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Coping: Are You Sleep Deprived?

Autistic kids have a hard time sleeping. Our three year-old son is frequently awake multiple times a night. He cries out. He gets up. He moves to the floor. He hollers. He cries. He rarely sleeps anymore through a naptime - waking up earlier than he seems to need.

Perhaps you can relate.

We've coped, we tested, we've medicated (him, not us...although...). We use ear plugs. We move to the sofa. We pray. We go to bed early. We get up more often and earlier than we really want to. And we drink a lot of caffeine.

We also laugh. Gotta have a sense of humor to effectively parent an autistic child! In hopes you'll laugh and be encouraged, a little "Top Ten" list.

Paul Gilbert, a television producer and dad of two small children. He produced "Sleep Like A Baby: What Every Parent Needs to Know About Babies & Sleep," a video for new and expectant parents. Here's his take on sleep deprivation.

THE TOP TEN SIGNS THAT YOU'RE A SLEEP DEPRIVED PARENT

10) It's a good day when you remember to brush your teeth

9) You blame your spouse or partner for everything

8) The circles under your eyes have circles

7) You'll put up with your relatives' neuroses, as long as they'll baby-sit

6) You can barely navigate the stroller, much less the car

5) You now understand why your parents always looked so old

4) You hate anyone who says their baby sleeps through the night

3) There's no such thing as a "long enough" nap

2) If the phone rings after 8 PM, you think, "who in their right mind would call this late?"

AND THE NUMBER ONE SIGN THAT YOU'RE A SLEEP DEPRIVED PARENT

1) You would definitely rather sleep, than have sex

Entire article, including some good advice, is here.

Starting Points: ABA Therapy

From ARI, once more, a description of a treatment approach to autism that we are quite hopeful about: Applied Behavior Analysis. While there are so many options to consider when autism is discovered in a child, we are actively pursuing this style of intervention with our son.

Many different behavioral interventions have been developed for children with autism, and they mostly fall under the category of Applied Behavioral Analysis (ABA). This approach generally involves therapists who work intensely, one-on-one with a child for 20 to 40 hours/week. Children are taught skills in a simple step-by-step manner, such as teaching colors one at a time. The sessions usually begin with formal, structured drills, such as learning to point to a color when its name is given; and then, after some time, there is a shift towards generalizing skills to other situations and environments.

A study published by Dr. Ivar Lovaas at UCLA in 1987 involved two years of intensive, 40-hour/week behavioral intervention by trained graduate students working with 19 young autistic children ranging from 35 to 41 months of age. Almost half of the children improved so much that they were indistinguishable from typical children, and these children went on to lead fairly normal lives. Of the other half, most had significant improvements, but a few did not improve much.

ABA programs are most effective when started early, (before age 5 years), but they can also be helpful to older children. They are especially effective in teaching non-verbal children how to talk.

We've chosen this treatment for our son, and are encouraged by early results.

More on ABA in future posts.

Starting Points: Treatment Options

There are many, many ways to approach treatment for a child with autism. Here's just a short list of the more common options, addressing various social, language, sensory, and behavioral issues.

Applied Behavior Analysis (ABA)

Treatment & Education of Autistic and Related Communication of Handicapped Children (TEACCH)

Picture Exchange Communication Systems (PECS)

Pivotal Response Treatment

Floor Time

Social Stories

Sensory Integration

Facilitated Communication

Complementary Approaches

Thanks to Autism Society of America for the above synopsis. Go to their website for more.

Practical tip: We've hired a coordinator to help us identify and work with trained specialists who have expertise in the approach we've chosen for our son. We meet with her - as a family - tonight to walk through some in-home ways to deal with and help our son. More on that later.

If you don't have a good "quarterback" to help with the effort, consider finding one. It is well worth the time and money to have someone else's eyes and experience guiding through the maze of treatment options.

Starting Points: Autism Society of America

An excellent place to learn more about your child is Autism Society of America. They have an extensive collection of articles and links on their website. Perhaps even more important, there are chapters across the country, allowing you to interface with other parents in your own community. Also, your local chapter can direct you to trusted medical and psychological professionals who know autism.

From their site, a list of scfreening instruments that can prove helpful in ascertaining your child's condition:

While there is no one behavioral or communications test that can detect autism, several screening instruments have been developed that are now being used in diagnosing autism:

CARS rating system (Childhood Autism Rating Scale), developed by Eric Schopler in the early 1970s, is based on observed behavior. Using a 15-point scale, professionals evaluate a child's relationship to people, body use, adaptation to change, listening response, and verbal communication.

