Janet Ann Collins on Special Needs. Opening Eyes, Opening Hearts

Different Dream Parenting

2012-01-11T07:39:00.000-08:00

Having raised foster kids with special needs and worked with many others in schools, I know quite a bit about the subject of parenting them. Without doubt Different Dream Parenting; A Practical Guide to Raising a Child with Special Needs by Jolene Philo is the most helpful book on the topic I've ever seen. It's loaded with practical advice and resources for every stage of the lives of special kids from birth to adulthood and even includes a section about coping with death of a special child. The author tells of her own experience and quotes many other parents who have children with special needs.

The book has a strong Christian message, but even readers who are not religious will find the vast collection of helpful information worth the purchase price.

Acceptance Plus

2011-10-26T08:12:00.000-07:00

There has always been a problem with people accepting others who have special needs. For years many of them were shut away in institutions or kept at home. But here's a story that shows how one person with Down's Syndrome was more than accepted. I hope you find it inspiring.

http://www.theunion.com/article/20111013/NEWS/111019890

Blind Sided

2011-10-18T17:22:00.000-07:00

When I started reading the book Thad Nodine sent me for review I didn't think I would like it because the first chapters contained too much erotic description for my taste. But I was soon swept into the plot, which became more and more exciting as the story unfolded and the characters must deal with a natural disaster. (No spoiler here -- you'll have to read it to find out more.)

Perhaps you wonder why I'm reviewing Touch And Go on this blog about special needs. It's because the main character is blind - not just legally, but totally, and the book lets readers understand what blindness is like. The author has several people in his family who are blind, so he knows what he's writing about.

Everything in the novel is told from hthat character's point of 'view' and is totally believable. I felt like I was actually experiencing things as he described them.

But the book is more about relationships and trust than blindness, and that condition is only part of what makes Kevin seem real.

Some readers would be offended by the language characters use, but if that sort of thing doesn't bother you, this book would be a good choice to read.

A Helper

2011-10-15T11:27:00.001-07:00

Here's a link to a blog post about someone with special needs who helps others.

http://familiesmatter2us.blogspot.com/2011/10/guest-post-by-author-rachael-benson.html?spref=fb&mid=503

Autism Help?

2011-09-15T11:44:00.000-07:00

Last night I met someone at a writers' group who told me his autistic son has improved amazingly since he has been on a special diet. Apparently people with autism digest foods, especially dairy and gluten, differently that other people do. Here's a link that man gave me to a website with information about many studies about that:

http://www.autismbiomed.com

Unlocked

2011-08-27T09:54:00.000-07:00

A friend recently loaned me a book, Unlocked, by Karen Kingsbury, about a kid with autism because she knew I cared about the condition, having raised an autistic foster son. I greatly enjoyed reading it.

In my opinion, the book is most appropriate for Young Adults since the main characters are teenagers. Since it's a Christian one there's nothing offensive in it. But anyone dealing with autism will probably want to read it.

Unfortunately only a few few autistic kids are at the same place on the Autism Spectrum as Holden, the character who is helped greatly by music. But the primary focus is on the main character, Ella, who is one of the popular kids but decides to stand up for Holden in spite of what other kids think. I wish all teenagers would read it since they tend to make many bad choices because of valuing popularity.

The book is well written - I couldn't put it down - and I think it will make a difference in the world by helping "normal" people understand those who are different from themselves.

CFS Novel

2011-07-23T11:44:00.000-07:00

I recently read Chronic Fatigue Syndrome: A Novel by Caroline T. Anderson and have very mixed feelings about it. The book was self published and, as a writer, I can see why that was necessary. Of course the target audience is small, but the book also needs some good editing.

It starts slowly and, for some unknown reason, by the end of the first page we're in the point of view of horses. There's way too much information given in dialogue and long quotations from research done by the main character (who is not a horse.) Since a lot of people don't know much about Chronic Fatigue Syndrome it was necessary to convey some of that information, but only the basics were necessary for the plot and the rest could have been listed at the end of the book.

The only reason I kept reading was my personal interest in the disease, but I'm glad I did. About a third of the way through, the book picks up and the rest is an exciting adventure that kept me turning the pages.

This novel is a good way of letting the general public know about Chronic Fatigue Syndrome and, while fictionalized, many people think the sort of machinations it portrays that have kept the disease from being recognized and treated are real.

In this work of fiction anti-viral drugs can cure the disease and I can tell from personal experience that they don't work for everyone. *I was on one for months and all it did was cause permanent neurological damage. (If anti-viral meds could kill retroviruses they would probably cure AIDS, too.) But that kind of medication may have helped the author, who writes under a pseudonym.

However this novel is a good way to make people aware of problems most know nothing about and, once the reader gets past the informative first chapters it's an enjoyable read.

*For information about how I recovered from that disease please read my earlier posts on that topic here: http://tinyurl.com/3dkb6tv

Face of Hope

2011-06-27T19:38:00.000-07:00

If you want to read an inspiring book about someone dealing with special needs try Face of Hope by Carol Guscott. I met the author at a writer's conference and was impressed with her positive, inspiring attitude in spite of horrible problems. The book goes into details that will be upsetting to readers, but they only make the way her faith and determination shine through even more inspiring.

Reader's Digest

2011-06-22T10:14:00.000-07:00

I don't subscribe to the Reader's Digest anymore because they've got less than half the content they used to carry, but this week I picked up the June/July copy at the grocery store. It contains an article about parenting a child with special needs that might be of interest to anyone doing that.

The author's daughter has Autism so she talks a lot about that spectrum, but the article includes plenty of information about caring for people with other special needs and it's written in a friendly style.

Anyone caring for or about someone with special needs might want to read the article, My Daughter, Myself, by Sallie Tisdale.

Dealing With Memory Loss

2011-06-19T14:24:00.000-07:00

Unlike most other special needs, dementia is usually harder on the people caring for someone who has it than on the patients themselves. I've never had to deal with that problem myself, but have several friends who have, and can see that it isn't easy.

Cecil Murphey has written a book called When Someone You Love No Longer Remembers that should be a great help to those caregivers. Filled with personal stories of many caregivers it both lets the reader know they are not alone in what they must deal with and offers examples of things that have helped others cope.

When Someone You Love No Longer Remembers would make a helpful gift to anyone caring for a family member with Alzheimer's disease or any other kind of dementia.

I've had the privilege of meeting Cecil Murphy many times at writers conferences and can vouch for the fact that he is a completely honest and compassionate person and that shines through in this book.

Prejudice

2011-06-08T09:02:00.000-07:00

When I was a kid people with disabilities were rarely, if ever, seen in public. There were no wheelchair ramps or curb cuts, so people using chairs or walkers couldn't get around. Children who were Deaf, blind, or 'mentally retarded' and people of any age with mental illness were sent to live in institutions for the rest of their lives.

Things have improved a lot since the Americans With Disabilities Act was approved and, as a result, it's not unusual to see people with special needs in public places.

But prejudice against them still exists.

I've often seen people talk to someone pushing a wheelchair and ignore the person sitting in it, or even talk about that person as if he or she weren't hearing the conversation. And lots of folks are obviously uncomfortable with anyone who seems different.

I hope eventually everyone will realize that, while a few people with mental illnesses or personality disorders might be dangerous, most people with special needs are people first and should be treated like other people.

Parenting Problems

2011-06-04T10:24:00.000-07:00

It isn't easy to care for a child with special needs, especially if the child requires lots of extra time and attention. That can be a stress on the whole family. Other siblings may get far less of their parents' time and attention and caring for the child may put a strain on the family budget.

I've known many families with special kids where the added stress was at least a partial cause of the parents getting divorced.

But another factor may cause marital stress unnecessarily. In our culture many people consider children to be status symbols. Having kids who make the team, star in the class play, get good grades in school, and can be expected to get good jobs as adults makes the parents feel valuable and having kids who may never be able to achieve any of those things makes them feel like failures.

That's a big flaw in our society because children don't exist to be shown off.

One of my college professors gave us this definition of love: "When the happiness and well-being of another is essential to one's own happiness and well-being a state of love exists."

If parents love their children and do the best they can to meet their needs they are successful parents.

Pretty Stinky

2011-05-26T08:49:00.000-07:00

About 30 or 40 years ago a commercial appeared in popular magazines saying "Beethoven never smelled this good before." Sweatshirts with pictures of Beethoven were in style and the ads were pushing laundry detergent with perfume in it.

That commercial can be remembered as the beginning of the fragrance age in America. Before that people wore perfume, cologne, or "toilet water," some cosmetics contained fragrance, and some people used scents in their homes to cover up unpleasant odors, but that was about all.

Then fragrances became used everywhere. Laundry and cleaning products were only the beginning. Since then fragrances have been added to hundreds, if not thousands, of products. Stores, restaurants, churches, and even offices fill the air with smells. And most of those are made with chemicals.

When we smell something all the time we become less aware of it so many people don't even realize their clothes, hair, bodies, and the places they spend time are full of them.

'Odor eliminators' don't actually take odors out of the air. Instead they contain airborne chemicals that counteract our sense of smell.

Since the chemical fragrances and odor eliminators became prevalent there has been a great increase in autism and cancer. Could there be a relationship here?

If the chemicals I'm talking about directly caused those conditions everyone would have them, and that's not the case. But what if that's one of two or more factors that work together to cause one of those conditions?

Even if that were not a possibility thousands of people have allergies and chemical sensitivities to perfumes so it would be helpful to them if we all switch to using fragrance free products as much as possible. By doing so we might even save some lives.

Autism Research

2011-04-13T16:44:00.000-07:00

Scientists are finally considering the possibility that chemicals in foods, such as artificial coloring and flavoring, and chemicals in the air from fragrances and "odor eliminators" are actually harmful and that hereditary factors determine who will be damaged by those chemicals.

For example,The Mind Institute in CA is doing research on causes of autism such as environmental chemicals and hereditary factors. Some of the studies are on their website, http://www.ucdmc.ucdavis.edu/mindinstitute/

About Time!

2011-03-31T19:30:00.000-07:00

Back in the 1970s two of our foster kids had been diagnosed with ADHD and we tried putting them on the Feingold diet. That meant no artificial coloring or flavors, limited sugar, and no preservatives or foods high in salicylates.

I kept careful records of what they ate and how they behaved since results could take several days to happen. We found that eating sugar made no difference at all, but the other things made a huge difference. When on the diet the boys (who also had other problems) went from several tantrums a day to one or less a week. However eating even a tiny bit of the problem chemicals would set them off.

A couple of times the boys went wild when I was sure there hadn't been any exception to the diet, but we later found out the ingredients of certain foods had been changed but the old labels were still used.

Obviously that reaction couldn't have been a psychosomatic. However the Feingold diet was considered quackery by most of the medical community and there was a lot of negative publicity about it.

But a few years ago a study showed that preservatives can cause behavior problems. You can see an article about that here:

http://tinyurl.com/yqu5vh

And this week it hit the news that scientists have discovered artificial colors in foods may be causing the increase in the number of hyperactive kids and the FDA is doing a study about it. Here's a link to an article about that:

http://tinyurl.com/4zujhqa

Finally the Feingold diet is being taken seriously, although the people studying it don't seem to mention Dr. Feingold. The man deserves some credit.

