Twinkle Little Star

Disability Awareness

*Scene: Naim and Aaron looking out the front window, waiting for our friend, K, to arrive. Light rail train goes by.

A: The train! The Train! Is she coming, now, mama? Is she coming?

Me: No, she's not coming on the train, she's coming in her car.

N: She drive her car?

Me: Yes, she is driving her car here.

N: K need a car, and Grampa Fred need a car, and J need a car.

A: (solemnly, in serious explanation tone) Yeah. They need a car to move. They have to have a car to move.

N: (Nods empathetically) Yeah. They can't ride the bu-US, or ride the tra-AIN, or walk on the sideWALK like we can.

A: (also empathetic) Yeah. They do it a different way.

N: Yeah. They need to drive their car. Then they can't go to the playground on the way to daddy's house.

*Please excuse my complete inability to accurately recreate toddler talk. Trust me, it was cuter when they said it.

In My Dream World...

Before I go off into La La Land on the intended topic, I'll give a quick D update for those of you who ask about it.

D went back into the hospital on Friday for a surgery on the incision site of the old pump. He only went approximately 5-7 days infection free, and then developed another infection mid week last week. There has been something mysterious in the wound that no one has been able to figure out. A hard something. First they thought it was scar tissue, then they found out that it was this meshy substance that they place around the pump and stitch the pump down with to keep it from moving. When they removed the pump, they, ahem, forgot to remove this stuff. So it has been causing problems (and infection! and has not promoted healing! Go figure!) and had to be removed. So the surgery was to clean all that stuff out.

The good news is that they were able to cut out the bad parts of the skin around this incision and just stretch the skin over and close the wound. So, we have hull integrity again. This is a very important step. Pathologies of the meshy intruders came back positive for MRSA and strep. Next is more antibiotics. So Vancomyecin for the next week or two and time for the wound to heal, and then if all goes well, the next step will be to get the pump replaced. (And no, the doctor who made all the mistakes in the first place will not be replacing it. D is done with her and has moved to a new pain management doctor.)

Also, D's dad and I, who have been suffering from minor but annoying illnesses for the past three months in our throats and sinuses are looking into getting on Mupirocim, an antibiotic to treat MRSA colonizations in the nose and throat via (ick!) a nose spray or ointment that you put in your nose. I think his and my respective doctors have been a little bit disinterested in our problems by not even offering a culture when we tell them that we are caregivers for an MRSA patient. All we are doing is passing it around to each other and although not life threatening for us, it certainly doesn't make it any easier for D to heal and it is sometimes life threatening for him. So, I am hoping that while D is on Vanco and with a closed wound, this would be a really great time for us all to get treated at once. I might even see about the kids and the cat...although I don't look forward to being the one who administers nose spray to them. (Ick again).

Oh, and in another good update, Naim has gone for two days with no accidents and has taken to going to the bathroom without being forced asked. Yippee yea! I think something clicked and he's turned a corner! I'll, um, hold off on my Aaron potty training report at this time.

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Okay, now for my living in dreamland post.

As you who read this blog regularly know, D and I don't have the best living arrangement. I don't like to complain too much, because compared to a lot of disabled people (and people people) we have nice, safe places to live. My house is not huge, but for our area is a bit upscale. D's apartment is a standard apartment in a nice complex with stupid high rent and a bathroom he can barely use. And then we spend our days running up and down the quarter mile in between us to get things done and see each other.

I won't rehash all of my issues with living in my father's house, which will always be my father's (or after his death, my sister's house) and never mine. For him, it is an investment. It has appreciated nicely. Very nicely. (I should get a finders fee for picking this neighborhood, but I'll never get credit for that.) Anyway, it is disconcerting to me that he often talks about how much he would make if he sold it. I get that it is more hypothetical "wow! look at how much the house has appreciated!" talk, but it is my home, my children's home and I would like it to be a home with 'soul' for lack of a better word, a home that develops roots and a strong foundation of stability for my kids (and me) but it is hard to feel like that when you are living in someone else's real estate investment.

