Saturday, March 31, 2012

1 in 88 versus the DSM for Autism

There's a whole new line of fear-mongering being launched right now across the internet about how the new DSM will supposedly change how autism is reported. This will supposed change the new number of 1 in 88 children back towards 1 in 110 or even further off of that.

First of all, you have to ask yourself one question: Based on what proven statistic?

You see the idea of 1 in 88 is not NEW news by any means. It's been under study as a possible change in statistics for three years (give or take). So here we go again, freaking out over old news. Just because they've decided to place confirmation on it doesn't mean the world is going to change. All these people had autism and tomorrow they still will, but I get ahead of myself here.

As I posted in my last blog about the DSM (and the one before that), the changes in diagnosis that people are freaking out about, were implemented LAST YEAR. So Asperger's was already dissolved into being called simply.... autism. So, again, nothing new. And by the way, that didn't change my diagnosis or my son's diagnosis. Want to know why?

Because it's up to your doctor! Moreso it's up to you and your doctor as a team. Doctors don't go through all their patients and change diagnosis just because the DSM says so. Can you imagine the kind of man hours that would take? Doctors don't have time to quibble over terminology just because a panel of experts say so.

There is no law that says your child has to be rediagnosed. If your doctor has been supportive of your child's needs so far, that is highly unlikely to change. And ask your doctor, yes a profound thought, ASK YOUR DOCTOR if you are worried. Don't read some bilge on the internet and go into hysterics, it does nothing for you.

Doctors don't like being told how to diagnose their patients. Read that over and over again until you'll never forget it.  Since the last fear wave went through I mentioned it to real live doctors myself. One of which rolled his eyes and shook his head. He knows his patients IN PERSON. The people writing the DSM don't.

The comments that will fly by your pages will have little in the way of educational merit and be nothing more than blind fear. I've seen comments on "accurate reporting" and "losing diagnosis" and as I dug into them, I found that there was no supporting evidence to any of them.

So, the final advice that will clinch it all is to talk to your doctor! The internet is a fine place for advice, but none of these people know you or your family personally who may be giving this advice.

Past that, I'm not surprised they were able to confirm the 1 in 88, I'm sure that number will increase as time goes on.

Tuesday, March 20, 2012

Internet support groups

It seems like you can't sneeze at your search engine without finding a support group on the net. You can find them for anything and at any capacity. Some are small like chat rooms and some social pages. Others are huge with website information, message boards, articles and more. Some internet support is done by a person writing blog articles, like this one. There are all sorts of variations, but what do you need to know in looking for a place to be accepted?

Isn't that what it's really about? We all want a place to be accepted and there are plenty of people who can't seem to find that place in their local avenues. Thanks to a lack of services in small towns or even some cities, the internet has become the go to place for support groups. The good about this is that these groups are easy to find. The bad is that they lack "in person" social experiences.

The most important thing to remember about any social group you join for support of any condition is this:  Everyone else has the condition too. If you join a group for autism, you have to remember that they people you are talking to also have autism and have the same pitfalls in behavior or social skills that you might have. The same thing goes for bipolar disorder. What's worse, words on a screen lack emotion and are subject to being easily misunderstood from what the writer intends. Everyone has extra sensitivity to something and stepping on toes or egos is so easy it's ridiculous. This results in flame and post wars that get people banned or completely destroy the validity of a support group.

Our conditions make us all unreasonable in one way or another and we need to remember that as we enter the support group setting. This is why live support groups usually have a mentor, therapist or doctor on hand to help moderate discussions and help with misunderstandings.

There are a lot of community groups that lack moderation. Places with no moderation risk becoming mosh pits of hostile behavior that do little for support of anyone. Some people like it, but few of them feel the need for acceptance. Rather, they just want a place to go for their bad behavior.

No one is immune to the power of misunderstanding on the internet. Even good moderators can forget that the person they are talking to has a social disorder. That, in itself, is the great pitfall of having a social disorder in the first place.

TIP: When a comment upsets you, STOP and ask yourself: Is this person really trying to offend me or is this a misunderstanding? Remember, you are in the same boat and this person likely thinks differently than you do.