Terminology

2011-02-12T13:17:00.000-08:00

The terms used for various conditions keep changing. I think "Special Needs" is politically correct at the moment but, like 'disabled,' 'handicapped,' and "crippled,' that may become unacceptable soon.

I remember when people would say 'deaf and dumb" or 'mentally retarded' but those are no longer considered polite.

Actually, saying 'deaf and dumb' was never logical because 'dumb' means not having a voice and most deaf people do have voices. And it was assumed that the inability to talk showed a lack of intelligence so the term, dumb, became a synonym for stupid.

However, in most cases the terms have been changed because people tend to assume that the disabilities/special needs themselves are something to be ashamed of, and that's wrong.

In sports a handicap is something given to a person with greater skills than the competition to make the games fair, so why not use it for people who have a condition that makes life more difficult? It sounds like a compliment to me. And retarded just means slow; there's nothing shameful about that.

The real problem is the attitude that having a special need is something to be ashamed of. Since the ADA was passed people have gotten used to seeing people with those conditions but we still have a long way to go to correct the general attitude about them.

Everyone needs to know the conditions aren't contagious so there's no need to be afraid of people with special needs and they need to know that people who have them are human beings first.

Come to think of it, maybe that prejudice is a special need itself.

Grief

2011-01-29T10:19:00.000-08:00

Sometimes people grieve when no death is involved - except maybe the death of a dream.

It's not uncommon for parents to grieve when they learn their child has special needs and won't be able to have the life they'd imagined.

Or if someone learns they have a disability or chronic illness themselves grief is a normal reaction.

As when someone dies, it's usual to go through the five stages of grief explained by Elizabeth Kubler-Ross (sorry I don't know how to add umlauts to her name.) Those stages are denial, anger, bargaining, depression, and acceptance and people may cycle through them for a long time or return to them long after they've come to terms with the situation. The same thing is true with the sort of grief I'm talking about, and any of the stages can re-occur at any time.

If they do, it's perfectly normal.

Non-Post

2010-12-22T10:22:00.000-08:00

I'm not planning to blog this week because I'll be busy celebrating the holiday. I hope you have a wonderful, Merry Christmas. (Even people who don't celebrate that holiday, are allowed to be happy on December 25th and I hope you will be.)

A Special Kind of Love

2010-12-18T13:49:00.001-08:00

I saw something online about a book that sounded helpful, contacted the author, and she sent me a free copy to review. A Special Kind of Love by Susan Titus Osborn and Janet Lynn Mitchell is by far the most helpful book for parents of kids with special needs that I've ever seen.

Besides the two authors, many others have contributed their own stories, which are combined with practical hints. Both good and bad aspects of raising kids with a wide variety of special needs are addressed. Some of the less obvious topics covered are dealing with the rude comments of other people, choosing and dealing with doctors and schools, managing time when a child needs so much of it, and what to do when the kids grow up.

Probably the most helpful thing about the book is the comfort of realizing you're not alone and that other parents have been through the same things. This is definitely a Christian book with a strong spiritual aspect, but would be helpful to people of all religions or none at all.

Inclusion

2010-12-15T09:30:00.000-08:00

Look at this video:

http://www.youtube.com/user/IamNorm2010

and go to the website, http://www.iamnorm.org/who-is-norm/news/10-09-29/YOUNG_ACTIVISTS_LAUNCH_I_AM_NORM_CAMPAIGN.aspx for the inspiring story.

Good Gloves

2010-12-08T10:17:00.000-08:00

In my last post I mentioned gloves that probably won't be helpful, at least for a while. Today I want to mention a very practical use for gloves.

A few days ago I got into a conversation with a woman I met in a store. She was using a wheelchair and told me she ALWAYS wears gloves when she leaves her own home because the ground, sidewalks, and even some public floors are likely to be full of germs. When the wheels of the chair role over them the germs are carried directly to her hands unless she's wearing gloves. Besides dirt and mud, the surfaces may have animal urine, saliva or mucus from people who spit on them, and many other unsanitary substances.

When she arrives home the gloves go directly into the dirty clothes to be washed before they're used again.

Motorized wheel chairs are less of a problem because users don't need to keep their hands on the wheels. However I would strongly suggest that anyone using the traditional type of chair have numerous pairs of washable gloves and wear some any time they go outside.

Stupid Gloves

2010-12-04T11:36:00.000-08:00

I've seen several news stories online lately about electronic gloves to help deaf people communicate with hearing people. Some of them are not developed enough to be helpful while others are simply stupid.

One glove allows users to make shapes from the Sign Language alphabet with their hands and shows the letters on a computer screen. Duh! If someone can fingerspell English words they can certainly type the same letters using a keyboard and technology is already available to read the words aloud.

And fingerspelling isn't really Sign Language anyway, it's just English, or whatever other language the spelled words belong to, on the hands. I was an Instructional Counselor at California School for the Deaf for many years, married an American Sign Language interpreter, raised three deaf foster kids, and have had many deaf friends and acquaintances, so I know what I'm talking about.

Of course the gloves that can speak things aloud without a computer are a bit more helpful, but I'm not sure they're more practical than the portable devices already available. If they do get improved to the point where they can speak hundreds of genuine signs as English words that will be a different story. Maybe that will happen in a few years.

Should Kids With Special Needs Have Pets?

2010-12-01T14:28:00.000-08:00

Service dogs can be a wonderful help to some kids with special needs. Besides the work they're trained to do, they can be loved as much as any pets. But only certain kids need them and can handle learning how to work with them. What about other kids with special needs? Should they have pets or not?

That depends on many factors. If the child is likely to be harmed by a pet, such as by an allergic reaction, the answer is obviously no. And if children are likely to harm pets they shouldn't have any.

But for kids who don't fall in either obvious category, here are some factors to consider: Will the pet require care the child is unable to give? If so, can someone else provide it? If the child is likely to be hospitalized for extended periods can the pet be left alone or is other care available? Might sanitation be a problem?

And if a pet is appropriate, what kind is best?

Many kids can benefit from the affection and physical contact of a cat or dog while others might enjoy watching fish or other creatures in an cage or terrarium for extended periods. A small rodent can provide both some warm, physical contact and time to watch them from outside the cage.

Even children who can't have their own pets can benefit from animals such as therapy dogs and horses. A good example of that is this book about a therapy horse: http://andyandthealbinohorse.blogspot.com/

Quickie

2010-11-27T08:17:00.000-08:00

I don't have time to write much today so I'd like to remind readers of a previous post that you may find interesting. Here's the link:

http://janetanncollins.blogspot.com/2009/06/service-cat.html

Learning Disabilities

2010-11-24T10:54:00.000-08:00

I used to wonder what it felt like to have a learning disability since I knew many people who had them.

I found out.

When I was finally diagnosed with chronic Epstein-Barr disease I was given an anti- viral medication that caused severe side effects. I won't mention the name of the medicine because the manufacturer would probably sue me. One of the side effects was a learning disability. At least I guess that's what you'd call it, since I'd already finished school.

At first I couldn't read even a paragraph and remember how it had started. My reading skills had always been at the 99th percentile, but all I could read and understand were simple picture books. Over a period of months that improved and I could read normal material again, but only if there was no background noise or anything else to distract me.

And I couldn't remember numbers or do even the simplest arithmetic for months.

That happened about twenty years ago and my reading seems to be almost back to normal. Background noise only distracts me if I'm reading something that requires intense concentration like a scientific or legal document, and I rarely read those. I'd guess my reading level is now at about the 80th percentile, which is certainly adequate.

However I still have a problem remembering numbers and there have been times when I was under stress and couldn't think of my own phone number. Math was always the hardest subject for me in school and my levels on aptitude tests were usually below the 70th percentile. Now they're probably far below that and I'm thankful for calculators and the automatic dial feature on phones.

So now I know how it feels to have a learning disability. It doesn't feel like anything. Being unable to remember a number or something I had read a few seconds earlier felt no different than forgetting other things, and everyone forgets things at times.

The Right to Grieve

2010-11-20T12:08:00.000-08:00

One of our foster kids often had violent tantrums. Smashed windows and thrown furniture were common throughout the years he lived with us. But he was a kind-hearted child at heart and, even when having tantrums, we knew he'd be careful never to hurt anyone else.

When he reached puberty that changed and the day he physically attacked me we knew we wouldn't be able to keep him because he would endanger the other kids. We gave him up and he was institutionalized.

Although we hadn't been able to adopt him because of legal technicalities, we had considered him our son and loved him as our own. And when we lost him, I was stricken with grief.

One relative, who had been a teacher and knew it's possible to love kids you didn't gave birth to, told me she was sorry. Someone else who had been in danger of loosing her kids in a custody battle also expressed sympathy. But that was all the support we got. My mother told me she was glad our son was gone because caring for him had been so hard on me, and other people had similar reactions, if they noticed at all.

A few weeks later the son of one of my friends was killed in a car accident and the entire community offered her sympathy and support. I'm ashamed to admit it, but I felt jealous. Why couldn't those people understand that loosing a child for any reason can be just as painful as loosing one to death?

Since then whenever I hear of people who lose their children in custody battles, have to give them up for adoption, or send them away for institutional care they have my greatest sympathy. Loosing a child for any reason is one of the most painful things a parent can experience.

Special Kids Carers

2010-11-17T14:08:00.000-08:00

I've just started a Facebook group for people, such as parents, teachers, etc., who care for and about children with special needs. The name of the group is Special Kid Carers. I don't know if many people will want to join and participate, but I couldn't find any similar Facebook groups so I hope it will meet a need. Please apply to join if you're interested.

A Different Kind of Grief

2010-11-13T11:47:00.000-08:00

Decades ago Elizabeth Kubler-Ross wrote about five stages that people dealing with grief are likely to go through; denial, anger, bargaining, depression, and acceptance. Since then her theory has been questioned, but apparently most grieving people do go through those stages, although they may be in a different order and some or all stages may be repeated many times.

Death is not the only thing that causes grief. We may grieve at the loss of anything we value, and discovering that we or a loved one have a serious medical condition or special need normally results in grieving. And, unlike death, these things are not likely to be done so that we can deal with them and move on. Instead they often continue for a lifetime.

Those things can bring about the death of a dream, such as when a child is diagnosed with something that will prevent him or her from having the expected sort of childhood, or when people discover conditions that will prevent the kind of career or marital relationship they had or hoped for.

It's perfectly normal for people dealing with special needs to have certain stages of grief occur many times during their lifetimes.

Cervical Collars

2010-11-10T11:20:00.000-08:00

Once I fell and chipped a bone in my neck. As a result I had to wear a cervical collar for six weeks, and the first day I was allowed to remove it the car I was riding in got rear-ended. I had to wear the collar often after that because of the resulting whiplash injury. The "physical therapist" my HMO sent me to was actually an incompetent chiropractor who ruined every joint in my spine and I still have neck and back pain nearly 40 years later.

Obviously I've had lots of experience wearing cervical collars and I've learned one very important thing: if the collar is a foam one, don't let it get wet in the rain! Those foam collars are basically made of the same material as a sponge, and will absorb and hold the moisture. If the collar can't be removed, the resulting discomfort can last for days.

Signs of Trouble

2010-11-06T11:51:00.000-07:00

Because of my personal experience with special needs, characters who have them appear in my writing even if I don't plan on that in advance. For example, one of the main characters in The Peril of the Sinister Scientist uses a wheelchair.

