Behemoth

I have always wanted to work in long-form nonfiction with a journalistic style. I wanted to do in depth investigations of issues that need more than a soundbite or a pithy Salon essay to understand. One of the things I want to research and write about (as if you haven’t guessed) is the machine that is disability services, including special ed under IDEA, Vocational Rehabilitation under the Voc Rehab Act, DD services under the DD act, nonprofits that support people with disabilities, even crossing into the economics of durable medical equipment and assistive technology. I have seen it as a student, a client, a professional, a caregiver and a family member. If you look at Nik, D, and me combined, we have 120 years of cumulative experience living with disability, dealing with these services, organizations, laws, etc. And although the rest of society looks at these organizations and services and says a collective “Aaah, how wonderful and saintly they are to work with those poor people,” most disabled people who have been able to take a look at what is really going on know that it is a huge racket.

It is an industry that feeds upon itself. Yes, a bit of good does trickle down to the actual so-called beneficiaries to various degrees. But it is largely a total crock of shit.

You have the MDA with its million dollar earning CEO and it’s spokesperson who calls those with MD half-persons who should stay in their houses if they don’t want to be used as objects of pity to raise money.

You have the guide dog schools who work for the donors instead of the clients and basically imprison their students and strip their rights in regards to their dogs.

You have the assistive technology companies that are fighting tooth and nail to try to stop mainstream companies from incorporating tech to make their products accessible because they want to charge thousand percent markups for it…and can get that kind of money through the VR organizations who get intertwines in conflict of interest vending partnerships. Then they provide no direct customer support for their products like every other mainstream company does. Instead they have VR and schools pay $100′s an hour for technical consultants. Because they can.

You have the insurance companies that will not buy a quadriplegic a $5000 bed, but instead will pay $500 a month to rent it, plus the administrative costs of making the quad go through hoops to requalify every six months for decades. D has a bed that is no more special than a craftmatic adjustable bed that Medicare has now paid upwards of $90,000 for because they have rented it for 15 years instead of bought it for him. If his pressure sores heal, he has to fight to keep it. If they take it away even for a few weeks, he gets more pressure sores and then they have to pay $100s of thousands of dollars for the follow-up care for that.

You have the VR counselors that provide no counseling, direct rehab services, or much in the way of information, but make upwards of $70,000 a year when all they do is sign papers that fund things. But not until they have used their godlike powers to determine that you are “motivated” by rearranging your whole schedule and meeting with them every step of the way when most of their role is clerical and could be done over the phone and email.

You have Orientation and Mobility Instructors that have less than 480 hours of real travel instruction (about 3 months worth of 8 hour days.) Which is kind of the equivalent of having a piano teacher that only knows how to play chopsticks and maybe “Mary Had a Little Lamb.”

Same for Braille and specialist of the Vision Impaired in the school systems. Yes, they know more than your average person walking down the street, but they are severely lacking in actual skills and knowledge about disability adaptations and issues. Most teachers of the vision impaired in the schools have the Braille reading ability of a kindergartener. But they are the EXPERT! So don’t think they don’t want to teach your kid Braille because reading two print letters on a CCTV that are 12 inches high is really what literacy is all about! No, it is because they don’t like to teach it because they don’t know it. Boom! Illiterate blind adults, and statistics in graduate studies books that say blind adults have a high rate of illiteracy, which causes low expectations for teachers, which causes low accountability, and the cycle continues.

There may always be some need for professionals that specialize in specific disability training techniques. Qualified teachers of O&M, Braille, ASL, augmentative communication, occupational and physical therapies, personal care attendants, etc. The direct-service “problem solvers” and adaptation specialists for certain low-incidence populations will always have a niche. But the truth is, if the world ever becomes equitable for people with disabilities, the industry will cease to exist. If health care were equitable, if universal design became standard, if employment discrimination were eliminated, if poverty were no longer an issue for people with disabilities, if we were truly integrated, the industry as we know it would collapse.

It is a bit of a disincentive, isn’t it? To work towards that kind of world? Who is going to call you a saint for working with the blind or the developmentally disabled if they are just considered normal everyday people who are respected in society? Who is going to make those workers with helper complexes feel like they are helping? Who is going to make the donors feel good about donating without showing pitiful disabled people who can’t survive without a dog or a cure? It is why the behemoth works for itself first, and the disabled person is the afterthought. It is a multimillion dollar industry across industries.

Right wingnuts always worry about the disabled client sucking the teat of government…but in reality it is the industry itself which funds itself. Both private, public and nonprofit sectors work together  to feed the system. And the way they do it is by making sure the beneficiary has very little power. Keep ‘em needy and they will need us more.

Lest I sound like a crazy libertarian. I do strongly support training and adaptive assistance for people with disabilities. However, I think if these services were lead by and for people with disabilities, you would get most (not all) of the disincentives to do good work to disappear. Every time a blind person succeeds, it helps all blind people. Every time blind person fails, it reflects poorly on all blind people. It shouldn’t be that way, but right now it is. It is self-serving, for disabled leaders to make sure there are successful people out there, but it is a win/win at least. And the fact that disabled people actually treat each other as equals generally, which is the first step to success, knowing you are equal.

***************

Which brings me to my lovely story for today. It isn’t even about blindness. It is about Early Childhood Special Education. A program that I reluctantly put my son in when he was 18 months old. Avery showed signs of developmental delay, possible autism, and most significantly, a language delay when we first approached early intervention services. I called my local Educational Service District and referred him myself. Although I called multiple times, I did not receive a call back for about 4 months.  Finally, I called upon a sort of distant aquantance who worked in Deaf services in the ESD for help. With her pushing, I got an appointment for assessment the very next week. (What if I didn’t have that connection?)

I was used to EI services. I was prepared for a few weeks of all kinds of assessments. Vision, Hearing, Speech, OT, PT, Psych, etc. Then I thought these folks would be members of Avery’s multidisciplinary team and we would discuss goals and objectives for his IFSP and services would be planned out. Instead, his assessment was an hour and a half meeting with Nik and myself, a teacher and a speech pathologist. We answered a lot of questions, they watched Avery for a bit, then we were sent off. There was no multidisciplinary meeting, they wrote the IFSP themselves based on boilerplate documents and sent them to us to sign with no discussion. (I guess my special ed methods of the 90s were kicking it old school?)

The goals and objectives were bullshit generalities, but whatever. Since they had done no hearing, vision, autism eval…I ended up doing all that on my own through the pediatrician and self-referrals after the fact. I offered these results to EI, but other than asking about his vision and hearing (which was fine) they were not interested. They said he had multiple developmental delays across the board (motor, social, language, and cognitive) but only gave him 6 hours of speech path for the year. That is literally 6 clock hours for a whole year. Yes. I was shocked. I started Avery in private speech pathology, that I had to pay a portion of myself. Furthermore,  there was some political backlash about putting him in private. To get my insurance company to pay for it, I had to have EI say that he needed more services than they could provide. They did not want to say that, because if they did, they would lose their medicaid payments for him, medicaid payments would go to the private SP. Obviously this was a point of contention. I eventually got what I wanted.

So, he did get his six visits, in which his speech pathologist worked with him very little. Instead, she filled out her paperwork, asking me questions. She visited his mainstream preschool a few times, and they said she did the same there. She suggested that the preschool provide language pictures for Avery and she said she would provide them. She never did, so I made them myself. (Again, what about the parents who may not know what a picture exchange system is or have the resources/time to make one?)

When he turned three, he changed “teams” from EI to ECSE. This is when he started ECSE preschool. We had also changed insurance, and my new insurance did not pay anything for Avery’s private speech pathology. I was excited about ECSE preschool, because I found private Speech Path to be kind of regimented and intense. He did better some days than others, but some days it was a complete wash because he just was not going to cooperate. For me, the 4 hours a week he would spend in ECSE would be like less intense speech pathology. It would be more fun and engaging and gentle and he would have peers and teachers who could work right at his level. I had worked in ECSE before in both Nebraska and Kansas, and it was one of my favorite settings as a teacher. (Although again, kicking it old school, we had kids in 20 hours a week, not four. And they had therapists that came in weekly and worked with them one on one as well.)

I went with him the first day, and although they were NOT happy that I came and were very uninviting to me, they were kind to him and it was an ok atmosphere. I was happy that they got right in his face to communicate. I was happy that they already had picture exchange systems and were signers. I was happy that there were three adults in a room of nine kids. I wasn’t happy that the room was tiny and they didn’t have windows, but it was nice enough for four hours a week so I found it to be a good placement for him.

So, my main need with Avery is that he really needs a lot of one on one attention. You need to communicate with him by getting right down on the floor and in his face. Communication takes extra time because he just doesn’t have the vocabulary. He has some weird quirks that you have to deal with. If communication does not go well or his routine is changed, he can be a behavior challenge. I have worked with Avery and his speech A LOT. But I am just one person, with a hearing loss no less. I also have two other kids and a job and my own health needs and responsibilities. I am busy. I wanted Avery to have as much opportunity to be stimulated and pushed at his level to go further. For some kids, speech comes naturally. It doesn’t for Avery. You have to be deliberate. It is hard to be deliberate 24 hours a day. So, Avery is in either Goddard or ECSE 4 days a week for a total of about 12-15 hours total. This is an immense help to me, and is what Avery needs in order to keep moving forward. I was very happy with the situation.

The only thing I found quite odd was that after the first day, I put him on the school bus to go to ECSE, and never heard another thing again from anyone for 4 months. Not a note, not a call, not a conference, nothing. They required that I buy a notebook for his backpack to pass notes. (I remember working in ECSe and daily filling out the kids’ notebooks). Avery’s notebook is still totally blank and hasn’t been touched.  I looked in his backpack daily, and except for an art project or two, absolutely no information about what was going on at that school. No communication whatsoever. This is a nonverbal kid. This is a kid who needs consistency across settings. And nothing. How do they work with parents and have them generalize what they are doing to the home setting if they do not communicate at all? (Again, what if I didn’t already know a lot of communication strategies for speech delayed kids?)

It got so bad that Nik and I had this running joke. We would go, “Avery! How was school today? Did you participate in any new Satanic rituals?” “Avery! Did ECSE have you hustling on the streets today?” “What did you do at school today, Avery? Did you learn how to light up your bong?” It was like, we put this 3 year-old who doesn’t talk on the bus, and two and a half hours later he comes back and we have nothing to go on in-between. I would have visited sooner, but I had D’s situation to deal with and so didn’t have childcare for the older kids.

Finally, I gave up on D coming home, and decided I just needed to go there myself. I made arrangements for Aaron, but took Naim with me. I emailed the teacher a couple of days before and told her that I would be visiting. (Well, I asked, but I asked in a way that I was not really terribly concerned about her answer.) The morning of, she emailed me and said it was just so busy that morning with all 9 kids in a small room. And if I was going to come I needed to fill out their volunteer packet. To visit my own kid. So, yes, I have to apply. To visit my own kid.

I chose to “not see” that email and merrily went on my way down to the school. It is always a bad sign when you are not welcome to just drop in on your child’s school setting. Village Home practically begs you to be involved in the kids classes. Goddard School is extremely open and welcoming about visitors. This was just so uptight in comparison.

Speaking of Village Home and Goddard, I also visited those settings the same week.  Naim had asked me to be in a video in his filmmaking class, and Aaron had a bottle rocket launch that I was invited to. Both times I had Avery, and both times Avery and I were completely welcome in the activities. At Goddard, I was pleased to see that Avery had more opportunities to make choices than I expected and was doing very well there.

So, I go to visit ECSE, and I had asked her to please look out for me when they bring the kids from the bus through the lobby to go to their classrooms. (They do not allow parents to just walk back to the room to pick up or drop off kids. You have to wait in the lobby. Usually Avery takes the bus, but this day, I brought him.) I was concerned that I wouldn’t see/hear her and would miss her. On Avery’s very first day, we waited in the lobby and we were left there. The lobby cleared out and Avery and I were alone, so I had to wander around and get someone to show me where to go. So I didn’t want that to happen again.

