Sunday, January 27, 2013

Love, Empathy, Charity, Annoyance: The Whole Range of Emotions

We are consistently told that our children lack the ability to understand emotions. We as parents of autistic children, or if we are autistic ourselves, know that that is pure bunk. Below are a few of my posts on different emotions and how we have handled the situations over the years. It's not that autistics lack emotions, by any means, the reality is that they simply process emotions differently, sometimes with even more depth of feeling than any neurotypical could understand.

Love and Autism
Navigating the Love-Hate Relationship
Empathy
Autism and Empathy
K is for Kindness (Empathy)
Practicality: Preparing for the Future
Lying
If I am Only for Myself What am I
Inanity, Irony, Sarcasm, Yep They Get Funny
This Time It's Your Aspie's Fault
Autism-Attachments-Teddy Bears
Autism and Animals
Dealing With Death-Aspie Style
On Death and Dying
Empathy and My Son with Aspergers
When Obnoxiousness Reigns Supreme



Elise


Tuesday, January 22, 2013

More "Recovery" Crap Rears It's Ugly Head

This time its the Wall Street Journal. I left a similar comment to the one I left in the New York Times.

I am the parent of two youngmen with aspergers. My oldest was in fact correctly dxed with PDD-NOS at 5. We were told that he would probably never have anything equaling a typical life.Through therapy, meds, support and our refusal to allow psychiatric professionals like Dr. Volkmar to tell me my oldest son was incapable of "XYZ," he has persevered and is now scheduled to graduate from college in the spring. He is also in the process of applying to graduate school. He was redxed as aspergers by middle school.

Autistics are now also learning how to be independent and self-sufficient happy adults. Contrary to Dr. Volkmar's assertion simply because they do not meet his criteria doesn't mean they are not happy nor independent. Additionally if the individual in question still has deficits, then he needs social skills support. It does not make him less of a person nor less capable in his life. By the way I know many neurotypical people who are quite set in their ways and would like a relationship but don't seem to be able to find anyone to share their lives with too. Meanwhile, most of the autism self-advocates I have come into contact with are quite happy and fulfilled human beings engaged in the same day-to-day activities as their peers.Something apparently the Dr. Volkmar's of the world seem to resent.

Would I call what happened to my son "recovered?" No I would not. What he did was learn how to compensate for how his autistic brain sees the world and how to help himself in our neurotypical society. Simply because you no longer exhibit certain characteristics doesn't mean you are no longer autistic. No one can rewire the autistic brain. The "trick" is how to help autistics learn to navigate the world as it is so that they have the same right to life, liberty and happiness that the rest of society enjoys. That is it in a nutshell. I wish people and professionals would stop calling it something it is not and trying to turn my autistic-brained sons into people they are not. Simple respect for who my sons are, while celebrating their real world accomplishments, would really be nice for a change.


I truly wish the professionals would deal with the reality. You cannot cure autism. The brain is the brain. Trying to rewire the human brain is impossible right now anyway. The truth of the matter is that it isn't about helping our children it is about aggrandizing themselves. Professionals no longer have anything to talk about. Therapies, meds and successful support systems have basically been established, so the chattering classes come up with this nonsense. They need some new mishegas (nonsense) to give their life purpose.

Instead of calling it "recovered" maybe they need to call it "socially functionally" or "socially independent." And yes I can see some self-advocates not liking that terminology. You can come up with your own vernacular of what you would call it besides "recovered."

When someone is in control (meaning no outward characteristics) of their depression, or bipolar episodes, or OCD, it doesn't mean they no longer are effected by the way their brain is wired. They simply have learned through support, meds and therapy how to control their issues so that they can function and probably lead happy lives. The same should be for autism.

Truth is for most people in society they hear the word "autism" they hear "living nightmare." So, I don't know if it is society's need to find a "cure" for their nightmares, that everyone and their brother, needs to believe in "recovery." To me its the same when television or movies need to make the disabled someone with magical abilities or that there has to be a positive reason that a person is autistic. Society needs to believe that on the other-side of disability is a true calling or meaning in "suffering." Someone needs to tell them, that there is no meaning in suffering and that sometimes life is horribly unfair. (One look at a oncology ward would tell you that. Also recent pictures of Syrian refugee camps could also prove my point.)

But hey I suppose that is the Jew in me. We don't believe that suffering leads to anything but pain and hurt. We don't believe that there is anything positive in suffering. Personally I think  Job was an idiot. So I don't need to believe there is a reason for disability and I do believe that at times, God is a real asshole.

