I stumbled across your blog the other day while looking for something (information about living within the autistic-spectrum and also something akin to answers to unanswerable questions about my own existence; the kind of thing that I suppose all human beings – and maybe others too – struggle with on some level or other). You have an amazing talent to communicate, made all the more amazing by the barriers you climb each time to do so using ‘traditional’ means, like written language. When I read the words you write, it seems that they transport me into a parallel place in my own mind that resonates with what you are describing. But beyond that, you show great and deep insight. I’m still learn how to purge myself of those feelings on shouldn’t-exist and reading your writing is hugely helpful. Thank you for this tremendous gift.

Wishing you all the best,
Andrea

Thank you for this article that puts into words what I often can not.

Catherine

Anyway, thank you.

I always have felt strongly that we all come into this world with gifts ….physical or mental or societal circumstances that make learning or doing certain things extremely easy for us….rather that be an intellectual gift or one of a different type like a profoundly big and giving nature or a way of portraying emotion or just our ability to observe and observe some more before we step in and join an activity, and we come with deficits or areas that we find harder to learn or master which if the society we are in thinks makes it harder for us to to routine tasks is called an actual disability. It doesn’t make us any better or worse then anyone else to have these gifts or deficits as it doesn’t affect the core of our humanness . We are all just people in this human condition and I have seen the best of things happen when we are not compared to anyone else but allowed to develop and move forward at our own paces.

Competition isn’t all it is cracked up to be.

Prejudice comes in strange places. [Embarrassing childhood story deleted. :) ] I felt a bit enraged that our society puts these arbitrary fences around children….learn this now and that later….That was when I first told you that if you are three and you want to learn algebra then that is your time to do it….and if you are 99 and you want to learn algebra then that is your time to do it. Neither should anyone be made to feel bad about about their time being too early or too late. It is just their time…nothing more or less. It doesn’t change who they are as people.

I saw the most beautiful classroom once. I hear some schools are trying it now decades later in a better way with no actual age designations involved. It was your oldest brother’s class in first grade. The teacher, had devised a way where she tested every child in every subject and rather then teaching a formal class let every child proceed at their own pace. In addition, where they excelled they taught others…and where they had problems they were tutored by others. So everyone was a teacher to some and a student of others….and that is incredibly liberating and teaches a huge life lesson of acceptance. We are all good at some things and not so good at others and it doesn’t matter as long as we can all feel comfortable in our own skin and proceed as we are able and get help where neeeded.

Your brother like you was spontaneously reading at an early age. I didn’t even know there was a name for this or that it might be part of something bigger. He just read “Milk” off a truck when 18 months old spontaneously and by the time he was three was taking Time magazine to bed. We didn’t think too much of it past getting him the books he wanted and seemed to like to devour. So he made a film in first grade to help others learn to read. His penmanship was illegible so someone who was good at that in his class tutored him and he had to work hard at it. We didn’t think too much about that either…or the fact one of your brother’s found spelling hard but could assemble and disassemble a bicycle the first time he got one. Such mechanical ability was a plus to all of us. We told him about people who couldn’t spell who later ran corporations and used spell check. Getting past those teachers who put such stock in it and graded papers accordingly was the hard part.

Sometimes too things that others don’t see as strengths really can be in some circumstances. It is good that we have differences as it makes us all stronger. If we were all the same and without diversity we would be up a creek without a paddle. I used to take care of children part time before you were born. I had a boy I took care of who needed to stay in my arms for quite a length of time observing the small group of children playing in our yard before actually joining in, first on the edges, and only gradually engaging. I remember his grandfather telling me he worried about this as he felt his grandson should jump in feet first and join the fray. I remember telling the grandfather that I thought his grandson had a special gift of observation. He would watch so carefully this and that and notice things that others did not. I lost track of that little boy and his family over the years but as some do I googled his name some time back wondering what he had done later in life. It turns out he became the bureau chief for a major newspaper and it had been his job to go into warring foreign countries before his staff and observe and prepare so they could be safe while covering stories often in quite dangerous circumstances. Part of me rejoiced in that he had put that gift of observation to work and never believed anyone that tried to tell him being hesitant to join in was a deficit. In this case it saved lives. Sometimes gifts are not recognized as such and an environment that celebrates diversity is a positive force.

I remember a conversation you had with a friend. He was saying that he could not cook for himself, was totally unable to prepare food or remember when to eat but could fix practically any computer problem that came up and could fix a car. In our society he was considered disabled but someone else who could not fix a car or a computer were not considered disabled because they could cook and remember to eat. I know that eating is vital. That is the distinction. But so is transportation and communication and while as a society we need to make sure that people who cannot cook their food or remember to eat have those around them to do this….we need to understand that everyone has something to contribute…something they need help with. This is just such a simple concept. I need computer help and car mechanics. We all need each other’s help at some time.

