Returning to the fray :)

Time certainly passes quickly, doesn't it?

Thanks to a timely sermon this morning at church (on the topic of Jonah, the call to make the world a better place, all the reasons we try to avoid this call, & why we should answer it anyway) I realised that I've been away from blogging for far too long, & need to jump back into this community. I've come to understand that part of the reason I took time away from writing & sharing was my participation in the search for a new minister for my church. Not only was it very intense & time-consuming, but so much of the process was confidential & I worried about inadvertantly letting something slip while blogging. But the search is over, we successfully called our new minister last month, & it time to get back to the discipline of writing. One thing that I did discover during my break was that I felt a bit of a relief to be out from under the magnifying glass of looking at (& writing about) my family & my life on an almost daily basis, so I'm going to try to keep that in mind as I find a new rhythm for writing.

So... last night Charlie & I hosted a meeting of parents from our school who have kids with IEPs & who are concerned about how the IDEA law has finally filtered down to our local level & will be making perhaps significant changes to our school next year. Brendan's school is a private alternative school with a well-earned reputation for doing a great job of educating kids with IEPs. About 20% of the kids at school (of around 100 total students) have IEPs & they are all integrated into regular classrooms. Of the 13 parents who met last evening, about half have kids in Brendan's class, & many of us have found this school to be our last resort for educating our kids, having either had bad experiences with our public school districts, or having been advised that the public schools couldn't provide the appropriate environments for our kids. The beauty of our school is that it's able to provide the "least restrictive environment" while also providing the (sometimes intense) support that our guys need, all in an alternative education setting, which means no standardised testing, the use of multiple & creative ways of getting the information across, hands-on learning with lots of field trips, plenty of outside time... I could go on & on :)

Up until now, our school has been able to hire & train their own consultant teachers by contracting with the school districts to provide these services to kids with IEPs from those districts. Paying our school to hire their own teachers actually saves the districts money, for various reasons, so everyone's had their needs met. Kids needing OT, speech, PT, etc. were served by providers sent to the school from the districts in which each kid lived, which meant a lot of people in & out of the building, but it basically worked. This past year, New York State's appeal of the IDEA law failed, & now it is illegal for private schools to use public funds to hire their teachers... Our school is too small to hire these staff without using funds provided by the school districts. Also, instead of having the district in which the chid resides provide funds & services, it's the district in which the school is located that administers all of this. On one level, this has worked well this year, since just one OT, speech therapist, & PT providing services for all of the kids in the school makes it much easier to communicate & co-ordinate space. Unfortunately, our school is located in the poorest & most disorganised school district in the area... it's the district that we actually live in & although the service providers have been top-notch, the administration is a whole other matter. Sigh. According to the law, as the State is interpreting, the district is required to allow parents & non-public schools to have a say in who will be placed in their facilities, but the reality has been anything but encouraging, with shell-games being played with who the actual district contact person is, calls unanswered, funds withheld (the school finally hired an attorney to work on this).

What we are anticipating for next year is that our present consultant teachers will be gone. Brendan's teacher, Cherie, has been with him since 3rd grade & knows almost instinctively what to do when he's having a tough time with tics or OCD moments, so that most of the time he misses little or no class time when they pop up. We shudder to think what will happen to him with someone brand new, no matter how well-meaning, has to take the time to learn how to help him along. Also, right now Cherie is able to float between Brendan & her other kids, using her time efficiently & effectively, keeping things moving along throughout the day. We have no idea how the consultant teachers sent by the district will be assimilated into the classroom. Will they send a different one for each child with an IEP that requires consultant teacher hours? Will they send one to work with all of them? How many hours will they actually be in the building? If Brendan's IEP says he gets 5 hours daily, what will happen to him when they're not in the building...? We do know that the district is not allowing any time on IEPs for the consultant teachers to actually consult with the classroom teachers. What's up with that?

The other issue is that not only will they be sending their own teachers into an alternative school with a very specific education philosophy, but they will not be assigned until the day before school starts. How on earth is our school to maintain it's educational philosophy if a portion of the teachers either don't buy-into it or don't have time to even learn what it is? Extra added excitement is that our school will not be supervising any of these teachers, so there's no recourse if the new teachers don't get or like the way we do things...

Hence our concerns & our meeting last night. It was interesting to meet face-to-face in a group with people, many of whom we've known on an individual level (or not- being the door lady I know a lot of the parents at school that Charlie doesn't). Some of the parents we know because their kids are Brendan's closest friends, but this was the first time we've worked together on any kind of advocacy. It was good to hear what the parents of younger kids at school are thinking, too, & to understand their concerns. Our school's director, Paula (who's also the parent of a college-age kid who went through the school system with an IEP), was there to update us on the "shape of things to come" & field questions & suggestions for responses. It probably goes without saying that people came with radically different concerns, from "how do we change this stupid law?" to "how do we get the district to listen to us?" to "how do we make sure our kid functions in school next year?" (that was our particular concern). It was comforting to share our stories, about our kids, struggles with the school systems, about why we've chosen this school for our children. Charlie & I shared our frustration with Brendan's recent IEP meeting, in which we were told (after 45 minutes of what we thought was a normal annual review meeting) that they were "not authorised to approve his IEP as written" (which is almost identical to his current level of services) because his needs were too high... The CSE chair suggested moving his 3-year re-evaluation from next fall to, essentially, right now in order to prove that he needs what we're asking for. (When the permission for testing form arrived last Friday, I had it signed, copied, & back to the mailman before he left the neighbourhood. They'll get it back tomorrow... this is how serious I am about my kid's services, thank you!) Our family has been slogging through the special ed system for 7 years now, so we're not so much worried as wary... We we glad to hear, too, from other parents that their kids' annual reviews had gone better than Brendan's.

