A Delicate Dance

The relationship between someone with a disability and the people who provide their support can demand some complex choreography.

Since my daughter Jenn started at her new school this year people notice a difference in her ability to converse. She participates more. People notice that she takes more turns and clarifies more when people don't understand what she said.

What changed? Mostly, I think it's that she no longer has a 1:1 aide.

Now, don't get me wrong, Jenn had wonderful, well-trained, supportive aides. They were intent on making her more independent. Their presence made TONS of experiences available to her in our public school that she would have missed without them.

Yet, while the existence of a designated support person creates lots of opportunities, it also creates a tricky relationship. This relationship must be functional if the aide is to provide effective, individualized support. However, this relationship also turns the two--supported and supporter--into a "partnership."

A partnership is a social arrangement with etiquette and expectations. It requires give and take. It's both a useful and complex situation. (And it doesn't just occur in disability, executives and their secretaries contend with these issues on some level, as do couples.)When you're working with someone who is in partnership you are not just dealing with the individual--with either individual--anymore. You are dealing with the team.

I have met people in support situations who try to negate the "partnership" dynamic. I have met a deaf woman and a blind man who instruct people who are interacting with them not to address their support staff. Ever. While the desire to keep lines from blurring and to be addressed as an individual is understandable, it is awkward for observers and almost abusive to the support person to be treated this way. Consequently, this isn't the way most partnerships function.

Others try to treat their support partners more as friends. This works great if both people are compatible and can negotiate the leading-following nature of support--if not it gets ugly.

And if the supporter is an adult and the supportee is a child the partnership can't be anything but directive. But an adult with a cognitive disability is NOT a child. Providing adequate support AND self-determination requires both intention and attention.

With Jenn her partner status presented as a subtle waiting, a slight holding back and non-ownership of her role in conversation and other situations.

There are trainings and articles on the subject (like this one) but I don't think the questions of support vs. enablement, and codependence vs. interdependence vs. supported independence ever completely go away.

Parent as Support Partner.

When the parent is the support partner the complications of both the partnering and the parenting relationship get piled on even thicker.

When I am the support person my partner should be as self-determined as possible and I am there to facilitate.

When I parent I create the stuctures and expectations for my children...

My daughter needs both of these things, and it's hard to do them both at the same time.

Sometimes it's so easy to over-support because I do know what she's saying, because I know how hard some things are for her, because I'm her mother and KNOW what's best, because I don't have an objective view of her maturity or capability, etc, etc, etc... Beyond this, keeping my support-partner hat on all the time can be stifling for both of us--knowing when or how to remove it is really difficult.

When am I a parent? When am I a partner? And what if I need something?

Recently I turned down an evening swimming program for my daughter because I would have needed to swim with her. The opportunity to swim is good for her, but swimming after supper would disrupt my sleep which I just can't afford. The program director found a volunteer to swim with her... and I still feel a little guilty.

And when do you turn off the "because I'm the mom" mojo? I have seen parents of adults with disabilities subtly and not-so-subtly direct their adult child's choices. A partner who is also mom has undue power. Should she exercise that power?

Yet, NOT being mommish, being professional and detached doesn't work either. People need their parents to be attached and parental. At least sometimes.

And how does this work with the rest of your family members?

So far this is what I try to do: I try to engineer opportunities for my daughter to run alone--in big and small ways whenever possible. When she does need a partner, I work hard to set up situations that are healthy and effective. And when I am the partner I try to keep a balance between parenting and partnering. When things get out of whack I try to change.

How do others manage the partnership dilemma?

Picture from here.

Unexpectedly Effective Advocacy Skill #6: Analogies

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

One of the techniques I have used to reach understanding with people who work with my kids is word pictures or analogies. Now this must be applied with a respectful touch--like anything else it could be insulting if you are not thoughtful (Obviously insults NEVER lead to understanding--which is in fact why people use them, but I digress... )

Sometimes, with our complex and highly individual kids, it can be hard to get people to understand them. It is common to try reports, evaluations, expert testimony, but sometimes providing information is not not enough to build understanding. (I have blogged about this before!)

When you are negotiating with a team about placement or classroom strategies or with legislators about removing community barriers and information fails to build the needed bridge many folks get frustrated and stomp out.

I would suggest that they have more tricks to try--they aren't done yet.

The next thing to try is a description of the things that are happening now (for example if your child is succeeding in Sunday school but not in Social Studies) or things that are possible if the new strategies or laws are implemented.

This is the time to be descriptive--supporting this with photos and more can also be helpful.

Yet, sometimes this fails also. The people you are talking to don't see what you mean still, they don't see how this relates to them--or they plain don't believe you.

