Day One - Virginia Beach Adventure

Traveling with children is difficult at best. Traveling with children with significant special needs is a Herculean task. I feel like I was instructed to pack up one third of my house, fit it all into the family MINIvan, and arrive at our destination with happy, smiling faces. Oh, and in the process – don’t forget anything important. Well we didn’t and we did – we didn’t arrive with happy, smiling faces and we did forget some important things.

Then throw into that stressful situation a deafblind child who understandably gets a little anxious in strange places, and you can count of the first day of any such trip to be more than just a little stressful.

We left home yesterday morning for our trip to Virginia Beach. I am part of a conference planning committee which is hosting a conference called Pathways to Possibilities. The conference is targeting professionals a family members who support children with significant disabilities, and in particular, deafblindness. The conference doesn’t officially start until Tuesday evening, but we came to the beach a couple of days early for a vacation, the only vacation we will get this year.

So assuming I can find Internet access somewhere (and my hotel room is unfortunately not one of those places), I will still try to post every day this week. In the meantime, we are going to try a dolphin watching trip today if we can get Ashley onto the boat. Last year, she loved just such a trip once we got her on the boat – and that required the strong arms of the boat captain hoisting her aboard while she screamed like a wounded coyote.

My only other mission today is to find shrimp – lots and lots of steamed, spiced shrimp!

Hard to Watch - Hard to Understand

If you have a child who engages in self-injurious behavior, you know how terribly upsetting it can be. Watching a child slam their fist into their head, pick at their gums or fingers until they bleed, or even bite themselves and break the skin is something no one should have to endure. But many of you know that this is common behavior for a child with significant disabilities.

My experience with the school system and with many medical professionals is that they would rather try to control the self-injury with medication - and sometimes that is really strong medication with significant side effects. For years I have fought my school system to assist me in finding the reasons for Ashley's self-injurious behavior, and even though they agree to do their version of a functional behavior assessment, the result has usually been restraint. And that restraint does nothing but increase Ashley's frustration which causes the self-injurious behaviors to increase.

For years, I have insisted that the behaviors were a direct result of lack of communication. The school system and many of the doctors scoffed at that idea. Yet, when Ashley did finally get a teacher who believed in her, and a school setting that was appropriate, the behaviors all but stopped.

With each new school year, with each new school placement, with each new teacher - I wonder if the behaviors will resurface. If they do, my campaign to educate the educators will again kick into high gear. And last night, I found one of the best articles on self-injurious behaviors I have ever read.

Written by a gentleman who is autistic, the article on stopping self-injurious behavior is excellent. I urge all parents and educators to take just a few moments to read the article I have linked to below. I promise you will come away with a much better understanding and approach.

Stopping Self-Injurious Behavior

Thankful Thursday

Today I am thankful...

• for the little food cart on the corner near my office. I love their sesame pasta!


• that I have just one more day to work before leaving for the Pathways to Possibilities conference in Virginia Beach. That will be work also, but work I love.


• that I now have a bathtub, a ceiling and walls in my being-remodeled bathroom.


• for machines that laminate. I don't know, there's just something so slick about it for an anal retentive person like me.


• for manila file folders - back to that anal retentive stuff again


• that next week I will get to see Lynnette and the beautiful Brooke. I have really missed you guys.


• for times when I get to just sit and watch the birds play in my birdbath. My two cats are usually sitting next to me, but I can almost guarantee we are not thinking the same thoughts.


• for root beer floats.


• for neighbors who check on each other.


• for friends who surprise you with a text message when you least expect it.

Another Crash Test Dummy Family

When I read Melody's post at 5 Minutes For Special Needs yesterday morning, I felt as if she had been reading my mind. In her post, The Crash Test Dummy Family, Melody shared her pain at being verbally and physically attacked by her 13 year old son who is diagnosed with FAS (fetal alcohol syndrome). Although my 17 year old daughter, Jessica, is not diagnosed with FAS but rather RAD (reactive attachment disorder), the scene Melody described is all too familiar to me. And I had spent my night and morning worrying about Jessica.

Jessica still has frequent outbursts of rage and aggression. She still hurts people. Even after 8 years of a stable home, a loving family, and many many hours of therapy, Jessica still is scarred by her early life in foster care. While school systems and after school care facilities must learn to help her and find ways to help others in Jessica's world of aggression, I worry what will happen when Jessica enters the job market.

Employers will have no obligation to help Jessica control her aggressive tendencies. They will not have to offer therapy or train other co-workers on how to get out of her way should she begin to rage. They will simply refuse to let her work. So in my worries, I was seeing Jessica move from job to job, always being asked to leave when the aggression surfaced, and her depression growing deeper with each rejection.

Melody's words which really hit home for me were "You spend the life of your child trying to encourage his brain to re-wire itself to function with a smidgen of impulse control. Nothing changes. It only escalates. You keep praying. You keep loving him."

I felt Melody's despair yesterday because it is my despair. And like Melody, I will love and support Jessica no matter what. But the thought of what most likely will come in her future, does indeed deepen my despair.

Growing Dreams

Ashley loves plants and flowers. From the first days she was able to wobble across our yard, she has headed straight for bushes and flowers. She seems to have an innate ability to know which plants are edible and which are not. So, just in case you were wondering – pansies are fine to eat, azaleas taste bitter, and honeysuckle is the best!