It happened again. But see, this was what was disturbing about that. Avery had gone there four months by this time. This is not a large school. I waited in a prominent place with Avery right in front of me. I figured maybe they would miss me, but they wouldn’t miss Avery because they know him and he knows them. All the classes and the teachers walked by and not one teacher or aid recognized Avery nor he them. I don’t know. It was a bit weird. At Goddard, people I don’t even know are all “Hi, Avery!” when I walk in. He isn’t even IN any classes at VH and I don’t spend much time there anymore, and people say Hi to him, and it isn’t like he says hi back or anything. The other things that was amusing is that Naim was absolutely appalled by the place. The building is nice, it is a bit windowless where the classrooms are (several conference rooms have all the windows) but it is fine. Naim was all, “Are the teachers mad?” “Do they not want you to be here?” “Are the teachers the boss of you?” “Is this what public school is like?” “Avery’s other teachers are nicer.”

So, having just come from Goddard a few days before, I was surprised to see that Avery had not progressed much in this setting from four months ago. Part of it was that when I am there, he is all into me and follows what is going on less, but that happens at Goddard as well. But it was more like, they were not pushing him as far as he can go. They were not giving him many communication opportunities, and when they did, they would accept yea or grunts for answers when he can do more.  They were kind and gentle and seem to care about the kids. They had a nice little routine that I could tell Avery liked. I was ok with him being there, if it was all a bit tense and uptight, but I thought that they did not realize what he was capable of or push him hard enough to move forward. I found that his first EI teacher (the paperwork teacher) grossly underestimated his abilities. And I thought that was what was happening here, too.

So, I wrote an email that had three main points. First, that I would like more communication from them in some form. Second, that although I want to respect her space and not be intrusive, I would be coming to visit from time to time and I didn’t find it necessary to fill out any volunteer paperwork. (It isn’t like they don’t already HAVE all my information.) I said I would be fine signing in for security reasons, but I don’t think it would be necessary to apply for volunteer positions to visit my own child. Third, I explained the differences I saw between his home and Goddard performance and ECSE. I basically asked if we could meet and talk about this so they could better understand where he is at and basically “step it up.”

So, you all know I have a tact problem sometimes, right? Well, Nik is my tact moderator. I have him proof things for biting comments. He said I was being almost too nice. And I really did try to be nice. I was all about how I understood that they have so many kids that it can be hard to get to know every kid when you only have them a few hours a week. I was all about how we were a team and they were the experts on SP and early childhood but I could provide insight on my own kid since I know him so well, etc. I disclaimed that I know that in one day I cannot see everything that they do and I know that just by my being there, I change the norm. Rah! Rah! Nice, nice, but communicate with me, dammit.

A week goes by and I hear nothing. Then she says that she is going to observe Goddard and set up a meeting with me. Great! I think. That is a very appropriate response.

So the meeting was today. And it was quite awful and ugly. I actually like his teacher, who I will just call Jane. I do think she tries to do a good job, is kind, cares about the kids and is competent. To me, this was just an adjustment that needed to happen in expectations. A relatively minor realignment to make sure we are all on the same page.  During the meeting, Avery stayed at Goddard, but I had Aaron and Naim with me. So the very first exchange was when a speech path I had never met before came in and gestured to the kids and said, “Don’t they have school?” And Jane stage whispered, “Homeschooled!” Then there was a few beats of dead silence. I just laughed about that one.

So Jane launched into how this was the six month review, which no one ever told me that there was going to be a six month review, so I wondered if there would have been one if I hadn’t had come in and emailed. Nothing was said about the communication or visitation issue, so I let it drop. She went over his progress, domain by domain, including what the Goddard teachers had contributed. It was a little bit of an underestimation of his abilities. Some of the things they took credit for, he had been doing for months with me at home. I let these things go. In general, they were not way off, but a little off. Given that they don’t see him as much as I do, it is to be expected. Not a big deal to me. So I felt it was my job to report what I am seeing him do at home and where I think he can go from here, thinking that this can give them an adjusted idea of how much they can expect from him and they can raise their standards a bit.

Jane was fine, but the speech path I had never met or heard of before, who I will call Joan, seemed to want to challenge my assessment a bit. At one point, Jane had covered the info on expressive communication. But Joan wasn’t done yet and wanted to give me more info. Great! She is the speech path. She proceeded to read to me verbatim a transcript of a conversation that she had had with Avery, where he was less than communicative and gave her a lot of grunts and yeahs, and not much in terms of words. I have no doubt it went down just that way. OK. Fine. But she seemed to want to demonstrate how limited he was in his communication. I asked her how often she worked with him, and I basically got that she doesn’t at all. She just came in to do this assessment before this meeting. I didn’t challenge her on her assessment. I have never denied he has a significant language delay, but I was kind of wondering what she was trying to prove other than she new more than I did about my own kid. Or that I shouldn’t think he was doing so well? I don’t know.

But I am happy. I am all about the team and what’s best for Avery. Until they blindsides me with this:

Avery does so much better at Goddard that we think we should change him to a consultant model in the community setting.

OK,  let me translate that for you:

“We don’t like that you are meddling in our program and giving us your opinion in our area of expertise. So we are retaliating by kicking your kid out so we don’t have to deal with you anymore. Since we can’t legally kick your kid out, we are going to all but eliminate his services all together under the guise of “consulting” with the teachers at Goddard, in which we will come to Goddard once every two months or less and give the teachers a few pointers while we sit and do our paperwork and then leave.”

Consultative services are next to no services at all. My kid has a developmental disability and we just spent 20 minutes describing all of his delays, but he is doing better at a program with 2 teachers with associates degrees and 20 kids and no special ed services. They don’t see this as a problem with their program in any way. They see it, rather,  that Avery is not a good fit for their program.

……

It is not Avery’s JOB to be a good fit for their program, it is THEIR job to provide an individualized education that fits Avery’s needs. He is doing better at Goddard not because they are so great, but because ECSE is so lame. But rather than stepping it UP and matching him where he is at which is mandated by THE LAW, they would rather not deal with any accountability and just pitch him to the curb.

I actually had  this exchange (paraphrased to the best of my ability):

Me: Well, my concern is that if he loses ECSE, he does not gain Goddard. He isn’t exchanging a setting, he is losing one. So Goddard is irrelevant, really. This is not a setting choice between ECSE and Goddard, it is a setting choice between ECSE and nothing. Do you really think that no setting is better than ECSE?

Joan: Yes.

Me: So basically, you are saying that your program is actually detrimental for him?

Joan: No, just that he is more motivated by his peers.

Me: But that doesn’t make sense to me. First of all, because you just got done telling me that he does not interact with his peers much and engage or initiate with them much and that is something he needs to work on. Second, Avery’s peers are actually more of a match in ECSE than Goddard.

Joan: He seems to be more challenged at Goddard. (And then I asked about peer model program, and they said they don’t have one, but it says they do on their website….so….)

Me: Well, again, he would not be exchanging ECSE for Goddard, he would be exchanging ECSE for no services at all. What would you do if there was no Goddard? Because I am not required to provide Goddard to somehow substitute special ed services that you are unwilling or unable to provide. He would be replacing ECSE with sitting alone in my house or when I work with some interaction with me while I am doing 20 other things. Or spending the day with him and getting exhausted by burn out. I may be a former teacher, but I am not a speech pathologist nor an early childhood specialist. And he would not be getting any of the very services he needs. It seems to me if he needs more challenge, then ECSE should challenge him more. It isn’t like I am asking you to change your program in any way for him, I am just asking that when you communicate with him, you use and expect more vocabulary, more choices, more standards. That is more of a change in mindset.

Jane: We can’t do that. And this is about what is the best setting for Avery.

Me: Well, setting is only one aspect of what is best for Avery. What he needs is clock hours of stimulation, active engagement, and communication opportunities from people who can understand and work with him at his level. He needs as many of his waking hours in as many of his days as possible to be filled with learning opportunties to ameliorate his delays. You are reducing his clock hours of therapy to next to nothing rather than make minor adjustments to how you work with him, which is the entire objective of special ed and having IEPs.

Them: something something that I don’t recall about stupid shit that was illogical and condescending about how I could take him to fucking library storytimes or something instead.

Me: Well, are you telling me I don’t have a choice?

Jane: We have to decide what is best for him as a team.

Me: Well, I am not going to sign off on this today.

At this point, Joan left the room with no explanation. Jane and I talked a bit less contentiously and maybe small talked with the kids. When Joan came back, I nearly cracked up at the absurdity of what she said next.

Joan: (deep breath….long sigh). I just had to take a bit of a mental break and just take a bit of a walk. I just wanted to see if I could come up with any ideas.

Me: (in my head) Translation: You ran to your supervisor and asked her what to do about the bitch parent you are dealing with. What did she direct you to do?

Joan: And my idea is that we don’t have to decide this today. Avery will change a lot in the next few months so maybe we could revisit this in the fall.

Me: Okay, that sounds fine, but his annual review will be done in November, so we could just wait until then. (In my head: You are going to either hope Avery has a language explosion in the next few months and no longer qualifies or you are giving yourself time to get reinforcements to build your case. You have also given me more time to get reinforcements to build my case. Fine.)

Them: Agreed, agreed. Nice platitudes about how great it is that I am so involved in my kids’ educations and that I “CARE”. Talk about the weather, grilling my kids a bit to see if they are normal or weird homeschoolers, Bye, Bye.

/end scene.

And then I walked outside and Naim says, “Those teachers were really running away from you and trying to change the subject. I think they had a secret that they thought they could trick you with but then they were surprised you figured it out.”

Bwah ha ha ha ha! I love that kid.

So, I got a reprieve, but god that was ridiculous. The combativeness between special ed teachers and parents is worse than that of blind self-advocates and the OCB. I so felt like walking out and just being like, FUCK THIS. This is exactly why I homeschool. I am going to have to do all of Avery’s so-called special services myself like I have mostly done all along. I thought I finally had at least 4 hours a week of help with Avery and god forbid I give some feedback to try to make it more productive and successful and that is JUST TOO SCARY for them.

It is like it is such a game for them where they role play “I am the expert and don’t question me” instead of realizing they are talking to  a real-life disabled person with real life needs and contributions. It may be your job, but it is only my life! It is only my 3 year-old’s actual life! But don’t interfere with their program! Don’t try to manipulate the behemoth into actually providing the services it is supposed to provide for the people it is supposed to provide it to. The behemoth is here to benefit those that profit from it. It ingests itself and rolls along, maybe spitting out a service or two as a random by-product if you hit it hard enough for long enough.

I know. I need to write a book.

D.

I am going to write about D, because I need to. I don’t know what I am going to say yet. The intersectionality between being a disabled person and being the caregiver/family member of a person with, in many ways, a more severe disability is a unique experience that not many people understand. Even as a deaf blind person with kidney disease, with D, I was never the neediest person in the room. I was many times the most able-bodied. But I still dealt with the issues of my own disability, both inherent to it and the social stigma around it. Being a caregiver/family member to a C6 quadriplegic did not add to my challenge, they multiplied them in many ways. Away from him, people maximized my disabilities and minimized my capabilities. With him, my needs were completely minimized and my capabilities exploited. I remember once when I started dating a professor and we were in a coffee shop. I said something about needed some kind of condiment or napkin or something, and he jumped up to get it. It was odd. I sat there and thought, oh! people can do stuff for me? I can sit here while someone gets my ketchup? I don’t know what to do with myself.

D and I met like so many other disabled people meet. It was because as disabled people we were shoved together and segregated. Take away the disability and we would not have had much in common or even liked each other. He was a young freshman, I was 4 years older and in grad school. His family was military to my pacifism, he Catholic to my agnosticism, he rural to my urbanism, he was into sort of being popular and I could not give a shit. We became friends because I persued him. Not in the dating sense, really, just because I was new and bored and lonely. He was there, in the same building. Always there. He never went anywhere. Yet he had a car that I could see in it’s disability spot right outside my window. Once I decided I needed a ride desparately somewhere and I made him give me one. I was late to a school thing, and he took forever. He had to change shirts, change wheelchairs, go through a 15-step procedure to get the car going. I was so late that I missed the woman I was supposed to meet. This tediousness with procedures and lateness would only get worse.