Nope, it still isn't time to quit or throw huge tantrums--tempting though that will be!

Along with all of the above tools I recommend the using of analogies, metaphors and comparisons to add reach to bridge you are trying to build. When a teacher or a legislator is not be able to imagine our children responding the way we say they will or that they should do what we are saying they should, try comparing the situation with something familiar that seems similar in tone.

Over the years I have compared:

*My son's accommodations--which his team saw as cheating--with eyeglasses (I tell the whole story here.)

*My daughter's need for both OT and PT with her need for both mittens AND boots.

*My son's need for separating input from output when he learns with juggling (and my lack of ability to do it!)

*My son's need for teaching organization skills with the way Spanish is taught. (This one started out REALLY heated because they were one day trying to encourage him to be organized by telling him he was smart, the next day they tried negative reinforcement and kept him after school... no one was teaching him what they wanted him to know.... grrrr....)

*My son's learning disability with a scene from a popular movie where someone was walking along through the woods and suddenly fell into a hole and no one knew where the character had gone. Can't remember the movie right now... some army flick...

Something to add to your bag of tricks... let me know how it goes!

Picture from here.

Homemade Adaptation and Assimilation

Barbara at Therextras is hosting a blog carnival this week about the adaptations we make in our homes to support development. (As noted by mommydearest at The QuirkFactor, there is no popcorn... There never is.... sigh....)

At first I had no idea what to include. The days of labels on everything are gone, I no longer have a big clock face with moveable hands on my refrigerator (not because my daughter is great at time-telling, but because the thing just disintegrated!) And I no longer have plastic links on my cupboard doors--some to keep them shut and others to extend the handle for better gripping... The junior bed and tricky doorknob covers are long gone...

But then I looked around and realized that we have made many adaptations for participation, which I guess does qualify as development. This is a sign to all you young parents. Though the accommodations you make at home may seem like a huge deal when you are looking ahead at them, you will assimilate some of them so thoroughly that you will forget you even made them (or I am having memory issues... nope, it's definitely assimilation!)

Laundry: My daughter is short. This is why we bought a front-loading washer and drier when our old models bit the dust ("Yes Honey, we NEED the new, fancy, more expensive model--it's for Jennn!"). Stepping on and off a step stool to load the washer was inefficient in the extreme and required constant stand-by assist, now I can say "put the dark colors in the washer" and she can.

Kitchen: Many accommodations here.
*We have 2 microwaves--one above the stove and then one on the counter for reachability.
*We have contained chopping and cutting systems so cooking can happen without cutting since I just can't get comfortable with knife skills AND we still want to eat!
*I used to store things in the lower cupboards so that putting away dishes could be for all my kids, but we don't need to do that any more.
*We use pinch clothespins instead of twisties for ease of opening wherever possible. *I have oatmeal and brown sugar cannisters because the packaging was just too challenging, those cannisters were chosen for ease of opening for my daughter...
*I also buy the zipper plastic bags with the slider mechanism. My daughter can open the plain ones, but she can't close them reliably.

Posted checklists come and go around our house as needed.

Bath: The 'safe temperature zone' is marked on my shower faucet with crayon.

I can't think of anything else at the moment... but that is because we have assimilated them so well (and don't you forget it! :)

Picture from here.

Another Blogger Commenting on Susan Boyle

I can't resist, I just can't.

I loved listening to this woman sing. You could just swim in that music. It was wonderful. AND Les Miserables is my favorite show of all time.

But the articles about it are really begging me to comment.

The first one I read was from a Toronto paper and it said that Susan Boyle sang karaoke all the time in a neighborhood pub and the whole town knew she could sing...

I hope this was not a case of people saying "she can sing, too bad she will never be able to do any thing with it."

I have met many parents over the years who say things like, "My son is really a genius at _________, but he has _______ diagnosis and he can't butter bread (direct quote!) so he is moving into ________ group home and working at _______ sheltered workshop assembling ___________... It's too bad he could never do anything with math... sigh."

This conversation always discourages me because in at least a few of the cases that I know of those kids truly did have genius (and a disability) and with accommodations could make some real contributions but fear of their needs, difficulty fitting into the accreditation systems (one guy couldn't get a college to work with him because he had a disability--aargh!!!) and failure of imagination ("But HOW could he work for _______ company? He can't even drive a car!" This about a kid who had worked successfully at a local electronics shop all through high school--because he got a ride.)

My dad was an electrical engineer whose secretary used to pin a note to his jacket to remind him to pick me up after school and the company security guard would tell my dad that he was closing up and it was time to leave many nights. He was an inventor. He was allowed to invent--encouraged to invent, paid even--even though he had a few absentminded tendencies.

