Perspectives of Autism from My Family

perspective

I have been different from other people for as long as I can remember. Over the years, I have had many different diagnoses, opinions, and treatments that were not quite right. My parents have tried to get me help since I was a little kid, but no one really knew what to do with me.

I was a smart but strange kid. I didn’t understand things, especially people. I didn’t fit in. I thought school was dumb. I thought a lot of things were dumb. Turns out a lot of them are, but many were not as black and white as I thought at the time. It wasn’t until I was an adult that I began seeing shades of grey.

During my early years of school, I barely talked at all and spent a bunch of time in the principal’s office. My teachers and school psychologists thought I could be normal if I tried harder. If I would just be like the other kids, they would like me and wouldn’t be so mean to me. I just wasn’t “applying myself”.

It wasn’t until 5 years ago that I finally learned what is “wrong” with me. I have Asperger’s Syndrome. Autism. I sometimes wonder what would life have been like if we knew that when I was 3 instead of when I was 38? It is hard not to think of all the “if”s.

Would I have been a happy kid? Would I have finished college? Would I have never wanted to kill myself? Would my parents have had a happier and less frustrating life? Would they have had support and not had to figure everything out for themselves? No way to know and generally a bad place to take my brain.

For Autism Awareness Month, I would like to write about autism from the perspective of the people who are closest to me. They have been there for me through the best times and the worst. I think that acknowledging and documenting their experiences is an important part of increasing autism awareness and would like to thank them all very much for answering so honestly and thoughtfully.

I asked 5 questions each to my partner Karen and my parents Gloria and Ron (M&D). Here are their answers:
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Welcome to the world Abbey B!

Abigail Ruth BerkowitzHappy birthday! Abigail Ruth Berkowitz was born at 1:47am this morning to my sister-in-law Sarah and my brother Brian. 8 lbs. 4 oz. 20.5 inches. Smaller than a cat. Cuter than a baby giraffe. Congratulations Bri and Sarah! She is beautiful :)

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if $brain >= $fried ? ramble : $code;

Hannah Bear

I am too busy. I suck at being busy. It is my worst thing and it always ends badly. I am not sure how to not be busy. It is a vicious cycle. As soon as I start feeling better, I want to do things. All the things that I can’t do when I am sick. I want to work. I want to play. Sometimes, I even want to see people.

I was sick for so long. First a year of bad meds and then cat scratch fever. I was lucky that the meds thing got straightened out before the CSF, but it is only very recently that I can enjoy it. Suddenly, I find myself feeling great! I still get tired and confused, but that is ok. It is part of how I am. After such a long time of not being able to do things that I wanted to, I feel like it is a race for time to do them now that I am feeling good. I would love to think it will always be like this, but the truth is that it is not and never has been.

The thing is, I think it could be like this most of the time if I didn’t have stress. I know that is impossible, but it would be possible to have much less stress. Only problem with that is I would be stuck not doing anything I want to do again. I am stressed by working. I am stressed by traveling. I am stressed by being around people. My brain gets overloaded and bad things happen. I get sick. The screaming in my head that is kept in the background by the meds gets louder. My brain shuts down. I twitch like crazy. I become miserable and useless.

I have no idea what to do about this. I want to work so badly. I love what I do. It is like being paid for doing puzzles and arts and crafts. When I code, my brain is in a happy place. Everything makes sense. It has to. As an added bonus, I get to take that code and turn it into a (hopefully) beautiful thing to look at. I am not a graphic artist by any means, so even the art part is like a puzzle. I combine graphic art made by actual artists, with photoshop skills and an eye for detail, and create an entirely new thing that never existed before. What’s not to love?

I was wanting to go to Florida to see my niece Hannah and the rest of my family for a whole year, but couldn’t because of being too sick. Then all of a sudden, I was okay to travel. It is a rare and beautiful thing. There was no way I wasn’t going to Florida. The trip (airplane, etc.) went pretty well thanks to Dramamine and, as always, being with Karen made everything better and more fun. Being in Florida was even okay. I love my family, but I hate Florida. I can’t deal with the hot and humid weather. We completely lucked out with that. Not insanely hot or humid. Last time I was there, I couldn’t even stand to be outside for more than a minute. Got instantly exhausted and dizzy.