No I don't need to believe in the term "recovery," but on the other hand I do know that my boys got better. That they have learned to function and to access their autistic brains to their benefit. I have seen them grow, develop, mature and understand the world around them. Are they still behind their peers in many ways? Sure, but in other ways they are way ahead of their peers too. No one ever seems to talk about that part of our reality. Will they one day be happily ensconced in an independent life? That is the goal. We will have to see, and as the cliche says, only time will tell. But for right now, we keep our eye on the ball. Trying to make each moment count and see what tomorrow brings.

But remember what I have always said...stop trying to project what your child's life will be. Take each moment, each second if necessary, and deal with the issue of the moment. Then one day, maybe ten years from now, you will look back and realize, just how far your child has come. Then some idiot doctor will tell you that your child simply because they can play with friends or talk on the phone is no longer autistic and the configuration of their brain doesn't matter.....OY

Elise

Friday, January 18, 2013

I Wish The Word "Recovered" Would Disappear

The New York Times, has printed an article entitled "Some with Autism Diagnosis can Overcome Symptoms, Study Finds. " The article goes on to discuss a study of 34 autistic individuals who seem to no longer have autism-like characteristics and some in fact have lost their diagnosis altogether. Not for nothing, this article really annoyed me. I think the irony here is that at one time I would call what happened with CM1 "recovery" too, for lack of a better word. But as I have grown, and my children have grown, I understand that while CM1's outward symptoms and actions no longer would elicit a diagnosis of PDD, (and maybe under the new DSM-5 even aspergers, depending on the particular moment of any particular day) his entire being is that of an autistic individual. My sons' autistic brains are their brains and no science, no therapy, no psychiatric professional can change that. No one has the right to take from them who they truly happen to be.

And guess who also makes an appearance in the article, but the autism world's own psychiatric Dr. Evil, Volkmar. He in one sentence decides that those who were once autistic but now are living independently, will only develop depression and be suicidal. I suppose he has never met any autism self-advocates in his lifetime. Someone really should introduce this so-called professional to the people of ASAN AND GRASP.

I left the following comment for the reviewers. Not sure the NYT will print it so I post it here.

I am the parent of two youngmen with aspergers. My oldest was in fact correctly dxed with PDD-NOS at 5. We were told that he would probably never have anything equaling a typical life.Through therapy, meds, support and our refusal to allow  psychiatric professionals like Dr. Volkmar to tell me my oldest son was incapable of "XYZ," he has persevered and is now scheduled to graduate from college in the spring. He was redxed as aspergers by middle school.

Autistics are now also learning how to be independent and self-sufficient happy adults. Contrary to Dr. Volkmar's assertion they are not all suicidal and depressed. Most of the autism self-advocates I have come into contact with are quite happy and fulfilled human beings engaged in the same day-to-day activities as their peers.Something apparently the Dr. Volkmar's of the world seem to resent.

Would I call what happened to my son "recovered?" No I would not. What he did was learn how to compensate for how his autistic brain sees the world and how to help himself in our neurotypical society. No one can rewire the autistic brain. The "trick" is how to help autistics learn to navigate the world as it is so that they have the same right to life, liberty and happiness that the rest of society enjoys. That is it in a nutshell. I wish people and professionals would stop calling it something it is not and trying to turn my autistic-brained sons into people they are not. Simple respect for who my sons are would really be nice. 




DSM Conundrum, Time to get a Grip
Would You Use the Word "Recovery"
U is for Dispelling Unreality


Elise

UPDATE:  Apparently the NYT  did post my comment HERE 


Thursday, January 17, 2013

Practicality: Transitioning into a New Semester

Well here we are at the tailend of winterbreak and the boys are getting ready to go back to school.

Hopefully for CM1 this will be his last semester of college. We went over all his credits and requirements. Fingerscrossed that we didn't miss something. I know years ago the dean told us he had reached his liberal art credits and I know he reached his major and minor credits, so its just a matter of review by the graduating committee. But I never take anything for granted, especially since I was the one who messed up his credit count in the first place.Don't ask...I apparently can't count and can't read college curriculum catalogues.

Meanwhile, CM1 is registered for only two classes, which is all he needs to graduate. Since he has so much free time he will continue doing volunteer work or get a job on campus. I told him two classes will not keep him busy enough and it was unhealthy to spend his days hanging out with mom at home. He seems pretty resigned to it and actually didn't balk. Good sign.

CM2 on the other hand is going to be in for a rude awakening this coming semester. He is taking some really work intensive courses and studying is not his forte. Yes he would prefer to be on his chatboards, playing video games or  twitter (yeah...oh crap). Of course, none of us would prefer to work if we didn't have to, but becoming an adult is not always easy nor fun. Time for CM2 to rise to the occasion.