Why? Because he doesn't have a disability. If he had a disability diagnosis his life would have been turned sideways and his same brilliance would have been written off as a "scatter skill" in an otherwise disabled life.

It's called accommodation and actually it is a natural part of everyone's life--all of our doctors call us to remind us of appointments, all of our churches and theaters use programs or bulletins to let us know what is going on, tons of organizations use shared calendars and alarms to keep folks on track, etc, etc, etc. But when we add the word disability to the mix, suddenly people start thinking in terms of impossibility.... Whassupwiddat???

This lack of imagination or will to apply ingenuity to situations because they seem difficult forces people with disabilities to live from their weaknesses, where they could and should be living from their strengths. (To read more about accommodations see here and here.)

Miss Boyle is a singer. And there were people in her life who knew it. Why did it take an extraordinary feat to give anyone the idea that she should pursue it?

And then there's the New York Times article... and the debate about whether or not Miss Boyle should have a makeover.

As part of the 47 and frumpy crowd (though you will be happier if you don't ask me to sing,) I hear the anti-feminist and ageist as well as the ableist undercurrent of this discussion... And I think it is up to her. I don't think she should feel she HAS to have a makeover, but I think if she wants one she should go for it-- and I do think whether she does or not will have an impact on what kind of carreer she will have.

I object to the judge's assertion that a makeover would spoil Susan Boyle's specialness. The surprise of the beauty contained inside of an unsophisticated package was a valuable lesson (that honestly, no one really learned.) But that ship has sailed, the world was surprised once and will never be surprised by her again.

I really don't like the talk of packaging her always as the unsophisticated woman who sings rather than as a singer... reminds me of the freakshow mentality that always packaged 'the cripple who can.... count toothpicks... play Vivaldi or whatever. (There is debate about whether this was such a bad thing which you can read a bit about here, but it turns my stomach.)

If she wants a more mainstream singing carreer she will need to do the things to make herself successful in that realm... it may well require a new look. I see this stuff as external and it doesn't bother me--if you want to play for the Yankees you will have to wear pinstripes... And she can go as far as she wants with that, I think. If she wants to sing jingles for local advertisers she can probably choose a different look than if she wants to consort with famous contraltos.

And can she do all this and maintain her individuality? Of course she can--she's a woman, isn't she?

As for myself, I am glad for the beauty her singing brought to my living room.

Accommodations Part II (The Sequel)

(I know this should be B day, but my conversations after yesterday’s posts made me realize that there is a pervasive perception that making accommodations for people with disabilities is “cheating.”)

Several years ago I was asked to a meeting at my son's school because his teachers wanted to discuss moving him into a special education classroom. I was completely flummoxed. His reading grades were over the top, his math grades were average, and he seemed to be progressing in all of his academics… I knew all about my son’s learning challenges, but every grade and score that I knew about indicated that he was succeeding at that point.

I looked across the table at the teacher and started asking questions.

“Are these reading scores accurate?”

“Yes,” she answered.

“The math scores?” “Science?” “Social studies?”

“Yes, yes, yes…”

Finally I asked, “Do you think he’s not learning?”

“Oh yes, he’s learning—when we ask him about anything we have taught, he knows all about it.”

Then what was the problem? I am sure I looked as confused as I felt.

After an uncomfortable pause the teacher blurted out, “He wouldn’t have such good grades without his accommodations—he has had them all year and he still needs them. He isn’t getting any better!”

Accommodations are a confusing and even disturbing concept for a lot of people. We live in a country where folks take great pride in making it on their own and many people interpret the word “fair” to mean “same.”

On top of this people with disabilities often receive a combination of therapies and accommodations blurring the differences between them. Therapies are designed improve a person’s ability to function. A person receiving therapy is expected to progress, hopefully to the point where they won’t need therapy any more.

Accommodations are intended to make it possible for the person to function now—without changing. People often refer to accommodations as ‘leveling the playing field.” It is a tricky concept.

Fortunately for me there was a teacher at the meeting who was wearing eyeglasses.

“Do you wear your glasses when you drive?” I asked.

She assured me that she did. Phew! Just the example I needed.

I went on to say that my son’s accommodations were like other people’s eyeglasses: glasses don’t make your eyesight any better; people don’t really expect to outgrow them; and if a person drives to work while wearing them, they haven’t cheated—even if they couldn’t drive without them.

Now taking an eye exam (where visual acuity is being measured) with glasses on would be wrong, but driving the car (where driving safely is what matters) while wearing glasses is just fine.