It is funny to think back on it now. I see all the signs of all the problems in years ahead were all there in those first few weeks. I disregarded them and made excuses. His mother lived with him at student housing. But that is just because he is newly disabled and he hasn’t found his own attendant yet. But then when people started applyng to be his attendant, he decided for them what they could handle. This one has a baby so she will be too busy. That one lives off-campus so she won’t want to drive that far. The first time we went “out,” he invited me to go to Perkins with him and his father. HIS FATHER??? Why is he inviting me out to go with his FATHER? Still, I shrugged it off and said yes. The whole dinner, his father talked about all of his son’s accomplishments in an almost starstruck way. This family is about two-years out of the new-to-SCI trauma, I decided. Give them time to adjust. But, the adjustment never happened, really. I had fought and fought hard to win independence from my family’s overprotection and underconfindence in me. I had fought hard to be an independent blind person. I was proud of who I was.

But even our outlook about our disabilities were different. He was involved in a lawsuit with the County/State about the road he had his car accident on. It was no one’s fault. It just happened and his suit was thrown out at the summary judgement stage. He wanted some resolution as to Why? Why had this accident happened? I was just the opposite. I could care less why I am disabled. I just am and that’s all there is to it. Maybe that comes from the congenital/acquired disability difference in outlook, but we were different there. Once we were going down to this lake by his parent’s house and, although he needed some assistance to wheel down by the shore, 10 people who were around came to hover and help him. I thought it was ridiculously over-the-top and I told him so. To me, those people might have been well-meaning, but they were being demeaning. They didn’t ask him if he needed help and what kind and then follow his direction, they took over it some kind of patronizing, hand-wringing way. I hate that kind of display around disabled people. But he said, “Well, it is nice to know all those people want to take care of me.” His comment gave me shudders. But still during this time, we lived together out of convenience and I became one of his attendants. He had health problems off and on and I made big sacrifices for a young graduate student in her 20s just starting out her career for him. I missed finals to sit all night with him in the hospital. I missed work when he would call me at my job and tell me he was in a predicement and could I come save him. (i.e. once a bookshelf fell on him and he was holding it up on his lap, but could not move it. Could I run home and get it off of him?) The emergencies were frequent but not constant, and we were young and energetic. I felt good to be able to help him. I felt like the sacrifices were worth it. And I admit, I probably got a little bit of selfless martyrdom head pats because of my role as his caretaker. It was a burden but it wasn’t a BURDEN. I had voluntarily taken it on.

Still, D and I got along well and had many good times. He is a likeable guy. Intellegent, thoughtful, sensitive. He and I could get into all kinds of philosophical discussions. I keep telling Nik, I wish you could have known him then. The “glory years” when his parents lived farther away and he had more normal expectations of himself. And, of course, his health was better, too. I enjoyed going places with him and hanging out with him. We briefly tried a “romantic” relationship for a while, but I think it was more youthful experimentation than anything else. And in part, him using me as a consenting guinea-pig to see what he could do sexually as a quad. But we ended it after a short period. I don’t think either of us had that much attraction- chemistry with each other.  He was, of all things, comfortable. He was a friend. He was somebody who was always around. He became family.

It was actually Nik who I was pining for when I met D. It had been a year since Nik and I had seen each other and I knew I had to get OVER it. D was probably somewhat a rebound thing. But after we tried our little dating thing and ended and still tried to be friends. I went on to date other people. When I first moved to the West Coast, I dated someone who was HORRIBLE for me. Same story, I was lonely and in a new place. He was there. He was actually quite charming and fun to be with when he was sober, but I eventually figured out that he had a raging, nasty-drunk alcohol problem. That, and he still hung out with his high school friends in his filthy house. Then I dated the professor guy. We had a LOT of physical attraction (D actually said he was too good looking for me once) and were well-matched intellectually, but he was 17 years older than me and kind of controlling. We could not quite find an equitable balance.  Then, I rediscovered Nik. And had Nik 2.0 romance of sorts. Nik was always the one who clicked for me best. But Nik 2.0 had immigration and first wife problems. It wasn’t our time, and it didn’t seem like it ever would be.

D and I had been living in cities about 2 hours apart at this time, but we decided to move back in together. I had lost half of my job and he was having health problems.  So it was an arrangement of convenience. But after the alcoholic and the professor and Nik, I just felt so DONE with dating. I was 31. I felt old and like the bio clock was ticking. I did not want a boyfriend or a husband. I felt I could do better on my own. I told him from the get-go that I was going to have kids. That was the Next Big Thing for me. I was researching adoption and Single-Mothers-By-Choice. Living with him was just a cost-saving measure for me. A companionship thing. And he was my best friend.

When we moved in together, I had NO IDEA his health was as bad as it was. And he was doing absolutely nothing about it. He laid on the couch all the time in the dark and did nothing. So I literally took it upon myself to FIX THIS. I have a masters in Special Education. I am trained to do Person Centered Planning. I know a thing or two about how to get around in the health care and disability world. If he is too sick to take care of himself, then I will set him up in a situation where he can. First priority was health, second was a sustainable living situation with proper supports. He would have everything I knew and every resource I had at his disposal. Except for my job, I stopped everything to take care of him. I hauled all his family together for person centered planning meetings. It was all positive and wonderful and everyone was on board, but then (except for his dad) they all went their own ways and did not follow up or contribute much to help. So I ended up doing almost everything. I called hospitals, I set up plane tickets, I went with him to Denver to Craig Hospital three times. I sat in the OR waiting room here. I made plans, I learned about diets and made menus and went shopping, I haggled to get equipment and wheelchair seating and continuous flow air metresses. I learned how to administer infusion medication, I learned how to maintain a wound vac. I learned about wound management and MRSA sterilization, etc. I gave up my life for him. The idea was, of course, to get him to where he could take over himself.

And then the next year, I had to kind of do the exact same thing (albeit long distance and to a lesser extent) for my dying mother. It was during the dying mother period that I started to try to settle some housing security for both of us.  I don’t know that I would have done it the way I did, looking back now. But it was my mother’s idea. It almost became a dying quest for her to find me a nice, long-term place to live so that if anything else happened to me, I would have at least housing. At first, she was on board to help D as well. She wanted us both to be secure. But D dug his feet. At this time, I was ready to move on with my life. I wanted to have kids, I wanted to Get On With It. I felt like things had been stalled for years because of other people’s illnesses. And my health was not getting any better. It all felt very now or never.

So after my mother died and my father and I made this arrangement, I told him I was moving out. We had a wonderful apartment, but not big enough for kids. And I strongly urged him to keep the apartment and get some kind of attendant/roommate situation. But instead, he decided to move into an overpriced apartment down the street from me. He was part-time selling software then, and there was the idea that he could perhaps afford this place on his own. But it never happened. It drove me nuts that he didn’t look at any other places or that he didn’t apply for section 8 housing or anything. He just relied on his dad to pay the rent. To me, this did not seem self-sustaining.

Things started to go downhill for D and I when I had kids. But looking back, nothing really changed. It was just that kids amplified the problems he had with responsibility and commitment. And because they were my KIDS, I could not just shove away their feelings so easily like I could my own. They did not have my skills in rationalizing away stuff, or blaming it on disability.  Like Twisty Faster says, you can think you have a wonderful, enlightened guy as a partner. But when kids come, the gloves come off. That is the real test. He didn’t pass the test.

It is so obvious to me now that I made a grave mistake in having D as the father of my kids. He was not ready, he did not really know what he was doing. We were coerced greatly by his family. Though it would surprise them to realize that their poor treatment of us during my pregnancy is probably the one thing that solidified D’s role as my kid’s father.  Because they were so unsupportive, and just MEAN, he dug his heals in more with me than with them. I admit that I went in to this as a single mother by choice and was committed to that up until I lost my vision and D’s brother and sister-in-law came over under the guise of bringing us dinner and proceeded to scold us for essentially what they were sure our plan was to leave the babies off at his parents house to raise because we were so incapable of doing it ourselves. In my vulnerable place then, it made me insecure and scared for my kids. It was not until 4 days after the kids were born, still in the hospital, that D decided to be placed on the birth certificate. I think it was a vulnerable and scary moment for us both. We had absolutely no support from any of our families, and it seemed like we just had each other and the babies.

We pulled together and tried to make it our own kind of family. We lived three blocks apart. We were not married or even in a romantic relationship. But we were committed to these kids and each other as our own kind of family unit. There was a honeymoon period for awhile, but then things started to crack wide open.

He hid and lied to me about a foot wound for over six months. He hid it and lied to everyone. When it was discovered, he had to be rushed to the ER and ended up having his leg amputated. The fallout from that injury was huge. I was blamed for the injury itself, both for not doing anything about it and for having kids that distracted D from doing anything about it. It split apart his family, and again, except for his dad,  his family never really recovered their relationships. It caused a two-year hospitalization (on and off) and it made me take a huge step back in what I asked of or expected from him.

If there was any truth to the fact that the babies (his attention to them) was what caused him to hide his injury and not take care of himself, then I wanted to be no part of that. I did not want to put any pressure on him to spend time with the kids over his health. I already never asked for child-support. I never asked for him to take “custody” of them, which at that point, he couldn’t do himself anyway. I had only asked that he spend time with them. Now, I didn’t even ask that. I would say, “You tell me when and how much you want to come over or us to come over there. YOU tell ME what you can do and I will work with that.” So he did.

But then his follow through was awful. There were missed phone calls, dinners, etc. There was always an excuse. He dropped his keys. He felt tired. His catheter tube was clogged. By this time, the kids knew and expected that he would come, and he didn’t. I tried even more flexibility. Come see them 2 times a week, anytime. Doesn’t matter when. I will come there. One time a week? How about calling or doing FaceTime?  I made excuse after excuse. He doesn’t feel well. He is tired. Whatever. But it felt like I had agreed to have children with a deadbeat dad.

I mean, I worked for him, I had keys to his house. It isn’t like the kids didn’t get to see him. But it was all on me. I felt like I was pushing, pushing, pushing to get him to give them the attention they wanted. Then I would feel guilty for pushing because what if this push is the thing that makes him sick or have autonomic reflexia and end up back in the hospital? What if I am pushing too hard? I felt like I was constantly negotiating the terms with him. Always compromising on his behalf. And then he STILL wouldn’t follow through.

The big question is…am I asking him to do something he can’t do? Am I asking too much? But HE is deciding for himself. Maybe he doesn’t even know. What is fair here? What is fair to the kids? To me, the mistake was evident. I was WAY more into these kids than him. He loved them. He enjoyed their company. He was good with them actually. I give him a lot of credit for the knowledge and interest they have in science. They have a strong bond. But he doesn’t ask about their school, their doctors appointments, their friends. What they do all day. He doesn’t ask. He’s not concerned about us financially. Not that I expect him to help, but some concern. He is not there for the hard conversations. He is a friend. If I wouldn’t have hung the weighty “dad” label on him. They would just be friends and there wouldn’t be so much baggage with that word.

I gave him an out once. It was 2007. They were still too young to know. I said that I could get him taken off the birth certificate, he could still  be friends, still be involved in their lives, but he wouldn’t have that heavy dad responsibility. He didn’t want too. He wanted to be dad. So I said, then this is it. It is just like if we had conceived them naturally. You are dad then and we are not going to mention this again. But you have to step it up and BE dad. He agreed. I also told him that I was going to go on with my life and not consider this a family unit anymore. It was a dissolution of the partnership. I said we could still be friends and see each other, I would still help him out. It was more of a mind-shift. I was not going to worry about this sort of family partnership thing. We would be like an amicably divorced couple who was raising kids. He seemed relieved and said he understood.