The Checklist for Autism in Toddlers (CHAT) is used to screen for autism at 18 months of age. It was developed by Simon Baron-Cohen in the early 1990s to see if autism could be detected in children as young as 18 months. The screening tool uses a short questionnaire with two sections, one prepared by the parents, the other by the child's family doctor or pediatrician.

The Autism Screening Questionnaire is a 40 item screening scale that has been used with children four and older to help evaluate communication skills and social functioning.

The Screening Test for Autism in Two-Year Olds is being developed by Wendy Stone at Vanderbilt and uses direct observations to study behavioral features in children under two. She has identified three skills areas that seem to indicate autism - play, motor imitation, and joint attention.

More here.

Starting Points: What Is Autism?

From ARI, a good description of autism and some stats, too:

Autism is a severely handicapping disorder which begins at birth or within the first 2 ½ years of life.

For many years autism occured in about 5 children per 10,000 live births. However, since the early 1990's, the rate of autism has increased enormously throughout the world, so that figures as high as 60 per 10,000 are being reported. The reasons for the increase are being debated...

Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of normal children.

They may stare into space for hours, throw uncontrollable tantrums, show no interest in people (including their parents) and pursue strange, repetitive activities with no apparent purpose.

They have been described as living in a world of their own. Some autistic individuals are remarkably gifted in certain areas such as music or mathematics, as depicted in the film Rain Man. All need help.

Now, this is only a snapshot autism taken from one view. And I don't agree with everything ARI suggests about causes and treatments of autism. But this is a good starting point, if you've not gotten far down the educational road about autism.

My advice: Read a bunch. Take much of what you read with a grain of salt. Look for trends in the research. Don't discount the traditional medical establishment - nor should you toss out the less conventional perspectives and studies. Remember that your child is not the same as every other kid with autism. Pray. Be smart. Be your child's advocate - who else will fight for him?

Starting Points: ARI Website

A year ago this month we received the "diagnosis" of autism for our boy. The neurologist confirmed our suspicions, as we had obseved something just not "normal" in the boy's actions and interactions. More on that later, perhaps. That day was both a relief - finally, a term wwe could deal with to describe his condition - and yet, it was a weight upon us, as well. What in the world did we know about autism? Precious little. And the Dr. indicated that much of what we'd find about autism online could not be trusted and should probably, in fact, be discounted altogether.

Some in the medical/psychiatric community prefer to say autism is a label - not a diagnosis. The difference is semantic, although there is some good reason to know why the preference. Autism is really a descriptive term applied to various behavorial traits in a person. Is is not concrete, with a specific set of determining factors.

In any event, what to do when you learn your child has autism?

Hmm, there are many steps to consider taking, and much of your task as a parent is to learn, learn, learn. Education is vital. And there ARE some trusted sources and resources to start with.

Of the many such places to look, we found a good initial place to begin your educational journey was Autism Research Institute.

Not What I Needed To Hear

Many people, upon hearing of our boy's autism, offer well-meaning comments and connections.

The other day a co-worker said his neice is autistic. Nearing the teen years, her condition is difficult. She is still in diapers, is usually in her own little world and eats a highly limited diet. Unable to verbalize meaningfully, she is not receiving any really helpful treatment. This is about the best she will ever be, without some sort of miracle. And that is a bitter pill for her parents to swallow.

My co-worker observed that his relatives act as though the girl has some demon, and that any discussion about the challenges of her disability would anger the autism demons and make things worse. Either that, or these poor folks are simply so overwhelemed and discouraged that they have no hope. The result is that they rarely talk about her needs.

They also have little help. The label/diagnois came somewhat recently, due to some very serious physical maladies that required a lot of surgery and hospital time during her first 8 to 10 years of life.

As we talked, my co-worker trying to connect a bit with your situation, he unintentionally added to my level of concern for my son. The boy is young - not even three - and his long-term prognosis remains unknown. we hope for the best, of course, but we don't know. And so, in the back of my mind - always - is the dread that this little guy may not make it past this level of intellectual, social and emotional ability. I pray that not be the case, that he will enter first grade on time and with no need for any special intervention. That is possible. That is my prayer.

As we spoke, though, this friend only raised my anxieties. What if this is the best he will ever be? What if we find ourselves in our retirement years, still caring for him? What if...?

I know this man wanted to help. What he shared with me, though, was not what I needed to hear.