In the end, we decided to work on the situation from a few different directions. One of the parents agreed to draft a letter requesting that the district comply with state law by allowing the school & parents to be active participants in the selection of the teachers to be placed in our school next year. We'll all sign this & a packet of the letters will be sent not only to the district contact person but the school board president & the superintendent of schools. Charlie & I said we'd head up the group looking into helping the school fund a part-time consultant teacher hired by the school, to co-ordinate the new staff & particularly to work with the oldest kids (Brendan included). We talked about strategies for upping the ante, if the district decides to blow us off :) I'm left feeling guardedly hopeful about next year. I am still frustrated that a federal law can work against the best interests of my child's educational needs. I feel angry that so many uncaring people have the power to make things difficult for him, to affect whether or not he'll make it to high school or college, for goodness sake! It's just idiotic. I am glad to be part of a group of people of good will who want to work together to make things right. It's a very good start...

"Too open" about it...

I wonder how many of us have heard this, from well-meaning people... I heard it yesterday & I'm still trying to process my feelings.

I was talking to a friend about a recently-met other person, and my feeling that this person seemed to have difficulty, at times, finding things to say to me. My friend's response was that perhaps I'm too open about having an autistic child- implying that it puts people off. That this is what would make it hard for someone to find things to say to me.

I have gone round & round in my head- & out loud to Charlie- for a long time, about how to speak of autism & how it affects me & my family. I certainly don't want to be obnoxious, single-mindedly harping on the topic night & day- that just turns people off. I do my best to speak positively & respectfully about my son & my whole family, to retain our human dignity. Having been disabled in the past, I know that people prefer not to hear about difficult things. They are uncomfortable, they don't want to to have uncomfortable things brought to their attention. It's so much easier if we just stay invisible... I have tried being invisible- which is easier on some levels, but feels very much like pretending, like faking. I have tried saying as little as possible- waiting, say, until Brendan does something obviously "different" in public, & then being open to answering questions (as if anyone's brave enough to ask...). These approaches meet the needs of our society, to some extent, but they certainly don't meet the needs of my kid or my family! It just feeds the dominant paradigm of ignorance & cruelty by acting as if there's nothing different about my child or my family. It doesn't prepare society to meet us or accept us.

So, I talk openly about my autistic son & about being an autism family. I'm as proud of him & his accomplishments as any mom, & I don't see any of it as being "in spite of" his autism- sometimes, what makes me proud of him is a result of his autism, a result of who he uniquely is. Our family is different than many, too, & I think it's important to let others know about our journey. If I don't talk about us, how will anyone know that they know a family that lives with autism? How will they know that it's not just something that happens to other people? How will they learn our truth about autism- that it's possible to live with it & love someone with it & be proud of that person- & understand that there isn't just one way to think or feel about autism? How can we change the world if we hide?

I believe that we are doing nothing less than changing the world, by being who we are, loving each other for who we are, & telling the world about it. I know that I risk seeming like a "Johnny one-note" when it comes to autism, but it feels terribly important to me to prepare the way for the rest of Brendan's life by talking about difficult things now. As an autism parent, I feel like I'm on the front lines of a desperately important issue- how society is going to make room for my son as he grows up.

So, in the face of feedback that perhaps I'm too open about having a child with autism, the whole of my being says, NO WAY! This is as much a part of me as my need to create- to knit & weave & dye beautiful colours. (I wonder if I'd ever be told I'm too open about these things...) My child & my family are at the centre, the heart of my life. I speak often & lovingly of them. To a select few I also speak of the more difficult things, because I need support, as any parent does. As Charlie has pointed out, we had friends evapourate in the aftermath of Brendan's diagnosis, people who couldn't wrap their heads & hearts around us as an autism family. But we have many more friends who have stuck with us, & who are living proof that our openness about how autism affects our lives does not have to be a turn-off.

I'm wondering how other families deal with this sort of feedback when they hear it. What do you say? How do you feel? Let me know, please! It would be a help & a comfort to know how you're facing this, too. Thanks, friends!!

Disablism in action...

One of my favourite recent posts is Of Boxes and Bias from Anne C's Existence is Wonderful site. Her initial paragraphs describe perfectly the mechanism of Disablism in action.