Now I've written a book for children specifically about kids with learning disabilities and it has just been published. Signs of Trouble is about two girls with dyslexia who get separated from their Special Education class on a field trip and use what they've learned about safety rules and recognizing signs to get reunited with them.

The book was officially released several days ago and I'm waiting for my copies to arrive in the mail and for it to appear on Amazon, which should happen soon. The book will also be available at other online sites like Barnes and Noble and bookstores can get it through their distributors.

I'm hoping the educational material in the back of Signs of Trouble will help kids understand others who are different from themselves as well as reinforcing safety rules and beginning reading skills. And I think they'll enjoy the story, too.

Not Horrible

2010-11-03T11:37:00.000-07:00

Now that Halloween is over I've been thinking about the many portrayals of people with special needs as something to be afraid of.

Scary characters are often shown with scars and missing limbs.

Mental illness can create some dangerous behaviors, but that doesn't mean it's okay to depict mentally ill people as monsters.

And people with developmental delays are neither funny nor frightening, as they are often portrayed.

Even vampires and werewolf legends may be based on the rare diseases, porphyria and xenodermaphobia, which made people avoid light and crave blood.

That kind of Halloween costumes and decorations may make it more difficult for people with special needs to be accepted in our society.

Horror Story

2010-10-30T09:17:00.000-07:00

I saw this link about parents of kids with special needs being told to take them to homeless shelters and and found it very upsetting.

http://www.msnbc.msn.com/id/39879832/ns/us_news-life/

Talking Machine

2010-10-27T14:17:00.000-07:00

In my last post I talked about a friend with a speech prosthesis who uses an Ipad to help him communicate. Soon afterwards I saw information about a company that make devices made specifically for that purpose. I don't know anything about them, and can't vouch for for the products, but in case anyone is interested, here's the website:

http://www.bindependent.com/gotalk.htm

IPad for Speech

2010-10-20T11:21:00.000-07:00

In January I blogged about my friend, Pete Kinney, and his voice prosthesis. Although the device sounds like a robot in an old Sci-Fi movie, it does allow him to talk after having a total laryngectomy.

Last week at a church meeting he amazed everyone by using a different device that allows him to speak in a normal voice. It's called .... an iPad!

Besides amazing the people at the meeting by saying things in a normal voice, he also amused them by switching to a female one to show what the iPad could do.

No, Pete can't connect it to his throat or mouth and talk through it, but he has set up lists of things he frequently needs to say and placed them in folders for the locations where they're likely to be used. When appropriate, he opens the folder, clicks on what he wants to say, and the iPad reads the words out loud. If he there's time, Pete can also type in specific things and have the iPad speak them.

I haven't heard him use it yet, but he probably has folders for his job, home, and church and maybe he has set up folders for frequent situations within those. For example, in a finance meeting folder he might have phrases like, "Where does that fit in the budget?" or "Can we afford it?" At home he might tell his teenage daughter, "Be home on time," or "Ask your mother" and when talking to his wife he might click on "I love you" or "Yes, dear." Maybe he also has a folder for things that might be said anywhere such as, "Hi," "Excuse me" and "Thank you."

While the iPad can't replace the prosthetic, it gives Pete the capability of sounding like other people a lot of the time. It's lightweight so it's easy to carry around and he also uses the other features it provides.

I'll bet the people who designed the iPad never thought it would be used in this way.

Rosa's Law

2010-10-16T10:09:00.000-07:00

A new law has been passed making it illegal for the federal government to use the term, "Mentally Retarded" in laws and documents. The law is named after a girl with Down's Syndrome and we hope it will help people with similar conditions.

It might.

However I'm afraid the newly acceptable term, "intellectually disabled" will soon have the same connotations as the previous one. For years the words referring to that kind of condition have kept changing. "Moron" was certainly insulting, and "mentally retarded" (which means slow or held back) was an improvement over that term. Later "developmentally delayed" was often substituted for that one, although the literal meaning is similar.

I wonder if the new term will include people with learning disabilities, autism, personality disorders, and mental illness, all of which could be considered intellectual disabilities. If so, some interesting legal problems may develop.

As long as the majority of people are uncomfortable with those who are different from themselves I don't think changing the terminology will make much difference. Prejudice usually results from fear and people's effort to assure themselves that they're safe because they aren't like "those" people and never will be.

We've come a long way since children with "intellectual disabilities" and many physical ones were sent away to institutions and their families could act as if they didn't exist. But there's still a long way to go before people with special needs are accepted in our society. Changing that term is one step in the right direction, but it's a very small step.

Choosing a Care Facility

2010-10-13T10:54:00.000-07:00

Sometimes we've done all we can do and it's necessary to place a family member in some sort of care facility. That might be a nursing home, residential school, mental hospital, or another similar place.

Since my husband worked for many years in a nursing home, I worked in a residential school for deaf children, and we had to find an appropriate placement for one of our foster kids and a nursing home for my mother I can suggest ways to choose the best place.

Most facilities have websites with helpful information, but those are designed to make them look as good as possible so don't base your decisions solely on them. Google the type of facility, "ratings," and the state where it's located. Read everything that comes up about the specific places in the area you're considering and take complaints seriously. While sometimes a complaint from a disgruntled person, like an employee who has been fired, might cause a bad rating that isn't justified, some facilities have repeated violations of the law or are run by greed rather than compassion and it's important to rule those out. If you see multiple help wanted ads for the same facility over an extended period of time they should be a warning that something might be wrong.

Obviously financial aspects and location should also be considered. Will health insurance cover care in the facility? How much does it cost? Is it important that the place be in a familiar locale or close to family who will want to visit? Can it provide the sort of care that's needed?

Once the inappropriate possibilities have been eliminated, it's important to visit each place in person before making a final decision. If appropriate, you may want to bring the family member needing care along, but it's probably better only to do that with a few places you've already decided are likely choices.

Nice furniture, beautiful decor and a beautiful view from the facility are pleasant, but don't make a lot of difference in the long run.

You can learn quite a bit by dropping in unexpectedly. Is there somebody near the entrance to check visitors in? Are you free to walk around in the building unsupervised, or is an escort required? If one is, do you feel comfortable with that person? For security reasons, you might be asked to return at a different time for a tour, and that's good.

As you walk around the building, or even if you're only allowed in the lobby without an appointment, be sure to use your senses. Do you hear teachers or caregivers yelling at children or residents? Are staff members chatting with each other instead of attending to their jobs? Do you see people sitting around with nothing to do? Allowing for the sort of conditions that bring them to the facility, consider their facial expressions. Do they look unhappy? If it's time for a meal does the food smell good? Does the building smell strongly of fragrances, often used to cover up other odors?

Ask to use a restroom and notice if it's clean or not, although people who live there probably won't use the same one. When you are allowed to tour the facility try to see into rooms other than those your escort wants to show you. Do the residents have access to attractive outdoor areas? Are there plenty of interesting activities for them to do?

You'll probably need to make an appointment with someone to discuss the possible placement. Of course that person's job is to make the facility seem appealing, but you can get a lot of helpful information from the meeting.

This kind of choice is never easy, but I hope this information is helpful to those who must make one.

Tying it Up

2010-10-09T18:47:00.000-07:00

Lately I've been posting a lot about my personal experiences with special needs. I didn't mention Chronic Fatigue Syndrome because I already blogged a lot about it here:

http://tinyurl.com/yd8v2qm

I also worked with lots of children who had special needs in various teaching positions. However I won't get into that here because anyone reading my posts now knows enough about me.

Clarifications

2010-10-06T13:27:00.000-07:00

After reading the comments on my last post I realized I need to clarify a few things.

First, almost no deaf people are mute. That word means unable to speak because of having no voice and Deaf people do have voices. Since they don't hear themselves, they tend to be very loud. The dining rooms at the school for the deaf were almost as noisy as a stadium during a big game.

I've only known one person who was born mute, although I have known a few others who had their voice boxes removed because of cancer or other problems. That mute little girl had deaf parents and nobody knew she had no voice until she entered grade school because her family used sign language at home.

I assume the person who commented was able to become friends with deaf people because he or she knew at least some American Sign Language. It's a good thing ASL is now recognized as a real language and taught in many schools.

Second, one of the greatest insults to deaf people is being told someone pities them. Members of the deaf community don't consider themselves disabled and, unless they weren't born deaf, don't realize what they're missing by being unable to hear. They see hearing people hold their ears or flinch at certain loud noises and are glad not to experience those sounds.

Third, there was nothing noble about us raising our foster kids.

Imagine that a couple fluent in German knew some children whose parents had rejected them because the kids would never be able to learn any other language but German. If the children seemed normal otherwise, it wouldn't be a big deal if the couple took them into their family. That's how children who could only use Sign Language seemed to my husband and me. Like many two year olds, children at the school where I worked often had tantrums because they couldn't communicate, but stopped having them once they learned to sign. We expected to keep the boys permanently and by the time we realized their tantrums had more serious causes, we considered them our own.

Foster Kids

2010-10-02T10:43:00.000-07:00

My husband and I raised three long-term foster sons in addition to our birth daughter. Because of confidentiality I can't go into details, but the boys had a lot of special needs. All three were deaf, two had vision problems, two had learning disabilities, two were diagnosed with ADHD, one had a seizure disorder, one was autistic, one had a personality disorder, and all three had emotional damage. Obviously they wouldn't have been in foster care without problems in their birth families, and being passed around from home to home would harm any child emotionally. One of them had also been abused.

People often ask us why we got and kept the boys since they had so many problems. When we married both my husband and I knew children whose parents didn't want them because they were deaf, so we decided to adopt deaf kids. For various reasons we weren't actually able to adopt any of the boys, but when we got them we assumed they would stay with us permanently and considered them our own kids.

As I mentioned in my previous post, at that time deaf children had usually been prevented from learning Sign Language. Many children in the school where I worked had frequent tantrums, which stopped once they learned to sign and could communicate their needs and frustrations. We assumed the two foster sons' tantrums were caused by the same thing, and by the time we figured out they had other problems we had already emotionally bonded with them.

All three boys left us for various reasons when they were in their teens. They are adults now and haven't lived with us for years, but we still consider them our sons and have stayed closely involved with two of them.

California School for the Deaf

2010-09-29T18:00:00.000-07:00

I started working at California School for the Deaf back in the 1960s. Most of the kids didn't know American Sign Language (ASL) when they first came to CSD. In fact they didn't know any language at all unless they had deaf parents and were consequently several years behind in learning other things. Since human minds are programmed to learn language in infancy and early childhood, it's much harder for children to learn any language by the time they start elementary school.

I was one of the first two counselors allowed to work with younger students in the lower school who knew ASL. Before that the teachers had punished the little kids, even those from deaf families, for signing because they thought if the kids couldn't sign they would try harder to learn to talk and lipread. Teachers would peek through the classroom blinds in the afternoon and watch the staff on the playground. If they saw counselors signing to the little kids they would get them in trouble. Those teachers were furious when the school hired me and the other counselor who could sign and let us teach the kids to use Sign Language.

Students with any hearing at all were required to wear hearing aids, even though those were pretty much useless for most of them. If the children had any residual hearing it was seldom in the speech range, so amplifying the sounds they could hear didn't help with communication.