I think that it could be okay and even great to live intergenerationally, but everyone has to be at least somewhat committed to the notion of family and sharing and working cooperatively and respecting each other. Sometimes I think we could do this. I have this plan to come up with ways to get my dad more on board with the fact that when he is here, he is part of the family. This isn't just his summer boarding house where he sleeps and eats and then goes out dancing or to "go have two beers." He impact my life and the life of the kids. He can either decide to be a positive, loving, respectful part of it or not. It is yet to be seen whether we can work that out. Sometimes I remember feeling more connected to my ex-boyfriend's mom's house that I stayed in for a summer or even D's family's house than this one. But sometimes I really want to make it work here.

D and I have considerable challenges when we consider living together or buying our own place again. We have two disabled people who need housing accommodations that don't correlate to low-cost housing. Neither of us can live in the country or in a much smaller town. He needs to be close to comprehensive medical care and I need to be close to public transportation and services I can purchase (grocery delivery) or get to by transit.

In many metropolitan areas that are big enough for us to have our needs met, housing and lot costs are extremely high. So what most families without a lot of means do to find housing is to rent apartments (which semi works for us, but we still have a space and accessibility problem there.) Or people buy row houses or condos. I would be okay in a row house or condo, but D could not live in one. In our area, the lower cost houses are typically three levels that sit on very small lots. Garage and maybe a bonus room or den on the bottom floor, kitchen and living room on the middle floor, and bedrooms on the top floor. There are very few affordable ranch style houses available around here. The lots are too big for people to afford.

Also, and this is hard for people to understand, D needs some amount of square footage. In an average house, the doors are only 28 inches wide, sometimes smaller in the bathroom or closets. D needs at least 32 inches. The threshold of the house really can't be more than a few feet off the ground before you would have to make a ramp so long it would wrap itself into the street. Also, in between things, like kitchen counters and bathroom sinks and such, has to have space to actually get around in. In most bathrooms, if D can get in at all, he cannot reach all the facilities. Same for the kitchen. He might be able to reach the kitchen, but then not the fridge or the sink or what not. And oh! how fun it is (just ask my dad) to cringe as he tries to turn tight corners with his 500 pound wheelchair banging into the woodwork and peeling holes in the drywall. Then there is storage. Everything he needs frequently needs to be placed about 3 to 5 feet high. The above kitchen cabinets are worthless for him, as is the bottom shelf. So space isn't really a luxury, it is a necessity. And that is really hard to find and be affordable. Sometimes even if you find a house with the bare bones of accessibility (like his parent's house for example, a two story but with some bedrooms and bathroom and kitchen and living room on the main level), the amount of remodeling you would have to do to make it really livable for D is quite expensive.

One thing that  is probably affecting D's health more than we know is that he doesn't have a shower he can use in his apartment. He has not taken a shower really in years. People think that apartment landlords have to provide for these things and, um, no. Little stuff they will do (with a fight) but they don't have to install roll-in showers or do big renovations. They only have to allow you to do them at your own expense and you have to change it back once you leave at your expense if they demand it, so most disabled people don't bother with it and just deal.

So D and I are always swishing around silly housing ideas in our head. We know we have it good, compared to those thousands of disabled people in nursing homes or homeless or on 10 year waiting lists for section 8. But we are paying for two households now on not very much money. Paying double rent and utilities is just kind of wasteful.  D's father is doing a lot of attendant work that I could easily do if I lived there, but I can't  leave the kids at night or drag them with me easily. The kids don't know anything other than having two households and going to 'daddy's house' but they do miss him on days we can't get over there and sometimes they don't want to leave when I have to go. D would get more time to spend with them, and I would get more time alone. D could watch them and I could be back up but still do my own thing in the house.

