I had an idea.

Parents ask me questions, which I don’t mind at all. Some call out of the blue and others during conversations while they have questions about choosing a weighted blanket. Some of them spark new blog posts, and the rest live with me.

So, I decided to start regular conference calls named Autism Community Conversations.

If you do take part, keep in mind that I do not have all the answers for your child. I know my inner experience and how I have dealt with the world around me, the good and the bad. How I have learned and developed over the years is important, I think, since all people grow and change over the years, so autistic people are no exception.

Mandi, my Community Outreach Coordinator, is the super social person at my company. A job where she is talking with people by phone and email all day is her idea of great fun. In the box below, you can sign up to receive notices of upcoming calls and summaries of what the group of us have discovered. (I see a lot of blog writing in my future.)

Mandi can answer questions about the conference calls or take questions in advance at 612-644-9352 or at Calls@CozyCalm.com.

Email Marketing You Can Trust

“Absolutely be yourself. We are all extraordinary, wonderful people.” It’s 1:00 a.m. as I am watching this video and my eyes area tearing up. I have worked so hard to get myself to where I am. I have a strong relationship, a business, three cats, two children, two step children, and believe me all of that is not easy when you have autism.

If you have autism, watch and/or listen to this video. If you don’t have autism, regardless of functioning level, don’t hold your autistic child, spouse, or family member back. They will metaphorically fall down and bruise their knees, but that is normal, quite normal. So, fall down and see how much higher you can go.

Has it been easy for me? No. Flat out, No. Am I stronger for it, better for it, feeling better about myself for it? Hell yeah!

I read a book a gazillion years ago about a person who became blind. At the blind school, the instructor said to the student that there was a sharp corner to watch out for in the main area. The student asked why they just didn’t pad it. The instructor replied that the world doesn’t cushion us from every possible hurt.

Showers--love 'em or hate 'em

A mother with a child who has SPD called the other day about a weighted blanket for her son.  She was explaining her son’s difficulty, and I told her I understand because I also have SPD.

She has so many questions then, and we talked for quite a while.  One of the topics that came up was showering; her son can’t stand it.

Nor can I.

It actually came up in Sensory Integration Therapy.  The OT was working with me to get over the extreme aversion to water.  I didn’t realize how much I reacted to it; it was upsetting actually, like I had to jerk my hand away from a fire.

She had me working up to it by having me run my hands through beans, then rice, then pliable stuff like Play-Doh, then shaving cream then water.

To this day, while I cook, I have to force myself to knead bread dough or squish hamburger to make meatballs.  Cleaning fish fillets is right up there too because it’s wet.  The family goes up to Canada every year fishing, and I’m the one who has a lot of experience filleting them.  C’est la vie.

I have to force myself to take a shower too.  It’s a necessary evil that I dread with a passion, but I relish in the feeling of being clean.  It’s a mental tug of war, but inevitably, the clean wins over the distaste of water.

Back to the conversation with this boy’s mother.  Here is what I told her from my experience:

• Get the bathroom warm with a heater before the shower because the clammy feeling of cold after getting out of the shower feels awful.
• Adjust the shower head so the streams of water coming out are “thicker” and have a more gentle feeling hitting the skin.  The thin, hard streams of water feel like pin pricks.
• Let him pick out his own shampoo, soap, and conditioner because the scent could repel or calm him.  I have a certain soap I have been using for two decades because the smell relaxes me.

Hi Eileen,
I found out about your blog through the article on CNN and had a question for you.  For years I have suspected my brother has Asperger Syndrome, but he has never been evaluated or diagnosed.  In addition, nobody has ever approached him about it.  He is highly functioning, has a family, kids, steady job…a good life, but has always struggled in relation to social situations, picking up on non-verbal social cues, etc.  I have often wondered if I should approach him and what his reaction might be.  How did you find out or search to learn more about Asperger Syndrome?  Do you think someone with Aspergers has the self awareness to be open to self discovery and if they want to learn more?  Are there any treatments you know of?

The last thing I want to do is push him away or make him feel different.

Thanks in advance for your insight, Mike

Mike,

It sounds like you love your brother, which is the best way to approach any person.

The first thing to note is that autism/Asperger’s Syndrome tends to run in families. When I was diagnosed the psychologist asked if there were people in my family who were like me. Take a look at your family and notice who has traits of autism even though they don’t have enough traits to be diagnosed.  That might be good for your brother to know.

The second thing to note is that as a brother, you are also his friend.  If he self diagnoses or gets a medical diagnosis, he will likely want to talk about it with someone, so offer to listen.  Maybe this Chinese proverb will help:  “A friend who truly knows you is always with you.” We all seek to be known deeply. This English proverb may also apply: “The best mirror is an old friend.”

In response to your question, “Do you think someone with Aspergers has the self awareness to be open to self discovery and if they want to learn more?” I say, “Yea!”  Self-knowledge is the most difficult endeavor a person can undertake. But with the diagnosis of autism many, if not most, people feel relieved to know that they are not weird, they are not alone, and they are a part of a huge, world-wide community.

How will he react?  I don’t know.  I can tell you that give him written information on it rather than talking the whole time. If he is indeed on the autism spectrum, he will likely read the information then go on the computer to learn more.  Some days later, tell him what parts of the information you found interesting or enlightening, and ask him what he thinks.  Then stop talking and listen.

Mike, you wrote, “The last thing I want to do is push him away or make him feel different.” With such social difficulties, he has known for a long time that he has felt different from other people; it’s like being in the world, but not a part of it. You mentioned that others in your family have not approached him about it, so keep in mind that he grew up in your family, so he may feel uncomfortable broaching personal topics.

Might he totally reject the idea?  When my therapist said I might have autism, I rejected it and changed the topic.  But I got curious.  In true autism fashion I hyper-focused on it reading everything I could find on it and spending countless days on autism/Asperger’s boards. I still didn’t quite believe it, but I felt compelled to know so after looking at the post-it on my desk for weeks with the doctor’s name and number, I called and the rest is, well,…my better future.

I am much closer with my family now.  Let me know how it goes with your brother. You can contact me privately at e@cozycalm.com