LoriB.me

Rambling On…

Mother’s Day Wish — 05/11/2014

Mother’s Day Wish

Wish I could take your pain away
Wish I could take you out in the sunny day

Wish I could make you stronger
So you could come home for longer

Wish I could hurt instead of you
Iā€™d give anything to make that true

Wish I could hold you and make things right
Wish I was there with you tonight

Hope you are having a happy day
I’m there with you, in spirit anyway

You are the best mom, I know it’s true
Can’t wait ’til the next time that I see you

Perspectives of Autism from My Family — 04/25/2010

Perspectives of Autism from My Family

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 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:

1. What, if anything, changed for you when you found out I am autistic?

M&D: What changed for us when you were finally diagnosed was relief and sadness. We were glad to hear that they finally put a label on all your symptoms and you did not have a life threatening disease and that this condition was somewhat manageable. We were also very sad and disappointed that this was not diagnosed earlier in your life because of all the pain and suffering you incurred unnecessarily for so many years. As parents, your pain was our pain.

Karen: So many things changed – maybe not immediately but I’d say quite a bit in that first year – more than I could probably put to words here.

A lot of things started to make sense in terms of why you do some of the things you do. I remember looking it up in the DSM (which I use regularly where I work) and feeling like all the puzzle pieces had clicked into place. I never thought of autism because in the DSM it’s listed as a condition that is diagnosed in childhood and I work with adults so it never occurred to me. I don’t think I had heard of Asperger’s at that point.

When I say “some of the things you do,” I mean specifically – rocking, flapping your hands (or “stimming”), echolalia (repeating words or phrases), getting “loud head” – i.e. becoming sensory-overwhelmed, having difficulty with certain social situations or people. Also just some things about what you like or dislike make sense in terms of sensory input – your love of soft things and clothes, your dislike of certain tastes or textures or lighting or sounds.

Another thing that changed is that I had a better context for understanding some of the ways that you see the world. I feel like we went on a journey together as we looked for other people on the autistic spectrum and in particular, resources. Basically it opened a whole new way of understanding who you are and I think that brought us a lot closer.

2. What do you see as the positive aspects, if any, of my being autistic?

M&D: After reading about Aspergers, and being told that most sufferers of this form of Autism are highly intelligent (something that we always knew), and could really focus on one thing at a time,  we were glad that you were putting your talents to good use. We are so proud of what you have been able to accomplish up to now and what you will continue to accomplish in the future.  We are also in awe of your writing ability. Your communication skills over the internet are beautifully written and very enlightening and educational.

It makes us very happy that you chose not to look back with “what if?”.  Being able to look toward the future is a very positive attitude and one that will prove to be very fruitful.

Karen: The biggest thing for me is that you have really changed the way I see the world too. I’ve had to do a lot of my own soul-searching about my learned and ingrained ways of communicating with others, social conventions and norms, the ways that we neurotypical people, or “NTs” take for granted our skill with non-verbal communication. It has made me less afraid of being straightforward and honest because with you, I have to be, and not just because you are my life partner. I can’t expect you to just know when something is wrong or when I might be feeling a certain way – the way other people in my life might be able to tell. I have to tell you and be up front about it. Ultimately it has made me see how much gets covered up – for various reasons – by the neurotypical world – and how important it is to uncover those things.

You are funny and silly and I find, for example, the echolalia endearing. I hope that is not insulting to anyone on the spectrum who is reading this. It makes me laugh but not because I’m making fun of you but because there is a certain whimsical and playful quality to that, and to other things you do that I just love. It’s freeing to me because I get to be playful with you.
I love your love for computers, coding, geekery, gaming, podcasts, screencasts, etc. You get so into it and I think that the computer has brought new worlds to you, including having your own business.

I especially love that we don’t need to constantly talk to be comfortable around each other. I talk all day for a living and I like to be able to come home and we can both be doing our own thing in the same room without having to have constant conversation and both be totally content and relaxed.

I like the way you are and who you are. It’s hard to say what “part” is the autistic part and what part is just who you are because I think it’s inseparable.

3. What kinds of challenges have you faced because of my autism?

M&D: Now you’re asking me to tax my brain.  Thirty-eight years is a long time to remember, but I do recall there were many incidents and challenges.  Keeping you in line at school was probably the most challenging because it involved many years.  Trying to get a diagnosis was very frustrating.  I always had a feeling of guilt that I wasn’t doing enough. Aspergers was an unknown back in the 60’s. No one ever suggested Autism or any form thereof because basically you were functioning (or pretending to function), almost normally. You didn’t have a lot of friends but you managed a few (although some of them were very questionable at the time) you enjoyed their company. You were basically anti-social and that hurt me because I was such a people person. We were disappointed that you never finished college but then again you never thought many of the courses were necessary and what would they do for you later on in life. We tried to convince you to stick it out, but to no avail. I think the college experience was a good one because you managed to make friends and had some fun.