The hearing aids consisted of heavy devices much larger than a modern cellphone which were worn in a harness on the chest and connected to ear molds by wires. Even hard-of-hearing kids hated those hearing aids and the students often tried to hide or break them.

The California School for the Deaf was similar to all the other residential schools for deaf or hearing impaired children in the USA at that time, and almost all deaf children were educated in similar institutions.

Of course people have learned a lot in the last 40 years, and I'm happy to say the education of deaf children has improved a lot since then.

Success in School

2010-09-25T10:54:00.000-07:00

Today we have a guest post from teacher Nicoline Ambe Ndiforchu about ways parents can help their kids do well in school. I think her advice is excellent.

“Too many parents make life hard for their children by trying, too zealously, to make it easy for them.”- Goethe

Every parent wants the best for their child. They want to make sure that their child has the right skills and tools to reach their highest potential, and excel. There are a myriad of things a parent can do to help their child excel. However, I think three things are particularly crucial if you want an excelling child.

1. Read to Your Child:

Reading to your child regularly brings them excitement, adventure and captures their imagination. It also builds literacy and language skills. Set aside 20 minutes a day to read aloud to your child from birth to 10 years old. If your child can already read, let her read to you and talk about the book. What is the story about? Why did a character act that way? What will he or she do next? Who was your favorite character and why? Did you like the ending of this story? Why? Children are excited to hear new stories and to learn how to interact with the text and pictures within the covers of a book. Early exposure to books and stories can create a lifelong love of reading and books. With consistency, your child will not be intimidated by large text in upper grades and college.

2. Provide a Quiet Environment:

A quiet and structured environment where children can focus and figure out their homework assignments is crucial for student success. A quiet home environment helps children to pay more attention and persevere with difficult tasks. It helps them build focus and independent thinking skills which will become invaluable in upper grades when the curriculum will be more complex. Assist your child to rely on their own mental resources so that even if you cannot help due to the complex nature of the content, your child would have developed the skills to effectively complete their own work independently. So turn of all cell phones, TVs and computers so your child can focus.

3. Encourage Independent Work:

Although it is important for parents to be involved in their child's homework, children should be left to carry the load of their own homework by themselves. You are not helping your child by solving their Math problems for them, writing their essays or doing their science project for them. If you are getting overly-involved in homework because of a concern that it is too difficult for your child, call or visit the child's teacher and share your concern. Eventually a child must take charge of her own learning. This means that you should "let go." In Middle school, high school or college, the content may be too difficult for you to help your child and you will want your child to be comfortable with sorting the information for themselves. If you have hitherto read to your child, provided a quiet environment and taught them independence, they should be able to do this work on their own without your assistance.

Conclusion:

Think about these three ways to help your child excel in school, and try to integrate them into your parenting. This is by no means an exhaustive list. Visit the blog to learn more at www.growthmentality.com or email nicoline@growthmentality.com.

Thank you very much, Nicoline.

Signing My Life Away

2010-09-22T16:00:00.000-07:00

In High School and college I had very little to do with Special Needs, but in my senior year of college I met some deaf teens at a church event, got an alphabet card from them, and taught myself to fingerspell.

After graduating I became a social worker, met, and got engaged to a young man. Social work wasn't my forte, so I went back to school to become a pastoral counselor.

My fiance knew I was interested in Linguistics and had some experience with people who had special needs, so he introduced me to his best friend, who was a Sign Language Interpreter.

To make a long story short, I married my fiance's best friend.

Actually that sounds much more interesting than the way it actually happened.

Charlie, the best friend, taught me American Sign Language, I dropped out of Seminary and went to work in the dormitories at California School for the Deaf. Both Charlie and I knew deaf kids whose parents didn't want them, so I suggested adopting deaf children. My boyfriend said he didn't want to have any children so I broke up with him. By then Charlie and I were sharing the responsibility of interpreting church services in Sign Language and had become good friends, but we didn't become romantically involved until several years later.

After marrying, we raised three deaf foster sons, but were unable to adopt any of them for various reasons, and we also had one birth daughter. Our careers changed over time but, because we still consider the boys as part of our family, Sign Language is still an important part of my life.

Cause of Autism?

2010-09-18T15:18:00.000-07:00

My husband, who was in charge of building maintenance in a medical facility, used to say when a system broke down and the experts couldn't figure out what was wrong it always turned out to be because two completely unrelated things happened to develop problems at the same time.

We know there's an autism epidemic and many people say that's because of immunizations and mercury. But scientific studies have failed to prove that and most kids with similar exposure haven't developed autism.

What if the kids who did become autistic also had another factor? Could it be digestive problems? Some sort of hereditary condition? A germ?

Here's something I think might be a culprit; fragrances.

Over the last 30 years more and more fragrances have been added to laundry, cleaning and personal care products, cosmetics, and even foods. Because of constant exposure, most people have become unaware of the smells and "odor eliminators" also add to the chemicals in the air. But some people get more exposure to them than others, and the chemicals used vary from product to product.

What if autistic kids were exposed to more than usual of certain fragrances in infancy, prenatally, or near the time when they were inoculated against certain diseases? Could that explain at least some of the increase in autism?

Invisible Illness Awareness Week

2010-09-15T09:50:00.000-07:00

An amazing number of people have chronic illnesses or other health conditions that others aren't aware of. I don't only mean people don't know someone has one of those conditions. Often they may not even know the conditions exist or believe they're real. I've heard many stories of people who can barely get through a typical day being chastised by others for using a disability parking space or sitting in a bus seat for disabled people. And often they're told the conditions that make their lives so difficult are "all in their heads."

Now something is being done to raise awareness that these conditions are true illnesses and people who have them actually are disabled. This is the first National Invisible Illness Awareness Week. To learn more about it please follow these links.

http://invisibleillnessweek.com/

http://www.blogtalkradio.com/invisibleillnessconf

Marin Society for Crippled Children

2010-09-11T10:58:00.000-07:00

When I was in high school I spent two summers volunteering in a recreation program for kids with disabilities run by the Marin Society for Crippled Children. One year it was held at Arequipa, which had formerly been a sanitarium for women with tuberculosis, and the other year the program was held at a school.

Most of the children attending had some sort of physical disability that required the use of crutches or wheelchairs. Some had become crippled (Yes, I know that term isn't considered acceptable now, but it was then) as a result of the polio epidemic that had killed my father. But there were two children who didn't fit in with the others because their disabilities were different and the second summer I spent most of my time with them.

One little boy did use a wheelchair, but he was also blind and had such severe brain injuries he could barely communicate. His condition was caused by falling out of a moving car when the door swung open. That was before seat belts existed.

The other little boy was physically active and deaf. He was obviously extremely smart. He loved to watch the TV show, Zorro and had learned to communicate with the gestures Zorro's mute servant used in the show. He was able to tell us almost anything he wanted, and to understand the gestures I and the other volunteers used with him. He was interested in nature and would ask us about the bugs and birds, but we couldn't communicate all he wanted to know.

At that time the Oral Method was still used in schools and deaf kids were forbidden to use gestures at all because it was thought that would motivate them to talk and read lips. At the end of the summer when the boy's parents found out he had been using gestures to communicate with us he was forbidden ever to watch Zorro again.

Years later I met someone who had worked with that boy when he was older and learned that he had been considered mentally retarded (another term no longer used) by the school district. If only he had been permitted to learn and communicate using American Sign Language he would probably have done well in school.

Harris Communications

2010-09-08T14:22:00.000-07:00

A friend of mine is having some hearing problems and, because of my decades of experience, I was able to direct her to a good resource. I'm not getting anything for doing this and I don't normally pitch products or businesses on my blogs, but I'll make an exception and mention that one here because others might also find the information helpful. The company sells all kinds of equipment, books, CDs, etc. to help people dealing with hearing loss, raising children who have that kind of condition, or just wanting to learn American Sign Language. The material varies in quality because they handle nearly every related product there is, but a lot of it is excellent. They have a hardcopy catalogue that only comes out once in a while so they don't flood mailboxes, and also an online one. The URL is http://harriscomm.com.

Convalescent Home

2010-09-04T14:39:00.000-07:00

This will be the last post about my time in the convalescent home.

After the first week I was moved to a unit generally known as "Runabouts" because all the kids there were mobile. I was one of the only two eleven-year-olds and all the others were younger, but many were from the inner city and more sophisticated than I was.

The kids had various kinds of conditions and, in most cases, I never found out what their disabilities were. Our physical activity was limited, we had to take boring naps every afternoon, and most of us were given meds often. Once the nurse came out and gave me my allergy shot in front of the other kids on the playground and they thought I was brave not to even to flinch. Of course I was used to shots by then and they didn't bother me.

Our classroom was similar to a one room schoolhouse, although there were actually two classes divided by age. The teacher was good and she thought I was smart because I could shelve books in according to the Dewey Decimal system, which I'd already learned while hanging out in the library at home.

We were cared for by nurses and, like teachers, they had different styles of working with kids. One was a pushover and the kids could get away with anything when she was on duty, one was just, plain mean, and my favorite was strict, but fair.

Although living in the convalescent home wasn't a bad experience and I had no asthma attacks while there, I was happy to be sent home at the end of my six week stay, which happened to also be the end of the school year. But the experience had changed me in ways I couldn't guess at the time. It helped me understand people who were different from myself and made me care about people with special needs for the rest of my life.

Gladys, A Deaf Child Who Changed My Life

2010-09-01T11:47:00.000-07:00

I posted this information long ago, but it's relevant to my recent posts about my own experience with Special Needs, so I'll share it here again with a few changes.

While in the Babcock Unit at the Stanford Convalescent Home I met a very cute little girl with big blue eyes and curly hair. Her name was Gladys, but I never heard her last name. The other new kids who had been there longer would grab my arm and pull me away when I approached the child, shouting, "Don't talk to her! She's Deaf!"

But Gladys and I communicated using facial expressions and gestures. Once she woke everyone up early by turning on all the lights. The nurses said, "She doesn't know any better," but Gladys let me know she did know she might get in trouble and I assured her I wouldn't tell anyone. Another time she asked me why she had no fingers on one hand and I told her I had no idea. (Back then the Oral Method was used in schools for deaf children and Sign Language was discouraged.)

The nurses told me her parents had brought her to the facility when she was six months old and they found out she was deaf and were never heard from again. How could anyone reject such a darling child?

I only knew Gladys for one week, but she changed my life completely. Because of her I volunteered with special needs kids while I was in High School, learned American Sign Language, went to work at California School for the Deaf, married a Sign Language interpreter, and raised three deaf foster sons.

I wish I could find out what happened to that little girl.

Stanford Convalescent Home

2010-08-28T13:49:00.000-07:00

In the last post I described the asthma I had as a child. When I was eleven years old I was sent to live at the Stanford Convalescent Home because of it.

Recently I did some internet research and learned the full title of the place was The Stanford Convalescent Home for Impoverished Children. I never thought of our family as impoverished, but we had very little money because my widowed mother couldn't earn nearly as much as men could in those days.

The first week they were in the facility all children, including me, stayed in the Babcock Unit. There were two large rooms full of beds. In one the children who were bedridden stayed. Many of them were not expected to survive.

I helped the teacher there by tutoring one little girl in reading. She was terminally ill and I was horrified at the idea that anyone might die before learning how to read. Perhaps working with her was one factor that later motivated me to become a teacher myself.

