Penn State, Friday Night Lights: Lessons for the Disabled Community

With all the opinions voiced about the Penn State scandal and who should have told or shouldn’t have and all the money and college athletics politics involved, many have lost sight of the facts of how and why the children were targeted for abuse in the first place.

Disadvantaged children, like disabled children,  are so much more vulnerable to this sort of thing.  Did the boys have anyone at home to tell of their experiences who would have believed them?  Were they also targets at home?  Hungry for love and attention, did they trust this sexual predator like a father figure and not want to lose him, even though they did not like what was done to them?  Was he a kind man,  under other guises, a man they trusted and looked up to and felt safe with?

Disabled children and adults are often not able to tell of their experiences with abuse, and, if they do find a way, are often not believed.  The abusers are then able to make their lives even more miserable.

There was a recent story in the New York Times, part of the long-running expose of the New York State department that cares for the disabled, that details how the whistle blowers names were not kept anonymous, despite State laws requiring it.  The workers making complaints were retaliated against by their supervisors and punished for coming forward, while the perpetrators went completely unpunished.

The grad student who reported seeing the abuse that he witnessed in the locker room to Joe Paterno was lucky that he kept his job.

Joe Paterno, aged though he is, if he was the coach they all thought he was, could have seen through all the layers and done the right thing.   A Daily Beast article, (here), by Abby Wolf, so wonderfully compares the Penn State actions to what the coach from Friday Night Lights might have done; the character building coach would have struggled, but his own higher standards would have prevailed.

(In case you do not watch TV or are unfamiliar with Friday Night Lights, the TV series captivated many American football widows who would not normally have enjoyed the games but were captivated by the characters of a small city in Texas and their football coach.)

I wish I knew that such a man existed in the agency running my daughter’s program; a man who would call the police and not cover up abuse.  Where are the Coach Eric Taylors in the real world?  Are there any in your life?

Eyes Like Lithium

I recently came across this piece http://www.utne.com/print-article.aspx?id=2147491704

(via Long Reads, from the Utne reader http://www.utne.com/Mind-Body/Eyes-Like-Lithium-Brother-High-Functioning-Autism.aspx,)

Eyes Like Lithium, by Danielle Cadena Deulen, is  a moving story describing many facets of living with autism from the point of view of the sibling of a boy with high functioning autism.

Some of us, parents of children with “low-functioning” autism, have expressed annoyance and resentment about the terms “high” and “low” functioning  as it relates to autism.  The “high” functioning camp seems to have hijacked the conversation, just as parents of the more mildly learning disabled children entirely monopolized a Parent Action Committee meeting at an elementary school that once considered integrating my daughter into its midst. ( They came to their senses as soon as they watched her climb the conference room bookcases, however.)

The vulnerability of these children, to those who have no tolerance for differences like autism, the vulnerability to the bullies of the world, at home and at school, is perhaps more intense for those who are “high” functioning, who have speech and are more able to be integrated into schools and communities.  For those children without speech, perhaps they are not seen as even worthy of the effort it takes to bully,  or they are so different that they are feared more, or maybe it is that they actually become invisible to their would be tormentors.

That does not mean that I think bullying non-existent for those with lower function. ( But what does that really mean, high and low?  It refers to IQ, as measured in the very questionable IQ tests, and also to one’s ability to function in the world.)  The bullying exists, I am sure; but, the ability to report the bullying  does not.

I have a great deal of sympathy for those with “high functioning” autism.  Their ability to “tell all” helps the rest of us to understand what someone like my daughter is unable to tell: that they love; that they hurt; they have fears and dreams; that they are, also, human.

Mourning does not become me

Your child with autism is not the child that you thought you would have.

Following a twitter link, I came across a book, “Following Ezra” by Tom Fields-Meyer, that deals with how he has approached his child who has autism.  There are also interesting comments on his blog.

The question posed is whether or not you should mourn for the child you did not have. The author of the book has a refreshing view; he tries to celebrate the child that he does have, instead.

After many years of effort, I have been able to approach that attitude with some success.

When you give birth to a baby that is, from the start, not quite right in some way, you can grieve, accept and move on to face the challenges ahead.  However, if your baby seems quite lovely and intelligent and you lose her to autism at the age of 1 or 2, then it seems as if the child she was has died.  You have no time to mourn her death because you are thrust into dealing with enormous challenges.  You push the feelings aside and try to keep your head above water searching for answers and trying therapies, dealing with the day-to-day.

Once in a while you can glimpse that former child in the child you have; there is always the hope that you can get her back.  So you put off the mourning and accepting a bit longer.

When I have allowed myself to mourn, (or wallow in the grief more like), it can be paralyzing.  My thoughts become circular and pointless and I am unable to productively deal with the crisis at hand.  And there is always a crisis.

That is the challenge: to break the attachment to the hope that you will get the first child back and relish the rewards of who she has become.  Or not become.  Not riding around in cars with boys, not taking illicit drugs,  not doing the scary things we associate with teenage girls.