Today's post is my contribution to the May 1st "Blogging Against Disablism Day" (follow the "Disablism" link above or click the colourful logo in the sidebar for more info). I have been running up against Disableism- predjudice against those perceived as disabled- since the early 1970's, when I was in my early teens & started working at our local United Cerebral Palsy's summer day camp. In my mid-teens it became more personal. My family discovered that I had subluxing kneecaps, a genetic condition, & I began many years of surgeries, crutches, canes, 7 years in a wheelchair, (for reasons beyond just the knee problems) & ultimately lifelong arthritis from it. I remember back then people asking me if I'd broken my leg, when they saw me on crutches, & as time went by their breezy assumption that I had something "fixable" became more annoying than comforting.

Fastforward to 2001, the year we discovered that our 5-year old son had severe developmental delays, which were diagnosed a year later as Asperger's Syndrome (an Autism Spectrum Disorder). Over the past 5 years since his ASD diagnosis, Brendan has also been diagnosed with Obsessive Compulsive Disorder (OCD) & Tourettes Syndrome. The kinds of disableism that Brendan faces are different than those I did (& still do to a certain extent) face- he is not as readily recognised as a person with a significant difference, unless he's ticcing or having a public meltdown due to sensory overload. The barriers he faces are not those of "stairs but no elevator" but those of a more subtle type. Sights, sounds, & smells that most people may not notice or even find pleasant can be overwhelming to him. Some have OCD associations that produce tics- twirling or loud, explosive noises, or full body spasms. Many of the barriers Brendan faces are educational. He does not write fluidly & finds even typing not to be a fluent interface for putting his words/work down on paper, so we've been trying volice-activated software to see if this will help him. Brendan is working on pragmatic speech with his speech therapist so that social interactions will have fewer barriers, & with his occupational therapist he's working on motor co-ordination & planning, & relaxation techniques that he can use when overwhelmed by sensory or OCD overload. He takes 3 different medications to help control the OCD & tics, & sees a psychologist regularly for cognitive/behavioural therapy so that he can do & be the best he can be. We are very fortunate that his school (a private, alternative school) is progressive & works well with our district to provide an optimum educational situation for him. His teachers like him & want the best for him. From reading other blogs of parents with autistic kids, I know that we've found a rare & wonderful situation for our kid, & we're already nervous about what we'll do in 3 years when he graduates from this school & moves on to high school. We are also very fortunate to be connected with a church community that has allowed us to expand our (& Brendan's) social connexions in the world while maintaining a safe environment for him. We have been part of this church for many years (pre-dating Brendan) & have shared our journey with him & his neurological differences every step of the way. He's fully integrated into the Sunday School (we were his first teachers, then weaned him onto other adults :) & has friends young & old at church.

Where Brendan runs up against disablism the most is, of course, in public & when interacting with people he's never met before. His tics often take people by surprise & they don't know what to make of them. When feeling comfortable, Brendan's been known to clue people in ("I have Tourettes, in case you were wondering.") & we are delighted by his self-advocacy. We also know (& worry) that he is more vulnerable to bullying because of his tics & social difficulties. Bullying is a significant &, although common, extreme manifestation of disablism. Bullying takes the range of what could be "normal" behaviours & narrows them to only those acceptable by a certain group. We do a lot of talking & problem-solving with Brendan when it comes to the possibilty of bullying. The last thing we want is for him to become a victim. The thing about being in public with Brendan is that we can't always change the things that give him sensory overload or trigger the OCD, so we have had to modify how much we actually interact with "public", & how we interact, over the years. In a way, it was a lot easier when he was little- people don't think twice about a tantrumming 3-year-old in a store, nor do they wonder if he's tantrumming because he's autistic (at that point, even we didn't know...). However, an 11-year-old having a meltdown in public is very different. It's not only embarassing for him, but people fear "aggression" & worry about "violence" before they really understand what is causing it. As a result, we have become extremely sensitive to signs of overload from Brendan & take steps to remove him from the stimulus before it becomes a problem. We also plan any trips out of the house, whether they be to the grocery store or across the country, very carefully & with his daily rhythms in mind. Perhaps this is where Brendan can most be considered "disabled". He just can't take part in the sorts of activities expected of kids his age, & although he's doing a beautiful job of learning about what he can & can't handle, & what to do about it, he still needs a lot of help.

Perhaps the most painful incidence of Disablism we've faced so far was recently handed to us by Brendan's paternal grandparents. They don't see him more than 3 times a year, since they live about 5 hours away part of the year & in Florida in the winter. We have done our best to keep them apprised of his progress, & also let them them know about the current difficulties he's having before they come to visit or we visit them, with the idea of making the visit go more smoothly. Charlie & I had really thought that they were "on board" with Brendan's autism & accepting it as well as could be expected. But last week we received a letter from them accusing us of overstating his difficulties & "needs", & also accusing us of rudeness during our last couple of visits because we'd chosen to remove him from situations a bit early because he was becoming stressed (once he was in full meltdown & we barely got him to the car...). The main evidence that shows we're not being honest with them turns out to be our up-coming, long-awaited family trip to Japan (!). In their minds, we'd have to be crazy to take "a child like that" (with Brendan's difficulties) to Japan. So, in their world, "a child like that" doesn't have the right to travel to a place he's wanted to go since he was 4 years old. No matter that he's been studying the japanese language for 2 years... And, of course, there's no recognition of everything we do to tilt the scales in our favour when travelling with him- planning our days carefully for sufficient down-time, choosing quiet places to stay, helping him cognitively focus in advance on the places we'll visit so that he'll have points of reference. There are, of course, a lot of other, long-term, family-type issues going on in the background of these accusations (which we are consulting my therapist for help in dealing with), but I can't escape the disablism inherent in the assumptions being made about Brendan & autistic people by their attitude.

