very presence. It is nice for them not to have to “get used to” some one right off the bat. How lucky for Emma to have had her, and at least now you know what to look for!
Thank you Jessica. How wonderful that your girls have a terrific para!
Thank you Katie’s dad she loves emma
Aw…. Katie’s dad!! Thank you so much for leaving this comment here for me! Katie is beyond our wildest dreams. She is everything and more anyone could hope for in a teacher and human being. We are so grateful to her.
This piece really touched me in a very personal place. As you know (or may not know) I have elsewhere observed the cost of that emotional straightjacketing (so well phrased). So thrilling that Emma has found a wonderful teacher and a great school. May I ask where she is attending?
Lindsey – okay to email you about this privately?
She/he sounds like an amazing teacher I think it’s essential that teachers focus on what a child can do instead of what they can’t do whether the child has a “disability” or not. I hope Emma adjusts well to her new school.
Me too, Nisha!
Have you written about these schools? I am curious to what made you realize the ABA school wasn’t working. I am wondering how you knew she was loved at the other school, but not learning? I am wondering if this is more from your “gut” or more factual. I feel like there are no choices (educationally speaking). Our son could go to K this year, but he won’t stop punching his head. It’s distressing to say the least. I don’t feel a public school would do better than his current program(aba). But, they also don’t have answers…leaving me to wonder, how have parents like you traveled down this road? I know I am not alone, but the answers are not clear.
Thanks for your comment.
I have written about Emma’s ABA based preschool where she actually began to regress, or as the principal put it, “her lack of progress is a red flag”. As far as the other school, it was clear she was taken care of and loved by the many communications we received by her teachers, but she was not learning to read or write or given any real academics. This was not a “gut” feeling, but based very much in evidence.
As far as your son goes, (I know this may sound incredible and even ridiculous) but I cannot tell you how many times I’ve been told about kids and adults who head bang who had head lice, suffered from migraines, or inner ear pain due to the changing air pressure outside. A number of these people were also non-speaking and so they went for years being forced to wear helmets (on top of head lice!) and untreated migraines or ear problems because their head banging was written off as yet another “behavior”.
Personally I am not a fan of ABA. I have yet to witness first hand, it being used while respecting the child, while presuming them competent, while assuming intelligence, while not judging autism as an inferior neurology, to be “trained” away. I believe a presumption of competence is a basic human right and any methodology that does not have this as the foundation of their method is not serving our children. I’ve written more about this here – https://emmashopebook.com/2013/05/14/parenting-presuming-competence/ and about ABA and our experience with it here – https://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/
I hope this helps!
Thank you for your reply. I am “banging my own head” trying to find out why he is doing it. I have taken him to numerous specialists and drs, with no answers. I worry so much about it being an underlying medical issues. I know it’s not lice, but how would someone know if a (more or less) nonverbal person has headaches or stomachaches?
If you don’t mind…I am going to give you more info. I respect your point of view.
It started as a gentle head nod when he was somewhere between the ages of 2-4. But, by the time he was about 5 it back a forward self inflicted whip lash and was specific to riding in the car. Our ABA program failed us (and OT) by never coming out to observe the behavior. This has more or less gone away, but now he does a variation of this outside of the car. The nod became harder and he has gotten more aggressive throughout the last year. By Dec, he started to slap himself. It decreased and started up in March. At some point, he was started to bruise his chest and chin from the constant banging of the 2 together. He eventually started to use his hand. That went from a slight chin-to-fist, to a hard, intense non-stop punching. He has opened his face. Once that happened, he started to punch his head. Causing half of his face to be bruised. He has now moved up to his skull. While I assume he will not bruise this area, he is starting to hurt his knuckles. Of course, in the last few days he has moved back to his chin (because it has healed).
My next step is the dentist.
As for ABA, you are right. I seriously doubt most/all ABA providers do what you suggest above. But, I would argue if anyone does. Websites like yours will continue to help the world re-frame autism. It’s going to take some time.
Thanks again for your response and if you have any ideas about my son’s behaviors. I now work with 2 ABA providers and am on the edge to simply get him some sort of meds. I can’t live with a boy who can’t stop punching his own head. I can’t ignore him. I can’t restrain him forever. I am besides myself. Anyone with ideas? I am besides myself after a year of self-injury. It’s too much.
(Hypoglycemia is another thing that can cause inner ear pain. They will tell you it can’t. It flipping well can.)
