Parallel Play and Autism–at my Age?

by Eileen Parker on February 8, 2011

Photo by Arissa Thompson

Photo by Arissa Thompson

The kids in this photo are doing parallel play, which is a normal stage of development starting at two or three years old.  As they get older, they will be going into other stages of more interactive play.

Apparently, with my autism, I’m still a kid at heart.

Through my teen years, I saw no reason to interact.  Fortunately, I have a sister, so I was forced into it, and must admit, I liked it sometimes.

At one point in our childhood we lived beside a lake.  Normally, I would wade in the shallows watching and trying to catch minnows by myself.  My mother had a metal washtub outside, which we normally didn’t notice, but it was going to see its demise that day.

My sister, being the instigator she is, had an exciting idea!  We would use our pink sand pails to put water in the washtub and fill it with blood suckers (leeches).  This went on for hours.  What fun!

Mum yelled, “Lunchtime!”  Then it was nap time then play then have supper.  The blood suckers hadn’t entered my mind.

The next day, we heard suddenly heard a yell.  “You two get out here right now,” Mum said.  We walked to where she was standing, hands on hips.  She said, “You ruined my washtub!”

The washtub was in the hot sun, dry with blood suckers crusted to the sides and bottom.  Fascinating.

My sister looked up at me, and I felt something I had not before: a feeling of complicity.  We had gotten in trouble together–a feeling of togetherness.  Mum quickly interrupted that feeling by telling us to clean it.  The blood suckers weren’t so cute anymore.

I felt that feeling of complicity and togetherness the rest of my life even though I still primarily played by myself.

As an autistic adult, I feel a strong feeling of togetherness with my hubby.  I’m content and secure if he’s in the house or yard.  I don’t need to see or say anything to him for hours.  Yet, when he goes out of town, I feel horribly lonely.

Similarly, toddlers are happy when a parent is around even if they are not interacting, and they are scared if they can’t find their parent.

So, if you have a child or spouse with autism, you are interacting and being loved just by your presence.

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Autism and Eating Elephants Eeeew!

by Eileen Parker on January 31, 2011

Eating an Elephant

Eating an Elephant

I have noticed something in myself that I have noticed in other people with autism. I go into such detail that some things don’t get done.  I think through the whole thing. I gather more information than needed for the project.

I have been unlearning this for a few years.  As my mother said, “You don’t need an A++ when an A or even a B will make things happen.”

I’ll tell you a story.

Hubby has offered help by saying, “The only way to eat an elephant is one bite at a time.” Can you guess what I pictured?

I saw an elephant lying on its side in the yellow grass dead. Suddenly, the awful scene shifted. I was tearing at the the skin and bloody meat of its thigh with my teeth. Then intellect kicked in by thinking that for one person to eat an elephant would take months. The elephant would start to rot, and birds and insects would be picking at it.

I told hubby, “Why do people say such things? It’s disgusting.”

If you’re on the autism spectrum, you know how pictures can instantly pop in your head when someone uses a saying instead of a direct, factual sentence.  I told hubby what I saw, and he was surprised.  He explained the saying to me.

Instead of freezing up with the overwhelming workload of a project, break it into smaller projects that are a part of the overall project. Do each small project before moving on to the next one. His point was that a large project can’t be done as a whole all at once.

I suggested we change the elephant saying into “eating a turkey one bite at a time.” I picture a cooked turkey just out of the oven. I could smell the sage scent of stuffing, and the sweet tang of cranberry sauce cooking in the pot.  This makes sense to me.

If you cook or eat turkeys, you know a turkey is eaten in stages.

  1. Serve the turkey meat fresh out of the oven for the first meal.
  2. After supper, save the turkey juice and the carcass for boiling to make soup, and put some of the turkey in containers in the freezer.
  3. Make turkey soup and eat it for two days.
  4. Make hot or cold turkey sandwiches.
  5. Eat turkey and cranberries for a snack here and there.

That’s how projects are done–one phase of the turkey eating process at a time.

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My Recovery from Autism

by Eileen Parker on December 30, 2010

I am borrowing the term “recovery” from the mental health field, and believe that I have and still am recovering from autism.

I have a family member with Bipolar I Disorder, and her symptoms used to be severe.  Once she was diagnosed, the road to recovery showed itself.  We didn’t know what was around each bend in the road, but she braved it and worked hard on her recovery.

She and her doctor worked on finding the right medication balance.  Therapy helped her to understand the disorder and the signs and symptoms in herself.  Therapy helped her to deal with the difficult process of recovery and helped her to deal with the fallout from when she was seriously ill.