I slept in the other room with the infants, preschoolers, and other newly-admitted kids who, like me, were kept there for observation.

I'll share more about that facility in later posts.

Childhood Asthma

2010-08-25T12:29:00.000-07:00

I've mentioned before that I had severe asthma when I was a child, but never described what that was like.

I never coughed and was surprised to learn that was considered an asthma symptom in other people. Instead I always wheezed. Sometimes the wheezing was so quiet that it could only be heard with a stethoscope, although I could feel the gentle grating sensation in my lungs. Often the wheezing was so loud that it could be heard from the other side of the classroom. My wheezing made other kids uncomfortable and was probably one reason why I was often teased, although the mean kids never mentioned it.

But when I was having a severe asthma attack I'd not only wheeze loudly, but have to strain with all my strength to force air in and out of my lungs. Imagine what it must be like to use any muscle with all your strength for hours at a time and never take a break. Sometimes I'd even get painful cramps in my diaphragm, but I'd have to continue straining that muscle as hard as I could with every breath. Of course I'd get exhausted, but sleep was impossible.

Sometimes my meds would help reduce the severity of the asthma attack, but at other times my grandfather or mother would call the doctor. He'd drive to our home, which was a little cabin up a steep path from the road, and give me a "shot of adrenaline." Usually that worked and the relief of being able to take a clear breath was the best feeling I ever experienced.

But sometimes there would be no improvement for fifteen minutes. In that case the doctor would have to give me a second shot. And if that one didn't help, he would pick me up in his arms, carry me down the hill to his car, and drive me to the hospital where I'd be put on oxygen.

Now there are much more effective asthma medicines available and people can have EpiPens at home to use in case of serious allergic reactions. Since doctors no longer make house calls, that's important. But more people have asthma than in the past. I hope there aren't many who have asthma attacks as serious as mine used to be.

A Friend in the Storm

2010-08-21T13:51:00.000-07:00

My friend, Cheryl Ricker, gave me a copy of her new book, A Friend in the Storm. It's a gift book and would be helpful for people going through any kind of problems. Each selection includes an encouraging quotation from a well-known Christian, a relevant Bible verse, and a poem by Cheryl, many of which could be set to music. The book could be used as a devotional with one selection read for each of 45 days and would make a thoughtful present for someone dealing with difficulties.

Asthma Poem

2010-08-11T13:01:00.001-07:00

As a child I had severe, chronic asthma and was sometimes hospitalized and put on oxygen. Yesterday I found a poem I wrote for my doctor when I was twelve years old and will share it here:

Twenty thousand kinds of pills

Twenty times a day,

And they shoot me all the time to

Make the asthma stay away.

But my sheet is very wrinkled

And the pillow hurts my head

And my feet are getting tangled

At the bottom of the bed.

I listen and I listen

For her footsteps on the floor,

And I'm happy when I see that

Doctor Bennett's at the door,

For I know she'll fix the bed

so it doesn't hurt my head

And make my life worth living,

Now, once more.

She has a very pleasing personality, you know,

And she makes me well

When I am sick

And helps me grow and grow.

I'm always glad to see her

Even when I get a shot.

Most people make them hurt but

When she gives them, they do not.

Lots of doctors try to bribe you

With balloons and lollypops,

But I'm glad my doctor doesn't

Because I think she's tops.

Pillows

2010-08-07T13:31:00.000-07:00

Pillows, those comfy, soft things we sleep on or pile on our couches and chairs, can be helpful to people with special needs. In fact, quite a few are designed especially for that purpose.

I have one designed for people with neck problems and couldn't believe how much more comfortable it is than the ordinary kind. The indentation in the center and thinner padding below my neck are exactly what I need to help keep my neck pain under control.

Other pillows are designed for people who have sleep apnea and must sleep connected to an IPAP breathing device.

Some are designed to give back support for people with spinal problems and may even provide vibration and heating to help relax tense muscles.

There are pillows for people who must sleep sitting up or in certain positions, too.

I'm grateful for my pillow and think lots of other people must feel the same way.

Blindness

2010-08-04T12:39:00.000-07:00

A friend of mine who lost his vision due to macular degeneration has given me permission to share this poem he wrote with you.

SUBSTITUTION

Earl Leonard Langguth

My ears are now my eyes.

Alert to grasp the softest, slightest sound

Especially those sords yet whispered low,

So that my hungry mind may grasp the scene

I need to picture so that I might know

How things begin and end, and in between,

Create those portraits bright, precise, profound,

To make alive all that brief words convey,

Replacing what my eyes cannot portray.

My ears must be my eyes.

Sticking to Diets

2010-07-31T10:36:00.000-07:00

Some people have a hard time avoiding certain foods that cause health problems and are constantly fighting the temptation to eat "just a little bit."

I have many limits to what I can eat, but never feel tempted to cheat. This wouldn't work for people like diabetics who can eat small amounts of problem foods, but for anyone who must eliminate things from their diets completely, my method might help.

It's simple. I just define myself as someone who never eats the forbidden foods.

If I were having serious financial problems would I knock down some little old lady and steal her purse? Of course not. I'm simply not the sort of person who would do something like that.

If somebody suggested I try to get on a professional football team would I do it? Certainly not. I'm an old lady and never liked sports anyway. That wouldn't be me.

Either of those things would involve unpleasant consequences and so would eating forbidden foods. That's why I'd never consider doing them. I'm simply not the kind of person who does that. And, if you're on a special diet, I hope you can decide you're not, either.

Medicines May Cause Dementia

2010-07-28T18:04:00.000-07:00

I have quite a few friends dealing with family members who have Alzheimer's Disease or other forms of dementia. While those are typically harder on caregivers and loved ones than the person with the condition, none of us want to develop them. A recent study shows that commonly used medications, many of them available over the counter without prescriptions, greatly increase the likelihood of developing dementia. Here's a link to the story:

http://tinyurl.com/2cb2typ

Not Knowing

2010-07-21T18:19:00.000-07:00

Waiting for test results. Waiting for a diagnosis. Waiting to see if a treatment will work. Sometimes waiting can seem more difficult than the condition itself.

One of my college psychology professors said the hardest thing for human beings to bear is not knowing what to expect. That's why when people were brainwashed and tortured their captors made sure there was never a routine when they could expect the bad things to happen to them.

Often when people have special needs - or think they might have - they must deal with the unknown and that's not easy. But once they know the answer even if the news is bad they can cope with it.

Good Things About Special Needs

2010-07-17T14:37:00.000-07:00

Recently I've met several people with special needs similar to those I deal with and discovered that a couple of acquaintances also had some. All of a sudden I have a bunch of new friends.

I probably talked about this at Thanksgiving time, but why wait until November to count our blessings? Special needs can cause a lot of problems and difficulties, but there are a couple of good things about them. One is that they help us appreciate things that aren't limited. The ease of becoming good friends with others who understand what you're living with because of their own experience is another good thing. In my opinion, that's a very good one.

In the long run when we look back on our lives I think we'll realize that relationships matter more than health, wealth, status, or lots of other things.

Asthma and Tourette Syndrome

2010-07-14T13:50:00.000-07:00

Dianne Danzig, is a nurse and the author of books for children. She was kind enough to send this information for me to share here:

Regarding asthma - both of my sons have asthma and allergies and were diagnosed as toddlers. I'm also certified as an asthma educator and taught asthma ed to families for years, so asthma is important to me. Some good websites are below. One of my sons also has Tourette Syndrome, so I included a website for that as well.

1) http://www.aanma.org - Allergy and Asthma Network/Mothers of Asthmatics ("An-Mah")

- I used to volunteer for this organization. Offers practical information for families with children with asthma - with school, camp, sports, understanding meds, latest medical treatments/meds/products, questions for MDs. AANMA also is involved in Wash DC to educate legislators on the challenges of living with asthma.

2) www.aafa.org - Asthma and Allergy Foundation of America ("A-Fah", the first "a" is like the a in "mat")

- Also has excellent asthma education, info about consumer products like vacuums/washing machines/etc, referrals to support groups/allergists, info for health professionals, research, etc.

3) http://www.nationaljewish.org - National Jewish Health

- National Jewish is in Denver. Great place for diagnosis/treatment/helping patients learn about managing asthma. I especially appreciate its Lung Line - Ask an Expert service. For no charge, you can e-mail or call Lung Line and get info, even if you or your family is not being treated there. I called them a few times when the boys were younger and the nurses were really helpful.

Lung line --- http://www.nationaljewish.org/about/contact/lung-line.aspx

4) http://www.tsa-usa.org/ - Tourette Syndrome Association. Everything about Tourette - what it is, treatments, education, advocacy, public policy fundraising, support/referral, more.

Hope this is useful.

I'm sure it will be. Thank you, Dianne.

Dementia

2010-07-03T18:41:00.000-07:00

I know several people struggling with dementia. No, they don't have that condition, but people close to them do. That disability is one of the unusual kind that are a lot harder on other people than on the ones who have them. People with Alzheimers disease and some other kinds of dementia usually don't even know they're forgetting things, especially in more advanced stages.

Sometimes the condition is caused by medications, especially if someone uses lots of different ones. In such cases taking them off the meds may help their mental awareness, but caregivers and medical professionals must weigh the benefit of that against problems caused by stopping meds that may be for life threatening conditions.

I've heard that music, especially the kind played at emotionally important times in their past like Christmas can help the patients, although it is only temporary and certainly not a cure.

Someone who worked in a nursing home once told me when people with dementia start acting mean or angry they're likely to start wandering, too. In nursing homes bracelets set off alarms when people wearing them try to leave the unit. Perhaps motion detectors might help alert home caregivers.

If someone with that condition lives at home, the family caregivers have little or no freedom, even with part-time care by others.

The hardest part of dealing with dementia is that the person who has it is gradually lost to their loved ones, who must live with constant grief until the closure of death.

Corneas, etc.

2010-06-30T15:05:00.000-07:00

According to a recent news story, scientists have learned to grow new corneas from stem cells harvested from existing healthy cornea tissue and used this technique to restore the vision of people who became blind from burns. I guess the burns have something to do with the reason they couldn't just do cornea transplants.

I had no idea stem cells could be found in corneas. Apparently there's hope that other body parts will also be able to be regenerated from stem cells taken from healthy tissue in them. I assume that will only apply to simple parts, not things like entire arms or legs. It took many years for the cornea treatment to be completed so research about using the technique for other body parts will probably also take a while.

Obviously I have no expertise in this area and don't know what I'm talking about, but the discovery does sound hopeful. Here's one of many news stories about it:

http://tinyurl.com/28avjrb

Joni Eareckson Tada

2010-06-26T10:19:00.000-07:00

Someone who has done a lot to help thousands of people with special needs through her organization, Joni and Friends, is Joni Eareckson Tada. She is a quadraplegic herself so she understands the sort of things others must deal with. Yesterday I learned through the internet that she has recently been diagnosed with breast cancer and is requesting prayers. Here's the link:

http://tinyurl.com/32ztpo7

Bone Cancer

2010-06-21T18:34:00.000-07:00

Here's a news story I think everyone should see:

http://tinyurl.com/27ufe3d

Asthma

2010-06-19T10:14:00.000-07:00

As a child I had severe chronic asthma, often getting "shots of adrenaline" and sometimes being hospitalized and put on oxygen. I only knew two other kids who had asthma.

