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.

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.

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.

Your Doctor and the DSM

Today I found this article about more on the controversy over changes in the DSM, the diagnostic manual supposed to aid in diagnosing "mental illness". What the article suggests, I find very interesting. It suggests that most doctors don't like the DSM in the first place. Check it out HERE.

After reading this I can understand why. Mental disorders are not something you can fit into a distinct mold. They all have variations and degrees of effect and many are mixed in the people that have them. For example, it's possible to have Asperger's and Bipolar disorder at the same time. How do you distinguish them? That is what your doctor is supposed to be for. There are long trusted tests that can be administered and very long questionnaires that can help decipher. Specialists have been using these for years.

This further supports my belief that the key is not the DSM, rather your doctor. Your doctor has the final say and write the proper insurance codes to get you the support (meds, etc.) you need. No matter what they write in that DSM, the DSM is not your doctor.

Since the recent suggested changes, I've seen people worried about losing their diagnosis or having their diagnosis messed up in general. I literally have had people say to me that they need to worry about avoiding re-diagnosis. Well, here's the thing, don't accept it. You know your child better than anyone, you've researched the condition in and out (I hope) and have a good rapport with your doctor (I hope) and you can stick with what you know. The reality of your conditions or your child's conditions don't change just because a book says so. Talk to your doctor about your worries and that you want to make sure your child gets the support they need.

Bad decisions and self punishment

I don't care who you are or what kind of childhood you had, we have all done something we aren't proud of. We have all made bad decisions. That's half of learning when you are growing up after all, mistakes. Some are bigger than other and cost more too, but if you learned something that eventually made you more of an adult, it might have been worth it.

That doesn't mean we should tell our kids to go out and do bad things. We should guide and advise them to the best of our parental abilities. The problem I want to address is when our spectrum kids start to punish themselves for those mistakes. I know I was angry with myself as a child. I didn't know why I kept "screwing up" and began to take a self punishing attitude. Today I have a better understanding and I try to use that with my son. Even so, I still see the possibility of self anger in him. So what can I do to help him understand that we all make bad decisions?

I'll put myself at his level. I remember bad decisions I made and what happened. I can tell him about my experiences so he knows that Dad was a kid once too. I'll be sure to let him know that, today, I'm not proud of those decisions but I sure won't mess them up again. Allow me to give you two examples.

Revenge: I was picked on mercilessly in school and it started in elementary. I was in 6th grade and one of my tormentors was coming at me with a snowball. He intended to shove it in my face, or so he said. He didn't see my friend, Big Jim, coming up from behind him. Jim gave him a bearhug that made him drop that snowball and I did something that surprised them both. I balled up my fist tight in my glove and threw my first right hook ever. Jim was so shocked he let go and that boy hit the ground. I got into a lot of trouble and the Principal asked if I was a bully too. My explanation fell on deaf ears, but I wasn't suspended. All the same, what I did was wrong. I'm not happy about the fact that I did it and I prefer not to get into fights. I'll still defend myself, but I'm not up for revenge. I'll tell my son that hitting didn't solve anything and was a very poor choice on my part.

Competition flaw: Spring of that same year found me walking to school with friends. For some reason we were getting into who could jump the farthest or run the fastest. I picked up a rock and stated I could throw it further than any of them. Naturally they didn't believe me. I said I could throw it clear over a nearby house into the street on the other side. And I went for it before anyone could say anything. I had just as much trouble with my impulses as my son sometimes has with his. The rock cleared the privacy fence and vanished from sight. Even though we couldn't see where it went, the crash of shattering glass was unmistakeable. I was in big trouble. Naturally I ran, and even tried to lie my way out of it. No dice on that and it made the situation much worse. I got a beating, extra chores, and a long grounding. Dad had to pay for the window and I had to write a letter of apology. One bad choice can lead to enough damage without trying to compound it with more bad choices.  Now, if I make a mess I own up to it. I'm the one who should clean up and pay the damage.

Bad choices, we all make them and certainly made them in childhood. We all went through something or other that we aren't proud of today. We survived and hopefully learned a lesson, tough or not. And we all want to be our kids heroes. We want to be that larger than life power for them. But, sometimes, I think it's okay to share our pitfalls with them so they can see it's not so different and not the end of the world. It's a good example for the truth that we must learn from our bad decisions and need not punish ourselves forever on them.

DSM V: A real look

Lately the internet is a buzz with all sorts of chaos about the proposals for the new DSM (V) set for 2013. Petitions are flying, people are screaming and panicking...... STOP. Please stop. And please read this through so I can help you better understand. Your benefits, diagnosis, treatments, supports and what ever else are not being taken away. You are not going to lose your identity or anything else. Lets walk through it, shall we?

Primary complaint is that they are removing Asperger's and Rhett's syndrome from diagnosis in the DSM V. But hold on, that already happened. Yes, it already happened. DSM IV lists the new compound definition as Autistic Disorder. Read it HERE. Click on the tab that says DSM IV and read it.

What does this mean? It means that you either have autism or you don't, period. If you were diagnosed with Asperger's, then you have autism. If you were diagnosed with Rhett's, you have autism. It is not intended to take anyone's diagnosis away. It doesn't change your diagnosis except for the sake of a word.

Why did they do this? The biggest reason is that autism is already really hard to tie down in a category like when they had five forms listed before. It was hard to diagnose and still is. Having all the varied categories actually created more confusion than they were worth. Consider this:

Right now there are still several states where insurance will not cover treatments for "Asperger's" but they will for "Autism". Think about it. The new definition in the DSM means you are actually more likely to get the treatments and support you need because of insurance companies needs for specific terminologies.

Here is a quote from that same link under the tab of "rationale":

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

Be sure to read the tab for the DSM V. You will notice that nowhere does it say that you are not autistic if you were previously diagnosed under one of the five previous forms of autism. All that is happening is a change of terminology, nothing else. 

Asperger's and Rhett's have not ceased to exist, they are simply consider as "Autism". That is all. I hope that people can calm themselves soon and see this before they cause themselves a lot of unnecessary stress. 

Learning auto immune diseases

This new journey I've been on has given me a lot of reason to research and learn. I have gained a whole new insight to auto-immune diseases and what they do.

An auto-immune disease is a condition where your immune system starts to attack your organs or nervous system in various ways. Like with Autism, there is a wide spectrum of these conditions and they can be very hard to pin down and diagnose. This causes a lot of stress between doctors and patients. Some patients complain that doctors think it's all imagination.

Thanks to two MRI's we know this isn't my imagination, but that's the only comfort we have. Blood tests and a lumbar puncture haven't proven helpful. My research has shown me that it can take years for them to show up there depending on which one I'm dealing with.

I recently learned that some people with auto-immune disorders have to watch out for the common cold. I had thought this was only a problem for immune-suppressed conditions, but I've learned differently.

First, when your immune system is attacking all your organs, it compromises itself and ability to handle real threats. Now, this isn't a problem for me in that way. Instead I learned something else. A cold can still take me out.

I have a very strong and over-reacting immune system. Imagine someone driving a nail with a wrecking ball. Sure, nail goes but so does the building. That's my immune system. Imagine how much energy that drains out of you. Recently our household was down with the flu. Both wife and child had their upchuck moments but not me.  I barely have a cough, but I lost all energy and couldn't get anything done. I was down for a whole day.

So, having a super strong immune system can work against you. I'm still trying to learn what all I can do to keep myself going. Looks like more trial and error.