We are really liking our neighborhood (the one that I handpicked!), it is suburban-y, yes, but for convenience purposes, it can't really be beat. D's parents live less than a mile away. We have grocery stores, church, pharmacy, my gym, etc. within walking distance. We have the light rail station within walking distance and also two bus lines. The light rail goes into our little suburban town with the library, bank, parks, little town shops etc. Take the light rail the other direction and you hit the children's museum, zoo, and downtown Portland with all that downtown Portland offers. Museums, orchestra, ballet, theatre, etc. We have the ocean and ski resorts about an hour and a half away. (We don't peruse these much, but the kids might when they get older. The kids and I get to the ocean at least a few times a year.)

The climate here is good for both of us. It does rain, but it rarely snows. It isn't too hot in the summer for D, who doesn't sweat and gets dangerously overheated in hot weather. It is rarely icy so we are not stuck inside. (Wheelchairs and snow don't mix. Neither do white canes and vision impairments. Makes it a f**ing bitch to find the other sidewalk across the street.) It is also a quite liberal city politically, so there is a lot of environmental programs going on (i.e. all of the buses are hybrids), and alternative lifestyles are pretty accepted here.

All this is to say that the location is great for us, just the actual housing situation isn't.

So, we've played around with this idea for 5 years now. An idea that is pretty far out there and I can't even begin to think of how we would make it a reality. But I took the first step today. To what end? Probably none. But whatever, you might as well try rather than throw up your hands and quit before bothering. (And you know who inspired me? Ms. Baggage. A woman who is, in some ways, in similar circumstances to me and just bought her first house today. Go Baggage!)

Okay, so here is the deal: Between my church and the train station, along the train tracks is a strip of land. Big enough to put a house on but probably too small for a big development to come in. And besides, the train...the train that comes every 15 minutes from 5am to 1am every day...is like RIGHT THERE. (Which is why it is so nice sometimes to be hearing impaired.) So we hypothesized that A) the public transit utility probably owns this land; and B) it probably isn't worth a whole lot.

And, then, many years ago, I read an article in the Oregonian about a triangular shaped block located downtown, right by the light rail tracks and owned by public transit was sold to a developer who used it to build a posh high rise for....ready?....$1. Downtown land! That's like, located downtown. In Portland. Downtown Portland. Let me put that into perspective for you. A 500 sq.ft. studio apartment on the bottom floor in this 8 storey building costs a half a mil. On the top floor? A two bedroom 1,900 square footer? 1.3 million dollars.

Now when I told my dad this a long time ago, his immediate response was, "Well, they aren't going to give land to YOU for a dollar!"  And he is probably right. They probably got some kind of deal out of it. Some corporate trade that I don't understand or some kind of tax write-off or something. But, anyway, it gave me a glimmer of an idea at the time that TriMet sometimes has the opportunity to get rid of land for cheap. Who the hell knows, maybe this little annoying strip of land over here is something they don't give a shit about.

So, my first step that I finally did was to find out who the hell owns this land. And as I suspected, TriMet does. And I also found out that it is unincorporated, which I don't know exactly what that means, but I think it means that it isn't zoned as really anything or something. Much, much more research needs to happen in that regard.

So, step one in this far fetched parallel universe is to acquire the land for very, very little money. An amount that we could pay outright. Step two (probably the easier step, because it is more conventional in a way) would be to build a modular home on it. That would be accessible. And we would either mortgage that and/or look into fund raising or foundation grants or special disability programs (or get Ty Pennington to build us a house from scratch while I admire his cute little bod???)

I know, I know. Trailer trash. A modular home. But have you seen them lately? They are kind of like pretty damned nice! (just a "for example") And are spacious! And safe! And look like houses! And they are considerably (or so I am told) cheaper that a real house. And, almost all of them are basically accessible, and some are being made that have universal design features and we could have the roll-in shower and all that put in and not have to retrofit, which costs considerably more money.

And then we would move in, the four of us. Just the four of us. And my dad could come visit if he wants and stay in the guest room of MY HOUSE. And we would live happilyeveraftertheend.

Uh huh.