So we have had discussions about how he needs to handle this semester and have come up with some ideas on how he can help himself:

1. Scheduling. Everything is about scheduling.  Having open-ended avenues has always been an issue for CM2, so we make sure that he schedules his time. Hubby even found some apps for the iPhone/iPad/Mac that helps you schedule your homework. I think we are going to have to be strict with him, like when he was a junior in highschool. Write your schedule when you get home. Whether he can work in breaks remains to be seen depending on the real amount of homework he will have to do...reading, papers, test prep etc. iPlanner  ihomework

2. Sleep. Making sure that CM2 gets the right amount of sleep is important. As any adolescent he likes to stay up really late and sleep to almost noon. That has basically been his modus operandi these past weeks. Not anymore. But don't lose sleep on his account under any circumstances. His earliest class is 10 AM so its not like he will be having to awake at the crack of dawn either.

3. Meds. Making sure the meds are working just right is always a challenge. We revamped his thyroid pill over break and needs to go for bloodwork to see how his body is adjusting. He says he is not tired and can focus clearly, but we won't really know until after school starts.

4. Pacing. One of CM2's biggest issues is his work/study-pacing when it comes to school He usually starts off like gangbusters, fades terribly mid-semester and then brings it home at the end. Last semester however, something happened during finals and he did not do as well as he usually does. Oh he did fine, kept his scholarship (thankfully), but he was very borderline and not happy with himself at all. We try to use the Aesop fable the tortoise and the hare for illustration...be the tortoise I tell him....channel the tortoise. Trying to get him used to the idea that "slow and steady wins the race" is going to be the hard part of the upcoming semester. Luckily he is taking some rather interesting classes. If he can get drawn into the classes it will be alot easier for him to do the work and study the way it needs to be done.

5. Tutors. One of the classes he has to take is calculus. Now that is a different story altogether. As I have mentioned, I have a child with a learning disability not otherwise specified (probably math related) that wants to study computer science. So the idea is to help him figure out how to access his brain in order to be successful. So far we have come up with an on-campus tutor, tutor.com  and the fact that he is going to have to work really really hard. First thing is to have last semesters professor review the final and show CM2 what he missed.

So onward and upward as the saying goes, into the wild blue yonder, but not totally into the unknown. An interesting few months to come to say the least.


Elise

Tuesday, January 15, 2013

I Don't Usually Do This, But What the Hell

Now I don't usually do this (posting random stuff from other people's blogs)....but since I have had a glass of sparkling wine I figured what the hell. I love The Blogess and this pic was up on her website today......what do you see?

 



Well the boys got it right away. But you have to read her post.  (here) I laughed so hard I cackled, which only added to CM2's perspective that I am the wicked witch of the west, but without the green skin of course.


Elise

Friday, January 11, 2013

Dealing with the World's Propensity to Hate

One of the huge issues that really gets my dander up, is the absolute no holds barred level of hatred found on the internet. I understand that plenty of it may simply be put on in some respects..trolls thinking they are funny. However, after spending some time perusing the comment sections of some major national and international newspapers and webzines, its enough to make you think that almost everyone needs eons with a good therapist. The reality is that the internet is an open forum for those with exponentially bad karma. Now the unbelievably sad reality is that, more and more you are seeing that people are actually attaching their names to their hatred. The haters don't even try to hide their identities anymore. These individuals are truly proud of how they think and believe others should applaud them for it.

It's not just the age-old hatreds of antisemitism and racism that I am talking about. It is the absolute unadulterated way that pundits and politicos attack each other. The nasty name-calling, the ignorant innuendos and the depreciation of another person's humanity. Listen if you are arguing politics, alot of people are not going to agree with you. It doesn't make them racists, antisemites, homophobes or a misogynists. Now many who you do disagree with are evil, but the majority of people are simply descent people with an alternative view of how they look at the world. I have always told the boys that if you cannot argue with out calling names, you don't have a platform to stand on and your argument and policies are wrong. By the way, name-calling used to silence debate is also a form of bigotry, don't let anyone ever tell you any different.

Honestly, the name-calling is why I spend plenty of time on twitter unfollowing people withwhom I may have similar political leanings. I have no respect for anyone who has to resort to name-calling to get their point across and have no interest in what they have to say. It is not a sign of intelligence to act like a middle school bully no matter what side of the aisle you sit on; or what house you happen to be elected to; or what piece of land you think belongs to you; or what economic theory you believe works; or what political system you think is best.

The issue I have is how to help the boys deal with the world's nastiness. It is one thing to deal with the world when the world doesn't understand autism. It is quite another thing to deal with the world's  propensity to hate each other. I am not certain truly what to do, except teach them right from wrong, ethics and morals, good from bad, and the meaning of duty and honor. Sadly I am not so certain how many in today's world are actually taught these concepts and then once educated  are actually held to a descent standard.

Below are some past posts on the issue....You know how the world tells you that with little children you have little problems but with big children you have big problems. Guess what, its true. But you can't wait until they are big to start to tackle some of the issues that do come around when they are grown. Some problems are foreseeable and you have to work on them from birth,  otherwise your children will learn the wrong lessons....