I wasn’t really thinking about Nik when we had that arrangement. But in my mind, it opened the possibility of Nik up for me. (That, and the fact that Nik’s kids had moved away from being local to Nik.) But when Nik and got together, D acted all hurt. So I did everything possible to arrange things so that he was included and that we were a three parent team. He was with me when I delivered Avery. He was at our wedding. His name was on our birth announcements. We have family pictures that include the 6 of us. We went to church together. Nik went over and worked for him when his attendant quit. We stayed in Portland for him when Nik had a job in both Toronto and later Vancouver. We invited him over for Christmas,  Birthdays, etc. We worked really hard to make it work for all three of us.

But it didn’t work for him. And quite honestly, I started to feel like property. And I am not going to play that misogynistic game. I am not someone’s territory to be pissed on. I strongly believe that we did everything in our power to make him a part of our lives.  He sort of began to fight over me, but it was no fight because Nik wouldn’t participate. He would just step out and let me handle it. And it got tiring. And so D started to withdraw. he quit going to church with us. He barely came out of his apartment. He would only sometimes answer phone calls or email. It was hard to track him down.

Parallel to this, his health started to decline. When it is all happening at the same time, it is hard to parse out what is health related and what is D just being an asshole. Nik started calling him “Kalrot,” which is Swedish for cabbage root, and it became code for us to refer to him when we didn’t want the kids to know. (I stopped telling the kids about any arrangements made with D, so they wouldn’t get their hopes up. So I would say, No kalrot to harvest today. Meaning, he never got back to me about some arrangement or other.) But I would also defend him to Nik. As a person with health problems myself, I know how it feels to just feel so crappy you don’t want to deal with anything.

And that has been the crux of this whole thing. Where is the line between what you can accommodate because of someone’s disability and when they are just being a goddamned immature asshole? And how far must you or should you go to accept someone for who they are? What if this is the absolute best they can do? Is it fair to just be like, sorry, that’s not good enough? One of our close family friends who lives in Toronto and has only met D briefly said once that maybe D does not have the capacity for what I am asking of him. It isn’t that he is just refusing, he CAN’T. Maybe. But is there a difference to my kids between can’t and won’t? They are still being hurt.

It does definitely feel like I have just grown so much past D. Like he is still stuck in his early 20s and everything has been arrested development since. I blame a lot of this on the relationship he has with his father which is just so damaging for both and which they are both equally responsible for. Nothing I or anyone could do would be enough compared to what D’s dad does for him. Which is basically be at his beck and call at all times. Give him any money he needs (that he has, they aren’t rich.) And be his constant champion without expecting anything in return. I believe that D’s father has a very deep love for D and that he thinks he is doing the right thing. He has made tremendous sacrifices for him. It actually is painful for me (and many others) to watch the way D just takes him for granted. But many people have tried to intervene and point out what a destructive, enabling relationship it has been for them both and to no avail. I think everyone has just given up. But when you have a constant servant that takes care of all of your problems and needs and sets no boundaries while telling you  that you can do no wrong, it makes you an entitled ass that can’t really take control of your own life.  I used to wonder all the time where D could have gone if his father hadn’t retarded his development so, but it is useless to wonder about it anymore. They are each other’s worst enemies. And best friends. It is not healthy, whatever it is.

The other side of that is that D does live with tremendous challenges. He has chronic pain that he tried to control with a variety of very strong opiods and narcotics. His day to day health challenges and maintenance are nearly a full-time job. The amount of crap he has to deal with as far as insurance, medical care and disability services could make your head spin. Like, I could write a book about the ridiculousness of it all and people would still not believe it. I understand why his dad does what he does. I get the desire to make his life easier in any way possible. I am guilty of it myself. Where the boundary falls between empathy for someone else and also knowing that you cannot sacrifice yourself for them is really hard to figure out.

D is a drug addict. It isn’t that he is doing anything illegal. He actually manages it better than many probably would as far as keeping his doses of medication lower rather than higher. But the fact is, he has been on oxycontin, marijuana,  fentinyl, methedone, morphine, klonopin, baclofen, etc. for over 2 decades now. Your brain can’t take that assault and not rot a bit. He is the worst kind of addict, because he cannot just go to NA and do his 12 steps and detox and be done with it. He is stuck. You cannot ask him to live in chronic pain that would also stop his life just as much. So what do you do? Just accept him as an addict? Just take whatever he throws at you? Is some little bit of D better than no D? How do I decide this for my kids?

I quit. I feel bad about it, but I quit. I feel elated about it, relieved, certain, relaxed….guilty, sad, torn, in mourning….tired, exhausted, fatigued…confused, clear, confused, clear. I quit.

He last spent the day with us on Christmas. Then he went to the ER the next day and was admitted to the ICU. He almost died. He had an emergency colostomy. I sat with him in the ICU, the hospital. I talked to doctors, I researched colostomies and learned about their care. I took the cat, I took claritin every day because I took the cat. I talked to the kids. I prayed for him. I wrote him a letter begging him to try to survive this. I took his cat and messenged him a pic daily of him. He moved to the nursing home and I took the kids up there numerous time to visit. A friend of mine became his attendant a few months ago and was going to lose income because of this and have to quit. I helped arrange for her to keep getting paid. I have even paid her out of my own money before so she could stay. I have talked to the kids endlessly about how he is doing and listened to their worries. I have watched him get better and rejoiced.

So for awhile I did not expect phone calls of course, when he was in the ICU and the like. But as he was getting better and better in the nursing home, I kept expecting more. And I have gotten less. I get into this catch-22 with the kids. If I tell them he is too sick to call or return emails, they worry that he is so sick he might die, like, tonight. If I tell them he is just not answering their calls, they want to know why and I don’t know why. I tried calling, messaging, emailing etc. It went on for about three weeks and nothing. The kids stand by me as I call, and get disappointed when there is no response. Then each time my phone rings they get excited and it isn’t him. They ask me 20 times a day if he has answered their message. They ask what we can do to get him out of the nursing home. They ask when he is coming home and he kept telling him, next week…next week…next week. He is still there. It has been 4 months.

So I wrote him an email (and I copied it to his dad, because he told Nik once that he doesn’t read my emails.) and I just said, I am done. I am not going to work for you. I am not going to try to reach you. I will leave the kids to their own decision about this and I will facilitate anything they want to do, but I am going to tell them that I don’t deserve this so I am going to quit trying. I am going to quit reaching out. Calling, emailing, rescuing. I am done. I will tell the kids that they can call you, visit you or whatever, and I will help them with that if they ask, but I am also going to be honest with them about the likelihood that they will get any reciprocation. He left us long ago. When he comes around, it is because he needs my help.

I don’t object to helping him. No one can say I haven’t tried. And if he wants to stay in the nursing home indefinitely and that is his decision, I am ok with that, too. I have always been able and willing to work within his limits. and I had to be honest with myself. It is within his limits to push the dictate button on  his iPhone and speak a sentence or two, even if it is just to say he can’t talk to us for three months or whatever. It is within his limits to have a two minute facetime conversation with his kids. It is within his limits to ask about the kids doctor’s appointments, school stuff, etc. There really is no excuse for him not to do these things, and I need to stop giving him one. Or I am being just as bad as all those stupid disability workers that blame everything on disability and have no standards for disabled people, much less themselves.

It was hard to talk to the kids, but it went surprisingly OK. I kept it that it was MY decision and they could make their own decision. I said that I still loved D and that I do not think he is bad or evil or anythng. I simply said that I did not deserve to be treated this way and sometimes I have to look at people’s actions rather than words. And if he doesn’t want to answer my phone calls, etc, then I am not going to call, etc. It is that simple.

I know that the fall out is not over from this for them. I know that there will be more pain and heartbreaking discussions. I know that I cannot shield them from that and I know that it was a poor decision that I made many years ago when I was vulnerable and alone in a hospital room that lead them to this fall out. But I talked to them over a week ago. They have stopped asking about him every two seconds and have only brought him up a couple of times. They seem more relaxed, we have had a good week as a family.

There is no book or expert to help me navigate this one. I want a “What do you do when you were an isolated deafblind single mother who asked her best friend who is quadriplegic to be your IUI-conceived twin’s dad in a weak moment and he said yes but then flaked out but not before he bonded with them and they fell in love with him and then he got sicker and sicker and more and more flakey and maybe it is because he is a drug addict or an asshole and you don’t even know but you decide to just let go because that is what it seems like everyone wants except of course your kids who love him and just want to be loved anyway so they will get the worst end of it and you are trying to cushion that as much as possible”  guide book.  And I ain’t ever gonna find one.

I am just trying to step lovingly, one foot in front of the other.

Follow Up: The Why’s and What of’s of Homeschool

A quick grab of a chart showing the results of standardized tests, Public school vs. Homeschool students. By definition, all public school kids are going to be at the median 50th percentile. The homeschool kids are anywhere from the 80th to 87th percentile. Although some criticize these studies as homeschoolers being self-selecting high parental involvement, it certainly shows that homeschooling doesn’t HURT.

What we do all day in Homeschool often leads to the question of why do it at all? It sounds like a lot of work.  And, it is. And it is a magnification of the choices that all parents (mostly women) struggle with between work and family. Most parents are glad for the reprieve of the day-in/day-out care when public school starts. I get that. I have that struggle.

My journey to homeschooling began long before I became a parent. It began from being a teacher in the public schools. I was a special ed teacher. When I first started out in college, we were on the tail end of the self-contained classroom/resource room model. This is where kids with IEPs were segregated or pull-ed out of their regular classrooms into special classrooms. It was one step closer to integration from the special schools, but the kids did nothing much more than share a building with their able-bodied classmates. They did receive a pretty individualized education, but segregation was not the answer.

By the time I got to grad school, “inclusion” was the model of choice and one of my main professors was an inclusion zealot. We were on the cutting edge of inclusion education for kids with significant and multiple disabilities. It all sounded WONDERFUL in theory. Our kids, often who had severe cognitive and other physical disabilities, were going to learn right along with the other kids all day. Yes, they would be in math class. But while the other kids were going to learn addition and subtraction, our kids were going to work on things like handing out papers (one to one correspondence, socialization), picking up and sorting counting cubes (fine motor skills and early cognitive skills), or drawing on paper or whatnot while the other kids worked on similar things. It was integrated, parallel learning.

In practice, it was something else. First of all, the regular ed teachers hated it and hated us. Part of their hate was legitimate. They simply did not have time to deal with this separate but simultaneous track with the 1 or two kids we gave them, plus a few of the LD/ADHD kids the other special ed teachers gave them, plus 25 other kids who are individuals with individual needs albeit without IEPs. Even when we placed a 1:1 aid with these kids, it was too much for them. Often times because the aids didn’t really get what we were doing and did not do their jobs. They didn’t see the point, so they did nothing with these kids beyond the basics of care and feeding. As a special ed teacher who has a caseload rather than a classroom, you have to depend on aids to really dig in and find the opportunities to teach. You can train them and train them, but if they don’t have the attitude or see the vision, they aren’t very effective at it. It is an $8/hr job for them. Of course some are great, but many are just not going to work that hard for $8 bucks an hour. Which brought up the other issue, which was just plain, old disability discrimination. The regular ed teachers and aids just did not think our kids belonged there, they did not see the potential and they did not bother to try. It was a constant uphill battle, which ended much of the time with my kids not doing a whole lot all day and just sitting around regular classrooms and wasting their time.  I don’t think we ever really won any of those battles.

But if there was a win, it was with the kids. I did not want to go back to the segregated model because the kids got along so well. The regular ed kids were great with my kids. After the first few days of giving them a bit of education about who these kids were, they were social and friendly and accommodating. And my kids enjoyed the interaction and became more engaged and more interactive. But as far as their IEP goals, not a lot of learning was happening. And then you get the OCB problem. If no one thinks the kids can do anything in the first place, no one is bothering to teach them anything and no one worries about accountability.