TIP: If you can't get along with someone or feel they are truly attacking you, just block them. Sometimes there is just no way to help that person, no matter what you do and some people really are just there to hurt others.

TIP: Don't stay in hostile territory. When it's clear that the behavior of the group isn't going to be helpful to you, leave. Shop around, there are lots of groups out there and some are bound to be well moderated and much more friendly.

Being in a support group on the net can be a rewarding experience. Just try to remember how your disorder/condition affects you. However it affects you others will be affected similarly, better, or worse. We all have triggers and we all have the potential to "go off". Some people will have quicker triggers than others. By this rule of thumb, you can get along better with others and make your social internet experience that much better.

Sunday, March 18, 2012

Losing my coordination

This has been a morning of painful reminders. It feels like my entire  home conspires to beat me senseless. That's not true of course, but when you miss doorways for door frames, walk into walls, open cupboards and crack your knees on everything in sight, well, you get the idea. I feel like a bad comedy skit, and it's a painful one. If there's a way for me to have an accident, I 'll sure find it.

Half our laundry work is done in the kitchen, the washing that is. The dryer is out in our garage storage. It's just the way things are built. Anyway, with the help of a nice tile floor, I managed to step into an empty laundry basket that slid away with my foot. I'm not built to do the splits, let me tell you. That really hurt. It also hurt when I shut the bedroom door on myself.

This is one of the realities of an autoimmune disease/disorder (blast it, I had to stop typing for a few minutes because I couldn't get my fingers to type that last word!). It's more than a little frustrating.

Disorders and diseases that attack your nervous system, like autism and various auto immune disorders, destroy your coordination and balance. Autism isn't known for being progressive, but you change as you get older, believe that.

Children with autism have been found to have motor difficulties. It's why there are so many cases of handwriting problems (for one example). Delays in fine motor skills are not uncommon.

People with MS report problems with dropping things and severe coordination difficulties. It gets worse for any motor skills you don't use. One person who suffers the condition explained to me that basically, "if you don't use it, you lose it". So staying active as much as your condition will allow is important.

Things that help are exercise and motorskill practices. You can check with therapists for ideas on what you can safely do. It's amazing how the simple act of picking something up in your hand can be taken for granted, until you can't do it anymore.

There are no simple solutions, though well meaning folk will offer them.
"Just use a ruler for your straight lines, Dave."
Trust me, I do, but when neither of your hands will hold still, the ruler won't either.

I know I'm not the only one, that's why I'm sharing this today. Today has just been tougher than most. I know there are many people out there who suffer this and feel the same way.

Thursday, March 15, 2012

10 years of Denver

Today, my son is 10 years old. I'm taking this moment to reflect on how far he has come in such a short time. I've often referred to him as my little hero and you are about to read why.

Denver has Asperger's (now classified as "Autism") with hyperactive tendencies, social difficulties and sensory issues. Despite his challenges he has always met them head on (sometimes literally). These are some of the greatest memories and achievements as they come to my mind today.

-Where's my buddy?: This was his favorite toddler game. When he started to talk (as he did early on) I would come to get him out of his crib, look around the room, and ask, "Where's my buddy?". He would pipe up all bright smiles, "Here I am!"

-Premature: He was born almost three months premature at 2lbs. Still he came out screaming and only had to be on oxygen once for less than a day. He gained weight quickly and showed us he was ready to be in our big world.

-He learned to crawl and walk early.

-Hydrocephalus: It was mild and self corrected before he was four.

-He had obsessive organization of objects early as well. If something were moved it would upset him greatly.

-Poopie Picasso: Dirty diapers would get smeared on walls thanks to texture sensory issues. If there's any phase I'm truly thankful to have survived, it's this one. As a toddler he had to be put in footie jammies with several safety pins to try and block the zipper. He still got through them sometimes (little escape artist). I can't recall how many times I had to scrub his bedroom walls.