From our little idea to actual reality has about 463,264 million obstacles and what ifs and who the hell knows if that's even possibles. There is zoning and neighborhood associations and codes and well, a lot of people just laughing us off and saying "Fuck, no" to us and mortgage lending and D's health and my over commitment problems that would make a project like this not really ever happen until my kids are off and having my grandchildren anyway.

But...

What if?

What if I just commit to doing one step? The next step. That is all I commit to. I just make the one phone call. And if it seems worth going on then I make the next phone call, and the next. And if the road blocks get to be too much or if the reality that I'm out of my ever-loving mind comes to fruition then I quit? I won't be any worse off than I am right now. And I will probably have learned something about housing that might help me later on when I have my NEXT BIG IDEA. So it can't hurt, right?

So, I made the first phone call (email actually). And I got an answer that leads me to the next. Which is, what is that land worth, anyway? And that is all I'm going to commit to at this point. I'm going to research what that land is worth.

How I &$%^!@#ing Hate Potty Training

I have to admit being a lucky  parent. Except for Naim's feeding problems early on and Aaron's febrile seizures that seem to have ceased, I have had very few, if any, real problems parenting them. And the aforementioned problems are purely medical, not behavioral--as in--there wasn't anything I could do about them anyway except ride them out.

They weaned nicely out of co-sleeping and slept through the night from five months on. I've only very occasionally had to rescue them from a midnight fever, fall out of bed, or nightmare. They gave up the paci at probably two months. (Although I still have a finger sucker that I'm basically ignoring at this point.) Giving up the bottle was a non-issue. I weened them down slowly while they learned to use a cup and then, the day after their 2nd birthday, got rid of all bottles altogether. It was a nonevent. Also non-eventful was the switch from cribs to beds. I skipped the toddler bed, the guard rails, the mattress on the floor, etc. They had a choice for a few weeks to either sleep in crib or bed, then I sold the cribs and that was that. Aaron especially is picky about vegetables, but going to solid foods and having them eat themselves with a fork and spoon was, if not instantaneous, pretty smooth going. We have our share of tantrums, but between signs, and my inability to understand or put up with grunts and moans, they developed language (even Naim's pronunciation is getting good enough for strangers to understand). I think we came through the so-called "Terrible Twos" without too much permanent damage. Except for the fact that there is two of them and only one of me, which is always a challenge, we've really had no serious struggles.

That is,

Until,

Potty Training.

A great deal of the problem has been me. I have been inconsistent. I have potty-trained other kids before. But never two at once. Never two boys at once. Boys. Boys, boys, boys. I cannot tell you how sick I am of little-bitty p*enises and their inability to remain positioned IN THE HOLE! How many times have I said, "Check your p*enis, is it in the hole? It needs to be in the hole!"

Part of the problem is that I'm sick of dealing with potty and poop. Okay? You know how auto mechanics always have junked up cars and computer IT guys always have a million non-working computer parts strung across their desk? It is because when you do something "professionally," you lose any inspiration to deal with it on your own time.

I deal with bodily fluid. A lot. D's bodily fluids, the cat's, the dog's when she is here, my own, even my dad's sometimes (because men's inability to keep a bathroom clean has nothing to do with anatomy, it has to do with the arrogance of the patriarchy...but that's another rant altogether.) Anyway, there are days when I have literally cleaned up after six or seven people's piss and other bodily fluids and mess. The cleaning up  of butts, the cleaning up of bathrooms, the laundry, the litter box, the poo in the yard. AND I'M NOT GETTING PAID ENOUGH FOR THIS!!!