Even though I saw this conflict, my professors continued to push the fact that we have to get the reg ed teachers on board. And we were having this discussion about how the reg ed department and the special ed department at the university were in two different buildings. They were completely segregated. And so my professors (I also worked in the special ed department) were trying to get us moved to their craptastic building. And we were in this lovely new, modern building. And she said, “We can’t get there from here.” Meaning we can’t get to full inclusion without integrating with regular ed on campus. And it dawned on me…WHY on EARTH do we want to get there? My first reaction was in relation to that crappy building. But then the crappy building became a metaphor for the whole thing. Why are we trying so hard to merge with regular ed and shove our kids into their model? Why? Their model sucks. It defies the whole concept of an INDIVIDUALIZED education program. Why should we be trying to get there when at the same time, they are trying to get here? (Look in any teacher’s guide and you will see little side bars and special sections for ESL learners, gifted learners, and LD learners, all under the banner of “differentiated education.”)

With all the research coming out about learning styles, individualization, differentiation, etc. I at first thought the answer was some kind of special ed, regular ed compromise. I was all for this solution of having only ten kids per class and each kid having their own IEP. All kids would have one so there would be no distinction between special ed and regular ed. But in the end, I knew that it was never going to happen with classes getting bigger and teachers being traded for less expensive aids. And I also knew that in reality, ten kids is still a lot to individualize for all day long. And then when No Child Left Behind came along and educational reform was going in completely the opposite direction of individualization, I knew it was not likely to happen anytime soon. It was at this point that I started thinking about having kids and how I would educate them. I started looking at private schools.

I do think there are some good private programs out there, and some good charter as  well. But privates cost more money than I have and charters are hard to get into, and hard to get to if you do not drive. When my kids were little I was alone and totally blind. I spent a lot of time at night or in-between naps reading books about child development and education. I read books by John Holt, John Taylor Gatto, Grace Llewelyn and Alfie Kohn*.. These books made me rethink public school altogether and introduced me to the possibility of homeschooling. Since I was losing my vision and hearing, was often sick with kidney or infection related problems and had no money for daycare anyway…having kids pretty much ended my career at that time. I thought, if I can’t work in a traditional job, I am not going to sit idle all day. The LEAST I could do is to educate my own kids. I will take a small burden off the public school system and I know that I will do a better job for them than they will get in public school.

Before doing research on homeschooling, I probably had a lot of the same misconceptions as everyone else. I thought it was for religious freaks that wanted to keep their kids away from learning about science and evolution. I thought they read scripture at the kitchen table all day and that they would miss out on socialization and just turn out to be weird kids. I thought a plain old mom, even one with a teaching background, was fooling herself if she thought she could teach calculus.

I also had a bit of the attitude that a lot of teachers (and social service workers, disability workers, etc) have, which I call Overprofessionalization.  You worked hard for your bachelor’s and master’s, you have all of your certifications and licensers, you start to think that you HAVE to have these in order to do your job. How dare someone think that they could do what you do without going through what you did . You are the EXPERT!  All that is is credentials inflation, nothing else. It takes no degree or certification or whatnot to be a teacher.

But my knowledge of the bullshit that is the certification process for blind orientation and mobility trainers made me know that Over Professionalization doesn’t mean much. Time and again I saw blind people with shabby O&M skills (taught by certified O&M specialists) learn and improve by being taught by their friends. Plain old blind people who volunteered to go around with them and teach them travel skills. They had no formal training or certification, they just knew travel because that is what they did all day and they believed in themselves. I saw that the certified instructors were not only not teaching good skills but were literally making it worse by making it unnecessarily over-technical and by instilling a fear and anxiety that the blind person should not be trusted to go it alone (or with another person) who was not an EXPERT! like they were. I saw these blind people who had years of bad O&M training make remarkable and life-changing improvements in weeks when taught just by their blind friends informally on weekends.

So, I transferred this to teaching. It isn’t that I learned nothing useful in my training to be a special ed teacher. Some was useful, some wasn’t, a lot was plain wrong. But it is that you can learn this stuff anywhere. And that we are all teachers to some degree. Some are more natural at it than others, I suppose, but credentials aren’t going to change that. One of the statistics that I hear again and again is that the best precursor to educational success for kids is how involved the parents are. This trumps school district, socioeconomic level, race, district, all of that are controlled for and still the best thing a parent can do to ensure a child’s success is to be involved in your kid’s education. In other words, kid’s whose parents are homeschooling in addition to their kid’s public school attendance are creating the most successful learners.

Say what? Homeschool? But I don’t homeschool.

Yep, you probably do. Do you read to your kid? Take them to places like the library, museum, and the science center? Look over  their homework? Teach them how to cook? Buy them one of those BrainQuest workbooks from Costco? Select toys based on their educational value? Watch an educational documentary with them and discuss it afterwards? Have ten million Why? and How does this work? questions? Take them to soccer? Get them a reading tutor when they struggle? Spend a lot of time with them and monitor their learning? Then you are doing exactly what homeschoolers do. You supplement public school by homeschooling. And that is the number one predictor of success for kids in public school. You are homeschooling, albeit part-time, and your kid does so well because you know your kid and you taylor everything you do with him to his exact level. You individualize your child’s education better than any public school teacher can.

People sometimes are surprised that my homeschooled kids are in so many classes. They say, you are not homeschooling! You are using public school methods! And they are right, I am. But then I turn it around on them and tell them that they are homeschooling their kids. No one is a purist, here. But the ideal between both of these styles of education is individualization and choice.

If (some of) the Christians are homeschooling to shelter their kids from the world by putting them in a protective box, I am homeschooling to break out of the box that is public education. For me it is about freedom, democracy and self-determination. Education can be gotten anywhere in any place. The world is an exciting place. There is no need to shove it into state standards or the district curriculum. Half of what you learn in teacher’s college is what those standards are and how to follow them. So, out of the whole world of knowledge out there, Teachers are trained to limit it to what some arbitrary board or committee has decided it should be. Teachers learn to box it in and make it fit. It needs to fit a 20 by 20 classroom. It needs to fit the mechanics of teaching 30 kids in that room. It needs to fit what is readily available in that room (books and supplies.) It needs to fit what money is available to that room. Teacher’s college teaches you how to box all that together. It does not so much teach you how to teach kids.

Because to teach kids is to know them. And to let them go where they are going to go. Most teachers really try to do this, but there is a lot that is working against them. As a parent, almost nothing stands in your way. And therefore, almost nothing stands in your kid’s way. The whole world is open to them. And there is a guide for them that loves them and knows them well and is going to help them attain it at the exact level and speed in which they are ready. No wonder parents do so well teaching their own kids. And no wonder it doesn’t even matter if a homeschooling parent has a college degree or not. The success of homeschooling remains just as high whether the parent has a Doctorate in teaching or no high school diploma. It is about individualization and choice.

My kids know that they have certain rights and responsibilities as self-directed learners. They know that they have to become literate and well-educated in order to earn their place in society. This is their responsibility. They also have the right to choose how they are going to do this. They have the right to largely self-direct what they are going to do for the first 18 years of their lives. These years are not preparation for some abstract future, these years are what they are living now. As such, they deserve as much control over that time as is feasible. There is a big, fascinating world out there, and it would not be fair to box it neatly for them in some predetermined fashion. They need to go where their hearts and minds take them. I am just here to facilitate that.

I know that quitting your job and being a homeschool parent is not something everyone can or wants to do. But I think you could take principles of homeschooling to the public realm in a lot of different ways. I have a lot of ideas for how we as a nation could support this for all kids in a publicly funded kind of way. This post is getting too long, so I will save it for another post. But I will say this: One of the criticisms homeschoolers hear is that if we support public education but don’t like it, we should work to change it. I especially hear this a lot as a former teacher. They think we should stick with it and join the PTA or the school board or volunteer in our childrens’ classrooms. My response to this is threefold.

1. You cannot change public school as fundamentally as it needs to be changed from these “inside” roles. Not even as a teacher or a principal is this going to be effective. The public schools don’t need to be fixed, or even overhauled. They need to be dismantled and rethought in a completely new way. You can’t dismantle and rethink from the inside, you are too close and too bogged down by the day-to-day urgencies.
2. Nothing of significance is going to happen in the next 13 years. That is when my kids are going to school. Those years matter. I can’t wait that long.
3. As alluded to in point one, change is going to come from the outside. From those who are thinking completely outside the box and who have gotten down in the dirt with the fundamentals of what education is and should be. Who is doing that right now? Homeschoolers. Other people are, too, of course. But homeschoolers are on the forefront of this new way of thinking about educating kids (It’s actually not new at all of course. Compulsory education didn’t really start till the mid 1800s, Almost all of the accomplished folks before then throughout history were effectively homeschooled.) But finding ways to educate kids that actually works for each kid is entirely what homeschoolers do. The statistics coming out are promising. I actually think homeschoolers will be the leaders of educational reform for public schools. So, we ARE doing our part. Much more so than being on the PTA.

It is an interesting time to homeschool right now. Especially where I live which is just rich with opportunities in the community. It is gaining a mainstream acceptance. There is a risk that it will be overcommercialized or overstandardized, of course. But I think the one thing it has going for it is the intimacy of it. These are YOUR kids. This is your family. It is easy to stay focused on the principals and the goals and not let it get away from you because the results are right in front of you, everyday. As long as parents and kids keep the idea of self-determination through exploring the world right in front of them, there are not too many ways to screw this up.

Note: I did a quick 2 second google search to get the research links so obviously these are not exhaustive studies.  There is a lot out there, so do research more if you are interested.

*Start with Holt if you want to get a nice general view of homeschooling philosophy for beginners. Gatto has some fascinating stuff about the origins of compulsory education, though.

The (Internet-Linked) Homeschool Crosspost

In an effort to get my blog back from the yonderlands where it has been lately, I will do a little homeschool summary. Because despite whatever my issues are with OCB, or my struggles now to deal with deafblindness or kidney disease or D and his forever-long hospitalization and financial cautions, I love my life right now. And the two top reasons are My-Nik/my marriage  and my lifestyle of being able to homeschool with my kids (which I am very well aware is a privilege). Maybe someday I can get back to posting about more personal things, but for now, homeschooling is a nice, neutral topic that will probably bore all the right people.  (Any more OCB/disability stuff is probably going to go away and go to a more dedicated disability advocacy blog–which I am excited about, because a group of disability writers from around the country might be trying to resurrect the likes of Ragged Edge or Mouth Magazine, and I have been asked to be involved with that. So compartmentalization! Yea!) So many blogs! (I have this one, the homeschool one, we have one for my two stepchildren, now maybe a disability advocacy one! Good thing I write fast!)

So homeschool! I will answer the top general questions that are specific to us.

What do we do all day?

It looks something like this through the week lately (These days and times may be switched a bit so the whole world doesn’t know where I am):

Day 1: We get up at 7 ish. Avery goes to his private preschool in the morning. During that time,   Big Kids and I work on reading, math, language arts and handwriting, and usually geography. Then we have lunch and I go pick Avery up (who ate at school.) Everyone chills for about an hour or so, then Avery takes a nap and we work on housework chores. Then, we head downtown where Naim has drama and Aaron has art in the same building.  Nik will beat us home and have dinner ready, so when we come home it is dinner, kitchen cleaning house pick-up and bed.

Day 2: This day Avery takes the bus to ECSE (Early Childhood Special Education School). During that time, we do reading, math, language arts, and science. This goes till one, since Avery doesn’t get to eat lunch at ECSE. We have lunch right when he gets home. Then Avery takes a nap and if we did not get science done, which sometimes happens, we do that. Then in late afternoon, we go to the gym for PE.

Day 3: The kids go to Village Home for their classes there by 9:30. Avery has no school this day, so we run them there and come back home, usually. This is sort of Avery and my time. Sometimes we work on “curriculum” other times we just hang out and read books. Sometimes I have errands to run. Then we go back to pick them up by 2:30 and bring them home. Avery takes a nap and it is usually pretty chill for the rest of the day since we are tired from running around so much. I usually try to do dinner this day (Nik and I loosely trade off dinner duty, but he cooks waaaay more than I do.) Clean up kitchen and what not after dinner, then bed.