Bipolar isn’t a tumor that can be removed from the brain; it’s enmeshed with her whole brain.  So, she can’t be cured, but she can recover and create the full life she has made.

I’ll use the term “recover” for my autism.  I was a nonverbal child.  Growing up in this world was extremely difficult for me, but I didn’t know that talking about it could help.

Once I did start therapy, the therapist said I was intellectualizing my feelings, which for me is the norm.  Years later, I found a therapist who had other clients on the spectrum, so she understood and helped me use my intellect to understand and get past the pain of growing up.

I started to grow.  I started to learn in-depth about autism.  I learned that I am not alone, rather, I am a part of a huge community of autistic people, and I had never felt that I had belonged anywhere before.

Like bipolar, autism isn’t a tumor to remove, and many people don’t want it removed because is an inherent part of who they are.  It would be like doing surgery or taking pills to remove my personality.

A little embarrassing, but I was on social security for a lot of years because my functioning was so low.  I worked hard at raising my children, keeping them involved, and oddly enough, being very emotionally close with them.

They used to say and still do that I am not like the other moms because I listen and don’t freak out at every little thing and they can come to me about anything.

My kids and I are so emotionally connected and open.  Yes, I still put my foot down, have rules, and have boundaries as parents do, but that doesn’t mean forgoing closeness and laughter.

After all the rejection and abuse I have put up with in my life, my greatest recovery is that I’m starting to think that I am okay just the way I am.  I’ll slip into despair or embarrassment or cry because I’m not normal, but those episodes are getting further apart and much less severe.

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From the Autism Society, How To Tips for Holiday Season

by Eileen Parker on December 17, 2010

I have my own tips for dealing with Christmas because I have gone through it in different life stages, but this is good advice from the Autism Society.  I like these folks because at my Minnesota Chapter I have gone to their adult support group, and I really like it.  They’re into people on the spectrum, which is a darned good thing.

Twelve Tips for Helping People with Autism and Their Families Have a Happy Holiday

While many happily anticipate the coming holiday season, families of people on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken. Our hope is that by following these few helpful tips, families may lessen the stress of the holiday season and make it a more enjoyable experience for everyone involved. The following tips were developed with input from the Autism Society, the Indiana Resource Center for Autism, Easter Seals Crossroads, the Sonya Ansari Center for Autism at Logan and the Indiana Autism Leadership Network..

1. Preparation is crucial for many individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her. Preparation can occur in various ways by using a calendar and marking the dates of various holiday events, or by creating a social story that highlights what will happen at a given event.

2. Decorations around the house may be disruptive for some. It may be helpful to revisit pictures from previous holidays that show decorations in the house. If such a photo book does not exist, use this holiday season to create one. For some it may also be helpful to take them shopping with you for holiday decorations so that they are engaged in the process. Or involve them in the process of decorating the house. And once holiday decorations have been put up, you may need to create rules about those that can and cannot be touched. Be direct, specific and consistent.

3. If a person with autism has difficulty with change, you may want to gradually decorate the house. For example, on the first day, put up the Christmas tree, then on the next day, decorate the tree and so on. And again, engage them as much as possible in this process. It may be helpful to develop a visual schedule or calendar that shows what will be done on each day.

4. If a person with autism begins to obsess about a particular gift or item they want, it may be helpful to be specific and direct about the number of times they can mention the gift. One suggestion is to give them five chips. They are allowed to exchange one chip for five minutes of talking about the desired gift. Also, if you have no intention of purchasing a specific item, it serves no purpose to tell them that maybe they will get the gift. This will only lead to problems in the future. Always choose to be direct and specific about your intentions.

5. Teach them how to leave a situation and/or how to access support when an event becomes overwhelming. For example, if you are having visitors, have a space set aside for the child as his/her safe/calm space. The individual should be taught ahead of time that they should go to their space when feeling overwhelmed. This self-management tool will serve the individual into adulthood. For those who are not at that level of self-management, develop a signal or cue for them to show when they are getting anxious, and prompt them to use the space. For individuals with more significant challenges, practice using this space in a calm manner at various times prior to your guests’ arrival. Take them into the room and engage them in calming activities (e.g., play soft music, rub his/her back, turn down the lights, etc.). Then when you notice the individual becoming anxious, calmly remove him/her from the anxiety-provoking setting immediately and take him/her into the calming environment.