I hope you don’t mind, I’ve reached out privately to a couple of friends who may have some good hands on, personal insights into this. When I hear back I’ll let you know.
A couple of my own thoughts about your question regarding how can we know if a non-speaking person is suffering from a migraine, ear issues etc. We can’t, but we can ask questions, such as – “Does your head hurt?” or “does a part of your body hurt?” If yes, a follow up question might be – “where?” “Can you point to the place that hurts?” or “can you show me what hurts?”
A friend of mine told me her child didn’t tell her for years about a traumatic event because the parent never asked the “right” questions. This can be a moving target…
I’ll get back to you with any other thoughts.
Thank you kindly. You can reach me at https://www.facebook.com/pages/MNAutismMom (and private message me from there) – Thanks for your help. I have been reading your blog for awhile now.
My friend Michael (he told me it was okay to use his name) wrote this – “I can’t be too prescriptive, because I don’t know the exact circumstances, but for me this behavior was always related to stimming. I did it when I was overwhelmed, too overwhelmed for finger-drumming or anything else to work. I did it because I needed the focal point of the pain in order to have something to latch on to.
I’d suggest looking to his schedule and the demands placed on both of their time. Making room for him to be able to just unwind, not be around people, pursue his own interests (even when they don’t make sense to her), etc. might help.
She said she’s working with 2 ABA providers–it could also be that there is some incongruity between what they ask him to do that is creating cognitive dissonance, or some incongruity between what he wants/needs and what he is allowed. I know that’s dangerous territory to get into when I’m just speculating, and I don’t want to make too many assumptions about someone I don’t know, but it might be that 2 is too many.”
Michael wrote a really great book, Nothing is Right – https://www.createspace.com/4045078 – which is a work of fiction, but is about a boy named Clay who is Autistic. That book has one of the most memorable self injurious scenes I’ve ever seen depicted anywhere, ever. It makes something that to an outsider seems incomprehensible, understandable. He also has a blog http://www.mmonjejr.com
I’ll let you know if I hear anything else…
I just wanted to update you. The home ABA provider has helped us create a visual communication binder to show him what is coming next and is coming in daily to train us on how to use it so it’s helpful and not creating more frustration or pain for him. They also came up with a brilliant response to his hitting that is ethical, responsible and easy to implement. His hitting decreased immediately. Thank you so much for reaching out to other people for thoughts and opinions. After a year of it getting worse, it is finally getting better.
So one more comment from another friend of mine, who asked to remain anonymous for personal reasons… she said try to alleviate the frustration by watching for signs of frustration and sensory issues and seeing if it is occurring more frequently around any one person or during, before or after any particular type of therapy. Try to see if there’s a pattern, this will require you observing and making notes.
Another friend of mine said head banging is almost always the result of frustration and trying to control the enormous frustration and feelings of powerlessness felt. Non-speaking people, for obvious reasons, will feel tremendous frustration by the very fact they have so few ways to communicate what they are coping with. Finding alternative ways to communicate will always prove helpful. Can he point? Can he spell? Is he able to point to letters on a stencil board? Anything that will help him communicate will reduce at least some of the frustrations he is experiencing living in a world where he is most likely misunderstood a great deal of the time.
One last thought – it was suggested by another friend that he be encouraged to find other ways to get the same sort of stimulus he now gets from head banging, things that will not do him damage such as listening to loud music while whipping his head around – think loud, crazy mosh pit.
I know that may sound crazy, but this last suggestion is something we do at our home. My daughter loves music as loud as it can be tolerated by the rest of us and then whips her head up and down over and over. Jumping on a trampoline was another suggestion. Jumping on a trampoline aggressively is a terrific work out as well!
I’m going to send you a private message as well.
Hope all of this helps, at least a little.
I am so happy for you!
You see as a teacher…I strive to be that teacher for my students and as a parent of a 2e boy I pray for a teacher that “gets” my son.
For 2nd grade, we had a great teacher. She didn’t let my son’a struggles define him and everyday was a fresh start. She celebrated his strengths and it was obvious that she cared for him.
As imagined, I cross my fingers for another good teacher. The 1st grade one was SO horrible ( and I truly hate to say that about another in my profession) but she sucked his confidence and soul and left him thinking that he was a bad kid.
Have a great summer and congrats on what sounds like a great place for the fall!