Day 4: Is a lot like day 2. Avery goes to ECSE, kids do school with usually science or sometimes another project as our “extra”. We hit the gym in the late afternoon after Avery’s nap.

Day 5: is a lot like day 1. Avery goes to private preschool, we do school, but we have no classes in the afternoon. So we often do an art project, or another type of open project in the afternoon. Dinner is my turn usually this day, too. Once a month the kids have a science lab at OMSI. The class is only an hour, but we usually stay the day. Sometimes I will have Avery stay at school the whole day for this, as it is a lot to take the three of them around OMSI all day. Other times, I feel guilty and wimpy so I take him.

Day 6:  We all of us hit the gym in the morning, or if there is another activity out in the world we would rather do, sometimes we do that. This is a good fieldtrip day also, although I also try to do fieldtrips when Avery has a day off school or when the big kids are off from VH. We also have an adopt-a-park project, so at least 2x a month we have to go check out and maintain the park.  Or sometimes we will take the dog to the dog park if he gets a pet day off.

At our Adopt-a-Park. We check it for trash, damage, graffiti…do basic maintenance, and then play!

That’s right now, it varies from quarter to quarter. I think it terms of quarters, probably because VH does. So for instance, in the fall, Naim had soccer, and Avery was not old enough for ECSE yet. We “do school” year round, but there are breaks (also usually paired up with VH schedule) and summer we do not do VH, often do not do church, Avery is still in preschool but not ECSE (which only has classes in July for some reason.) And we try to add some special trips and camps.

What do you teach? How do you know what to teach?

How you know what to teach depends entirely on knowing your kid, knowing yourself, and doing what works. With homeschooling, if a curriculum does not work, you can just try something different and you are usually out only a few bucks (often you can sell curriculum, too.) For example, I loved MathUSee, so I bought it, but the kids HATED it and math became a chore. So I switched to Calvert. Calvert worked a lot better, actually just fine. But then Calvert School switched to Math In Focus (a version of Singapore Math.) So we reluctantly switched, too…and I like it so much better than Calvert now. It is so much more thorough.

As the kids get older, they have more and more input on what we learn. People ask, “How do you know you have covered all the bases?” Or even better: “How do you know you have taught them everything?”  Yeah. Are they under the impression that their kid’s school teaches them everything? In the whole world? It is just a crap shoot what gets taught. Obviously, there are basics of tools. Reading, writing, and mathmatics are tools to help learn and understand other stuff. But the other stuff? That can be anything. You might as well let your kids just go where their heart takes them.

So, here is what we are using right now. It is going to shift over the next few years and become much more project-based and learner based. But now at sort of 1-2 grade, we are in that basic tool acquisition phase.

Reading:

We are using Calvert’s Discoveries in Reading Series for story books and activities that go along with that. We also use Hooked on Phonics. Aaron is doing the second grade stuff and Naim is doing the tail-end of kindergarten right now. Naim’s reading is one of the reasons that homeschooling is the best decision I made. He is learning it and improves all the time, but it has been exceedingly slow. But he will learn to read as well as any kid in probably 2-3 years, and it will not have mattered. If he were in school, he would likely have been labeled LD, tracked low, been labeled one of the “dumb kids” and struggled as the class went  on without him. His low reading ability affects his other subjects and I can easily compensate for that, whereas a classroom teacher would not be able to. I can read him his math instructions, read aloud science experiments to him, etc. Instead of him being behind in every class just due to a slower reading acquisition speed.

Naim finished the first Kindergarten box of Hooked on Phonics earlier in the year.

Other Language Arts:

We use Sylvan workbooks (yes, of Sylvan Learning Center fame) for vocabulary, spelling, and grammar. As they get more into being able to write and compose their own work, we will move into more heavy grammar and composition work. We have been using Book 1 in the Writing Strands series out of the National Writing Institute. It is quite open-ended and fun.

Handwriting:

We used both the preschool and K books from Handwriting Without Tears in the past, but I didn’t think it was working for Naim, who has trouble with handwriting. He was confused a lot by their double line method. Aaron is fine with it. So this year, I changed Naim to Zaner Bloser and we went back to kindergarten. I think this is getting him a lot more opportunities to practice and is easier for him to understand. Aaron had a choice of which book to use, and he stayed with HWT. He is now just finishing up the 1st grade book, which he does pretty much on his own. His handwriting is fine, and for him it is just copy work. He is anxious to go on to cursive.

Math:

Our “spine” text is Houghton Mifflin’s Math in Focus. But we also combine Montessori, a bit of Math U See methods, and whatever else. For example, I noticed that the kids really didn’t know their subtraction facts well enough when we were going on to 2-digit subtraction with regrouping in the Math In Focus books. So I stopped, pulled out the Montessori manipulatives and we did bead work the first day, then the Math U See blocks I had left over the second day, number lines and subtraction tables the third day, flashcards and math puzzles the fourth day, and by next week we were back to the MIF book and ready to rock. I love having this flexibility. As a former teacher, I have TONS of math manipulatives, so math is usually a lot of doing problems “on the table” as opposed to workbooks, for several days and talking and playing with math concepts. Then maybe a day or two of “proving you can do it on your own” in the workbook. We also use the MIF enrichment book for gifted students, which is REALLY, REALLY HARD (says the mathphobic teacher) but we will do those problems by talking them out together.

In addition, both kids have taken math courses at VH. They have had some very good math teachers that really make it fun and know their stuff. They took a class called Math Playground for two years, and then they both have taken a class called Measure for Treasure, which is all about math in real life; measuring, money, fractions, etc.

At Village Home, in Math class.

Science:

This year we have been working through the Magic Schoolbus Science kits, but that is mostly because they are fun to do, not because they really need them. D has spent a lot of time “sciencing” with them, by just talking about science subjects, reading books, watching movies, etc. OMSI (Oregon Museum of Science and Industry) has also played a huge role in our science curriculum. We have done the once a month science labs for two years now. They get to use real, state of the art equipment that we couldn’t use at home. In addition, the once a month science trips have allowed us to spend a LOT of time exploring the exhibits at OMSI, watching documentaries in their IMAX theater or planetarium, and just hanging out there. Since we are disabled, we tend to always get adopted by a volunteer there. These volunteers are often retired science teachers or engineers. They know their shit and love to talk about it with us. The kids have also taken a lot of classes in science at VH. Naim took “Gooey Messy Science and had something gross and interesting that he made each week. My favorite was a cell made out of a pita bread and other food items, all labeled with toothpick labels. I think a gummy worm was the endoplasmic reticulum. Aaron is currently in Science Olympiad, which is a competitive program that participates in science fairs and competitions. At this age, he is in sort of the pre-competitive level where they are putting on a school science fair at VH. I think he is making bottle rockets and testing different types of fuel.

At OMSI Chemistry Lab, doing something with liquid nitrogen, I think.

Physcial Education:

This is one that I am trying to improve on. We walk a lot, of course, which is probably the sole reason ONE of my children who is a very picky eater and doesn’t like sports does not weigh 500 pounds. In the fall, Naim was on a soccer team. Aaron and Avery went to every practice and game with us and ran around the playground with the other siblings. We’ve tried to go to the playground after Avery gets home, there is one right down the street, or a bigger park about a mile away. In the winter this year, with my two hospitalizations, I have done next to nothing with them…but now I am really excited because I am getting a few months of physical therapy due to my surgery and my low anemia and potassium kidney issues have made my heart really weak. I am getting to go see a physical therapist 3 days a week. at a gym that is within walking distance, and so I take the kids with me and they are participating in kid yoga and kid zumba while I do my therapy. My therapist, who is also a personal trainer there have been talking about an idea to have “family PE” where parents and kids could exersise and do fun active activities together. She pitched my idea to her boss and he loved it so now they are working on a program that will be ready soon. Probably about the time I run out of therapy sessions. But I am really happy that we are going to this gym, which so far we have been doing about 3 days a week.

History/Geography/Social Studies:

We have done a lot of work with geography this year using Maps, Globes, and Graphs program and also Little Passports, which sends us a kit about a different country every month. We were reading the Usborne Book of World History, but it got kind of violent for the kids so we stopped for now. I hope to put a little more thought into social studies next year. Obviously they are out in the world, so “social studies” gets talked about all the time in life and in fieldtrips and stuff. When Naim went to the OCB protest with me, we went out to lunch afterwards and there was a LOT of talk about why people protest, why people don’t listen, why some people have more power, misconceptions that people have about groups of people, etc. It’s life. It all comes up all the time.

The Arts:

Naim has continued to take drama classes at Northwest Children’s Theater. Aaron is taking “messy garage” at VH and he also takes a class at Portland Child Art Studio. Naim is also taking film making at VH and has already done a documentary on his hamster. In an effort to improve Naim’s fine motor skills and get him at least some kind of exposure to visual art, we do Atelier Art one day a week at home. It has actually been really good for Naim. It is based off of a DVD of a real artist who gives the kids a lot of step-by-step directions (think Bob Ross for kids.) Aaron likes to free form art, but Naim does some really good stuff with this type of guidance and structure. And Aaron usually will go along with it, too. One thing I would like to improve more on is music, we haven’t done a whole lot there. VH has some classes, calvert has a program, we have some friends who teach instruments…so working on that.

At PCAS

A note on Avery:

Avery, obviously, is not really a homeschooled kid right now. We do some curriculum stuff with Buttercups, and we read a lot of books (Hooked on Phonics for Toddlers is one curriculum we have done.) We also have done a lot of stuff using the iPad like reading Babybug Magazine from Cricket Publishing. But I fully admit that I have contracted out Avery’s education right now. He is going to school four days a week at two different programs. He attends The Goddard School and ECSE. Avery, as a labeled, IFSP-havin’ developmentally disabled child, does not qualify for ANY speech-language pathology through our insurance, and that is his main deficit area right now. Due to his communication challenges, he is a challenging kid who takes a lot of energy and a lot of focus. ECSE was the closest I could get to giving him speech-language services. His classroom is for kids with language issues and the teacher is a speech pathologist. So, it is about 4 hours of less intense, group therapy with about 8 kids, rather than the 30 minutes of 1:1  intense therapy he was getting when he was on medicaid. And then he was going to Goddard beforehand, and he likes it there and we like them. I felt that I could not give him the full attention he needs and also homeschool the big kids and have the energy to take care of D and my own health. I had a choice to put big kids in PS and homeschool Avery, or do what I am doing. I felt like this was the better option for now. He has a lot of different people working with him and sets of eyeballs that can pick up the subtleties of his communication that Nik and I might miss. He is doing ok for now, and I just take things with him as it goes and we will see where we are. I don’t really see me putting him in public school, but I am considering Goddard for kindergarten. But Avery is a mystery wrapped in a riddle, so who knows?

At preschool.

What about socialization?

This question always cracks me up because it seems like my life is spent hauling them to places where they hang out with kids. In the schedule above, you can see that they are with their peers about 5-6 days per week. Sometimes those kids change a lot, but as far as church and VH, the kids are the same from week to week (and from year to year.) NWCT has a lot of the same kids, too. At VH, they have been in what they call a “cohort block class” with the same kids for 5 years now. For two years it was called Little Villagers, and then they moved up to Discoverers. Next year they will be in Explorers. These classes are 2 1/2 hours long, and they are largely non-academic. They read books, play games, do crafts, have snack, play outside, etc., but it is largely to give the kids a group of kids to build relationships with year after year.  They also have some neighborhood kids they play with.  So, I don’t worry at all about them socially as far as homeschooling goes. Homeschoolers are the most socially appropriate kids I have ever met, and the most socially active, too.

Soccer game.

What’s coming up?