6. If you are traveling for the holidays, make sure you have their favorite foods or items available. Having familiar items readily available can help to calm stressful situations. Also, prepare them via social stories or other communication systems for any unexpected delays in travel. If you are flying for the first time, it may be helpful to bring the individual to the airport in advance and help him/her to become accustomed to airports and planes. Use social stories and pictures to rehearse what will happen when boarding and flying.

7. Know your loved one with autism and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help them find a quiet area in which to regroup. And there may be some situations that you simply avoid (e.g., crowded shopping malls the day after Thanksgiving).

8. Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the person with autism access to these photos at all times and also go through the photo album with him/her while talking briefly about each family member.

9. Practice opening gifts, taking turns and waiting for others, and giving gifts. Role play scenarios with your child in preparation for him/her getting a gift they do not want. Talk through this process to avoid embarrassing moments with family members. You might also choose to practice certain religious rituals. Work with a speech language pathologist to construct pages of vocabulary or topic boards that relate to the holidays and family traditions.

10. Prepare family members for strategies to use to minimize anxiety or behavioral incidents, and to enhance participation. Help them to understand if the person with autism prefers to be hugged or not, needs calm discussions or provide other suggestions that will facilitate a smoother holiday season.

11. If the person with autism is on special diet, make sure there is food available that he/she can eat. And even if they are not on a special diet, be cautious of the amount of sugar consumed. And try to maintain a sleep and meal routine.

12. Above all, know your loved one with autism. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears and those things that will make the season more enjoyable for them.

Don’t stress. Plan in advance. And most of all have a wonderful holiday season.

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I have missed you. With Autism, I don’t say much, but I’m glad you’re listening.

by Eileen Parker on October 28, 2010

I am so glad to talk with you again. Writing to you is a source of inspiration. And, I don’t know what works for you, but for me, writing to someone is therapy. Others may pick up the phone and call a friend, or likely visit with a friend in person.

In my autistic world, talking with people is a learned skill–learned by rote. My first step was to learn to talk to people, which I learned in baby steps, yes, to learn the skill and to gain the confidence as I went along.

Goodness, there are times when I talk incessantly about a topic of current fascination that I have researched extensively. (Don’t get me started!)  Talking about something is not the same as talking to someone. It’s a mental shift. I had to learn awareness of other peoples’ minds, and I learned the hard way.

My feelings would hurt when people would interrupt my diatribes or stop me, so I thought nobody cared to hear what I had to say. I took it as a personal rejection, so I spoke less. I didn’t have the social skills to carry on a two-way conversation, and it never occurred to me that other people would want that. The compulsion to chatter with people wasn’t in my mental makeup.

Do you know how your mind works? I didn’t/don’t. It took years before I realized that other peoples’ minds were different from mine. That awareness, that shift gave me the ability to talk to a person, not just about a concept, because I became aware that the other person was in there. It was a revelation at the time. It came about in university when I learned about theory of mind–fascinating.

I am still learning to talk about my private feelings and thoughts with my closest people. That brings us back to the whole concept of talking with a person, which is a confounding thing to learn. I’m working on it!

Thank you for listening, and I know you are because you are reading this.

Take care,
Eileen.

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Looking in as an Outsider with Autism

by Eileen Parker on September 20, 2010

At Granny’s I spent a lot of time just wandering off being myself and being confused as to why people were doing as they did–like talking so much about the obvious or for no reason I could gather.  I would go in the living room and play the organ or watch “Hockey Night in Canada” with Papa.

I wrote this essay snippet years ago before I was diagnosed:

All my life we went out to Granny’s [farm].  I’d lag behind as they toured every flower and checked the worms on the apple trees.  I’d wander off by myself and play in the rain barrel or squirt my mouth with the reddest raspberries.  Mostly, I swung and twirled on the swing and watched and listened.

Granny wore hot pink sweatpants, [my sister] wore her powder-black sweatpants, and Mum always wore bluebell blue.  There they’d be, picking weeds with their bums in the air like brightly colored laughing talking flowers.

I knew I wasn’t like them, and I felt bad whenever I was told to join in.  People would ask questions, which I now realize as trying to elicit conversation instead of the blunt information I would return.  I felt like an outsider because I didn’t belong.

How do you “join in”?  Please define it.  Please tell me the purpose of it?  Why can’t I do something interesting instead like reading, studying things, doing art, or going up on the sand hill to pick wild strawberries?  As a child, I didn’t understand that others wanted to be social even though it had no purpose, and they were uncomfortable around me because I didn’t.

For parents with autistic children, I am going to think about this on how balance encourage teaching socializing, with feeding the child’s passions and personality, and making the child feel special instead of different.