Attitudes, of course, are what disablism is all about. It's pre-judging people based, not on factual information, but on what is believed to be true about people. One of the ironies of having an autistic child these days is that the loudest voices in the media these days about autism, by a group claiming to "speak" for autism, refer to autistic children as "poisoned" by mercury or vaccines, "train-wrecks", & dwell on the general horribleness of dealing with autism. They perpetrate essentially false images of people with autism, supposedly in the name of advocacy (!), but what they are really advocating for (& fundraising for) is a "cure" so that autism will be eradicated from the face of the earth- a breathtakingly callous way of talking about something that is central to the lives of so many people. Even the language of recent legislation in the US supposedly designed to help autistic people & their families is called the "Combating Autism Act", which brings to mind destruction rather than assistance... The reality for my family & many others, & for many autistic adults, is far different than the stereotypes. We love out neurodiverse son for who & what he is. We give him everything we can to help him blossom into the person he will become (as we would have whether or not he were autistic), but we love his autistic self very much. I believe that his autism is an essential part of who he is. We don't want a cure- what we want is for the attitudes of society to change so that there will be fewer artificial barriers to his achieving his dreams. That's really what disablism is- artificial barriers to progress for anyone. I remember vividly, when I needed a wheelchair to get around (& to play basketball & "run" races in), wondering what made me a "disabled" person- the wheels, or the flight of stairs that kept me out. I can ask a similar question for my son, too. Is he disabled because of his neurological differences, or because society has put particular barriers in his way?

The good news is that things have changed a lot since I first became aware if disability rights issues. I have seen attitudes toward the disabled shift, kerb cuts become the norm. It's not nearly what it should be, but change has happened, through the hard work of activists. Awareness of autism is shifting, too. The moderate & neurodiverse perspectives are being heard, & the sheer numbers (not an epidemic, as some would declare, but better diagnostics & less stigma) of kids identified as autistic or pdd-nos are making a once scary & isolating diagnosis much more common. I am surrounded by other parents, now, who are wrestling with their school districts & IEP's, comparing notes on pediatric neurologists, & sharing references for good child psychologists. :). And, drumroll please, we are taking our autistic kid to Japan this June. Just our small contribution to countering disablism... :) Let's all do our best today (& every day, of course) to be aware of the attitudes & predjudices that surround us, & do our best to let it be known that we can transcend these barriers, & that the world is always a better place when we do.

Practical applications...

The timing was perfect... after Monday morning's blog entry about re-thinking my expectations of Brendan, we had a regular, monthly, after-school appointment to see his psychologist. Brendan came bouncing out of school like a cork popped out of a bottle & as he piled into the car, announced that he felt like an "office-worker". He further explained that he'd gotten a lot of work done & had a bit of a headache, but his mood was quite positive, so I got the feeling that he was feeling good about his day. :) While he ate a snack, I asked him what the best part of the day had been (his weather research! Something that he'd been not very happy about before break...) & then what he'd done at lunch time, since we'd discussed this during our "food chain" conversations last week. He'd ended-up eating in the classroom with another friend (someone who's been having a lot of trouble with "food chain" issues lately) & avoided sitting at either the girls' or boys' tables. It sounded like they'd had a great time chatting & generally being silly over lunch. When I asked Brendan about the friend he usually sits with, who often triggers tics for him, he said that when this friend had asked to sit with him Brendan explained that he'd like to do something different that day & that had seemed alright with the other boy. (Tuesday's lunch update: Brendan asked one of the girls he's known since first grade if he could sit at the girls' table & she told him of course he could. When one of the older & higher "food chain" girls challenged him, he told her he had permission :) When the boy who triggers tics asked to sit with him, Brendan suggested that they play together during outside time instead, which was acceptable. Wow! Go Brendan...)