Yeah, so. I've been unmotivated and inconsistent. I have stopped when my dad has been in town, cuz who wants to deal with that temper fallout when the kids pee on the living room floor? I have tried boot-camping it for several days and then go crazy being stuck in the house all the time. I have done it the naked kid around the house way, which works with Naim but Aaron really doesn't give a flying fuck if pee should happen to come out as he is playing with his fire truck. He just keeps on playing. I have tried being super positive and fun about it. (We did the big wrapping up of the big boy underpants and presenting them as a Very! Special! Present!) We did anatomically correct peeing dolls. We've talked and talked and TALKED about all the convenience and wonderful greatness that goes with having a clean, dry bum and going in the toilet. I have tried sticker charts and even candy incentives, which as I knew, wouldn't work for very long. (Naim will go for that for about 4 or 5 days before he doesn't care anymore. Aaron will go 4 or 5 hours before he loses interest.) I have read potty books, I have tried different potty chairs. I have tried pull-ups, cloth padded training pants and Thomas and Diego underpants. I have tried encouragement and big celebratory dances after a success. And without really intending too, I have yelled in frustration after the 35th accident of the day. I have tried doing them separately and together. I have tried waiting a few weeks until they are "ready."

And before you all start giving me advice, they ARE ready. They can hold their bladder for hours and even sometimes all night. They can tell you in detail how they should stop what they are doing and run to the potty chair and pull down their pants and blah blah blah. They can pull down their pants themselves. They tell their dolls that "Potty belongs in the toilet." They totally get it. They just know that I'm going to cop out and give up in a few days if they just complain hard enough. And I do. Because I am tired or I'm so behind on housework or we are going to have to be out all day for several days in a row or I have to run and help D do something and it is just easier to throw on a diaper and go.

So, here is my new approach. And I'm not giving up. I'm going to push through this until we get to the other side. And my dad is coming next week so he will just have to deal with the mess. And there is mess. Aaron sat today on the living room floor and pooped and just sat there in it as if he didn't even notice. Basically, I'm going modified Alfie Kohn. Or is it tough love? I don't know, but I'm done with candy and stickers and begging them to go potty and having a screaming match when I ask them to sit on the potty. I'm not saying a word anymore. I'm only really doing one thing:

The diapers? They are gone. No more diapers. They get a pull-up at night, but first thing in the morning, it is off and that is it. I went and got a bunch of just navy/neutral colored sweatpants at a consignment shop and I made up a backpack with about four pants and four pairs of underpants and plastic bags and wipes and paper towels and we go out the door. If they have an accident (and they do) we stop everything and go clean up. And they have to do the cleaning up. And the majority of changing clothes. (I help with shoes.) I have told them that I will clean up anything that lands in a potty chair, but anything that lands anywhere else? They have to clean up. I got a bunch of paper towel rolls, a big bottle of 409 and carpet cleaner and some of those clorox wipe-y things for them, and I stand over them until it is "clean and dry." Nothing else happens until they and whatever else they hit are "clean and dry." I don't even make them sit on the potty chair anymore. I sometimes 'suggest' it, but I'm not demanding it. No more wars over this. They make a mess, they stop and clean it up. I say nothing positive or negative about it, I just make sure they don't go off before it is cleaned. And NO MORE DIAPERS. I will not give in. Right? Tell me not to give in. Cuz, sometimes, when you've cleaned (or, ahem, supervised the cleaning of) your 6th mess today...it is quite tempting.

So, your job is to tell me that this will work and that I will not be standing over my college freshman son as he sits naked and smeared in his own fecal matter on my living room floor. Tell me that this will get better.

I think Naim will be okay as long as I'm consistent with him for long enough that he builds it into his routine. He has done altogether better than Aaron so far. (And I had a big breakthrough with Naim today. He actually sat on the big, real toilet today!!! Of course, I had to contort my body so that I was hunched over behind him "holding" him on the toilet so he wouldn't fall in. But he was pleased with himself and he eventually let me get out from behind him as long as I held both of his hands. This makes it much easier to go places with him without having to tote a potty chair around with us.)

Aaron, well, I keep reminding myself about how long it took him to walk. he didn't walk until about 22 months. And he never wanted to "practice" and he never wanted any praise for it. He finally started walking behind our backs. He would walk when we weren't looking and immediately drop to the ground if we said anything. Finally, he gained enough confidence to fess up and walk in public. So, I'm hoping that if I kind of get very uninvolved about this, except for my boundaries of no diapers and I'm not cleaning up after you, that he will be happy to eventually do it on his own. I'm hoping.