The same type of parenting applies to neurotypical children, but the method of teaching it to autistic children is more literal with an explanation as to why.

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A Safe Autism Haven after years of…bullying

by Eileen Parker on June 22, 2010

Outside Feeling Safe

Outside Feeling Safe

Autistic Workplace...and supper too.

Autistic Workplace...and supper too.

I feel safe here in my little haven for working, talking, and eating with my husband.  It’s my safe little retreat from a world where I have felt and been unsafe.

Why do I need to feel safe?

I have been bullied starting in childhood through to present day. I have met unsafe people, both male and female–neither one is safer than the other.  I live in a barrage of confusion about how to tell who cares and who wants an opportunity to claw into me for something self-serving.

I even have a competitor who is using my business name and others’ business names or product names to go after the buck and “compete.”  When I called her she said, “That’s the way business is done.”  B.S., and I don’t mean Bachelor of Science.  One of my sewers, who is very people acute, is now doing hiring for me, and I have contracted another people acute person to sort through that non-Bachelor of Science stuff in business meetings so I don’t get sucked in.

Do I sound angry.  Damn straight I am.  I know I’m not alone because I lurk on the autism boards, and many people cloak their anger in super-understanding or sadness, while others are just pissed.  I am now the latter.  The anger doesn’t serve me well, so I’m dealing with it…until the next time I get duped.  But that’s in business.

In my personal life I have my children, my family, my friends, and my dear John to tell me when someone is not good or worse, not safe.  I am soooo thankful for them.

I suppose I have a lot to be happy for: my cat is meowing for pets, John is painting the fence, my kids think I’m cool (Yes, I know what Parkour is), and my family is just awesome.  Did I mention my friends?  I HAVE friends, wow!  And they call, email, or IM because they LIKE me.

We are all travelers
in the wilderness of this world,
and the best we can find in our travels
is an honest friend.
~Robert Louis Stevenson

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Autism Advice for Mike, with a Brother who may be on the Spectrum

by Eileen Parker on June 21, 2010

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

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Twin Cities! KSTP-TV Ch 5 Wed Jun 9 3pm ( tomorrow )

by Eileen Parker on June 8, 2010

Twin Cities! KSTP-TV Ch 5 Wed Jun 9 3pm ( tomorrow )  Yes, Minneapolis / St. Paul, Cozy Calm, namely, Eileen Parker will be on TV talking about the Cozy Calm Weighted Blanket.  The show is Twin Cities Live, and yes, it is live, which means they can’t edit bloopers!

If you are in the Twin Cities metro, turn your station to channel 5 at 3:00 p.m., and you’ll see Eileen nervous as heck and cuddling her weighted blanket for confidence.

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You know you have autism or Asperger’s if…

by Eileen Parker on April 30, 2010

You know if you have autism or Asperger’s if…

1. You can’t have two things on the dinner plate at the same time. Once you are done with the first food, you get a fresh plate.

2. You understand why the X-men are persecuted…because they are different.

3. Fashion is irrelevant.

4. You butter your toast all the way to the edges with an even layer of butter, but only if the toast is freshly out of the toaster. If it gets hard, you have to throw it out.

5. You figure you would be great on a jury because you won’t be swayed by facial expressions or blathering outbursts of emotions.

6. Sensual experiences are rapturous or make you freak out.

7. High-pitched noises hurt.

8. You look at the floor while listing to someone intensely.

9. You look at the floor while thinking how to answer intensely.

10. Foods have to be eaten in order of temperature.

11. When your partner says, “Let’s go out,” you pause, stare at the wall then say, “Why?”

12. Eating the same thing for a week is delightful.

13. Facts ‘R Us

14. “What did you say? I wasn’t listening”

15. “I should change instead of wearing my very soft fleece pajama bottoms to the store??”

16. “When the company comes over, what should I say?” “Be yourself.” “Oh good, I don’t have to talk.”

17. Animals make more sense than people.

18. Why do NTs (neurotypicals) waste their time on small talk when there are so many real things to talk about?

19. I’m frantic when I can’t find my earplugs.

20. I’m waiting for grandchildren so I can love them, educate them on everything, then send them back. I hope my grandkids are aspies and autties so we can really relate.

This idea came from a 1000+ thread on a forum.  I won’t use other people’s ideas, so I ask that we create this thread together because I will eventually run out of ideas.  If it flies, I’ll publish a compendium weekly.  To be included, add to the thread by leaving a comment for next week’s post or sending your ideas to me at e@cozycalm.com You can request that your idea has your first name or not.

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