Category Archives: Living with autism

Mindfulness, a new concept for us

PW_tree2“Mike,” my son with Asperger’s, has come a long way, first from his supplements from the Yasko protocol (which allowed him an emotional even keel) and now from two years of NAET treatments, which seem to be helping him control his anxiety.  But he still has Asperger’s, and as part of that he still has ADD.

He’s 20 years old, and I would love it if he learned to drive. I spend too much time driving him where he needs to go. We live in the suburbs where the bus service to anywhere but the community college is terrible.  He’s been working on learning to drive for a couple of years at least. If my autistic 55-year-old brother learned to drive as a teenager, why can’t “Mike”?

He’s not getting there. What’s holding him back? The ADD. He’s not really focusing on what he is doing, while driving or doing most other things. He’s paying attention to some other script going on in his head, I think. We nearly had a serious accident in November because of this inattention, and since then I’ve been rethinking this. Maybe he isn’t a candidate for driving.

Then I read an article that was encouraging seniors to practice “mindfulness” as a way of preventing mental lapses.  Mindfulness is consciously paying attention to what’s around you. For example, you could take a walk in your neighborhood and notice what’s different from yesterday–a new for-sale sign up in the neighbor’s yard, a kite stuck in a tree, the neighbor’s car with a dented fender, or whatever.  This sounds pretty normal to the way I operate. But I realized it’s not normal for “Mike.” The idea is to practice it consciously.

I want him to practice this for a while before we try driving again.

Junk food setback

“Mike,” our son with Asperger’s at 18 years old, is old enough to hang out as a volunteer in a hospital workplace and make good decisions, right? Wrong. He’s been volunteering since early June, and has managed to put himself on a diet of at least five sugared sodas per day, plus candy and assorted junk food, paid for with the money in his wallet which came from gifts. Sigh.

What we’ve seen as a result is a great increase in obsessiveness, and less interest in other people. The reason for it came to light last week on vacation, when he didn’t have access to any of this stuff. But the obsessiveness stayed. It’s going to take a while to clear it all out of his system, if he cooperates. Sigh.

Hoping he can see the light and cut back. Today, his first day back on the “job,”  he said he only had one soda. Sigh.

Here’s the problem: his system is apparently extraordinarily sensitive to what he eats. The right supplements have brought him out of obsessiveness into regular conversations, over the past four years.  But eating lots of sugar and other stuff is sending him right back to where he started.

So the question becomes, where does HE want to be? And is he tough enough to say no to junk food?

A gluten-free cookbook for grandma, $3

If Grandma is having some trouble figuring out what to cook for gluten-free grandchildren, you might send her a copy of this ebook, made by just such a grandma. The author is one of my homeschool publisher friends, and I think it looks very useful. It has 45 pages, and it’s only $3! Grandma might learn something about substituting in regular recipes, too. How can you lose?

http://www.school4jesus.com/store/product.php?id_product=72

Stress on parents of autistic kids

A reader brought an article to my attention.  The article was written by a former NY state attorney general, Dennis Vacco, and it’s called “The Socialite Autism Murder.

The bare bones of the story are this: a woman murdered her eight-year-old autistic son, apparently also intending to kill herself. Prescription drugs were the weapon.  As it happens, the woman, Gigi Jordan, was a wealthy pharmaceutical executive, and her wealth has clouded the issues in the media. Ms. Jordan appears to suffer from psychosis, for example saying at the time that she feared a looming divorce and custody battle, but she had been divorced for two years, and there had been no such battle.

We shouldn’t let the wealth and the psychosis side issues in this story derail us from the main issue here: that parents of autistic kids need special support.  Those who can provide “respite” care to give such parents a break may just be life-savers, in these situations where coping can be so difficult.

The dead boy’s father had this to say:  “And to see him suffering… he was a good boy, but sometimes he would bang his head on the floor and scream and scream. He was in pain. His immune system was attacking his brain. She must have felt helpless.”

Child just diagnosed with autism?

This week, D. emailed me and said her grandson had just been diagnosed with Asperger’s. Where should she start in learning about this? she asked.

Here’s my reply:

You will find that the autism world is divided into two camps: mainstream doctors and parents (including some renegade doctors).

The doctors’ line:  we don’t know what causes autism, but we’re working on it, so be patient and in 25 or 30 years we’ll have some research answers. In the meantime, take some drugs.

The parents’ line:  let’s figure out what helps and treat our kids. Let’s minimize the drugs. Let’s take a good look at the overwhelming anecdotal evidence, which points to some kind of link to vaccines.