It was really great to see my family. Hannah is beyond the legal limits of cute. It was so nice to get to know her better and see her sweet smile. I really loved getting to see her with my brother, sister-in-law, and parents too. They are a family. I am so glad they live so close to each other. Sometimes it is hard living so far away. Sometimes I wish Florida was in Nevada. My cousin Eric was there too. It is always nice to see him and my aunt Wilma and uncle Pat too. Sarah’s (sister-in-law) family was there too. It was nice to see them too. So nice, that we brought her sister Sam back with us. She will be going to acupuncture school in Berkeley starting in January and has been staying with us this past week. She magically found a great place to live in Berkeley on her fist try and will be moving in today.

Bad Apples

Haven’t had enough rambling yet? Then on to the saga of the bad imacs. Me, my dad, and my brother all got new aluminum imacs last month. 2 out of 3 of them were duds. There was a problem with the ATI graphics cards. The whole computer was unstable because of it. Black screens, blue screens, strange graphics, freezing, etc. Windows X 10.5? There has been a firmware update for the graphics cards released that appears to fix the problem for most, if not all, people. Thankfully, my brother’s was fine from the start. Both me and my dad returned our computers and got brand new replacements. All is good now.

The new imac came with Leopard and now that it works, I have been loving it! The screen is huge! Not only is it 24″, but I have been using Spaces, a new feature of Leopard where you can have several “desktops” and easily switch between them. For example I can have photoshop open in one desktop, giving it the entire screen to itself, mail and safari open in another, Firefox and BBedit in another, etc.

Time Machine is totally cool too. I can’t even believe how easy it is to back up. You plug in the external drive and the mac asks if you want to use it for Time Machine. You click ‘yes’. That is it. Your hard drive is being backed up every hour and saving daily, weekly, and monthly backups for as far back in time as the drive will allow. When it gets full, it asks if you would like it to delete the oldest backups to make room. Unbelievable! I will still make daily clones as soon as super duper is Leopard ready, but Time Machine offers a different kind of backup that is easier to use, automatic, and frequent.

Just a few more things to ramble about before I go…

K – I am so very proud of K! She has been saving the world as always. In recognition of her hard work, she has gotten a promotion at work and is now a supervisor, which is the direction she has been wanting to go. Congratulations K! It makes me happy to know that people will have an opportunity to learn from her and benefit from her years of experience.

WarcrackShikibee has joined a new guild and is about to ding level 50.

Rehab – I am meeting with someone once a week who will help me research if there are jobs available where I can do contract work from home or with a very flexible schedule. I would really like that. Freelancing is great because I set my own hours and don’t have to answer to anyone except my clients, but I work all the time and barely make any money.

If I did contracted work instead, someone else would be dealing with the clients, setting the prices, and all of the other business related things that I can not do. Even splitting the money with an agency or other company, it is very likely that I would make more money than I do now. I hope something like that could work out. I was hoping that I could keep my current clients and stop taking new freelance jobs if there were contract jobs available instead.

WordPress 2.3 Update – This one went much more smoothly than the last two. I wish there was a way to manage tags, but from what I understand, the dev team is waiting to find out what people want rather than starting with a ton of features that people may or may not use and then having to change them later. I am looking forward to 2.4 and the new admin changes.

Joomla 1.5 – I am working on a new client site with Joomla 1.5 RC3. It has been very stable and the code is MUCH cleaner than before. I love the new templating system and look forward to its final release and the updated extensions that will follow. If you are planning to integrate any kind of forums into your site, stay with 1.0.x for now.

phpBB3 – Love it! Tons of improvements over phpBB2. Current release is RC8. This update has been a long time in the making. I am hoping that converting from older version will not be total hell.

I have finally run out of things to ramble about for now :)

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Master Mary and Baby B

Baby B was born today! Woooooooooo hooooooooooooooo! I am so happy, I can hardly stand it. Hannah Audrey is her name :) Congratulations Bri and Sarah! For those who are out of the Berkowitz family tree loop, Bri is my brother, Sarah is my sister-in-law, and Hannah is my brand new niece!

It has been a very intense day. Master Mary Davis Cates died this morning. Master Mary was an amazing martial artist, the highest ranking member of Cuong Nhu outside of the founder’s family, a hero of mine and many many others, and most of all, a wonderful magical woman. It is a very sad day for very many people.
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Ottawa

Me and K went to Ottawa for Passover this year to visit K’s family. Lorena came too and their folks met us there. We stayed with Heather and Bruce, K and L’s cousins, and their children Adam and Max. Their other cousins Mark and Tina, and their 2 daughters, Leah and Omi, came from Toronto and stayed there too. It was a full house! K and L’s folks stayed with Rob and Ros who live nearby. Rob is K’s mom’s brother. Got all that?

photo of LB, K, Lorena, Tina, Mark, Heather, Bruce, Omi, Leah, Adam, and Max

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new york city
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