I believe that often we meet people and help them because it is the right thing to do. And you shouldn’t expect anything in return. But when that does happen, it is usually a really good thing.
I had the privilege of being able to help out super-teacher Vicki Davis (The Cool Cat Teacher) in 2007. We have been in professional contact on and off over the years since then. She has done some amazing things: Writing some books! Training some teachers! Being invited to Edutopia and Skywalker ranch! Raising some kids! Teaching!
I’ve occasionally heard some parents of typically developing children (and politicians!) criticize our community with statements about how it isn’t really that different to raise children with disabilities. That we should stop complaining and positioning our children as “special.” Children are children after all.
Well, yeah, children are children. But let me share two things I learned about just yesterday to illustrate how different life can really be for us and our children. These are two events I learned about in just one day that illustrate the range of things that occur in our families that may not occur in others.
Ellen Seidman recounted on her blog Love That Max a story about her son Max, and his ability to for this first time, this year, sit through an entire Passover Seder. And even communicate that he enjoyed it and wanted to do it again. The post recounted her sheer joy as a parent in reaching this milestone.
Sure, typically developing children may have myriad challenges at family dinners and events. But in most typical circumstances, the issues surrounding holiday meals usually don’t involve a child not being able to participate at all on a regular basis, and don’t require the full attention of one or more caregivers to help the child through the entire event.
Helping our young and adult offspring with disabilities participate and interact and enjoy—and have our families enjoy with them—is sometimes something that is all but impossible. And it is something that, when it happens, is worthy of extreme joy and thankfulness!
The Hospital of Doom Yesterday my friend Samantha (not her real name) shared with me her tween-age daughter’s experience in her latest psychiatric hospital visit. The child was in the hospital due to violent outbursts and causing harm. At this hospital, and remember this is 2000 and freakin’ 14, there was an 8 minute lapse in direct supervision of her shared room. And she was accosted by another female patient for up to 8 minutes while a caregiver stood outside the door to the room either unknowing or ignoring the issue. Either way, unacceptable!
Samantha, already at the end of her wits caring for this child, raised quite a stink (of course!) but was presented with block after block from an administration only concerned about legal ramifications.
The child, at the hospital to adjust medication and get help, got pushed further into crisis because of this attack. And Samantha is worried about pushing the issue further because she is worried about staff possibly taking it out on her daughter. Change hospitals you say? There are no other hospitals in that region. Bring her home you say? Eventually, but what about safety for herself, the child, and the rest of the family?
Intractable problem? We shall see what transpires as our thoughts are with Samantha. Do you have practical suggestions for this mom? Know someone at the federal level who can intervene and help her overcome these local yahoos intimidation? Private message me or comment below. I’ll share with Samantha (again, not her real name).
Share these two stories when you need to
So, the next time you hear a person belittling our community of parents and young and older offspring as “whining” and wanting “special” attention, please remind them of these stories. We don’t want “special” attention. We just want to live a minimally happy and safe life, just like everyone else.
I believe the word “compliance” is misapplied in our special education system. Please let me briefly explain my thoughts and perspectives about this opinion. This piece is based on observations of my 14 year-old child’s various school placements over the years. And it is enhanced and supported (and the examples I used are blended with) other opinions and anecdotes I have read and heard about, especially those I have encountered on some autistic adult advocacy blogs.
Compliance definition from Dictionary.com
Three important notes: (i) Autism isn’t my son’s primary or only “diagnosis” issue in school. There are other complexities, although the impacts of the word “compliance” are still an issue. (ii) I don’t expect that everyone will agree with all aspects of this piece (iii.) I really think my son’s current placement is excellent and his teachers and staff know most of this stuff already for the most part and have reacted positively when I have brought up issues to them directly and with respect.
Compliance is a non-specific word
Much like the cloying phrase “good job” (well, at least it is when “good job” is expressed with an infantile sing-songy tone and no verbal specifics about what exactly was done well), the word “compliance” is similarly a non-specific.
An infantile, non-specific Good Job (a 'shortcut'):
A more appropriate, specific compliment said with respect (takes two extra seconds):
Similarly, I think “compliance” is a lazy shortcut term for something more important or more measurable or more relevant. “He was compliant today.” What does that mean? That he did what he was told to do because his spirit was broken and he went through the motions? That she did what she was asked to do because she understood why she needed to do something? That he was guided toward possible options and that staff and support folks helped him reach decent decisions about what to do or not to do?
If something was so, say it was so and what happened! It doesn’t take much longer at all.
Compliance is a term rarely used for typically development peers
Visualize your stereotype of a typically developing ninth grade high school student. In the example in my mind’s eye, she is in the honor society, a violin player, and on the swim team. Feel free to visualize your own example. Now, imagine that there was some issue at school with her (doesn’t matter what the issue is.) Can you imagine a report card coming home for this young lady with the sentence: “She is non-compliant 10% of the time.” What the heck would that mean? Or in a parent-teacher conference: “She is having compliance issues.” Or: “It was a great quarter. She was very compliant!”
See how odd that sounds? How inappropriate!