-No boundaries: Nothing stopped him if he wanted something. I remember mornings getting up and finding the contents of the refrigerator all over the floor, pet rats set loose and all during ages of 2 and 3. I once found him on top of the refrigerator eating Cheerios. We also got up to find him sitting in our 30 gallon aquarium with the four pet rats we had (and the aquarium was up on a high stand). He climbed chairs for that trick. He also took apart all manner of "childproof" doorknobs or latches.

-No pain: He developed a sense of pain late. He broke his toe by snagging it in a bit of carpet and falling. We didn't know it was broken until we saw it swell up and turn purple. He also took to taking a running start and slamming his head into his (thankfully hollow) bedroom door. He succeeded in making many holes in that door and one wall.

-Pain: When he did develop pain sensory he explored it in odd ways. His mother sat on a hornet on the couch and it stung her. Seeing what happened as she jumped up and yelled, Denver promptly moved over and plopped down on the hornet himself. The most notable accident that he didn't intend was jumping off his bed into a pile of blankets. In the pile was a die cast airplane that stabbed into his foot. He had to go to the ER for that one.

-Head banging heartache: He had fits as a toddler where nothing could console him. He would bang his head furiously on the floor and have to be held. While being held he would bite and scratch in his blind fury. The only way to calm  him was to cover him with a blanket. I'll never forget how he looked at me one day as I held him and said, "Daddy, why can't I stop?" He had to start wearing a helmet and did so for a full year (at least).

-Potty training: Despite our best efforts, he didn't potty train until Kindergarten when he saw other children using the potty. Just after that we moved to Wisconsin.

-Kindergarten: He had to learn not to bite other children or hit them when angry. We had his diagnosis at 3 years old so his teacher and the school was fully informed. His first school in Lincoln, intended to put him the "behavioral" room and keep him there. His school in Wisconsin kep him in mainstream class. His new school had its own autism library but we would still see difficulties.

-1st Grade: He had to start medication due to uncontrollable outbursts in class. He had a fixation on explosions. He would run up to other children, wave his fingers in their faces and yell "BOOM". They started working with him on social skills and the lunchroom (very loud in lunchroom). His first grade teacher told me he couldn't learn the material and asked if he should be institutionalized. Denver showed her differently by the end of the year. He could literally read words backwards and upside down. He had a classroom aide as well.

-Death of a friend: It was hard for him to understand when we returned to Lincoln a few months after moving to Sheboygan for my Godson's funeral. He loved Zach and the loss hit him hard. He still talks about Zach being his guardian angel.

-Medication Revelation: After being on his medications for a while, he came up to me unexptected and said, "Dad, I can think!" He showed me his home workbook for math, "I can do this!" He was honestly excited.

-Divorce: He went through seeing a his mother deal with illness and our divorce. It was hard on him and we alsoo moved to a new apartment. Because Sheboygan had open choice in schools, I chose to help him by keeping him in the same school so he had something familiar to work with for the year.

-2nd Grade: His teacher was former behavioral education and knew autism. By the end of the year, she confided that Denver had taught her things as much as she taught him. Difficulties in behavior and med alterations happened through the year. We faced challenges when the behavioral teacher asked if he should be institutionalized and voiced concerns about my being a single parent or writing blogs about my child. Though they still worked very well with him all year and he had lots of support; when the same teacher and principal asked that I take him to a different school, I decided it best to do so.

-Death in the family: My father died and we went to his funeral in New York State. Denver learned that he actually likes motorcycles. He gave himself blisters on a small bicycle by pretending to rev like he saw the Patriot Guard doing.

-3rd Grade: Braving a new school and taking a schoolbus. The year went well. He had trouble with respecting teachers and swearing in class. This took the year and a lot of coaching to teach through. He had a great year with very understanding teachers and support.

-Death in the family: His grandmother on his mother's side passed away.

-Big Move: After meeting my wife, Lisa and dating we moved to Louisiana. This was a major adventure for Denver, riding it the big truck so very far.

And now he's almost through 4th grade and about to take the LEAP test. He's in the top of his class for spelling and invited to the school spelling bee. We are very hopeful for him and he has come such a long way and through so very much. Happy birthday to my little hero.