In the car on the way to our appointment I found that I had loads of things to talk to Brendan about, so after the schoolday debrief, I told Brendan that I'd been re-thinking some things & wanted his input. We talked about his behavour charting & how I was concerned that he'd outgrown how we're doing things. I told him that my observations lately have led me to understand that expecting zero meltdowns/blowups from him is unrealistic, since all of them are triggered by things outside of his control. I explained that I'd like the criteria for his earning or losing his "number" for the day to be based on how well he copes & recovers from meltdowns. Brendan thought that was fair, so we discussed the kinds of behaviours I was talking about: using self-talk, distraction, & other tools to help himself to recover, being proactive by telling us how he's feeling or if he's uncomfortable, & anything else that he/we can discover that helps. From this we progressed (now in the office waiting room) to chatting about how we're coping with his occasional foul language. I explained to Brendan that the original charting, with stickers for each day he doesn't swear, didn't work very well, perhaps because the incentives weren't very tempting. However, docking his allowance was really not working & causing a lot of conflict at home... By this time we'd made it into Dr. M's office proper, still chatting along. I should mention here that during all of our discussion Brendan was engaged, bright, attentive, funny. He seemed to really enjoy the process of figuring things out together. When we got into the office he began by engaging in some of his usual behaviours in there: checking out if there were any new toys, tossing a soft ball around, & generally bouncing around. I recapped some of our conversation so that Dr. M was up to speed & he was very interested & excited about the conversation. Brendan stayed with us during the recap, mentally at least, as he physically roamed the room, which was fairly unusual. What he generally does is engage in some sort of activity of his own while listening to us while I bring Dr. M up to date on life, usually without commenting. This time, Brendan commented regularly on what we were saying & was definitely part of the conversation. He ended-up pulling 2 chairs together to make a "sofa" & laying down, giggling, while he chatted with us. Dr. M liked the directions we were going in with re-thinking the charting & helped us to figure out how to handle the swearing chart, too. We decided to re-instate the positive charting with a more tempting reward, & also create a "swear zone" at home where it was ok for him to let loose... This came out of Charlie's & my perception that it was un realistic to expect him to never swear, & that it was more respectful & constructive to help him learn appropriate behaviour around swearing. Brendan declared the bathroom to be his "swear zone" (Dr. M agreed that this was an appropriate place for "potty mouth" :). Next we recapped the events of a couple of weeks ago, when Brendan had gotten stuck in his anger & played with matches. It was good to revisit this after some time had passed & feelings (for both of us) had receded. Brendan told Dr. M about the consequences for his actions, & this led us into talking about how successfully Brendan had dealt wih his feelings about going back to school last Sunday evening, & had repeatedly avoided meltdown. Dr. M asked him how it had felt to know he was going back to school after the break, & how he'd managed to keep it together in the face of those feelings. Brendan talked about feeling pressure, like he had to burst, & that he'd avoided actually bursting by talking to himself. They also talked about how story-telling can help Brendan to imagine different ways of responding to different situations, which led to our chatting about Brendan finally getting Dragon (voice-recognition software) at home & his struggles to get it trained properly. Brendan suggested to me that we work some more on the story we'd written for Dad's birthday, but I balked when it became obvious that he wanted to type it for him (!). I told him how long it takes me to make my blog entries (due to poor typing skills) & how envious I am of his having Dragon, & I promised to sit with him, help him with ideas, keep him from throwing the laptop at the wall when he gets frustrated :) as long as he would Dragon it instead of me typing. This seemed acceptable to Brendan :) (It's also led to Charlie looking into whether or not we can have more than one person at a time trained on the software, since it would be amazing if I could learn to use it too!)

Finally, I left Brendan & Dr. M to their usual time together (after asking the doctor if he'd felt as though he'd been doing family therapy instead of individual... grin). He gave me the latest issue of the Tourettes Society of America newsletter to read while I was waiting- it was excellent & made me realise that, not only did we need to join to get our own newsletter (did it yesterday), but also that the autism community doesn't have anything even approaching this level of support & information. It made me sad, because the reason for this is that the autism community is so bloody divided that there's no way we can get a focused, positive message out into the community. Arrgh!! What really put me over the edge with envy (of the Tourettes community) & disgust (for the loudest media voices in the autism world) was an article about challenging the popular stereotypes of Tourettes in our culture. This is a group that takes out full-page ads in newspapers & magazines in response to specific media instances where someone has publicly made fun of Tourettes. They have a series of tv ads by comedian Richard Lewis coming out with the tag line "Tourettes- it's not funny". Compare this to the constant slander of autistic people in the media as diseased, poisoned train wrecks, mostly by so-called autism advocates! It makes my stomach turn. (Also makes me keep blogging as loudly as I can!)

Brendan came bouncing out of his appointment in very good spirits. Dr. M was amazed & delighted by their meeting. He told me that he hadn't seen Brendan so engaged & vibrant since before the onset of the OCD. The take-home message was "whatever you're doing, keep doing it!" :) On the way home I reminded Brendan that I'd promised to start a blog for his stories, as soon as he'd gotten going with the Dragon. He'd forgotten, & got very excited about the possibilities. He told me that he wanted to write about autism, too, & I said that there are a lot of parents & kids out there who would be delighted to read what he has to say about it. Stay tuned... :)

Intention doesn't always make things go more smoothly... Brendan is 11 & has limited patience with frustration, so even though he tackled his Monday evening homework (on Dragon, with dad sitting with him) with a good will, he did end up wanting to throw things by the time they were finished. I keep thinking we need to lower his expectations somewhat & then do lots of short sessions, or something... The good news, parlayed to my by "conference call" (speakerphone in Cherie's office) on Tuesday morning by Brendan & Cherie (his consultant teacher) was that she has convinced our school district to intall Dragon on the new computer in her office for Brendan to use at school. Whee!! What seemed to finally convince the assisitive tech guy was that Brendan's using it at home & has started doing homework on it, after a 1 1/2 year hiatus in homework... I am so pleased that this is working out so well. And Brendan certainly will get more opportunities to use it, so he'll become more fluent, faster... Charlie & I were talking about this last night & he was pleased too, not just for Brendan, but that potentially this resource will be available for more kids at school who need it. Once again Brendan's opening doors for other kids, too. :)