A Rude Awakening- Racism, The Danger of a Single Story (love the video in this post)
Teaching About Prejudice
Dealing with the Oldest of Hatreds
The Power of Words
The Hebrew Mamita (terrific slam poetry reposted below)
Defending Your Children
Misogyny, Autism Ignorance and Society in General
Social Justice, Autism, Society and Acceptance (A Little Politics Thrown In)
A Rant
Simon Cowell, A Culture of Rude and Your Autistic Child
They are Hunting Autistics and Jews
Practicality: Teaching your Child to Think for Themselves
Ballagan and Bullying
Political Correctness, Autism and Bullshit in General




Elise

Wednesday, January 9, 2013

Monday, January 7, 2013

Interrupted Vaca...

We were supposed to be on vacation in Florida this week visiting my mother. But she called the morning that we were leaving and told us she had the flu and not to come. Thank heaven we weren't winging our way through the friendly skies at that moment. The last thing we needed was to walk into a house with flu and my mother knew it. Also how could she entertain or spend time with us if she felt awful.  Ironic part in all of this is that  I actually spent the weekend in bed, flued-in myself. Could there have been any crappier vacation than if we had actually gone? Hubby feels awful today. No, not mom's fault, unless somehow she could have transmitted the flu virus through facetime or telephone.

Meanwhile how did the boys deal with this change in schedule? Actually they both did quite well. CM1 even got on facetime and chatted with his grandmother asking her how she was and telling her he loved her. That is his new thing. Every time he talks to her he tells her that he loves her. I know he feels the passing of his grandfather profoundly, wears grandpas watch every day, even sleeps with it on. Honestly though, he didn't mind not going. Truth be told he wasn't so happy about flying. He watches too much "Seconds From Disaster" and it has made him some what of a worry-wart on the subject of air travel. (Yeah something new to deal with.Why not?) Having Sheldon channeling train travel doesn't help much with the airtravel issues either. CM1 and hubby actually looked into taking the ACELA down to Florida from where we live. Not only is it ridiculously expensive, but can you imagine 24 hours on a  train.....oh nooooo, sorry not gonna happen.



Now CM2 was not so forgiving as his older brother about the change however. He was actually annoyed. He doesn't handle change as well as CM1. You can't change personnel on him. Heck its hard for him to deal with outgrowing his clothes. He gets upset when anything is thrown away. We are trying to teach him the difference between keepsakes and garbage at this point. (Trying to keep him off the show Hoarders. Yep another issue for another day. Yeah us!) At times, when his day does get interrupted or messed up however, he really does have a CM2 version of a meltdown. Now its not terribly bad anymore, but he gets really grumpy for awhile and you just need to stay out of his way and eventually he will come around.

In all truth I don't think either boys really had that much of a hard time moving on to the next thing to do. CM2 stayed by his computer...a little too much this vacation actually. Yes we were able to get him to go to the gym, work outside helping with the snow and do some chores in the house. But his attachment to his games, chatrooms (mostly discussing religious fanatics or fundies as they are called in his world) and now twitter too is quite the little obsession. (OK I know, who am I to talk about a social media obsession..)

Luckily, hubby is home for these few days and he has already taken the boys out to do some fun things. Last night they went go-cart racing. It was nice that even though CM1 doesn't have a drivers license, being over 21 he could still drive a cart. CM1 was stoked afterwards to say the least. CM2 and hubby ran errands to Homedepot and for ice cream. Plus the behavioralist is still coming and she took the boys out for their respective practice sessions. Also, I called up the volunteer center and told them we didn't go away afterall and the boys can come in this week to work. They were very pleased to say the least.

Truth of the matter is, that in times gone by a change in plans would have meant a huge stressor for the boys and it would have taken days to get them right again. They would obsess about the change and never really let it go. It would ruin the entire rest of their time off from school. NOT so anymore. With age and therapy and teaching them to deal with "curve balls" the boys have learned to handle the unexpected. Not perfectly of course. No one can expect perfection from another human being. But I think they got as close as they could this time. For them at least. 

So whenever you deal with a child not being able to handle changes in schedules remember, that eventually everything gets better. It simply takes time and alot of effort on your part. But in the end it does come together. In fact, if you have to cancel a vaca due to grandma's illness, the children will go right on with their world without skipping a beat (OK in the case of CM2 maybe a little hiccup)  and they may even worry about their grandma a little bit, tell her they love her and ask how she is feeling. You may even get a hug good morning too.

OK, I have to admit, CM1's new thing is to hug me good morning when he is happy (and he is happy when there is no school)  and especially when I make his favorite foods. Me like...what can I say.


Elise



Friday, January 4, 2013