Now there are many medications and treatments that didn't exist back then, but there are many more children who have asthma. As a teacher I usually had at least one asthmatic kid in every class and I now know dozens of many adults who have it, too..

I've only known one person who died of asthma, but even for those with mild symptoms, asthma puts limits on their activities.

Why is it so prevalent?

Air quality is certainly a factor. The prevalence of fragrances in laundry detergents, cleaning products, etc., etc. makes those triggers of asthma attacks hard to avoid. Odor "eliminators," which fool the sense of smell and consist of chemicals themselves, are even more difficult to avoid since people don't know they are inhaling them.

I wish all people would be considerate of others who have that serious health condition and switch to unscented products.

Institutions

2010-06-12T12:29:00.000-07:00

Forty years ago and more, most people with physical or mental disabilities were sent to live in institutions of various kinds. Often their families had no further contact with them.

As a kid I spent a few weeks in a "convalescent home" because of my asthma and my mother drove several hours to visit me every week. But most of the other kids rarely, if ever saw their families. Some had been left there as infants and never saw their parents again.

As a young adult I worked at the California School for the Deaf and, while some kids went home every weekend, others only did so a few times a year when the school was closed for vacations. In some cases that was because the parents lived great distances from the school, but others who were closer didn't know Sign Language and couldn't communicate with their own children. Now I understand the school sends all students home every weekend and those who live far away stay with friends.

I knew some Deaf adults who grew up in a state hospital for "mentally retarded" when their intelligence was normal. They had even developed their own sign language in order to communicate with each other. Today they would never have been sent to an institution like that. And even the patients who are correctly placed in developmental centers usually have opportunities to go out into nearby communities if they can handle doing so.

Today people with special needs are likely to be seen anywhere and that's helping to overcome some of the stigma attached to disabilities. Things have certainly improved.

NU-Step

2010-06-09T09:33:00.000-07:00

Yesterday I attended an end-of-the-school-year karaoke performance by Nu-Step, a special education program for teens. It was fun! The kids did a great job and I especially enjoyed laughing at the funny parts. Even the teacher and aides were hilarious.

But what impressed me most was the sense of camaraderie between the adults.

Most of the people in the audience were family members of the students or staff. Many of them already knew each other and they all shared knowledge of what it's like to deal with special needs every day. It wasn't just an audience, it was a community.

Life is often not easy for people who must deal with special needs, whether their own or a family members. But the blessing of instantly connecting emotionally with others who have to cope with similar things is something "normal" people don't often get to experience.

Carol Guscott

2010-06-05T14:54:00.000-07:00

Here's another person I know who has dealt with special needs in an inspiring way. Her book isn't published yet, but should be wonderful when it is. Please go to:

http://tinyurl.com/2eeko7j

Be sure to watch the video.

Janet Perez Eckles

2010-06-03T15:03:00.000-07:00

Here's somebody I know who deals with special needs in a special way:

http://www.janetperezeckles.com/

You can see her in a video at http://app.talkfusion.com/fusion2/view.asp?NTUzNTM3_1303436

Fewer Posts

2010-05-29T13:07:00.000-07:00

I've decided to post to this blog less often, and only when I have something important to share.

Internet Resources

2010-05-26T12:06:00.001-07:00

There are lots of websites about various special needs. For example, here's one about a lot of neurological problems: http://www.irsc.org/disability.htm

Of course it's important to be sure the sites you visit are legitimate, responsible ones. Some are by companies or individuals just wanting to sell their own products or services and others are by individuals who are well-meaning but misinformed.

One of the safest is http://www. mayoclinic.com

Support groups for just about any condition can be found at http://groups.yahoo.com/

Again it’s important to be careful about what you read there. Members can post anything so there’s no guarantee the information is accurate. Also, it’s important that the groups be well moderated because members, who may be under stress because of the special needs they’re dealing with, might become upset about posts they dislike from other people. If you join an internet support group it might be wise to read past posts and lurk for a few days before participating.

But having immediate access to information through the internet can be a wonderful help.

Returning Problems

2010-05-22T12:28:00.000-07:00

People who have disabilities and special needs learn to live with them, and even the most unpleasant or painful conditions may eventually seem almost normal when they are always present. It's amazing how humans can learn to cope with almost anything. I guess we redefine ourselves and the world to assume that's just the way things are.

But consistency is essential to that kind of coping.

One of my college psychology professors said the hardest thing for people to deal with is not knowing what to expect. That's why prisoners who were tortured or brainwashed were kept guessing and never knew when their captors would be nice or cruel to them.

Some conditions can be under control or in remission, only to flare up or return, and that can be much harder to deal with emotionally than more serious consistent things.

And it can do more harm than good to remind people that "at least" they had time when they felt better and they already know how to cope. Please don't say that to someone with a returning or worsening problem.

ADHD, Autism and Organophosphates

2010-05-19T12:35:00.000-07:00

According to recent news stories, a connection has been found between Attention Deficit Hyperactivity Disorder and Organophosphates. The same chemicals have been implicated in studies with autistic kids. Those chemicals are used in some insecticides and often found in fruits and vegetables, especially celery, strawberries, and blueberries.

Years ago we had two hyperactive foster kids, one of whom was also autistic, and the Feingold Diet helped a lot to improve their behavior. At the time some people thought the connection was purely psychosomatic, but there were times when the boys reacted to things none of us knew they'd gotten. For example, once a cereal manufacturer changed an ingredient but continued using the old packages they had in stock so the change wasn't on the label.

I'm wondering if there could be some sort of connection between the salicylates that cause reactions in kids with ADHD and the organophosphates in the new study. Obviously they aren't the same chemical, but could one influence how people react to the other? Or could they both be found in some of the same foods? The new discoveries may open the door to new research that will result in helpful treatments.

In the meantime, I hope anyone with children who have those conditions will be careful to feed them only organic produce. And doing that with all young children might prevent the development of those conditions.

Can You Help?

2010-05-15T08:50:00.000-07:00

Many people with special needs do a lot to help others. Joni Eareckson Tada is just one of many.

But sometimes people who must live in assisted living or nursing homes feel worthless and become depressed because they don't think they can do anything to make a difference in the world.

They're wrong.

Expressing gratitude to a staff member can brighten that person's day, and perhaps they'll go on to do something else as a result that wouldn't have happened otherwise.

Other residents, especially grouchy or depressed ones, need some personal contact even if they seem not to want it. Just a comment now and then with no pressure to respond might help to cheer them up a little bit.

New residents often value having someone welcome them.

And people in facilities like that usually have time for prayer, which really can make a difference.

Parenting Children with Special Needs

2010-05-12T14:00:00.000-07:00

Fifty years ago people with special needs were rarely seen in public. Before the ADA people who used wheelchairs or had other mobility problems were often unable to go anywhere. Kids with learning disabilities were considered stupid and autism, if recognized, was considered the result of poor parenting. Unless they came from a deaf family children who couldn't hear were forbidden to use sign language, which meant they had almost no exposure to any language until their brains were past the age programmed to learn it. And children who had any kind of special needs were often shut away in institutions where their families had little or nothing to do with them.

Thankfully, most of those things have improved.

However having a child with a disability is still very stressful for parents.

Even though the people may know intellectually that they didn't do anything to cause the child's problems they're likely to feel guilty, and those who may have inadvertently done something that resulted in the disability struggle with terrible guilt.

The child probably takes a lot of time and attention away from other kids, and the extra care and expenses required because of their conditions can be difficult for the whole family.

It's not surprising that a lot of couples who have children with special needs get divorced, but a lot of them manage to stay together and have healthy family lives in spite of the problems.

What is their secret?

While there are no guarantees, the successful parents usually get help.

Sometimes school districts can offer advice and many of them will test children for learning disabilities and provide early intervention for three and four year olds.

Counseling can help parents forgive themselves and learn ways to deal with their children. Some may not have the time or money for counseling, but they manage to find support groups of other people who have similar situations. There are online groups dealing with almost any kind of special need and, if well moderated, those can provide advice, encouragement, and social contact with people who understand.

Some churches have special needs ministries and there are many organizations with local chapters. If parents can attend worship services or meetings while their kids are cared for by people who know how to do that safely, the respite means a lot. Camps and recreation programs for the kids can also offer respite care.

The parents' job isn't easy, but at least in our time many kinds of help are available.

Prenatal Drug Damage

2010-05-08T12:46:00.000-07:00

Once in a while in the 1940s we'd hear about people in the New York slums who became addicted to illegal drugs, but never imagined we'd encounter people like that in California. In the late 1950s I had a neighbor who was a Beatnik and probably used drugs, although I didn't know it, but only a few people were Beatniks.

Then came the Hippies and "free love."

When I worked at California School for the Deaf in the late '60s and early '70s quite a few of the students were known or suspected to have become deaf as a result of prenatal drug damage. The rubella epidemic that happened at the same time also caused prenatal damage, and sometimes women used illegal drugs and had rubella during the same pregnancy.

The kids who were born deaf as a result of the drugs and/or disease usually also had other neurological damage, such as learning disabilities, ADHD, autism, etc. and there were probably lots of other children in that generation who could hear, but had prenatal damage to their brains.

Now we have vaccine to prevent Rubella, but illegal drugs still abound. People are unlikely to remember to use birth control when they're high, so babies with resulting neurological damage are sometimes born today.

Of course there have always been some babies with prenatal damage, and I certainly don't want to imply that drug use is necessarily a factor. Also, a lot of conditions are diagnosed now that weren't recognized before. But the high number of people with those conditions is one of the many problems illegal drugs cause in our society.

Special Diets

2010-05-05T13:51:00.000-07:00

Do you know someone on a special diet?

There are all sorts of medical conditions that require food limitations so chances are good that you do, although you may not know it. Sometimes people are embarrassed to mention their health or perhaps the topic may never have come up.

Sometimes eating "just a little" of a forbidden food can cause a severe reaction, so if a person turns down something you offer please don't pressure them to try it.

It would be a big help for people on diets if everyone would list the ingredients of dishes they bring to potlucks. If a recipe is secret they don't need to be listed in a particular order.

And, if you invite somebody over to share a meal for the first time it's a good idea to ask if there's anything they can't eat and, if there is, to provide a substitute dish.

When you see somebody eating different food than others are having, or a person tells you they're on a special diet, please don't make a big deal of it. While getting used to new diets can be difficult, for people who have been on them for a while that's just the way things are.

Author with Special Needs

2010-05-01T09:40:00.000-07:00

From: Jessica Aday Kennedy

Date: April 29, 2010 8:04:48 PM PDT

To: Janet Ann Collins

Subject: Re: Interview Questions

Jessica, I interviewed you on August 26, 2009 about your condition as a ventilator dependent quadriplegic and you mentioned that you write full time. Can you please explain how you manage to do that without the use of your hands and arms?

It’s strange, but a person is considered a quadriplegic if they don’t have full use of both arms, hands and legs. I have partial use of my left arm and hand. I peck at the key board with one finger. I’m a triplegic =+)

Can you recommend any devices or software for other people who have similar physical limitations?

I’m stuck in bed many days. I’ve got a desk from www.ergoquest.com. It slides over my bed. When I’m not in my wheelchair I can still work.

I’m legally blind. I bought keyboard stickers. They let me have large letters on my keyboard I can see. Anyone with poor eyesight could use them. They’re about $10.00.