Aaron is a kid who does better the less you interfere with him and demand things of him. He has attitude. And the instinctual thing to do with him is to get all up in his ass about everything when he gives you attitude. But that just makes it worse. The more I look the other way when he doesn't want to come to dinner or go to bed or pick up his toys or pee in the toilet, the more he will comply on his own. He wants to be respected to do the right thing without being told what to do. And I totally get this because that is exactly how I was growing up. I'm trusting my kid! Wouldn't Alfie be proud of me?!?

Some other post that doesn't involve so much talk of pee, I will talk about how as the kids are maturing, I am getting more and more unschool-y and unconditional parent-y. For now, it is just nice to realize (or keep telling myself) that I do have two able-bodied kids that will  be able to take over their own care at some point in the not so distant future. After cleaning up after everybody's ooze and goo, I have to remind myself that hey...these kids can do it for themselves. It may take a little frustratingly messy time, but I just have to get out of caregiver mode and stand back and let them.

Wanna Schmooze over a Book? and Disability PR for Kids

This week, instead of blogging, I got engrossed in a thread on The Whatever regarding homeschooling. If you want to slog through 178 comments, you can read what I have to say there. (I'm the one known--curiously--as "Lisa" over in them there parts.) And yes, I should have shut my pie hole around my third comment, but by that time, I had let it become sport.

Anyway, someone on that thread recommended the book, "The Underground History of American Education" by John Taylor Gatto. It is actually online in its entirety, so I've been engrossed in that. Gatto, you may know, is famous for quitting his 30 year PS teaching career with a scathing acceptance speech at his NY Teacher of the Year ceremony, and his book, "Dumbing Us Down," which I have read. This book goes entirely further into the history of compulsory education. He comes to it from quite a libertarian angle, so I don't agree with everything he says, although my experiences as teacher and student do not disagree with many of his conclusions. I am a weird amalgamation of socialist libertarian, if that is even possible. I think we should all take care of each other financially until every last one of us, including the earth, has our basic need for food, shelter, clothing, health care, community and access to education met. Then, I don't care what you do. You might say I'm economically a socialist but socially a libertarian. Or something like that. Anyway, the book is not only teaching me a lot of American History I did not know (and showing my how bad my sister's and my schooling was, even though by relative standards, it was quite good), but is giving me insight into such things as family issues, community issues, church issues, etc.

But I don't want to write about that until I've finished the book and had some time to digest it. Also, if anyone else wants to read it or has read it, I'd love to do a little book club style bloggity-blog-blog thing about it. Let me know if you are interested and maybe we can set a date.

Instead, I will answer an email. Gracious reader, Wendy, asks:

I have a 3 year old and am interested in your thoughts about talking to kids about obvious disabilities.  The other day, a man walked past us using a cane and my son turned to watch him.  After the man passed, I just said, "that man is using a cane to help him walk". We haven't encountered too many people in wheelchairs, although we've seen a few and I try to comment to my son in a low key way.  My intention is to educate him and maybe prevent loud questions that could be embarrassing(more for me than the person in the wheelchair, I think). 

 

So what are your thoughts?  I know that it's different for you because your kids are used to seeing their dad in a wheelchair.  What advice do you have for those of us that have limited contact with people with disabilities?  Also, how do you suggest talking about mental illness or developmental disabilities?  I have some thoughts but am interested in yours.

 

She also asks if I have already written on this topic and if so, where? To which my answer is, "Hell if I know. Have I? Anyone remember?" Its almost easier to write it up again instead of search for it. And my kids are also three, and things are coming up for us, too.

Well, first of all, I think what you said was fine. Second, my kids probably, in a way, know less about disability than you think. They are used to the accoutrement's of disability such as wheelchairs, hearing aids, white canes, IV pumps, etc. But they really have no idea that these things are in any way different than what most people use. But more on that in a sec.

