Taming the Worry Monster

frightened-childIt was my son’s psychotherapist who first identified Anxiety as Jack’s biggest problem when he was in second grade.  He disagreed with the teachers that Jack was ADHD, explaining that one of the reasons he couldn’t focus in school and was acting out when the smallest, seemingly inconsequential thing went wrong was that he is constantly living on the edge, his mind filled with fear.

 

In Kindergarten we should’ve seen the early signs when he was afraid to get up from the automated flush toilet because the noise frightened him.  In first grade, he was punished for constantly munching on some cereal which he would hide in his pockets, (we later learned that the munching was for self soothing), he had to be forewarned about fire drills and put on his noise cancelling head phones.  At birthday parties at Chuck e Cheese, my boy was crawling under the table screaming when Chuck E came around and sang happy birthday.  It was embarassing and worrying for us that my little boy was crying when other kids were having fun… His life was a constant, unrelenting stream of problems all linked to his anxiety which we didn’t understand at that time.  He travelled everywhere with his security “blanket”- the Star Wars and GI Joe figures were cute, and quite normal, but these were replaced by a spatula which he carried everywhere, even on 20 hour flights to Asia where it (literally) never left his side.  God forbid he were to lose that spatula, so that humble spatula became as important as our passports, safeguarded by two very vigilant adults.

I first read this article a year ago, written by an adult with autism.  http://www.psychologytoday.com/blog/worrier-warrior/201404/first-person-perspective-anxiety-and-autism

Dr Catherine Alvarez is a mathematician, and founder of Math Wizard, student of psychology, blogger, and homeschooling mom of two great kids.  She discusses anxiety in Autism, where she explains that anxiety can be consuming and handicapping, preventing a person from learning or even trying.  Before all else, comes the Acceptance.  I wished someone had told me this twelve years ago, as there was too much pain, heartbreak and judgement that could have been avoided.  

“It’s so important to deal with anxiety before trying to address other issues or expect someone to respond to teaching.”
 
Look beyond the child’s behaviors which often seem irrational, embarassing, inexplicable, socially unacceptable, and remember that you have a frightened child, unable to explain what is troubling him.  You can’t cajole or punish away his anxieties, but you can work with him to tame those worry monsters, slowly, one at a time.  You won’t be  able to tame all of them, but every tiny little monster you can tame brings them a little bit of comfort and safety, which then frees them to learn.
 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

More Posts - Website - Twitter

Teaching my Adult Son Life Skills (Part 1) …

…When he doesn’t have the “antennae”.

confusedmanMike (not his real name) walked up to receive his High School diploma, shook hands with the principal, and then promptly danced and jumped up the aisle on the way out. We danced with him in spirit, as it had been a terrible ordeal for all of us the last two years. Unbeknownst to us, our brilliant scholar and straight ‘A’ student had Asperger’s syndrome. I think everyone at the small private school was slightly relieved that he was not the Valedictorian, as his speeches could be random, unpredictable, and not germane to the task at hand. He could have just as well have talked about how to make butter at home, or given it all in Spanish, leaving most people scratching their heads. He had “melted down,” in his Junior year, and was misdiagnosed with depression. He been unable to formulate plans for after High School, and rather than let his talents go to waste, we (ridiculously) enrolled him in a local university with hopes something would inspire an interest, and he could find a niche in the world.

To make a very long story short, Mike could not adjust to college life, and in the second semester, isolated himself, then, dropped out. In the meantime, we had begun hearing about Asperger’s, and while researching it, the light bulb came on for my husband and me. The pieces totally fit. He finally saw a Psychologist, and, after extensive testing, she confirmed our diagnosis.