All MS Windows programs have disability features. They can make your icons bigger, allow you to press one key at a time (Shift and a letter pressed separately will give you a capital letter). You can move the mouse using the number key pad. The magnifier is the feature I find most useful.

I use TextAloud to read to me. It helps me in the editing process and to listen to email and the internet. It allows me to hear what I’ve written. Anyone that writes could use this tool.

Why do you write for children, and where do you get your ideas?

I’m the biggest kid that ever lived. I always am buying toys, watching children’s movies, playing games, etc. Becoming disabled allowed me to remain a child. I don’t have a husband or children of my own and revel in the fact I don’t have “grown up” responsibilities.

When I’m looking for things to write about the ideas can come from any where. For example, my book that was just released is “Klutzy Kantor”. I tried to think of what makes kids laugh. Tripping and falling cause a chuckle from everyone. Then I tried to think of what adults look for. A positive lesson and entertaining story appeals to them.

A smart, but awkward and clumsy kid may not easily fit in. So my character is a klutz, but smart. Who do I know that’s smart and a klutz? My sister is very smart and a total klutz.

I like fantasy fiction. I flipped through my monster manual from Dungeons & Dragons and saw the Pegasus. My main character became a clumsy Pegasus. I also ran across a leprechaun. The leprechaun became my nemesis.

My friend (she’s from India) told me a wacky riddle. I wound it into my story. I hope I succeeded in writing a funny picture book that kids and adults will enjoy.

How much time do you usually spend at the computer in a typical day?

I spend almost twelve hours on my computer every day. My coordination is poor. Half my time is spent fixing what my fumbling fingers have attempted to type. This interview will take at least two hours. It’s frustrating and probably the biggest hurdle in my writing.

I joke. “Be careful what you pray for, because God may give you the circumstances to provide you with the life experiences necessary to become “patient.” For this reason I don’t pray for patience.

Please tell us something about your books and where we can learn more about them and you.

Visit my blog at http://jadaykennedy.blogspot.com for writing and marketing tips or my website at www.jadaykennedy.com for information about me and my writing.

I have eight picture books under contract. I try to use humor and a style that will attract reluctant readers and boys.

All of my children’s books have a positive message, are Christian friendly, cater to boys and reluctant readers, and include a teacher’s guide as part of the book or for download on my website.

When I’m not writing for children, I write Christian and inspirational articles for adults.

Is there anything else you would like to tell our readers?

I’m running a contest/drawing to celebrate my fifth essay’s inclusion in a Chicken Soup for the Soul book. I will give one Chicken Soup for the Soul: Thanks Dad book to a lucky winner and if fifteen or more people leave a comment, I will give two away. Be sure to leave your email address.

You can gain double entries by announcing the contest at this blog and http://jadaykennedy.blogspot.com.

Here are the rules.

• Leave a comment at the two blogs for additional entries for each.

• Blog about the contest for two entries. (leave link)

• Tweet about the contest (leave link)

• Announce it on Facebook for two entries (leave link)

• For an additional entry announce the contest on Live Journal, Jacket Flap, Book Marketing Network, LinkedIn or another social network (leave link)

• The contest will end at midnight Monday May 3, 2010.

Thanks, Jessica. I'll mention your contest and review your book at http://onwordsblog.blogspot.com/

Shots

2010-04-28T22:33:00.000-07:00

As a kid I got allergy shots for several years. I've known other children who had to have regular injections because of diabetes and there are other conditions requiring frequent needles.

Nobody enjoys getting stuck, but there's an advantage to having it happen frequently; you get used to it and shots don't scare you. If you're used to them and don't tense up, they hurt much less so soon there's nothing to be scared about.

Once some other kids saw me get my allergy shot without flinching and they thought I was amazingly brave. Even as an adult, I've had people express admiration for my lack of fear when I get flu shots.

Needles aren't pleasant, but they not only can make a difference in people's health, they can help with self esteem, too.

Writing

2010-04-23T10:00:00.000-07:00

I recently got a sample of the artwork for my upcoming book, Signs of Trouble, which will be published this summer. No, the book isn't about American Sign Language, but about kids with learning disabilities. One of my already published books, The Peril of the Sinister Scientist, has a main character who uses a wheelchair.

I don't usually plan to write about characters with special needs, but they seem to pop into the stories anyway. I guess that's because I've known so many people who have conditions like that. And maybe my books will help kids who read them realize that people who have special needs are not that different.

Grief

2010-04-21T11:27:00.000-07:00

According to the Americans with Disabilities Act of 1990 a disability is "a physical or mental impairment that substantially limits ... major life activities."

Recently several people I know have died and the survivors who loved them are dealing with grief. That certainly substantially limits their major life activities, so perhaps grief should be considered a disability.

I'm not suggesting that people who have lost a loved one should be entitled to use handicapped parking spaces, but they should certainly be given allowances for being unable to accomplish things they usually can do. For example, employers should be understanding when the work of someone experiencing grief is not up to par and insurance companies should be willing to pay for counseling when it's needed.

Fortunately grief usually becomes less severe with time as people work through the four stages and eventually the effect on major life activities will be much milder.

Senses

2010-04-17T15:38:00.000-07:00

Everyone considers blindness or serious loss of vision to be a disability. Most people, except for the culturally deaf, feel the same way about deafness and hearing loss. And the inability to feel pain, as caused by leprosy, leads to infections and other serious health problems.

But many people don't realize that loss of the ability to smell, while not life threatening, can seriously limit life activities. I understand that kind of sensory loss is rarely permanent, except when caused by certain medications. But people with severe allergies and other conditions often have limited sense of smell at least some of the time.

Although our sense of taste lets us recognize basic sweet, sour, and salty flavors, it's the sense of smell that enables us to enjoy all the other aspects of flavor, so many people who loose that ability find it difficult to eat. Everything tastes boring to them.

Our sense of smell can also warn us of danger, such as detecting the odor of smoke or escaping gas.

The inability to smell things isn't really a disability, but it can certainly make life difficult for the people who must live with it.

Rosacea

2010-04-14T15:21:00.000-07:00

I've had bumps that are sometimes red on my cheeks for many years and never thought much about them. Yes, I knew it was Rosacea, but that seemed like a minor problem.

However a few months ago I learned the condition had spread to my eyes and also the insides of my eyelids. When that happens to people their eyes are likely to become red and irritated and the condition can sometimes cause blindness. Although that's uncommon, my doctor says I'll have to treat my eyes for the rest of my life to be sure to avoid it.

I've been doing some internet research about the condition and found these sites, among many others, which offer a lot of information:

http://health.groups.yahoo.com/group/rosacea-support/

http://rosacea-support.org/treating-ocular-rosacea-from-aao.html

http://www.rosacea.org/patients/index.php

According to the information on one of them, avoiding certain foods can help some people, so I'm planning to try that. It's one thing my eye doctor wasn't aware of.

Helminic Therapy

2010-04-10T09:00:00.000-07:00

Here's something interesting about the cause and possible cure for many conditions. Will it work? I have no idea. However it does make sense. http://www.helminthictherapy.com/index.html

Forgiving

2010-04-03T13:05:00.000-07:00

"Sometimes you just have to forgive God," said the pastor after I shared my problems.

What?!?! That didn't make sense.

I thought forgiving was what someone powerful might do instead of punishing somebody weaker, so how could I forgive God?

But the dictionary said the word "forgive" doesn't only mean choosing not to seek punishment, but also choosing not to feel resentment, and that was certainly something I could do. My kids still had disabilities and my health didn't improve, but my attitude certainly did and, as a result, I was able to handle the problems much better.

Asthma

2010-03-24T12:34:00.000-07:00

When I was a kid and had severe chronic asthma they didn't have most of the treatments available now. I used an "adrenaline mist" nebulizer that consisted of a glass tube with a hole at one end, a round section with tiny fine glass tubes inside and a small hole in the side. It also had a rubber bulb, and two rubber stoppers. My mother would pour some of the liquid medicine into the small hole on the side and plug the small hole with the stopper. To use the nebulizer I'd remove the big stopper from the end of the tube, place the open part in my mouth, and squeeze the bulb. Some of the medicine would become a fine spray, which I'd breathe into my lungs.

Since my asthma was severe I had to carry the nebulizer with me all the time, and that wasn't easy for a kid to do. It was about ten inches long, fragile, and if one of the stoppers got loose the medicine would leak out. But to me, it was worth it. When my wheezing was intense the relief the nebulizer provided seemed like a life saver, and perhaps it actually was since my asthma was so bad.

I haven't needed that contraption in decades, but I keep it in a box of sentimental things because it meant so much to me when I needed it.

CFS Heads Up

2010-03-20T11:05:00.000-07:00

Here's something I found out the hard way; people with chronic Epstein-Barr virus, like many who have Chronic Fatigue Syndrome, are much more likely than other people are to have allergic reactions to amoxicillin and related drugs.

Yes, I know the new studies show the disease may be caused by a retrovirus, but that doesn't change the fact that most people with CFIDS have or had one of the viruses known to cross the blood-brain barrier, and Epstein-Barr is one of them.

Special Education Teachers

2010-03-17T15:28:00.001-07:00

On my other blog, http://onwordsblog.blogspot.com I posted a message about teachers and that made me think about how much Special Education teachers deserve our appreciation. Although they usually have smaller classes, the amount of time they must spend filling out IEP forms and meeting with parents is overwhelming. And, because the needs of their students are all different, preparing lesson plans takes even more time than other teachers must spend.

Special Ed teachers may have the same students for several years. Depending on the needs of the students, they may not see a lot of progress, and can become discouraged about their jobs.

Of course some students with special needs are "mainstreamed." Some are integrated in regular classes, and the teachers working with them function a lot like teacher's aides with the other kids in the same classes. Others only go to the Special Ed teacher for part of the school day.

Often the parents of kids with special needs seem to expect their teachers to work miracles and teach their children to function at the same level as other kids the same age. Others are in denial that their children have special needs at all. Either way, parents can sometimes give the teachers a hard time.

Special Ed teachers have important, but difficult jobs. If you know any, please let them know you appreciate what they do.

Not Knowing

2010-03-13T13:02:00.000-08:00

When I was in college back in the 1960s one of my Psych professors told us the most difficult thing for humans to endure is not knowing what will happen. He said when prisoners were brainwashed the captors made sure to keep the torture unpredictable because otherwise the prisoners were better able to hold out against it.

Unfortunately, many people with special needs and their families are often in a position of not knowing what to expect. Will their conditions get better or worse? Will they be able to get the medical help they need or not? Will this new treatment be effective or won't it? Not knowing can be very stressful.

But different people react differently to stress and perhaps the difference depends at least partially on attitude. Expecting the unexpected can become the norm, in which case not knowing what will happen can be easier to deal with.

Maybe it works sort of like physical exercise in healthy people; repetition increases strength. After all, most people with special needs and their families have already dealt with things that would seem overwhelming to "normal" folks, but many of those things have become just another part of everyday life.

In weakness there really can be strength.

Moving?

2010-03-10T12:55:00.000-08:00

Sometimes people with special needs can't get the medical help they need where they live. This is especially true of people outside of urban areas since most hospitals that provide advanced, specialized treatment are likely to be in or near cities.

