Who are these people?

The main characters:

Me, Tasia, the mom

Nick, the kid

Karla, the mentor

The settings:

Mom’s house, Dad’s house, Karla’s farm, and wherever there are reptiles

The subject:

Nick’s Life

The plot:

Nick is a 14-year-old autistic kid. (Yes, I called him an autistic kid, not a kid with autism. This guy has a good explanation of why.) Until last year, he was locked within a tangle of constant anxiety, raging at the world, and so down on himself that more than once he wished he were dead. Most of his counseling sessions were actually sessions for his dad and me, where we took lessons on autism and how to parent Nick because he could not spend more than a few minutes per month in her office without crashing.

One hard day, Nick complained that if he had to see a counselor, he wanted one who was autistic like him. I told him that such a person may not exist, considering that counselors spend so much time talking about feelings and other abstract concepts, and asked him if he would want to be a counselor when he grew up. He shook his head and then said “oh…” as it dawned on him that the people most “qualified” to understand him were also the most different from him.

Enter Karla, a recently diagnosed autistic adult. (No, she doesn’t mind if I call her that. See above.) Our counselor hooked us up with her as a mentor for Nick, literally within days of him asking for an autistic counselor. And Karla turned out to be not just an amazing mentor but a self-advocate who has turned her late-life diagnosis into a determination to change the way parents and experts see autism and how they work with ASD kids.

Karla is both severely affected by ASD and utterly brilliant, and she puts those together to explain the autistic perspective in a way that has already changed the minds of dozens of local professionals (including our counselor) and influenced the thinking of some of the biggest names in ASD teaching materials. Her successful career in high-tech inspires Nick and many other ASD kids to imagine the possibilities instead of fearing the future.

Within weeks of meeting Karla, Nick’s whole outlook changed and he became proud of who he is. Karla helped me and his dad recognize his strengths and map out a course for him that aims for college instead of a modified diploma, a career instead of SSI, and advocacy instead of conformity and burnout. (Aims, mind you. Nothing is guaranteed, and his path certainly won’t be conventional, but now we all have hopes we didn’t have before.) That’s just the introduction. Stay with me for many chapters to come as I catch you up on everything we’ve been through together and keep you updated as the action continues to unfold. Thanks for reading our story.

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12 comments on “Who are these people?

  1. I think we Moms also need mentors….as the mom of a 4 1/2 year old autistic little guy, I can already tell that following your blog will help me a great deal. I identified deeply with your “Acceptance” post and was also inspired by it temendously. There are so many things I would love to pick your brain about, but I’m sure since starting this blog you have a lot of parents already trying to do this same thing? If you are willing to correspond with me, I would be forever grateful!

  2. Hi Tasia,
    I am learning a tremendous amount from your blogs and see so much of myself in how you describe the way you used to be. I too have a lot of anxiety and would love to better understand it and how I can take control of it…..would you mind sharing some of the resources you used (ie. books, etc.)?
    Also, would you mind sharing a few specific examples of behaviours and the corresponding consequences that you use? I am just wondering how many of the little things need to be β€œmanaged” with this type of discipline? For example, if my son refuses to get dressed, what would be an appropriate consequence? Do you literally write all these problem behaviours and their consequences down somewhere (ie. in a notebook, on a wall, etc.)?
    Eagerly looking forward to your reply! 
    Kerry

    • OK so first the caveat that I am not an expert of any kind; I’m just a mom writing about my own experiences. So take whatever works for you and leave the rest.

      I have a simple set of house rules that we all have to follow, though as the adult I reserve the right to add new rules when necessary. Rules include “no violence or threats of violence” and “do not enter other people’s rooms without their permission.” Keep in mind my kids are 10, 12 and 14.

      For basic infractions, like calling someone a stupid moron or following your sister into her room when she has told you to stay out, it’s one job from the Job Jar per infraction, and no privileges until the jobs are done. Arguing about the consequences gets additional jobs added each time. There’s no emotion in this process, no horror at what they have done, no asking them why, no commentary. Black-and-white, factual, you did this, now you must do that. When they have been given a job, their only options are to do it or go to their room. Being in the common areas of the house is a privilege, so they have to stay in their room until they are ready to not argue and do their jobs.

      The other key for Nick in this method is that I do NOT talk to him about it after the jobs are done. it’s just over. If he wants to talk about it once he is calm, we can do that… as long as he stays calm.

      When things escalate to the point where I have piled on 5 jobs and the child still isn’t complying, they lose a privilege. For my 10yo this can mean losing storytime that night; Nick might lose his Kindle for a day or more depending on how stubborn he is. πŸ˜‰ Usually if the situation has gotten this bad, it becomes all about moving Nick to his room so he can thrash around and yell in there, where he is safe and the rest of us are spared, until he calms down.

      Nick really prefers to hang out with the rest of the family, but he also really needs alone time to recharge and regulate his emotions. He just doesn’t always know when to take himself away, so rule #1 on my list is that when mom tells you to go to your room, you go. The great news is that he really is learning to recognize a storm brewing and go away until it has passed. He doesn’t always manage it on his own but each time he does, I celebrate. πŸ™‚

      When an infraction has affected someone else (e.g. throwing something that hits and breaks someone else’s something) there will be additional consequences around reparation (replacing the broken something, or paying for it).

      I’ve found that there are two main categories of behavior problems: when they won’t do something I want them to do, and when they do something I don’t want them to do. My house rules are mainly about the latter. For the former, that’s where strict routines come in.

      For instance, I want Nick to shower every day. Giving him a consequence for not showering would not get me what I want. But because he is a creature of routine, if it’s just part of his daily activities, it gets done. So I have daily routines posted, and we negotiate them together, revising as our needs change. (When he was younger I did not negotiate them; he has earned that privilege with maturity.)

      You asked about your child refusing to get dressed. This would be a “routine” situation and not so much a consequence situation, especially at your son’s age. I actually remember Nick being 4 and refusing to get dressed. πŸ™‚ Frankly, this may be one of those things that just doesn’t matter. I’m pretty sure we took Nick to school in his pajamas a few times. Nowadays he sleeps in his regular clothes, so getting dressed is never an issue. For that matter, my 10yo NT son does the same thing. I’ve learned to really think hard about what is essential and to fight only those battles.

      I’ll come back to the anxiety part of your comment later. πŸ™‚

  3. So glad to have discovered your blog today! Thank you for sharing many helpful stories and valuable insight! I will be visiting often, and Karla’s page too!

  4. I just found your blog today via tumblr. I think you’re doing great at parenting your teen. I just wanted to say that hopefully as autism becomes more accepted there will be more autistic psychologists. I’m hoping to become one because I feel that my insight into the spectrum and my intense need to make sure others are being treated fairly will be helpful for me to work with others that are autistic – adults and children. Anyway, this might sound weird – but if I already had my degree and was in your area it would be a lovely idea to work with your son.

  5. I’d just like to mention that I’m an autistic person in training to become a psychologist, and I think I’d make a good counselor. Not everyone with a particular diagnosis is the same. (I also know of a dyslexic author, for example.)
    In my case, although I have trouble with making friends, recognizing people and keeping track of a complex social network, one of my strengths is the ability to know exactly what to say to someone in distress – mainly because I’ve read personal accounts by people who’ve gone through the same thing and made mental notes of what helped and didn’t help for them.

Talk to me.

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