Tuesday, December 18, 2012

How to Help Kids with Asperger Syndrome

People have asked me what needs to be done to help kids with Asperger Syndrome.  One positive thing that we can do is to donate to organizations that help autistic kids.  The Purple Cow Farm in Wichita, Kansas, has done wonders for Robby, but it needs your help to continue its excellent work.  Please consider giving a monetary gift to this wonderful organization.  The PCF is looking for corporate sponsors for its upcoming Texas Hold'Em Poker Tournament.  If your business can sponsor or would be willing to post a flyer for this annual fundraiser, please let me know.  We need to get the word out that there is help available for kids like Robby.

The website is a bit out of date, but they are still taking donations through PayPal.

The Face of Mental Illness

This is a message from my husband, Scott Walker.

I promised myself I wasn't going to weigh in on the shooting, but I can't help myself. This kid, a kid with Aspergers, similar to my own son committed an evil act...he was not evil, he was sick. Throwing money at the mental health problem will not change that, neither will better gun control. When I was in 8th grade, I had a teacher confide in my parents that their son needed some help. Had they taken that advice, maybe I would have avoided cutting myself, attempting suicide, been able to keep a job, not been mentally abusive to my wife and children...had a completely different life. Do you know why they didn't get me help? Because of the stigma of mental illness. They refused to believe that their perfect son could have a broken brain. I love my parents and I don't blame them...I blame a culture that treats the mentally ill as pariahs. The same stigma kept me from getting my own son help until the 6th grade. For that I am ashamed, and glad that I have a wife that can recognize illness when she sees it. (She saved my ass as well, it just took a lot longer) As a culture we need to remove this stigma so more parents, siblings and individuals will get the help they need. I'm lucky, I got out alive. Many won't unless something is done to initiate change. Thank you.

That Could Have Been My Son

The events of last Friday's Newtown school shooting are a parent's worst nightmare, but for those of us who are parents of boys with Asperger Syndrome, the nightmare gets worse. My son, Robby, identifies more with the gunman, Adam Lanza, than he does those frightened children or their parents. Robby understands the pain of not belonging but not knowing what to do to gain acceptance by his peers. He understands the isolation, fear and awkwardness of not being able to connect with another human being on an emotional level. He knows what it's like being the weird, annoying kid in school - the one everybody talks about but no one talks to. He knows what it's like to be bullied and made fun of. He knows what it's like to have to switch schools because he could no longer endure being singled out as the "difficult kid." These experiences have left Robby full of rage, anxiety and loneliness. Every 14-year-old kid believes at one time or another that no one understands them. For Robby, this is the truth almost all of the time. There are a handful of people who really "get" Robby and who are able to reach him.

Scott and I don't own firearms. When our kids were small, we didn't allow them to play with guns, watch violent shows or play violent video games. We still try to be careful about the violent content of what our kids are allowed to watch or play. Still, Robby, when he becomes frustrated or angry, is subject to violent outbursts and has been known to hurt both himself and family members, especially me. Anything can become a weapon. I will admit that Robby comes by it naturally, as both of his parents possess fiery tempers; however, Robby seems to lack the ability to calm down easily and at times it is impossible to reason with him. Scott and I have worked hard to get him help, but help is expensive and time-consuming. Good help is hard to find. There are too many people in the psychiatric profession who know nothing of the management and care of the Asperger patient, but they won't tell you that. There's a lot of trial and error involved, which is, again, time-consuming and expensive. There are virtually no psych specialists in Asperger Syndrome and there needs to be. Most people who say they specialize in Asperger Syndrome are snake oil salesmen, trying to make a buck off desperate parents. And you have to understand, the small skirmishes that a parent has with their child regarding chores, homework, clothes or going to the doctor/therapist become huge battles with kids like Robby, often ending in meltdowns or violence. For Scott and I, it is emotionally exhausting and we have to pick our battles carefully. There are lots of things that we would like to happen with Robby - getting him to clean his room took months - but we just don't have the time or the energy to pursue them.

The Newtown Massacre has sparked much debate over gun control and mental health issues, which are valid and definitely deserve our attention. I believe that there is no easy answer to either issue. I don't and will never own a gun, but I can imagine the release that comes with firing a weapon, especially when I'm feeling particularly frustrated, as Nancy Lanza must have felt many times. It seems obvious that more money needs to be spent on insuring access to mental health treatment and awareness. Eliminating the stigma of mental illness is key. But what do you do when someone obviously has access to mental health treatment but is either unaware that they need it or outright refuses it? This is a huge problem that cannot be solved by simply throwing money at the problem.

Nancy Lanza and her sons have been vilified in the media and on social networking sites. I read that Ms. Lanza didn't speak much about her relationship with her son, Adam, and that she was a kind and generous person. Some are asking why she would remain silent and passive while her son obviously had serious issues and I have this to say: Until you've walked a mile in her shoes, do not pass judgment.  Autism and Asperger Syndrome have only recently come into the forefront in the mainstream media. Even with widespread autism awareness campaigns, it is still difficult to find adequate and proper care for children with Autism Spectrum Disorder, an umbrella term of which Asperger Syndrome is a part. Many parents hesitate to talk about their experiences parenting their autistic child openly because they fear that they will be judged poor parents or because they feel that no one else could possibly be experiencing the same things they are.  And to a certain extent, they are correct. A friend of mine who works with autistic kids has a saying: once you've met a person with autism, you've met a person with autism. Autistic persons can be vastly different, with differing levels of functioning and different triggers and thresholds. What might incite a meltdown in one might comfort another. My experience with my autistic son is completely different than my niece's experience with her autistic son and the boys are cousins and only a couple of years apart in age. Strategies that work for me with Robby might completely backfire for someone else who has a 14-year-old son with the identical condition. Some are passive; some have problems with violence. Parents of autistic kids sometimes have a hard time finding childcare so they can get the support they need. Other parents find their experiences so vastly different from those of other parents that they don't identify with them. Still, other parents are so busy just trying to get through each day, they are completely unaware that anything exists to help them. Although my experience has been less than easy, I consider myself lucky - Robby is much easier to handle than some kids with Asperger Syndrome. Still, when I look back on the events of last Friday and I think about the gunman, I tell myself, "THAT COULD HAVE BEEN MY SON."