I know that I find spatial things very difficult. If I go in a door to a store and come out a different door I can’t find my car. I get lost in places others don’t. I have always been like this. I have now identified a lot of people like me who function well in many other areas but find navigating this spatial world is laboriously hard. I have relied on you and other members of our immediate family all your lives to help me with this. No one made fun of me. They just stepped in when needed and helped me do what I needed or wanted to do. You went with me on my first trip driving in S.F. because both you and your brother knew if I didn’t have a navigator I may not come home. You were not much more then five and had a phenomenal ability to find your way about the planet that I needed to rely upon. When you wanted to go to Pennsylvania several years back, and we rented a wheelchair van and I came back to drive you through three states to your destination, your father got on the internet and took a satellite picture of every stop light we would encounter on the entire trip. Then he did it backwards since I can’t directionally transpose. I had two books of pages to rely on for that journey. No one told me not to go….I just got a lot of help along the way. It was an incredible experience I am so glad I got to have…but would not have been able to manage without help and someone understanding where the hurdles would be for me. Yes I can drive but……

I always felt accepted in our core family and my areas of non-expertise were accepted matter of factly and I was encouraged to progress in areas that interested me. I was allowed to teach and to be tutored. I have never felt that because I was a parent I had to have all the answers or could not learn from my children …and you know well I did not have all the answers and often glaringly so. I can remember questions coming early on where we had to look for the answers and sometimes could not find them. So when learning physical things were hard for one of your brothers we found a swim center that taught swimming one-on-one and a woman with a knack for teaching horseback riding to people with physical disabilities. We soon found he was a strong swimmer and had a natural ability on horseback. It was the original group method of instruction that had gotten in his way. It wasn’t that he couldn’t learn he just needed a different method of teaching.
this comes with the sensory integration disorder he has. Kind of like I could drive to Pennsylvania with the right support. Kind of like someone who holds back and observes getting his entire staff out of a warring country alive. Kind of like that.

I wanted to say one more thing about gifts. I remember a day at work where everything had been a challenge. There had been many emergencies, and completing a schedule was not easy. Besides that I had encountered a lot of people that day who were stressed over one thing or another. I walked into a room near the end of the day to work with a woman who was a quadraplegic. When I first came into the room the woman gave me the biggest smile. I literally basked in that smile….took the light from it and let it penetrate my entire being. I told her right then and there that she was the first person in my day to smile at me and it was just what I needed at that moment and I thanked her. She gave me a gift that I really needed and helped me stop and regroup. I was there to help her but she was helping me without even realizing how much her attitude had meant. Not that everyone has to smile….but sometimes a gift just falls on your lap and you take it and appreciate it beyond words. The time I spent with her was renewing. Gifts are not always something tangible or costly. Sometimes a gift is another view of life someone gives us in a written word or a picture or an interaction or an emotion. Everyone gives and everyone has something to give. Everyone takes and we all need to ask for help at times. Never underestimate the effect you have on others. Exclusion cheats us all and diversity will always be our saving grace.

I think this has actually been becoming more true in the last 20 years or so in the US, in that the school system has responded to its problems by becoming even more institutional.

I know that when my sister went to my high school (before me) there was one time that the students protested something that the administration was doing by all getting together and eating lunch in the lobby. They could do this because they were allowed eat lunch in various places and some people who lived nearby even went home to eat lunch.

This was something that had lived on in the student lore by the time I was there, but the administration mentioned it to us from the standpoint of “It was okay for them to eat lunch there, but it wasn’t okay when some of them stayed after lunch break instead of going to their classes. And now you’re required to eat lunch in the cafeterias, so you can’t even do that.” So here there’s this weird idea that the school administration can dictate terms of protest to the school administration and it still be meaningful, but there was also increasing regimentation of our lives during the “school day.” Now we had to be exactly where they wanted us throughout the entire school day and we could never leave until we finished our last class.

The cafeteria was a really bad environment for me mostly because of the noise, so I spent a lot of time hiding from that. The band director had let a few of us eat in the band room, but when the administration figured out he wasn’t always there during this they made us go back to the cafeteria. At this point, I usually spent lunch in a bathroom stall (eating wasn’t really on the table). Eventually someone found me THERE and I had to stop doing that.

The person who found me was actually someone who worked in special ed who was trying to make someone didn’t want to go into the cafeteria go into the cafeteria, while the guy in special ed wanted to hide in the bathroom. So I just said “I don’t like it there either but it’s okay I can go there” and from then on I only hid in the bathroom when I thought it was absolutely necessary. Sometimes the special ed guy would see me, smile in a patronizing/scary way, and ask me how I was doing or if I needed anything, which I hated. I didn’t want anything to do with special education.

People REALLY shouldn’t have to go through stuff like that. I’m sure there’s some kind of highly bureaucratic way to offer a quieter eating environment to people who need it, but you could also just, you know, let people eat where they want as long as they’re not causing problems.

“I hear people say things like ‘I didn’t get to have a childhood because my mother was disabled’ and I want to shake them and ask ‘What do you think ‘a childhood’ is supposed to be!?!?’ ”

More than this, I have had the problem where the “life stages” didn’t have much to do with me, my needs, or what I enjoyed. I’ve always had the sense that people were taking out there own insecurities on me by telling me to do things they wish they could do or had done, without checking to see if those things were actually good for me. But this is obviously a way smaller issue compared to being portrayed as mainly a burden. It’s kind of relevant, though, because one of those supposedly horrible horrible mistakes I made was graduating high school early and I’ve never regretted that (I also didn’t go to prom).