Ok, no one really asks me this except other homeschoolers. But I decided to write this today because I have been spending the last week or so planning summer and next year and I am excited.

We have a fun summer of finishing up the above and summer camps. Camps have been one way to get the kids out in nature and to other places we cannot take them without a car. Last year we tried Trackers NW, but we (Naim and I) thought they were too war-mongering and testosterone freaks. Aaron didn’t say as much but he had  some of the worst tantrums of his life there and they wanted to kick him out all week. This year we are going to do OMSI outdoor school camps and I am super excited about  them and wish I could go myself. They are a year away from being old enough to do OMSI overnight camps. But the one they are doing this year takes them on the road to day-travel distance places in nature and then they end it with an overnight on the coast (their first camp overnight!) So that is June, in July they will have Portland Timbers Soccer Camp (at the big stadium!) for Naim and Engineering camp through Saturday Academy for Aaron. Also in July we will likely go back to Oral Hull Foundation for the Blind, because the kids really had fun last year and asked us to. In August, Aaron will do his third year of Zoo camp and Naim will do NWCT camp. I have to say that I LOVE going to the zoo now that Aaron has been going to these camps because he is our total tour guide and knows that place like the back of his hand. And he tells us all kinds of fun facts about the zoo animals. So, summer is busy and I am looking forward to that.

Also, I will be trying a new thing for 3rd grade in the fall. I am trying out the homeschool curriculum for Global Village School, which is based on unit studies on the environment, social justice and nonviolence. I got so excited that I already started the booklist (it is an amazon wish list, but really it is my library reference sheet.) We will still continue with most of what we have been doing above (Math In Focus, Sylvan, Hooked On Phonics, Handwriting) but will also spend time at home with these books and unit studies. I am not getting teacher consultations through Global Village School, but if it is something that works out for us in the long run, I would consider enrolling them “officially” for high school, so they have others that they can work through their education with besides mom.

What about high school? You can’t teach them calculus and physics!!!

Certainly not!! Mom’s role as teacher will diminish with the years. In highschool, I see my role as just being a monthly check-in/guidance counselor/facilitator type of person…and that they will largely be responsible for their own education. This is still a few years off for us, so I have not done intense studies into all of our options, but here are just a few:

• Village Home CHOICES private school. They work with a VH teacher on an education plan. They take classes through VH or other means, and work on projects.
• Global Village mentioned above.
• Portland Community College has a high school/college dual credit program.
• There are online schools like Connections Academy or Calvert School. 
• Hillsboro Public Schools has a home-based program that they can participate in all or part of.
• A program we liked when we were thinking about moving to Vancouver was called Self Design. This again, is a program where high school kids meet with a teacher once a week to plan out their work. They also have online social networking and group work with other students.
• Village Free School is based on the Sudbury Free school movement. The kids go to an actual brick and mortar school for the day, but they self-govern the school and their own work.
• There are several brick and mortar and online programs for work in different individual subjects for credit. For example, Saturday Academy has high school level STEM courses, so does VH, so does Portland Community College and Portland State. There are also numerous online courses like this. Or software like Rosetta Stone for foreign language.
• Free DIY educational options like Khan Academy.
• Plain old Public School is always an option.
• More likely, it will be a combination of many of these options.

The trick in high school homeschooling is to develop a transcript or portfolio of work to present to college admissions or to jobs, apprenticeships, etc. There are a wide variety of ways to do this, and there are a wide variety of colleges (almost all of them)  that accept alternative admissions transcripts from homeschoolers. Obviously high school will be a lot to think about, but we are going year by year right now.

How much does all this cost?

People can and do homeschool for free. There are whole books out there about it. I don’t, but I admire those folks that do. Homeschooling can fit almost any budget, and I should add that although I only work part-time with flexible hours, there are folks that homeschool and work in different ways. And it is not always the mom who is the main homeschooler. Let’s see, though. According to Mint.com, in the last calendar year,  we paid…..$4,447 for “Education” which includes tuition  for camps and classes, books and curriculum, costs and fees for field trips, costs of sport team membership and equipment, and costs of museum memberships and the like. It does NOT include Avery’s tuition at Goddard because for us that falls under childcare. Obviously that is more than people probably pay when their kids are in public school, however, they probably also pay for memberships, sports equipment, and field trip fees, too. That is roughly for 2 kids, (since Avery stuff is probably in there a bit but not too much.) So lets say about $2,220 per kid per year. If you consider the cost of private school, then you see that it is a bargain as most private schools will come in at anywhere from $8,000 to $20,000 or more per year. Another way to look at it is that the average public school pays $11.665 per student per year. Obviously that is a bit apples to oranges as I am a certified teacher that is not getting paid for my time, as well as other factors, but it is something to think about. (By the way, I still happily support public education and am fine with homeschoolers being taxed for it. I also support bond measures and levies that support public education. I was given a free education, and I want it available for others.)

I don’t know how we fit in as far as what we pay vs. the average homeschooler. I volunteer at VH to barter for hours, so that lowers tuition significantly and not everyone can do that. But on the flipside, there are expenses that we pay due to our travel challenges that others won’t have. For example, there are good drama and art programs through parks and rec right near by that are significantly cheaper than what we pay to send them to NWCT and PCAS, which are both high level, hoity-toity programs. But due to bus schedules and the like, we can’t get to them in any practical way. I guess I hope that the new people they will meet (networking!) and the level of quality of the programs is worth it. Also, I always knew that as a homeschooling parent that couldn’t drive, I was going to have to work extra hard to get my kids out of the house. So Village Home, which I think is a great place, serves a one-stop shop for us, with the added bonus of being a social community for the kids. I never wanted to be my kids’ lone educator sitting at the kitchen table all day. I wanted homeschool to be World School, so we probably pay more for that. I probably also pay more for books/curriculum than some. Some of it has to do with my vision and ability to read print. I look for curriculum that I can work with the publishers to get electronic copies of. There is a lot of free or low-cost stuff out there that I just can’t use. And also, I admit that as a former teacher that has looked at a LOT of curriculi, I am a bit of a snob.

But there is a lot of freedom in budgeting for homeschooling. You can shrink or grow your budget as needed. We certainly did this when Nik wasn’t working. I will also throw out a load of appreciation for some tuition assistance that we have gotten through VH. So, homeschooling can cost as much or as little as you want, and probably still be just as effective (studies unilaterally show that HS kids do up to 4 grade levels better on standardized tests, for whatever that is worth). And it can be a much cheaper option than private school. Someone I know called homeschooling the poor-man’s private school, and I can see that.

Homeschooling is a lifestyle that is most about living in the present, not about preparing for something else. It is about looking at the world as your classroom, and enjoying family and friends.

Ok, that was my once-a-few-years homeschool “What the hell do you people do?” post. Mostly, we have a lot of fun together. I will always believe that people have the right to a free, public education and always want that to be an option available for people. I hope it changes a lot (Think of a pubic school set up like Village Home or Windsor House or Global Village? It could happen!) But I do always keep in mind how lucky I am to be able to do this for my kids, and myself for that matter. I learn a ton!

Thoughts on the Disabled Consumer’s Role in Accountability from the ‘Idiot Shrew.’

This cartoon is titled “Equality.” It has two pictures. One is labeled “To a conservative” and shows three kids standing on crates to watch a baseball game over a fence. Although each kid has a crate, only two can see over the fence due to their height. The other picture, titled “To a liberal” shows the same three kids. Only now the shortest one has two crates to stand on and the tallest has none. This allows them all to see over the fence.

After 12 years of blogging, over 2,000,000 page views and thousands of comments, I finally, for the first time, had to block someone’s IP address. I am a real blogger, now! The person was banned for not following my commenter guidelines and kept calling me fourth-grade level names in lieu of actually engaging in anything remotely on-topic. He was warned, he repeated his insults which were on the level of “you’ve got cooties!” and his IP is blocked.

The weird thing about that is that with 99% confidence, I know exactly who it is. A search of the IP address led right to a particular computer at OCB. Fair warning to any one there who wants to comment..you are welcome to if you have something constructive to say, and can do it while using at least fourth grade grammar. But do it from your home computer, much harder to trace that way. (And I rarely if ever trace IP addresses anyway. I only did it this time because I was slightly worried for a second that I would need it for the restraining order–mostly kidding–I think. ) But while my partner was enduring “ethics training” that talked a lot about personal boundaries with clients, this person was calling a client a shrew and an idiot on work time.

Nice, huh? Whatever.

But this all has me thinking about ethics, boundaries, advocacy, accountability and checks and balances. What this commenter was either unwilling or unable to articulate well was that he could not address any of my issues with logic and reason because he was too mad that I brought up any issues AT ALL. Apparently, he is maddest because I, a lowly blind client who is getting federally-funded services for free, do not have the right to be critical of the agency that is giving me said free services. Gift horse, mouth, that sort of thing. It is a common issue that disabled people hear a lot, as we are often the ‘recipients’ of free services, whether they be from government institutions or charitable programs.

Its a worthwhile topic for contemplation. What is your first gut reaction? Should a person who is getting a gift or a service gratis complain about said service? The kneejerk reaction is no. It is not polite. It is ungrateful. You get what you pay for and if you are getting something for free then you have no right to complain. If someone gives you a sweater as a gift, do you bitch to them that you hate the color? No, that would be asshole-ish. I mean, right? This is a friend giving you a gift out of the kindness of their heart. Be gracious.

But what about if you are a person, due to no fault of your own, can only access the same or equivalent services as everyone else does largely through charitible or government programs? Everyone else gets to take swimming lessons. But the pool won’t take you because you need to be hoyer lifted into the pool. So you go to Special Olympics swimming lessons. There is nothing in the bookstore for you, so you have to get permission to use the library for the blind. Back in the old days, their books only worked on certain machines, so they give you these machines for free. You hit your head, get double retinal detachments and go blind. The hospital treats you for a head injury but their rehab departments don’t have braille or O&M, so you can’t get the traditional (within the healthcare realm) rehab. You get referred to a Commission for the Blind. Largely (although this is changing) the for-profit or at least fee-for-service providers which everyone else gets to utilize all the time for their day to day needs are not available or accessible to you. The only services that are are in the public or non-profit sector. So you have a choice. You can sit around and be a completely unproductive slob, or you can utilize what is available to you and make a better and more productive life for yourself. Since you are so often the recipient of so many free gifts and services, does this automatically make you powerless to what happens to you? You are a charity case, you are worth nothing except what others deem you worth of. If you are so lucky that they throw some free services your way, you should shut your mouth, hang your head low and be grateful. Right?

I guess for me, this comes back to what so many things come back to when looking at identity politics. It all has to do with the fact that hierarchy is engrained in our culture. People like to have rules about who is on top and who is on the bottom. The rules need to be clear and easy to follow, and everyone needs to know their place. If you are on the bottom, you serve a purpose. Your job is to show enormous, uncritical gratitude for what those above you throw down to you. This is what makes them feel better about the deep fear they have inside of them that it is really all a crock of shit and they are no better than you anyway. They throw scraps, you gratefully eat them up. They feel justified in what they are doing, and the world continues along in the right order with a chain of command. I see it all the time, most lately with Nik, since he moved to the US. He is a fat, blind immigrant with buggared up eyeballs. (Mandatory tangent: …who I love dearly and completely and more everyday!). How dare he be so confident. How dare he think he deserves the same as everyone else does. I see people shocked that he has a family. He is not one of the beautiful people, doesn’t he know his rightful place? He is supposed to be meek and insecure, grateful for your time of day. If he were an able-bodied, average to good-looking American male with the exact same personality, people would think he was a confident leader, assertive, a  go-getter who knows what he wants. But instead, he is called “arrogant.” Its the same as the whole women are bitches/men are assertive and powerful dichotomy. In our kyriarchy, people need to KNOW THEIR PLACE.