If only one treatment is needed people will go to the necessary place and return home within a few days or a week, but what if repeated or extended treatments are necessary? Is it better for families to leave their homes and move so one person can get care?

That depends on a lot of factors. Can they afford it? How difficult would the move be? Is the person needing care a child or an adult? Would family members need to change jobs or schools? Would it be possible for the person in need of care to stay in an assisted living facility? Could other family members stay with a friend or relative for frequent visits?

This sort of situation requires lots of decisions and isn't easy for anyone in the household, but it all comes down to one question; would the value of the treatment be worth it?

XMRV?

2010-03-06T11:47:00.000-08:00

People with Chronic Fatigue Syndrome (CFS,) also known as CFIDS or ME, are excited about studies showing a possible connection between that disease and a newly discovered retrovirus called XMRV. Some of the studies have shown a high correlation between people who have that disease and XMRV, but others haven't been as conclusive and all the results aren't in yet.

The good news is that more scientists are taking the disease seriously instead of claiming that it's 'just' psychosomatic. The bad news is that even if a definite connection is found, it will take a lot more time to discover a cure.

Many years ago I read a study showing that broken bones from skiing accidents healed faster than identical breaks caused by car accidents because the healing was influenced by the attitudes of the patients. In other words, broken bones are psychosomatic. I wouldn't be surprised if someday scientists establish a link between all illnesses and people's thoughts and emotions. However that wouldn't alter the fact that diseases are real and caused by viruses, bacteria, etc.

It's difficult enough for people to live with debilitating illnesses without being told the conditions are "all in your head" and they aren't really sick at all.

Even if researchers aren't able to find a cure for CFS it will be a great help to people who have it if the XMRV virus is definitely proven to be a cause.

Positive Thinking

2010-03-03T14:14:00.000-08:00

I've probably mentioned this before, but it's worth repeating. As someone who has dealt with many special needs of students, friends, foster kids, and myself, I've become aware of two advantages to having chronic illnesses or disabilities.

First, the limitations those conditions cause tend to make us more aware of and grateful for the things we can do and experience.

But, in my opinion, the greatest advantage is the mutual understanding with other people who have limitations even if they aren't the same as our own. Sharing the experience of realizing we're different in some ways from other people and there may be some things we can't do, but that we're still complete human beings who can accomplish a lot helps us connect at a deep level. Of course if our special needs are similar the connection is even stronger.

People who care for others with special needs can also connect at a deep level.

It's easy for us all to become friends.

Quickie

2010-02-28T13:20:00.001-08:00

I don't usually post on Sundays, but I just saw this u-tube video and couldn't resist sharing it with you. You'll probably need to copy and paste it to your browser.

http://www.youtube.com/watch?v=blE42I7CvMM

PTSD and Chronic Illness

2010-02-27T13:20:00.000-08:00

Post Traumatic Stress Disorder is an anxiety disorder known to develop after someone experiences emotional trauma, such as serving in a war zone or being abused, especially if the experience is repeated or continues over an extended period of time. PTSD is considered a chronic illness.

But a friend recently sent me information about an interesting scientific study showing that people with chronic illness may develop PTSD. The new information shows that people who must live with chronic illnesses which often appear suddenly; require major life changes; cause severe symptoms, sometimes including pain; and may require unpleasant treatments, are likely to develop Post Traumatic Stress Syndrome as a result.

That is unfortunate, but may not be entirely bad news. People who were considered emotionally unstable and told their illnesses were psychosomatic may be taken more seriously now that emotional problems are known to be a result rather than a cause of their other conditions.

Here are some relevant internet sites that explain more about the connection:

http://tinyurl.com/yj9stup

http://tinyurl.com/ykoo5q9

http://tinyurl.com/ydzt2dy

Brain Connections

2010-02-24T13:05:00.000-08:00

When I was a substitute teacher I noticed kids in special education classes often had siblings in gifted classes, and we know some geniuses also had learning disabilities. Einstein is a well known example. Obviously there's some sort of relationship between how their brains work.

I've wondered for years about how other neurological problems might be linked. Are personality disorders similar to learning disabilities? Might OCD (Obsessive Compulsive Disorder) be caused by a variation of whatever causes autism? What about Antisocial Personality Disorder and all the others?

According to Temple Grandin, autistic people tend to think in colors instead of words. I think in both and have no symptoms of autism so I'm not sure what Grandin says is necessarily true. But if it is, what does that mean for people with achromatopsia? Are rods and cones in the eyes connected or related to parts of the brain that operate differently in autistic people?

How is narcolepsy related to epilepsy in terms of neurological connections. And, do either or both of those conditions relate to learning disabilities, ADHD (Attention Deficit Hyperactivity Disorder) or mental illness?

Our brains are incredibly complex and I doubt that anyone has studied the possible relationships between all these things, but I'd sure like to understand more about how they work.

Asthma

2010-02-18T09:27:00.000-08:00

More and more people, especially children, are developing asthma lately. But with modern medical treatment that's usually not as serious a condition as mine was when I was a child.

I developed it a couple of years after my father had died because my mother became a chain smoker and our house was filled with smoke and tobacco odor.

Instead of coughing, I wheezed, almost constantly. Often during a bad asthma attack I'd be straining with all my might to breathe, get a cramp in my diaphragm, and have to continue forcing air into my lungs in spite of the pain.

I used my "adrenaline mist" nebulizer much more often than I was supposed to and the family doctor would sometimes scold me about that, but he'd still renew the prescription because I couldn't survive without my "breather."

Often my asthma would become so bad my mother would have to call the doctor. He'd come to our house and give me a shot of "adrenaline." If that hadn't helped in fifteen minutes he'd give me another. Usually that worked, but if there was still no improvement he'd pick me up, carry me down to his car, and take me to the hospital. My mother would follow in her car, I'd be admitted, and they'd put me on oxygen.

I know lots of children and adults with asthma now and the increased number of asthmatics may be due to air pollution. However none of the asthmatic people I know today have symptoms as severe as mine were. (I did know one teenager who had an asthma attack, kept exercising, and died, but that happened because he was high on illegal drugs at the time.) In general, most asthma is at least partially controlled by medications that didn't exist when I was a child.

But it's still a serious condition and I wish all nicotine addicts would get into recovery so nobody had to breathe second hand smoke.

P.S. I apologize for being off schedule this week. I'll be back to the regular Wednesday/Saturday posting next week.

Feet

2010-02-13T12:00:00.000-08:00

I once knew a boy who had worn shoes so much too small that his feet had become deformed. Fortunately that was correctable without the need of surgery because he was still young and flexible, but I understand in past years that sort of deformity wasn't uncommon.

However other foot problems can still cause a lot of problems for children and adults. Children born without toes may have balance problems and difficulty learning to walk and feet are easily injured. Even seemingly minor things like fallen arches can limit mobility in a small way, though most problems like that are correctable. (For help with minor foot problems I strongly recommend a book called Fixing Your Feet by John Vonhof.)

And there are many major foot problems that seriously limit people's lifestyles and are certainly disabilities.

Fortunately we live in the 21st century and many things besides crutches and canes now exist to assist with mobility problems. In past posts I've mentioned some of the contraptions like artificial hands that can be electronically controlled by the brain. While things like that are expensive and not options for everyone, foot problems are much easier to deal with than they used to be.

Lovelessness

2010-02-10T14:24:00.000-08:00

As Valentine's Day approaches and everyone is talking about love I thought of a boy I once knew who couldn't love anyone. Jake (not his real name) couldn't comprehend the difference between right and wrong or truth and falsehood although he tried hard to understand, and his parents thought that was one more learning disability. Doctors told them his violent tantrums were a result of ADHD and it wasn't until he was an adult that he was diagnosed with Antisocial Personality Disorder. People with that condition used to be called psychopaths.

Jake did prefer some people to others, depending on how much they pleased him. He was good at finding ways to control people psychologically, and enjoyed doing so. As an adult he became dangerously violent and he ended up in jail.

His parents felt like failures but it wasn't their fault. His personality disorder was the result of prenatal neurological damage they couldn't have prevented, and was no more something to feel guilty about than any other disability. His parents were loving people and did the best they could.

Personally, I feel sorry for anyone who is unable to love other human beings. While people with APD don't know what they're missing, that might be the worst disability of all.

Neurofeedback

2010-02-06T17:49:00.000-08:00

Recently I've blogged about contraptions that help people with various disabilities and results of severe emotional stress. Here's something I've recently learned about that's relevant to both topics.

Neurofeedback, also known as EEG (electroencephalogram) feedback is a way to help people control the bioelectric functioning of their brains. No, it's nothing like electroshock therapy. No electricity goes into the brain. Instead the electric brain waves are picked up by sensors and displayed on a computer so the person experiencing the test can learn to control them.

Acording to the information I've seen about this process, it may be used to treat many conditions including PTSD, autism, learning disabilities, ADHD, depression, migraines, and addictions. Some of these are still being tested, but the results seem hopeful.

I'll see if I can find out more about it and share what I learn here in the future.

Thin Places

2010-02-03T11:24:00.000-08:00

In the last post I blogged about Haitian orphans and some things that might happen as a result of the horrendous stress they've experienced. Any kind of serious emotional trauma can result in disabilities like Post Traumatic Stress Disorder (PTSD.)

Coincidentally, I recently got a review copy of a book by an author who shares her own childhood traumas and what helped her deal with them. Thin Places is not for wimps because, although Mary DeMuth manages to describe some things that happened to her without being graphic or using offensive language, the experiences are horrible.

But this book is a very positive one and reading it should give hope to people dealing with any sort of emotional trauma of their own. Mary DeMuth is one of the most courageous people I've ever met. Her integrity and compassion shine through this book, which reveals how her faith has helped her deal with all the traumas and difficulties in her life. In Thin Places she uses them to glorify the God who has helped her through it all.

If you're interested in reading the book you can find it here: http://tinyurl.com/Thin-Places and learn more about the author at her website, http://marydemuth.com/

Childhood Trauma/ Orphans from Haiti

2010-01-30T10:15:00.000-08:00

On my other blog, http://onwordsblog.blogspot.com I shared information about someone who is helping families who adopt orphans from Haiti. Like soldiers returning from a war, children who have lived through disasters may have emotional problems that last for a long time. Fortunately, children, especially young ones, are more resilient than adults, but the traumas they’ve experienced may have effects that last a long time.

Here are some things the adoptive parents of earthquake orphans might want to know:

Sometimes kids whose parents die are very sad, but they seem to deal with it okay. Then, many months later when they've experienced the permanence of death, they'll suddenly fall apart. That happened to me when my father died. I was six years old when it happened and eight months later I read a book where an animal died and sobbed for hours. Nobody, including myself, knew why I was so upset, but I was actually grieving for my father.

Another time something triggered one of my preschool students, whose father had died about seven months earlier, to do the same thing. This time her mother (whom I'd called) realized why the child was crying and helped her talk about her feelings. If something like that happens with adopted orphans I hope their new parents will recognize that they're grieving for what happened because of the earthquake and encourage them to talk about it.

It isn’t easy for children who have been through traumatic experiences to learn a new culture and language. When I was young I knew a boy who had come to America from a Nazi concentration camp. Soon after he arrived when he was only beginning to learn English he completely forgot his native language. It’s not impossible that some orphans from Haiti might have the same thing happen to them.