I tend to not make a point to give a big explanation to my kids about anything unless they ask a specific question (or seem so perplexed and bothered about something they see that it would comfort them to have an explanation.) For example, I have not ever talked to my kids about race. And I don't expect to until the issue comes up by itself. They see people and play with children of different races almost everyday. They don't seem to think anything of it, so why make a big point to explain something that they don't see as different. Now this doesn't mean that eventually, when we start learning about American and World History, for example, that we won't have the hard discussions about race. But right now, it seems like pointing out that their little friend so-and-so has different colored skin than they do is kind of wagging the dog. I mean, I don't go around making a point to tell them that so-and-so has different colored eyes or is a different height or weight. What do you think? Is this the right way to handle it? It is hard to know whether you should be pre-empting any subconscious negative information they are getting from our culture about these things, or if by pre-empting it by pointing it out, you are actually putting negative subconscious information in their heads.

Now, they have asked gender specific questions and I have answered them matter of factly. Mainly things like, "mom, do you potty out of YOUR penis, too?" And then today Naim proclaimed, "Mom! You have BIG breasts! And I have little breasts!" So I just matter of factly say that women have bigger breasts than men, blah, blah, blah. But I haven't even gone around (as I've seen some parents do) asking, "There is Jane. Is Jane a boy or a girl?" I figure Jane can self-identify if it is important to her that they get her gender right. Besides, that stuff is so ingrained in our culture, they already can gender identify. I never had to say anything to them about it.

So with D's and my disability, I have really just explained things as they came up and answered their questions. They are just now starting to realize that D can't walk. They still don't quite articulate an understanding that I don't hear as well as they do. Yet, they accommodate me naturally by bringing stuff over to me or coming over to me to talk to me. Sometimes, they will say, "What's that noise?" And I will say, "I don't hear the noise you are hearing, because you can hear better than me. What does it sound like?" And then sometimes they will go into great detail imitating and describing every sound they hear for me. And it even gets out of hand silly when they start telling me they hear elephant sounds or space shuttle sounds in a fit of giggles. But I don't think it registers to them that I am different or less than in any way because of this. When they play "house," whoever is the dad has to  find a wheelchair to sit in. Now they know that there are other men called dads and that they don't use wheelchairs, but in their mind dads use wheelchairs. Whenever they draw pictures of me (or moms in general) they draw hearing aids. Moms have hearing aids. End of story. When they draw their dad, he looks like a big head on top arms on top of 4 to 8 circles for wheels. But they draw themselves with legs. I have told them that not all moms have hearing aids and not all dads use wheelchairs, and I think they cognitively get that, but they don't use those images in their imaginary play. When they see other people who are disabled, they really don't seem to notice. It is just par for the course for them. It will be interesting to see how it unfolds for them to come to understand that we are the different ones. Or at least that is how we are thought of.

I know this isn't exactly what you are asking, but I mention it because people ask me sometimes, in serious hushed tones, how we are "handling" teaching the kids about disability issues. The truth is, we aren't. We are just living our lives and not shoving it down their throats that we are so unique or different. But yet we do answer all of their questions honestly and matter-of-factly.

So, that being said, I don't know if it is necessary to say anything to your kids about people with disabilities unless they ask or seem uncomfortably confused by it. I used to do these "disability awareness" thingies at kid's schools, and I still do them from time to time, but I've come to think of them as sometimes doing more harm than good. It is like putting a big, fat sign that says "THIS PERSON IS DIFFERENT. LEARN THAT!" on us, when kids might not have thought we were all that different before, just more of a curiosity. Now, when I am invited to do kid awareness things, I say that I'm not going to stand in front of the class and tell them how different I am. Nor am I going to do the "I'm just like everybody else...except" dog and pony show. Now I try to set it up just so I spend some time with the kids doing something that they are already doing, like an art project or something. I will introduce myself with a 30 second intro about me, like anyone would, and I do say that I cannot see or hear very well. And then I just interact with them. And they ask questions in the process and I answer them.