While knowing the truth, and struggling to grasp all its ramifications, we at least had our son at home, and in a safe place. We struggled with our fears, emotions and tried many interventions to help us figure out what to do: 1.) Regional Center (he had made it through High School – did not qualify) 2.) a social group for other “Aspies,” (he hated them and thought the facilitators were condescending), 3.) forced him to take at least one class at community college (he secretly went to a quiet area and played video games), 4.) a mentor (he despised him), 5.) some ABA at home, requiring him to get out of bed by 3 pm and to initiate a greeting, and finally, 6.) The State Department of Rehabilitation (absolutely clueless about autism spectrum, their only solution was for him to attend community college!)

canstock13508969All Mike really wanted to do was live on his own. We started from there. How do you teach a 20 year old, about the outside world, when he had never developed antennae, or even a curiosity about how things work “out there?” He did not drive, never mastered riding a bike, but he did not really think of himself as “disabled.” I really needed help, and again, investigated many avenues, but realized I would have to “invent the wheel”, and do it myself.

One of the best days of my life was when I discovered www.caseylifeskills.org. Although it was originally developed to assist foster children in Massachusetts who were about to turn 18 and leave the system, it provided an inclusive list of areas that needed to be learned, and also had an assessment for the youth to take, and for the caregiver to take. I took the test, and gave him the test to take. We were worlds apart, with him, of course, overestimating how much he was capable of doing. But at least I had a list– a place to start, and began to gather my materials.

With nods to Casey Life Skills, here is a list of areas that I used to begin teaching Mike to take care of himself. I am happy to report that as I write this, he has been living in his own apartment for three years now, and he is content. He is maturing, becoming his own person, and proud of being capable and self-sufficient. When he is content, I am content.

In further blogs I will break down these areas in more detail, in hopes that other parents will not have to struggle like I did. I do not pretend these are perfect, and I’m sure many can find holes in the material. My desire is for others to use these topics as springboards and support for your own customized life skills curriculum for your loved ones. Every person will have to live somewhere when we are gone. The terror of that thought motivated me to teach my son to be as independent as he could possibly be. No matter if your child will live with family, in a group home, or by himself, this outline can give you a way to organize your training no matter what the level of ability. And please, check out

Casey Life Skills online, and use their free materials and worksheets if they fit your situation. It’s never too early to begin teaching your children how it works “out there.”
  • Self-Care
  • Communication
  • Housing and Transportation
  • You and the Law
  • Money Management
  • Community Resources
  • Home Care
  • Food management

Note* There are other resources online that give assistance with Career planning and Workplace Skills. I have not included this in my list. Mike is on Disability, and is not able to function in the workplace due to social and cognitive disabilities, and “delayed sleep syndrome.”

Mandy G

Mandy G., has been married for 36 years, has 2 sons, and had a career in law enforcement for 17 years before retiring to raise long-awaited children. Mike, her younger son, was not diagnosed with Asperger’s Syndrome until he was 19, being told by pediatricians there was "nothing to be concerned about,” so consequently never had interventions or treatment to address the underlying and undetected autism. Mandy has been going through the process of equipping Mike to lead an independent life, preparing him for “What will happen to him when we are gone?” It is her heartfelt wish that her blog with practical advice and living skills emphasis will give others hope, encouragement, and ways to help their adult children build a future with confidence, or at least, with less terror. Mike is now on Social Security Disability, lives in his own apartment, walks to the store, cooks and cares for himself, all with some support.

More Posts

10 Things Every Child with Autism Wants You to Know

 

canstockphoto18170887Someone sent this to me, unfortunately, I don’t know the source to credit this.  In any case, I hope you can share it, learn it, and embrace the child living it. GetInline

 

Also Read :

 

 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

More Posts - Website - Twitter

“The Reason I Jump” – The Inner Voice of a Thirteen-Year-Old with Autism

reason i jumpWe had endured weeks of frustration trying to get our son to join a new boy scout troop.  It is always a test of will and patience whenever we try to get “Jack” to do something different, new or slightly unfamiliar.  I finally reached my breaking point one day, yelling at him when he started crying, and for the first time in his thirteen years, in a couple of simple words, he painfully offered me a glimpse into his trapped mind :  ”mom, if only you live in my body”.

You think that as a mother, you are aligned with your child’s emotions, yet you might miss it inspite of your most intimate empathy.   That was the case with me.