One of the practical results of re-thinking how we're giving Brendan feedback about his behaviours has been realising that this requires more communication with Brendan about his behaviours. This may seem rather "duh!", but in practise, how often do parents talk about the standards they are applying to measure their kids' behaviours with their kids? Aren't these kids supposed to just "get" it? You know... over time, if you're consistent &, perhaps, unrelenting, they learn by repetition... right? Maybe this is the most important part of the recent re-thinking. Brendan is 11 now- rote learning just isn't fast or efficient enough. He's old enough to be part of the process, &, really, isn't that the best way for him to learn to self-regulate, by helping to decide what needs work & what's just fine, behaviour-wise? This morning, when thinking about whether or not Brendan had earned his number & sticker (for swearing) yesterday, I realised that I didn't have enough information to decide. So I asked him for feedback at breakfast time, then quizzed Charlie when he came home from work, briefly, to get Brendan for school. Brendan told me that he hadn't made it to the bathroom yesterday for a swearing bout over his homework (it was math, rather than something Dragon-able, & he was having trouble explaing to Charlie exactly what he was supposed to do), so I thanked him for his honesty. :) I asked Charlie how Brendan had resolved the conflict over homework & he said that they'd come to a satisfactory resolution, so Brendan did get his number, although sticker was forfeit. Brendan was rather surprised that he'd earned his number, so he learned something about what we consider acceptable behaviour. I really like this communal way of deciding the number issue, & I think it's giving Brendan much better feedback than just earning a lego or dvd after earning 11 numbers...

This morning, while perusing my usual blogs, I found this post by MOM-NOS, which was incredibly relevant to some of Brendan's & my recent conversations. It's about Teddy's Turn, a slide show of a boy just Brendan's age with Aspergers who was denied the right to speak to his class about his autism. It made me so glad that we live where we live & Brendan goes to a school where they have no idiotic prejudices about my kid or any of the other kids with IEP's. Give it a look, & meanwhile, I'll kepp working on my kid & his literary aspirations... :)

"Discover" this...!

The recent article on autism in "Discover" magazine has raised many hackles, including my own. I received the latest issue after reading about the the article on a few sites (abfh's was the first one I read, & she included the link to write to the editor- thanks!), so I was "prepared" when the magazine arrived- but how can anyone really be prepared for such idiocy...? I've spent the past couple of days ruminating (in between dealing with a kid with a sore mouth :( ) & this morning Kristina's post finally put me over the edge. Here's what I wrote:

Dear Editor,
As the parent of an autistic child I was absolutely dismayed by the recent article on autism in Discover magazine. The focus of the article on unproven & sometime dangerous "therapies" for autism has done a great deal to foster the widespread misunderstanding of autism. Some of the therapies mentioned, such as chelation, have killed the children they are supposed to help & there is no scientifically-proven basis for their use. Also, most of the parents & "experts" quoted in the article represent autism as a dreadful & devastating "disease", which is an extreme view & does not reflect many people's experience. I would also like to point that none of the "experts" interviewed for this article are autistic people, who are arguably the most expert "experts" of all on this subject. Contrary to popular belief, many autistic people are able to communicate what it's like to be autistic & do so regularly in blogs such as these:
http://ballastexistenz.autistics.org/
http://partprocessing.blogspot.com/
In the future it would be of great assistance to all if your article showed the true balance of opinion on such an important topic as autism, & actually reflected the scientific data available. My family lives every day with autism & we embrace life with our autistic child with great zest. I write about it here:
http://lisa-jedi.blogspot.com/
A podcast of a radio show describing our positive approach to raising an autistic child may be found here:
http://www3.lifenowradio.org/?q=node/104
You should know that I have been receiving my copies of Discover through a promotion from Edmund Scientific & had been seriously considering subscribing, but in light of this recent article have decided not to (in fact, the issue went into the recycling as soon as I read this article). Please do consider all of your readers in future when publishing such ignorant reporting. I am not asking for you to refrain from certain topics at all, but to make sure the reporting is balanced & at least accurate! Thanks for your attention.
-Lisa Gwinner

The web address to write is:
editorial@discover.com

I encourage anyone else who feels strongly about this careless sort of journalism please write, too!

It's not "all about us"...