Accommodations can be provided for everyone (for example you can use larger print in your Power Point presentation to all to meet the needs of one or two audience members.) Accommodations can also be made just for an individual who needs it (in the same presentation you might provide large print handouts just to the individuals who need that while everyone else gets regular print.)

On top of this, accommodations are not as unusual as people tend to think: I use a calendar to accommodate my inability to memorize my schedule, a car to accommodate my inability to walk to work (I live too far away), a calculator to speed up my math, and my doctor's office calls to remind me of appointments. I know I am not the only one who uses these types of assistance to succeed. Accommodations are simply the things we all do to get things done.

The confusion that exists about accommodations for people with disabilities--and some prejudice about what sorts of folks SHOULD be able to participate and succeed in society--has necessitated the formation of laws like the Individuals with Disabilities Act, the Americans with Disabilities Act and others.

These laws, far from being cheating, make it possible for all people with skills, abilities, interests and gifts--who may also happen to have a disability diagnosis--to be full participants in society. Our gender, race, religion, ethnicity or sexual orientation should not be barriers to a full life in this country--neither should the diagnosis of a disability.

Accomodations and America's Next Top Model

This weekend my 18 year old daughter got completely sucked in to watching the America’s Next Top Model Season 9 marathon on VH-1. The show, hosted by Tyra Banks chooses several lovely young ladies from around the country and provides a combination of modeling training and elimination competitions so that by the end of their season there is one winner of a major modeling contract. I don’t know this for sure, but my guess is that all of those young ladies get a career boost from both the training and the exposure the show gives them.

I got interested in watching the show when my daughter informed me that one of the girls competing (Heather) has Asperger’s syndrome. It was fascinating to watch this young woman compete on the program and watching the dynamics of the folks around her as she advanced in the competition.

I applaud America’s Next Top Model for their commitment to diversity.

Probably the most fun for me was listening to my daughter’s commentary on the show. She has grown up with a younger brother who has a learning disability and a younger sister who has Down syndrome. And, while I knew she was certainly aware of disability issues, it turns out she is pretty analytical and quite passionate about them. (Yay!)

She first called my attention to the show to point out Heather and to say, “Mom, I am so excited, she is really good!” She said that she’d been worried about what angle the show would take and she didn’t want them to have a “pity contestant” or to make a fool of someone. She said that Heather had some struggles, but so did everyone and “her strengths are really strong, Mom!”

Later she called me in to comment on the social dynamics in the group. My daughter pointed out one of the contestants and said that this girl had targeted Heather from the beginning. The girl started out early in the series saying mean things to Heather and when that didn’t appear to affect her she escalated and escalated until she was finally able to rattle her. My daughter’s comment was that the best revenge was that Heather’s pictures really were better than this other girl’s.

Heather made it nearly to the top which was so exciting, but my daughter was disappointed by the disqualifying events. Throughout the series people were attentive to giving Heather the cues she needed and she responded to them pretty well. All of the girls had areas where they excelled and areas where they did not. The final tests were hard to watch though.

There was a contest where Heather was having trouble with the photo shoot (some of the other girls did 13 takes also!) One of the coordinators eventually fed Heather the words line by line, but the critique was about connecting with the camera… it was sort of a parallel accommodation.

I have run into this with my daughter at times where someone will tell me that they have been zippering her coat for her, for example, for months and she still can’t do it herself… They did something—maybe a lot—for her, but NOT what she needed. It’s an odd disconnect.

The argument could be made that in the real world of modeling no one will help her that much… I think when the intention is success there will be ways to create accommodations that work. If they had given all of the contestants their lines the night before they probably all would have done better—but the intention of that competition was to eliminate someone.

The part that upset me was in the activity called Go-Sees where the contestants drop in on a bunch of designers to show their portfolios and make a connection. They left Heather wandering around some city in China unable to find a single designer. She cannot follow maps. So her elimination eventually had nothing to do with her ability, her connection with designers, her commitment or her work ethic, it had to do entirely with her disability.

The fact that people walked past her and let her flounder on the streets shows just how well she was doing in the competition! They clearly felt very insecure.

I think eliminating her because of her runway skills or her lack of smoothness talking on camera—essential job skills—would have been fine, but eliminating her for her map-reading capabilities was ugly. Especially in the age of the GPS! And wouldn't a GPS manufacturer just love the exposure of having the show hand out their systems to their top 5 models for Go-Sees?

Oh well, she got into the top 5, if our house was any indication she was cheered by multitudes. She really is a top model with a fairytale story—and, oh yeah, she happens to have Aspergers.