Couple of months ago, my mother-in-law gave me a book she read, The Reason I Jump.  I believe she had to find her path to living with us, understanding the emotions and behavior of our son.  The book is written by Naoki Higashida, when he was thirteen, using an alphabet grid to painstakingly construct words, sentences and thoughts that he is unable to speak out loud.   It offers startling insights into the autistic mind.  He answers questions such as : Why can’t you have a proper conversation? Why do you ignore us when we’re talking to you? Why do you do things you shouldn’t even when you’ve been told a million times not to? Why are you obsessive about certain things? Why can you never stay still?  Do you find childish language easier to understand?

Higashida answers these and many other questions with honesty, explaining what goes on inside his autistic mind.  A book to be shared so as to help your family and friends understand your child a little better.  Because then maybe, the world will be a kinder place to them.

 

Also Read : Temple Grandin, “The World Needs all Kinds of Minds”

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

More Posts - Website - Twitter

Sensory Friendly Films

Where the lights are up, and the volume down.

movies

You don’t have to be afraid of the dark!

The first time when we were finally able to persuade Jack to go to the movies, he almost got run over by a car.

He must have been around six years old before he even agreed to go to the movies. He had always told us he was afraid, and we did not have a clue that he had sensory issues neither did it occur to us that he could be on the spectrum because he did not exhibit any of the obvious symptoms typically associated with autism.

So on a fine Saturday afternoon, dad brought him to the movie theatre, father and son ready to have fun, armed with drinks and popcorn. Upon opening the door to impenetrable darkness and loud music, Jack screamed in terror, dashed out of the theatre onto the street, hysterical and oblivious to traffic. Cars screeched to a stop to avoid hitting him with dad yelling and chasing him. (We have since learned to “front load” him as much as possible to prevent surprises. This was taught to me by one of his teachers who will also be one of the bloggers on this site as she has so much tips and wisdom to dispense!)

It was not until the ripe old age of maybe eight or nine before he finally went to his first movie.

If only we had known about Sensory Friendly Films! Where lights are turned up, volume down and the audience can talk and sing! Thanks to AMC and the Autism Society. So sit back, enjoy and enjoy!

To find out more and check screenings in your city, visit AMC’s sensory-friendly films page.

Also Read: Lesson from Summer of 2012

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

More Posts - Website - Twitter

Lessons from Summer of 2012

beach-kids-04875474

I don’t know how your summer was, but mine was filled with highs and lows -  20% high and 80% low – mostly because I wanted my son to try new things when his recreation of choice comprised of some electronic gadget or imaginary games with action figures more suited for a five year old. Nothing wrong with that, except he just turned twelve, would be quite content doing that all day, probably for the foreseeable rest of his life. Because Jack gets “stuck” with an activity, and has a very limited range of interest due to a plethora of reasons, which can be the subject of some other lengthy discussions with medical experts.

He was eight before he went to the movies because the darkness and noise terrified him; at nine, he sat pale faced, trembling and crying inconsolably outside the Laser-tag arena at a friend’s birthday party, and only rode the roller coaster at at the ripe old age of ten at Disneyland.

Imagine then a summer of enrichment camps after a two week vacation in Thailand and Singapore, battling 100% humidity and 95 degree heat. After much protest in every nasty, ugly manifestation he’s capable of, he finally completed back-to-back week long camps in violin, lacrosse, tennis/golf and surf.

Life would be the more peaceful for me if Jack was not pushed out of his comfort zone, cocooned in his safe, predictable world. But how else would he know to enjoy what he never knew he could do because his mind is trapped in a web of fear and anxiety. He learned new techniques in violin, caught a few waves at Del Mar beach, survived over 100 degree heat running in full lacrosse gear and won couple of tennis games. For a kid who would rather climb 14 flights of stairs than ride the elevator,  who equates beaches with tsunamis, we think he’s done quite well.

So, don’t give up on your child. Work with them in spite of their tears, anger, and fears. You might be surprised how much they are capable of. Only you can open their world for them, however long it may take because shutting in is not an option.

 

Kate M

Reformed Corporate Workhorse. Reuser / Recycler. Blogger. Reader. Singapore Girl. San Diego Mom. Believer.

More Posts - Website - Twitter