The last 2 days of the school break were a bit busier than the week itself, with friends visiting both days, but a nice end nonetheless. Brendan had another school friend over (for the first time) on Saturday afternoon & they had a very nice time. They went outside with Charlie twice, once sledding & once to the snow fort down the road. The inside time was spent playing with legos & watching excerpts from "It's a Mad, Mad, Mad, Mad World" accompanied by much giggling. Sunday we had grown-up friends from church over to lunch & Brendan spent some of the time watching the new Pokemon dvd that he'd (finally) earned with his behavioural chart & playing his new Advernture Quest game, Dragon Fable, while we visited- so it was a win-win :) He was also quite friendly over lunch & talked about our upcoming trip to Japan with our friends. I was happy to see him so relaxed in the afternoon because he'd had major tic trouble at church that morning. There was a special lunch being prepared (we hadn't know about it when we made other lunch plans, but it turned out for the best...) that day & Brendan found his Sunday morning session of Adventure Quest at church (while Charlie & I were in choir practise) horribly disrupted by the smell of meat cooking. Sigh. By them time the service started he was very upset & at first he wouldn't even read the book I keep in my church tote bag, which is what he usually does until we all leave for Sunday School (the kids & RE teachers are in the first part of the service). I finally conviced him to read & that distracted him very nicely, but when he got to Sunday School he didn't want to stop reading & go into his classroom. I didn't rrealise what was going on until my class came out in the hall to put some stuff on the bulletin board & I found one of his teachers hovering between him, sitting in a chair & reading on the landing leading to the RE wing, & his classroom down the hall. I asked Brendan what was up & he said that every time he put the book down he remembered the meat cooking, so I told his teacher that he'd come with my class (I teach Sr. High) & my kids were fine with that, so he sat & read the rest of the time. He smelled the meat as soon as we got downstairs, so we had to hustle a gagging child out of the side door, to a few puzzled stares (new folks who don't know us :). He was very angry on the way to the car, about how people killed those animals & were going to eat them, but calmed down once we headed for home, asking if we could go to the asian restaurant that we've been visiting the past few Sundays for lunch (at his repeated request). We explained again that friends were coming over, but held open the possibility of going out to dinner. And then we got home, & friends came over, & Brendan was fine.

I wasn't really fine, unfortunately, having woken-up with some sort of sinus thing that had my nose running like a faucet. By the time our friends left my head felt as though it was going to explode, so I took more tylenol & laid down on the sofa, while the guys withdrew to the second floor to play legos & watch some videos. After about an hour & a half I felt well enough to sit up & even eat some dinner (Brendan very sweetly didn't even mention going out...), which was a real blessing. After Brendan had a bath we all watched 3 episodes of Pee Wee's playhouse (he'd wanted to watch 3 before bedtime, so we calculated together when we'd have to start, & by extensionn when he'd have to have his bath, so we'd be done by bedtime). He was a bit grumbly about going back to school in the morning, but Pee Wee cheered him up :) He fell to sleep very well- so far there's been no noticeable effect of the reduced seroquel dosage on his falling asleep...

This morning I did wonder if he wasn't feeling the effects, though. He was predictably grumbly, moany, bad-tempered before breakfast, but half-way through breakfast he had a terrible tic that had him red-faced & gasping for breath. I felt really awful for him. He ran for the sofa & as I sat with him he was able to relax & tell me that the tic was related to the ones yesterday about people cooking & eating meat. He said that the tic made him feel that he shouldn't be alive... but he did tell me that it was ok to eat plants (whew!). I reminded him of how the american indians used to thank the spirits of the plants & animals they ate, & were acutely aware that they were part of a cycle of life & that they needed to respect it. We talked about how we've started to say "ittadakimasu" (what the japanese say) as a grace before eating & how that way we give thanks everything that goes into the growing & making of the food. When he seemed recovered from the tic I asked him if he wanted his breakfast & he asked if he could eat on the sofa. I told him he could if he was careful, & brought it out to him. The rest of the morning was fine & we got off to school nearly on time (although the laundry had to wait until I got home). He was in a good mood when we got to school & was sitting at his desk doing morning work when I left. He did ask if he could call me if he needed me & I told him he could, then explained that I had one appontment where I'd be on the cell phone (just for emergencies), so that he wouldn't worry if he called & I wasn't home. So far, no call...

Over the weekend I witnessed & participated in a discussion of sorts in Kristina's Autism Vox site. At last count there were 54 comments on this particular entry, that was about Amanda Baggs being interviewed on CNN. One "participant" (I must loosely define participant here, since he really wasn't doing much taking-in of what others were saying, in my opinion) turned things to a back-&-forth, us-vs-them exchange about "curing" autism, essentially telling folks that if they weren't in the curebie camp they were "in the way". I found myself increasingly disturbed by the tone of this parent's comments & even made a second comment to the effect of "who told you a cure exists?". Rochelle made a heroic attempt to bring him into line, explaining that it's common courtesy to discover the general outlook of the site at which you are commenting before disrupting the flow with ignorant remarks, but he didn't get it :( At one point I found myself hugging Charlie in the kitchen, while describing it all, really put-off by the obnoxious sense of entitlement that emanates from some of these hard-core cure types. Charlie just nodded agreement.

Up till now I have felt very wary of taking on this sort of thing in the blog. I cannot know or understand how another person feels & I'm acutely aware of it, so I try to be careful of others' feelings & perspectives about autism in my life & in my writing. But reading what that one person seemed to think was unflagging devotion to their cause made me feel as though a line had been crossed & I had to say something. And that something is this:

"It's not all about us!"