Compliance implies that conformity is of priority value
At the heart of the issue, for me at least, is that conformity is not of paramount importance. When I was in school, I was certainly a handful. I was certainly not a conformist. But I value an independent spirit. I want my child with complex special needs to be an independent spirit as much as possible too!
I really do get the differences
Let me be a pragmatist and let staff and specialists know that yes, I really do get it—that a youngster with severe behavioral and developmental challenges presents a completely different context than what I did in the 9th grade as a “typically developing” non-conformist student. Yes, a wide range of safety issues, educational challenges, language issues, socialization issues, school-expectation issues, and other issues are really different for students like my son then they were for me and for his current age-peers in a typical school setting. Things do have to be different for them and those that teach and care for our students who are not typically developing.
But different doesn’t have to include a measure of “compliance.”
Before this post turn into too much of a rant, I’ll cut myself off again and offer three specific examples that I think may illustrate just how easy it is to state and record things quickly that have much more value to wider teams (and family members) that need to understand goings-on at school when the students themselves can’t communicate detail.
Here are three examples I hope may address some of the issue I am pointing out.
Instead of saying “he was compliant when I observed him in class” say “I observed him participating with his peers and respecting their personal space with no inappropriate touching. In addition, he responded to the teacher’s academic and behavioral requests made of him, such as taking his turn at the Smartboard and ending the activity without a physical aggression when the lunchtime warning bell rang.” The latter tells a lot more about what he did in class and gives us a specific frame of reference to track improvements.
Instead of saying she was “compliant” in her bathroom reminders and training, say “When she was asked to try to go to the bathroom, she used a verbal response to indicate that she didn’t have to. Since she almost always responds negatively to verbal bathroom inquiries, and based on the timing of her last bathroom visits and accidents, we gently guided her to the bathroom and asked her to try for a minute anyway. She responded positively to this verbal re-iteration of guidance.” The latter tells us a lot more about her bathroom habits and expressive verbalization about said habits. And will help us come up with a plan to help her become better at expressing her need (or lack thereof) to use the bathroom and further reduce accidents.
Instead of saying “He was non-compliant when his group was asked to put on coat and gloves and head to the bus for a day trip” perhaps a more specific recording of issues would be of more value. For example, “He was really enjoying the morning activity prior to the bus trip. He really didn’t want to go on the bus trip, and did a good job verbalizing that, and clearly remembered a past trip when he was allowed to stay behind with a favorite staff member. Sometimes, we are able to accommodate and respect those requests. However, we didn’t have the staff to do so today, and explained that to him. So, we gave him some time to accept that, but we needed to help and encourage him to get on the bus anyway.”
Life is not about bending to the will of others. But students do need to listen.
Of course students of all kinds need to listen. For safety issues. For “rules” issues. For educational issues. But school is not a prison. Students do not need to be unbending robots. They didn’t lose rights by being in a special educational setting—any educational setting actually.
As we try to teach our students with severe special needs how to navigate the world, we need to meet each individual where they need to be met in helping them grow their independence to the best of their ability. But how can that happen if some teachers, some programs, some specialists are using “compliance” as a shortcut to the more difficult, sometimes more time consuming, but ultimately more important task of helping individuals thrive with as much independence as possible?
And, as I say in the intro to my book, “If there is unintentional offense in this post, please let it start or continue a dialog, not end one!”
Just when you start to inappropriately focus too much on the challenging things about being a dad, a person comes a long with a compliment and an idea that just makes your day and recognizes the hard work we do as Dads of Disability.
Today, in the snail mail, I received this letter and a jacket patch from a connection on Facebook I only met online and corresponded with probably once. This dad started a closed group called C.L.A.D. — Caring Loving Amazing Dads. And apparently, I ranked! Cool…
C.L.A.D. letter – Click to enlarge
Along with the letter came the C.L.A.D. arm patch. My first merit badge since I was in scouts!
The little things that some dads will do for other dads is pretty amazing. More about this in a longer piece at another time. I just had to share this with you!
If you are interested — and worthy — of being a member of the C.L.A.D. crew, please contact Christopher at firstname.lastname@example.org or private message him on his Facebook page https://www.facebook.com/christopher.sobel
I posted the final free selection of essays and poems from the book. This is free for download. (Final update 11-March-2014.)
Photo by Jenni C/ Flickr
Much excitement! Cool, huh?
If you like the sample, please share this link on your Facebook page (see the do-hickey below). And, please like and participate on the project’s Facebook page at http://www.facebook.com/DadsofDisability
Onward and upward to May 2014 publication — or earlier!
If you were provided an opportunity for your family to have “sensory friendly” or “medically friendly” access to movies, plays, concerts, or other family activities at a public venue:
1. How often per month would you attend?
2. Would you pay extra for this event? Only go if it were subsidized? Pay only the standard amount?
3. What kinds of accommodations would you require? Lighting, sound levels, extra intermissions, “teaching moments” from the conductor or director (at a play or concert), backstage visits, extra room in seating, etc.?
I didn’t really want to send out a survey, because I am really interested in your long form answers. Please email me at email@example.com with “Sensory Friendly” in the subject line, or leave a comment below.