Karen: Probably the biggest challenges are social interaction and travel. You are sometimes uncomfortable in certain social situations, which means that at those times, I go and do things on my own with other people. This works out most of the time – although as you know it took a bunch of years to figure out pretty well what works and what doesn’t for both of us. I imagine there will always be situations that come up that we need to work through. Sometimes there are places or events that I go to and wish that I had my partner there – and that you would be able to enjoy them.  Sometimes it takes a lot of energy to work things out or come to a good compromise.

Travel can be difficult because it’s hard for you to deal with, even though once we get to our destination, it’s usually fine. It’s a lot of stimulation and energy-drain and I sometimes get impatient for you to decide whether we or you are going to go somewhere.

The energy thing can be hard in general because sometimes I have more energy than you to do multiple things or multitask and your run out of it quicker.

4. What types of communication have worked best and what types of communication have worked the least with me?

M&D: Being your mother, I often felt that I had this inner connection to your thoughts and feelings.  There were many times you called me a witch.  When I get the feeling that something is not right I call and I am usually right.  During those times I feel your pain and frustration and wish that I could just hug you and tell you everything will be better.  I think the positive approach always worked for me with you.  I try not to ask too many questions when I think you are having a bad day.  When asked, I try to answer your questions with honesty and an up front answer. I truly believe that since you have been diagnosed, your communication with the outside world has improved.  Knowing what is wrong always helps to prevent bad things from happening because there are medications, explanations and advice as to what to do. I believe that the knowledge of knowing that you are not alone and there are so many other people suffering from the same thing has made you a better person and improved your outlook on life.

Karen: Like I was talking about in my earlier answer, being honest and up front works best. It’s not always easy – it comes way more naturally to me than it did before we got together. It can be scary but ultimately it always brings us to a better understanding of each other. It still makes me squirmy sometimes but it has made a world of difference in all areas of my life, not just in our relationship – which by the way is another positive thing.

Me saying to you, “Why don’t you just….” does not work at all. It makes us both frustrated. Sometimes I forget that if you could “just” do something, you probably would.

5. Is there anything you have learned that you would like to share with other loved ones of autistic people?

M&D: I have learned that everyone walks in their own shoes.  You are who you are, and being happy doesn’t mean that everything in life is perfect.  It just means that you have to learn to live with the imperfections. Remember, all is not what it appears to be.  You have a great support team with Karen, family and friends. To me and Dad you serve as an inspiration in being able to accomplish what you have until now and what you will continue to accomplish in the future.  We love you and we will always be there for you.

Karen: I have learned to be more patient and more honest in general. I have learned that brains are fascinating and mysterious things and that everyone’s brain works differently. I have learned that people on the autistic spectrum have as much to contribute to the world as NTs do. I have learned that people on the spectrum have so many things that they can teach NTs: about different ways of communicating, of seeing the world, of showing love and affection and about the nonsensical nature of many of our social norms. I have learned how much NTs take for granted about how we communicate without words – and how confusing and bewildering this can be for people on the spectrum. I have learned that people with autism are lovable.

Welcome to the world Abbey B! — 07/07/2008

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 šŸ™‚

if $brain >= $fried ? ramble : $code; — 12/01/2007

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

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 šŸ™‚

Master Mary and Baby B — 05/16/2006

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 šŸ™‚ 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 — 05/10/2006

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, NY — 08/17/2005

New York, NY

Me and K went to NY to celebrate my mom and dad’s 40th wedding anniversary šŸ™‚ It was so nice that we could all be together to honor the occasion. M & D stayed at the St. Regis, and me n K stayed in Queens with Brian and Sarah and Atticus, their very sweet and big and fuzzy cat.

new york city
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Bri and Sarah’s Wedding! — 09/11/2004

Bri and Sarah’s Wedding!

Bri and Sarah got married in San Juan, Puerto Rico on Sunday. Me and Karen went there for 4 days. It was very hot and very beautiful, especially the wedding! It was also nice to see so many people I haven’t seen in so long, like Eric and Vivian and Pete and all of Bri’s friends. The first pix are up on their site. Cllick here to see them. Those are just the ones from my camera. Most were taken by Karen. I had my dad’s cam. Many more are soon to come.