Because of Ashley’s enduring interest in plants and flowers, her school team and I have discussed the possibility of Ashley working in a greenhouse. So imagine my delight in finding the following website:

Growing Dreams

One of my favorite things about the website – the statement in the upper left corner – “We honor the concepts of humanity, dignity, respect, hard work, fellowship and friendship.”

I guess I am either going to have to move my family to Chicago or try to start a similar enterprise here!

They Asked - I Answered

A company called Pinhole Glasses Direct contacted me and asked if I would do a review of their product. Pinhole glasses, they claim (incorrect spelling and grammar is directly from their website):

Are effective and helpful in restoring vision for a number of eye disorders like myopia, hyperopia, cataract and astigmatism.

It is also useful over all distances. Whether it is for reading, for watching TV, or for working on the computer, one pair suits all purposes.

Allows only direct and coherent light rays to pass through. It does not allow indirect rays from distorting the true images formed by the direct rays entering in your eyes. Find out more about how pinholes work and the science behind its working here...

Do not employ concave lenses in correcting your vision. This prevents your eyesight from weakening due to wearing lenses, a common opthalmologic phenomenon called Acquired Myopia.

Increase brightness of image of objects. This allows you to see better in norma circumstances.

Are made with laser technology. They are highly effective, quality tools.

Are sturdy and long lasting. You need not worry as its performance does not get affected by scratches and marks on the lenses.

Unlike prescription eyeglasses, are a one-time investment. It saves you trouble and the money you would otherwise spend on changing your eyeglasses every now and then.

At $14.99 a pair, they are highly affordable. They are much cheaper than your prescription eyeglasses.

Although their claims reminded me of snake oil salesmen from the past, I decided to consent to the review, and so they sent me a pair of their glasses. And, while waiting for the glasses to arrive, I did a little research.

According to the website of one of their competitors (I assumed), was this explanation of how pinhole glasses work:

Pinhole glasses (also known as stenopeic glasses from the Greek words for "little opening") are not made of glass at all but of an opaque substance such as metal or plastic. The user looks through any of the many small holes in the material. These holes have the effect of reducing the width of the bundle of diverging rays (called a "pencil of light") coming from each point on the viewed object. Normally, the full opening of the pupil admits light. It is the improper bending of the outermost rays in that pencil of light which causes refractive errors such as myopia, hyperopia (farsightedness), presbyopia (diminished focusing range with age) and astigmatism to be noticeable. Pinholes can bring about clearer vision in all these conditions. By blocking these peripheral rays, and only letting into the eye those rays which pass through the central portion of the pupil, any refractive error in the lens or cornea is not noticed as much. The pupil may be wide open, but only the central portion is receiving light. The improvement in visual acuity can be striking.

Okay, still sounding a little snake-oilish to me, I checked Wikipedia. Here is what I found:

Pinhole glasses, also known as stenopeic glasses, are eyeglasses with a series of pinhole-sized perforations filling an opaque sheet of plastic in place of each lens. Similar to the workings of a pinhole camera, each perforation allows only a very narrow beam of light to enter the eye which reduces the size of the circle of confusion on the retina and increases depth of field. In eyes with refractive error, the result is often a clearer image. Unlike conventional prescription glasses, pinhole glasses produce a clear image without the pincushion effect around the edges (which makes straight lines appear curved). While pinhole glasses are useful for people who are both near- and far-sighted, they are not recommended for people with over 6 diopters of myopia. It should also be noted that pinhole glasses reduce brightness and peripheral vision, and thus should not be used for driving or when operating machinery.

Pinhole glasses have been marketed by various companies on the claim that - combined with certain eye exercises - they could permanently improve eyesight. These claims have been analyzed, but no scientific evidence has been found to support them, and they are no longer allowed to be made in the United States under the terms of a legal settlement with the Federal Trade Commission.

Well, that would explain why the glasses were mailed to me from Europe.
The glasses finally arrived, and they were very much like the company’s website described. They are made out of plastic with plastic inserts where the lenses usually are, and there are lots of little pinholes on those inserts.

I tried them with several activities – eating dinner, watching TV, using the computer. My family members, all of whom have a vision impairment, also tried them. I brought them to my office and several of my co-workers tried them.

And I’m sorry to say that the unanimous decision was ‘snake oil’.

I’ve provided some links for the company’s website below. Personally though, I wouldn’t waste my time.

This may be the last time I am asked to do a product review, eh? Unless…the company really wants an honest review…

Company Main Page

Ordering page

Frequently Asked Questions

And Alternative to Prescription Eyeglasses

Body Art

If your child has ever received occupational or physical therapy services, especially for a sensory processing disorder, you’ve probably heard of and seen Body Sox. They are like a very large pillowcase, and usually are made of a stretchy lycra-like fabric. Your child climbs into the Sox, and can then stretch all around. The stretching against the fabric provides sensory feedback, and can help some children get a better awareness of their body is space.

Ashley used one in therapy for a while, and she really enjoyed it. It was almost as if she was making an art piece while wearing it. She would pose herself in lots of different positions, hold the pose and look to her therapist for applause. I always thought I would like to have one at home, but when I found out how much they cost, I couldn’t afford it. But that little fact didn’t slow Ashley down.

While she was in her bedroom getting ready for bed one night last week, she decided to create her own Body Sox using her nightgown. When I returned to her room with her nighttime meds, there she was – posing once again. So, here she is in her own Sox creation, and quite pleased with herself as you can see.