If you go with the parent camp, a good place to start is with the Autism Research Institute web site at www.autism.com.  You should also investigate Generation Rescue at www.GenerationRescue.com . They can assign your family a “rescue angel” who has a child recovered from autism and can coach you.  Or you can find a doctor who is associated with Defeat Autism Now!  Such doctors typically have autism-spectrum kids of their own, and wanted to find out what helps and do it.

Blessings,
Phyllis

Gina Marie Incandela — autistic savant?

A friend sent me a clip of autistic 7-year-old Gina Marie Incadendela singing the national anthem for NBA games.  It’s amazing for any 7-year-old–her voice sounds like that of someone much older, trained, so on.

So, what is her story? Is she parroting? Somehow it hardly seems likely. If she were deep in autism, the sensory input of a huge crowd would overwhelm her. Yet she seems unfazed.  She was once mute, and now isn’t. Not only does she sing, but she talks and has friends, according to her Web site.

Here’s what her Web site says about her recovery: “Gina received various therapies including, occupation, speech and language and behavioral.    She is now in a ‘regular’ class at a private school.  She still receives therapy at school and at home but, continues to thrive and advance.”

I am guessing that her autism has given her prodigious musical abilities. This is the case for my autistic brother, who can play a number of instruments and has perfect pitch. He can hear a song on a CD once and then sit down and play it on the piano.  He has been called a savant. People in the category of having prodigious talents despite disabilities are called savants.

My brother plays bass guitar in a band, the Hi Hopes, including several savants besides himself. It’s in Anaheim, California, near Disneyland. Actually, my brother has been having some depression issues and isn’t performing with the band. But he is rehearsing with them once a week.  He lives for this.

My son “Mike” also has perfect pitch.  He heard Gina Marie’s sound clip and said she was on pitch. I am guessing she may also have perfect pitch, because she was singing without accompaniment.

Go, Gina Marie!!

Still some anxiety

The biomedical interventions are helping a lot. The new Mike is very easy to get along with, but still doesn’t necessarily understand what someone else is thinking. Also, he still seems to have a pretty high level of anxiety, which is a hallmark of Asperger’s as I have experienced it with my kids. For Mike, this comes out when a thunderstorm is headed our way, as it was last night.  He was fretting and fretting about tornadoes, and it was time to go to bed.  So we prayed about the fear and got out a white noise machine for him.  Then he went to bed.  He says he slept fine. The storm did arrive in the night. I guess he didn’t hear it.

He’s been on medication for anxiety, clonazepam. I am thinking it isn’t working. I’m going to try gradually taking him off it.  It’s the last prescription medication he is on.

Autism Symptoms & Music – 5 Ways Music Can Make a Difference With Autism

deborah-leeby Deborah Lee (who used to be Mike and Shannon’s piano teacher–PW)

Most people understand that music is very enjoyable. There are aspects of music that bring a peace of mind and spirit. There are also aspects that are very structured and scientific.

All of these elements can provide the autistic person with some great tools and experiences to help them reach milestones and connect more with those around them. Here are some ways music can help…

Nonverbal Communication: Many Autistic people have limited or no verbal skills. Music provides them a way to express themselves without words. Sometimes this is just getting feelings out. Music has also been shown to increase verbal ability in those with autism, particularly through singing.

Motor Skills: Providing musical opportunities to those with autism is a great way to improve motor skills. Holding an instrument, clapping hands, and moving to the music all increase dexterity and muscle coordination.

Motivation: Music is a great motivator. The love of the music and desire to do more leads those with autism to spend more time with the music and in turn more time developing the skills the music provides.

Structure & Repetition: Music is not random, it is very structured and includes elements that are more constant like the fundamental timing or tempo of the piece and also provides repetition such as the rhythm or the lyrics. These things are very important to a person with autism who finds repetition and structure to be a place of calm.

Spontaneity and Flexibility: Even though music is structured there is still much room to be playful and to change things as you go. This helps the autistic individual to build confidence in their ability to go with the flow and helps them better adapt to the lack of structure in the world around them.

As you can see there’s much more music can do for an autistic person than just a chance at recreation. When used in certain ways music can give a person with autism a better quality of life.

Find Simple Ways Music Can Improve your Day to Day Life through the free four part mini course available at http://www.ourmusicalhome.com While you’re there you can read more about how music is important for all of life and ways to reach your own personal goals.

More information about autism, Asperger’s Syndrome, and PDD-NOS can be found at http://www.myautisminfo.com

We would love to hear your thoughts, ideas, and experiences. Comment areas are available at both sites.

From Deborah Lee — who wants you to have a more musical home and a more musical life.