In other words, autism is not about the parents, & unflagging devotion, when it is disrespectful & thoughtless, is just plain wrong. I am the parent of an autistic child, who will someday be an autistic adult, & I do have have feelings about the process of raising an autistic person in a society that has a long way to go in terms of accomodation & acceptance. It's natural... I'm a person who is learning & growing & trying my best. I haven't always done a very good job of managing my feelings about the process... But the whole process is not about me or my feelings. It's about my son. His feeling are really important. His feeling competent & good about himself is essential. If I feel bad about him, how can he feel good about himself? This is my basic problem with those who feel they can "hate autism" but love their child. I just don't see how this is possible... Kids are smart & verbal ability doesn't determine anyone's intelligence (or, as an aside, one's worth as a human being), so I believe deeply that the child of someone who hates something about this child runs a terrible risk of picking up on that hate. What a sad & awful thing...

And as for a cure, who ever promised anyone a cure for autism? Who ever said such a thing was possible? It is not defeatist to accept something & move onward with it, learn to live with it, let the struggle make us better people for it... Perhaps my perspective is the result of spending many years working with & befriending developmentally disabled children & their families, beginning back in the early 1970's. I knew many, many families with disabled children. I was on the babysitting list at the local UCP centre, so got to know many families very well. I became close friends with a girl my age with CP, too. I saw the struggles, I saw the sadness, I saw despair... I also saw joy, pride, & love. I learned that the ability to cope successfully with the raising of a disabled child was not limited to certain income levels or education levels. It seemed to have a lot to do with overcoming grief & getting on with life. The families that were stuck in grief never seemed to be able to fully accept their child, & this was very damaging. Those who were able to move past raised children with higher self-esteem, & like my friend with CP, are now successful adults (she became a special ed. teacher :). I never ran into a family of a child with CP or Spina Bifida, or Muscular Dystrophy (telethons irregardless...) who felt they were entitled to a "cure" for their child, either. There was fundraising for research, the hope for prevention or better treatment, but no-one talked about a "cure". I can't help but wonder if this is a sign of the times, before micro-chips & sophisticated genetic testing was available. Now we have prenatal screening for many things & tests on the horizon for many more. All of this promises a "better" world (at least for those who have access to them), but I don't buy it. Many others have spoken more eloquently to the issues of eugenics & decreasing our human diversity, so suffice to say that I share those concerns. But another concern I have is when did our society get this sense of entitlement? When did the overwhelming sense that parents have the right to blame or sue or expect restitution for giving birth to a child with significant differences occur? When did we decide as a society that all people have the inalieable right to being "perfect" at birth? And, for that matter, who decided what "perfect" was? Perhaps it's that I have been surrounded by "the disabled" (& actually been disabled myself) for most of my life, but I never expected that my child would be "perfect" when he was born. I hoped he would be ok, sure, but my main concern & joy was bringing him to life!

At first, of course, having a baby is about "us". Charlie & I really wanted a child because we felt it would enrich us a individuals & as a couple, although we never expected it to be easy. This has turned out to be true in every way. A big part of that enrichment has been the discovery & nurturing of another human being, with his own individuality. I'm not in charge of just how individual he gets to be- that's up to his genetics & the indefinable "Brendan-ness" of Brendan. I think that we've been aware of this from the very beginning, & why I am aware that I really need to get out of his way sometimes, so Brendan can be Brendan. As his mother, I feel I have the right & responsibility to help him become a functioning person in our society, to teach him & encourage him to be his best. This teaching covers everything from education to manners to a sense of his belonging to the human race, with all that this means. I also have the right & responsibility to call society on the carpet when it's definiton of functional is toxic & unrealistic. That's where the advocacy comes in... & by doing our doing this for him, Brendan learns how to do it himself. In no way do I believe that "Autism Advocacy" requires that my kid's autism be changed ("cured"). Having sensed in my gut, back when I was in my teens, that the families that moved forward with their lives, loving & adapting as necessary to their disabled children, were the ones who succeeded in all the ways that I count success (happiness, satisfaction, production of functional people) I have decided that's the way we'll do it, too. No amount of railing, weeping, or anger at his difference will help my son or my family. In fact, by not taking a cure stance, we are moving forward as a family. Our positive attitude ripples around us & affects those we know in positive ways, too. As much as I weep sometimes because of Brendan's pain (from tics, from OCD anxiety), it's just a fraction of the time we have together. Keeping this in perspective helps, as has also the successful weathering of past emotional storms. There was a wonderful post by abfh recently that explored the very appropriate place of suffering in life, & the buddhist perspective that "Life is Suffering". It's no wonder that I've found buddhist thought very helpful in my journey as a parent...

For me, the bottom line is that life is what we make of it. When I chose to bring new life into the world, I knew I'd have to stretch myself. That's one of the reasons I wanted to become a parent. But I can't stop stretching... every day I stretch, sometimes it's really painful. Sometimes I fail, & sometimes that's even ok- how will Brendan learn to accomodate others or empathise with them if I'm a saint? I follow my internal sense of fairness (something Brendan seems to have already well in place, too :) to determine when I'm stretching too much, or when I'm not & being selfish. I can listen to my kid, too (thanks to his sense of fairness) & at least take him seriously, of not actually acceding to his wishes. I can listen to my husband, too. I read, I learn, I talk to others, & I hope to do my part to make the world a better place. Not a perfect place. An accepting place... a good place to be alive in.