Also, I will say, that in the disability community, kids get a pass. I don't like to speak for everyone in the community about this, but I have found that to be universally true in my experiences. Kids staring or asking questions is really no problem. Unless I am in a mad rush somewhere, I will always happily answer any kid question. This "PASS" is in response to the backlash that happens when kids are shushed and pulled away and told not to stare at us by their parents. That is the perfect way to ensure that your kid thinks we are freaks. We look different, we are doing things differently, kids should stare. It is only natural. If they are yanked away and scolded for staring, all it has done is enticed them to view us as fascinating freaky people that are so bad, we make mom uncomfortable.

Also, I personally would rather have the kid come up to me and ask me a question directly, rather than have their mother shush them till I've passed and then give their own explanation. Because often, their explanation is wrong. I'd rather they just get it from the horses mouth. And also, if I find their question to be too personal, I'll politely tell them that it is too personal. This way, they might actually grow up understanding that they don't have the right to ask disabled people anything they want to know. And if I am too busy to answer, I'll say something like, "That is a good question, but I don't have time to answer it right now." So then they know that it isn't my JOB to stop and educate them, but I will do it voluntarily if I can.

When I had my guide dog, I heard parents say all kinds of things to kids that made me sort of cringe. One was, "She can't see the traffic lights so that dog takes care of her and takes her across the street." Well, actually, no. No guide dog can see traffic lights or knows when to cross the street. We tell them when it is okay to cross the street by using our skills and hearing, just like white cane users do. Where a guide dog can help is to find the straightest path across the street to the opposite sidewalk, and to help us know which way to dodge an unruly car should it come careening around the corner. The other thing that happened all the time was when I went anywhere with D, people made up whole stories about us to tell their kids. That man can't walk so he has a dog to catch him in case he falls out of his wheelchair and has a seizure and that woman is his nurse who takes care of him. Okay, whatever. But do people know they are just making shit up? It is always about how we are poor things that need someone (dog or human) to take care of us.

Worse yet is the people who talk to their kids is very value judgment-y ways like, "That person can't see. Aren't you lucky that you can see? Doesn't that make you feel bad that she can't see? Maybe you can use her as your community service project for today and go over and annoy her until she lets you help her with something she doesn't need help with." I think it is very important that parents aren't using us as their kid's feel sympathy and be grateful for what you've got feel good moment of the day. I mean, why not just take a whole bag full of prejudice and intolerance and ram it down your kid's throat?

The thing about kids and people with cognitive disabilities is that most of the time, kids just don't care. Sometimes if a person is displaying some kind of socially unacceptable behavior like drooling, kids will ask or stare. And then I'd just say that all people are different and have different abilities and some people aren't able to control their saliva very well. But if it is just that a person that a kid comes in contact with who is not acting as intelligent or mature as typical for his age, I'd just let them get to know the person. Or if it is a passerby, say nothing unless asked and then I would do the "everyone is different with different personalities" line. I think the main idea is that kids pick up on how comfortable YOU are in the situation. So if you really want to portray acceptance of people with disabilities, I'd start with yourself first. And in the meantime, explanations should be short and sweet and factual, and most especially value-neutral.

So, in summary:

1. Work on your own attitude first, then your kid's. Always try to model comfort and respect around us.
2. Don't point out differences that your kid doesn't even see.
3. In the disabled community, kids get a pass in regards to staring, asking questions. It is our way to try to undo the mess the parent is about to create. So don't worry too much about it.
4. If appropriate, let the kid come up and talk to us about their concerns. But know that we aren't obligated to educate them, spend time we don't have with them, or cross our personal boundaries with them. We are providing a courtesy that hopefully serves both parties well.
5. If not possible for your kid to talk to us, answer their questions in matter-of-fact, value neutral ways.
6. If you don't know the correct answer just say so. If the kid is still curious later on, do some research by going directly to disabled self-advocate sources, NOT professional service provider or medical sources. You will get a WAAAY more real life and accurate answer that way.

Readers with disabilities? Feel free to add your opinions in the comments. Disagree with me? Agree? Have other ideas? Let Wendy and me know.