Except, what are our values really? What do we want them to be? A principle in Unitarian Universalism, actually the first of seven principles, is to affirm and promote the worth and dignity of every individual. This implies that a high moral ground to work on would be to kick the cultural hierarchy to the curb. Not even UUs do this perfectly, of course, but they recognize that it is where they want to go. But who cares about the UUs. What about America? Wasn’t America founded on the principle that we have no hierarchy and caste system? That anyone, with hard work can go anyplace they want? America is not there, either, of course. But it is a moral that we have agreed upon.

To give everyone a fair chance, American society (and most industrialized countries) try at some level to even the playing field. We provide a free, public education. Along with that, if you are a kid without as much food to eat as you need, we provide free breakfast and lunch. This is not only about fairness. It is self-serving. Smart, well-fed, healthy people make all of us better. We have all agreed to pool some of our money to help even the playing field for those who would be at a disadvantage otherwise.

For people with disabilities, it goes a bit further than that, even. The vast majority of the world can see and hear. So therefor, we use our tax money to diseminate information through visual and auditory means. Our tax dollars pay for street signs, traffic lights, websites and brochures that impart information about things people need to know about. When you use transit, the transit company (paid for largely out of tax dollars) provides for people signs, schedules and maps about how to get around. Once on the train, the company provides signage and announcements to let you know where you are at so you know when to get off. The city library provides books, music, and research services. The fire department provides the manpower and equipment to save your life. They also provide free education and fire prevention programs. All free. Well, paid by our tax dollars.

Does this mean that people are not allowed to complain when they feel they receive poor service or that their tax money is being wasted? If your house was on fire and the firefighters didn’t come because they had such poorly maintained trucks that they broke down on the way, is everyone supposed to say, well it is a free service, so I can’t complain. If you walked into the library and they had only used their million dollar budget for two books are you not supposed to say anything because at least it is two books you wouldn’t have had otherwise? Are parents not supposed to complain when their public schools don’t teach their kids to read? Isn’t this public discourse about the services that we have decided to pool our money for as society supposed to be within our rights and part of accountability and checks and balances?

Well then why isn’t it the same for disabled people? Let’s go back to our transit example. In Seattle, as the story goes, deafblind people were having difficulties accessing transit information. In fact, deafblind people were having trouble accessing A LOT of information and services the city provides for its residents. Deafblind people are not at fault for being deafblind. The city is not entirely at fault for not being able to accommodate them. Deafblindness is a toughie, we can admit that. It would cost a hell of a lot, for example, to put refreshable Braille displays in every bus and on every train car that would give deafblind people the same information that the transit company provides for everyone else. Where would they even put this display? So, there was an access impasse. Here is what they did: The DB folks had been working on a federally funded grant project to provide support people for deaf blind folks. These are assistants that would travel with them and facilitate communication and give them access to visual and auditory information through sign or whatever method. But the grant was running out. So the DB people advocated for the city to fund it. Their argument was that this was a way that the city could provide for them the same accessibility to information and services that they did for everyone else. It LOOKS different than what everyone else gets, but it is the same service in the end. The city agreed, and now the city is one of the main funders of the SSP program for DB folks in Seattle.

So, are DB people in Seattle getting a “special service” because they are charity cases? Or are they being given an equivalent service as all residents get. And if regular residents are allowed to provide feedback about city services then so should the DB folks. If a DB person is not happy with her SSP service, my OCB commenter would tell her she is being an ungrateful shrew. But would he say the same about a nondisabled person who complained, say, that the real time transit displays at train stations are always broken? Probably not.

It is simple disability discrimination, folks.

Yes, some could argue that the disabled are often not taxpayers and receive more than their share of tax-funded programs. But as a society, we have a choice. Either we can make the world accessible to the majority of able-bodied people and give a huge “Fuck You” to everyone else and just let them die on the streets or whatever, or we can try to level the playing field. All of these programs, in essence are an effort to make disabled people tax payers. No, we aren’t there, yet, but that is the whole point of all of this, isn’t it? Fake it till you make it tends to work better than treating people like they are unworthy shits.

So, I totally think that in the whole disability services world, the consumers of those services are the MOST IMPORTANT group to go to when looking at accountability. Since the services are supposed to be FOR THEM and not just to provide a bunch of state workers job security and pensions, they are key in the whole checks and balances thing. So OF COURSE they are allowed to complain and OF COURSE their complaints should be listened to. Yes, maybe sometimes their complaints will be without merit or at least fall into a grey area, but at least they should be welcomed and investigated and acted upon when necessary.

Part of the problem I see time and time again with disabled people is what I call overgratitude. You cannot easily be successful if you are a disabled person who has a bad case of the overgratitude. Here is an example of THAT. I went to college with a very smart and skilled blind girl. She was getting her doctorate in foreign languages. But her whole life she had been treated like a problem and an inconvenience. Whenever she got anything that might have leveled the playing field for her and gave her access, it was presented to her as if it was a special entitlement given to her by the generosity of others because she was a charity case. And she should be so grateful for it. So, I would see her get these live readers that would read her foreign language tests to her. But many times, they did not know the foreign language they were reading. They were only students assigned from the college office of students with disabilities. They would fuck her up on these tests so bad because they couldn’t read the language that she would get bad grades because of it.

But she would NOT complain. She would NOT demand that she be assigned readers who could read the tested language. She did not want to make waves, to upset the powers that be. She was so grateful that they sent over readers at all. So we all watched her struggle with this and other issues but she was way too grateful to stand up for herself. This is a person that eventually got a doctorate and spoke three languages. She wanted to be an interpreter for diplomats or at the UN. She could have done it, too. But she was so timid and could not stand up for herself. She was too busy being grateful and feeling like she was an inconvenience to everyone. OK, last I heard (and it has been years) she was a volunteer in a church office. Nothing wrong with that…but that was not her dream. And her dream was not held back by lack of skills or training, not even so much blindness itself. It was largely due to the fact that she had a BAD case of Overgratitude.

If disabled people are treated like charity cases who cannot complain, and can only be grateful for special service “entitlements’, they will not learn that they deserve anything better. They will not ask for much and will not feel like they can go very far. They will not become the taxpayers that could help pay for the differentiated access to services they require. It is extremely important that consumers are treated like equal partners and know that they can provide honest feedback about the services they receive.

And what can happen when recipients of charity or free services are not allowed or encouraged to speak up and give feedback? Let’s take a look at some of the worst case scenarios to see how far out of whack the power differential can go. Well, the most blaring example that come to mind are things like Jerry Sandusky’s charity, The Second Mile. These kids, who came from marginalized backgrounds, were encouraged to only show gratitude. If they showed anything else, if they complained, they would at best lose their services. At worst, they would be punished for lying, which is their case may have included detention centers or removal from their home. Based on their status as “troubled youth” alone, they were considered unreliable narrators, an excuse Sandusky is still using today. The same thing happened in the Catholic Church, a perfect example of the downfall of strict hierarchy. Another example of that is the abuses that took place at Abu Graib in Iraq. The same thing happens sometimes in police situations where a person with a mental or developmental disability is tazed or even killed. Or the famous example of Willowbrook, the institution for disabled kids in New York that was exposed by Geraldo Rivera for its level of extreme abuse and neglect. The kids who were verbal did complain, no one listened. Some parents complained, but they were supposed to be grateful back then that an institution was willing to take their severely disabled child…and what did these children deserve anyway? It wasn’t until hidden camera footage was exposed on national TV by a mainstream reporter did anyone pay attention.

Obviously, I have not accused the OCB of anything so sinister. But even though the abuse of power may have less severe consequences, the story is the same. If those in the position of receiving services are only allowed to give positive feedback, and feel that their services may be at risk if they show anything but gratitude, the balance of power is unfairly shifted. If anything they do say is brushed under the rug because, just based on who they are (a blind client), they are considered an unreliable narrator, then the quality of services are going to suffer. Even those OCB workers who are not intentionally providing low quality services might find that their level of service decreases just based on the environment. If, really, the only people that can provide true checks and balances are completely ignored and marginalized, the staff has almost no real accountability. This causes complacency, lethargic services, and really only having a goal of serving to the lowest common denominator. (It also leads to bad audit after bad audit, a blind community with a generally low skill level, and with poorer results as far as positive outcomes go.)

So, HELL YES I am allowed to give feedback about the OCB. Sometimes I feel like everyone is coming to me to do it for them because they are so afraid and it is a bit of a burden, to tell you the truth. In my last post I talked about returning to advocacy, and I am still trying to figure out where and how exactly to do that, so now I am in the information gathering stage, while balancing a lot of other stuff. I will be looking to find another, more appropriate forum to advocate than this badly edited blog.

One of the things I have done is to initiate a meeting with Dacia Johnson, the administrator that I complained about in my last post. Although my feelings have not changed about the way the hiring was done. I am willing to work with what I’ve got and try to build bridges. Ms. Johnson has been gracious enough to accept my offer to meet, and that will happen in the next couple of weeks. I am not sure if I will blog about that or not at this point. I am also looking at different avenues to contribute whether it be local consumer action groups, providing direct service, contributing to print media or whatever. But it is all open to me now because I just got my eligibility letter from the OCB! And this, in part, is what it said:

During the process of working with you, I will also be looking at ways in which you have demonstrated reliability and motivation to work which are critical factors that we look at before job placement services will be provided.

To which I say, WAY TO NOT BE CONDESCENDING AND JUDGMENTAL, OCB! Would you EVER see that kind of language in any other kind of professional partnership? I already signed the whole rights and responsibilities thing, and that was fine. And enough. Now you want to make well and sure I know my place. I am not a trusted, equal partner in this endeavor. I am going to be “looked at.” The ways in which I demonstrate reliability and motivation will be subjectively judged by someone…and this data will be used either for or against me. My authority figure/parent figure/disability services godlike figure will decide based on my “motivation” whether to provide services to me. Look, I get it. You’ve been burned. People act like lazy sloths and expect you to do everything for them. You want to make it clear that clients need to tow their line, too. Fine. Spell it out in the rights and responsibilities contract. Make your expectations clear and follow through. Dump their asses if they don’t show up and do what they agreed to do. I’m fine with that. But when you come in from the get-go as if you expect this class of blind people to automatically be unmotivated and that you are the authority in charge of their motivation and you will judge them as such…don’t be friggin’ surprised if they act exactly how you expect them to act. Don’t be surprised if they don’t find you trustworthy. Don’t be surprised if they start looking at themselves as untrustworthy. I’m just saying…

See? I know, I know…I can’t stop. But OCB has an attitude problem that needs to go. And it would be so easy to turn that place into a great place with just a little functional tweeking and a LOT of attitude tweaking. My OCB counselor is actually fine and I think this is just a boilerplate document, and I am getting turned over to Helen Keller National Center anyway, I think.

Which will bring me to my last tangential rant: I met my regional representative from HKNC yesterday. She is deafblind herself. And after she left I was on a deafblind high. She was SO respectful, SO down -to-earth and understood the nuances of disability. SO nonjudgy and nonauthoritarian and treated me like such an equal. Not to mention that I just got to sort of see how she, as a deaf blind person, functions and handles things in the world. (I got that, I COULD DO THAT!!! rush.) I am sorry nondisabled disability workers. It is not so much that you are so bad, it is just that the disabled ones are almost always exponentially SO MUCH BETTER! I have actually been grateful for individuals who have been disability service workers that have made a significant impact in my life or helped me in a very significant way. I will even give a few of them a shout out: Larry Mackey, Dorothy Walt, Jelica Nunio, Doris Willoughby, Susan Miles, James Nyman, Jolene Boshart, Nancy Flearl, Lori Powers, Jo-Ann Sowers, and yes, even Mike Ward. And from the OCB, since I am not allowed to single staff out, I and R have always been respectful and enjoyable to be around. I am grateful for people who have given me solid footing to stand on, respect, information, opportunities, equality. They earned my gratitude. They did not get it just for being in a position of power over me. Quite the opposite, actually. For those people, some of whom AREN”T EVEN DISABLED, I do have much gratitude.

(If I ever do a part 2 of this, it will be the role of the consumer in private charities such as guide dog schools.)