And when you do follow her around you find someone who is quite lovely indeed.

Health Care Disparities: Not just for the Physically Disabled

Adults with intellectual and developmental disabilities suffer from health and health care disparities that are not addressed in most discussions of this topic.

Many studies document disparities in access and quality of health care and the resulting health problems for minority and disadvantaged  populations.  The ADA highlights issues for those with physical disabilities. However, there are few published studies documenting the increased morbidity and mortality of those whose disabilities are less vocally obvious, for those who cannot speak for themselves.  I am attempting to add my voice to speak for them as best I can by speaking with and educating physician and hospital groups.

The current issue of the magazine Health Affairs is devoted to Health and Health Care Disparities HERE.  The following abstract addresses the issue of disabilities in general.

  • Fifty-four million people in the United States currently live with disabilities, notes author Lisa I. Iezzoni of Massachusetts General Hospital, who says that eliminating health and health care disparities in this population should be a national priority. The number of people with disabilities is set to grow substantially in the next 30 years as the baby-boom generation ages and children and young adults face complications related to overweight and obesity.  People with disabilities confront disparities in their use of preventive and other health services, and health care professionals often get little training in how to care for people with disabilities.

Eating with Autism-2

There is controversy around the various ‘bio-medical’ treatments of autism and one of the most controversial areas is diet.  Many parents and physicians think that their children with autism are helped by restrictive diets of one form or another, the most common variant being the gluten-free/casein-free diet. Others include Feingold diet, the Specific Carbohydrate diet and the low-oxalate diet.

A recent study of the nutritional issues in autism can be found HERE.

When my daughter was  in her late teens she developed symptoms of anxiety: pacing, increased tantrums, aggression toward some of her teachers and upper GI symptoms of regurgitation and belching.  The neurologist recommended trying medication with risperidone.  I was not ready to make that leap at the time and the school did not approve of medications for behavior control anyway.

The school did not approve of  restrictive diets and supplements either.  Their method was to increase the student’s tolerance for a variety of foods by slowly encouraging new tastes, smells and textures.  Many children with autism are undernourished because of multiple food aversions and self-restriction.

After I attended a conference on the bio-medical treatment for autism put on by the group Defeat Autism Now! (DAN!),  I thought that it could not hurt to try some diet and supplement changes to see if it would help.  The school was willing to try the gluten-free/casein-free diet for 3 months and we also gave her some vitamins C and B as well as a balanced fish oil supplement.

The short story is that her behavior and happiness level improved immensely with this small change in what she ate.  Even her teachers admitted that she was able to control herself more easily and that she was able to concentrate longer in class. We added some digestive enzymes and things continued to improve.   When the neurologist mentioned trying a low-glycemic index diet for seizure control we instituted that as well.   Her last year at school was her best ever.   Her noise aversion disappeared and she was able to enjoy bowling for the first time.  She began learning to use a communication device and was more connected with people and more social.  Her gastrointestinal symptoms improved and she was more purposefully energetic.

The longer story is that when she transitioned into the adult world they refused to continue her diet  and despite many attempts to change things we have been completely unsuccessful in instituting even a reasonably healthy diet at her house.  We think we are making headway, we get nutritionists and dietitians involved, we get a commitment from the Agency to provide the diet (which is prescribed by a physician), then the staff at the house changes and all is lost to the wind.

Now, sadly, we have been forced to go the medication route anyway and are dealing with yet another set of side effects.  We are also changing seizure medication; tapering up and tapering down.  And we have yet another house manager to educate about food.

I am in constant awe of the parents who have been able to keep their children at home, who have control over what  their children eat and how they are treated.  It is extremely difficult to maintain these restrictive diets even at home and it takes maximum dedication and caring to do so.

So stop making fun of those over-protective moms who won’t let their kids eat the birthday cake; support them instead and be glad you do not have to do it at your house.

Eating with Autism-1

One of my favorite measures of “well-being” is eating and appetite; when we are happy and contented, most of us enjoy eating and sharing meals with friends and family.  When anxiety and depression set in, this simple and universal pleasure is lost to us.

A recent piece in the New York Times shows families of all types eating together and enjoying the “feeling that everything is going to be all right, if only for the moment”.  The photos are by Stephanie Sinclair and text by Sam Sifton.

Our family, like many these days, does not gather together often enough because of international travel for work and the life styles of our extended families. We did recently have my husband and his three siblings gathered in our house and our daughter who has severe autism was able to join us.

We had been warned by her staff at her group home that she had been unstable and dangerous after a recent medication change.  They advised us not to bring her home for this gathering.  What a mistake that would have been.  In the loving arms of her family, eating, talking and laughing about good memories, her anxieties melted away and we enjoyed the best times for a long time, all with family.

If only we did not all live on opposite ends of the earth…

911 at an International School for Autism

Today, 9/11/11,  it is natural to feel the need to commemorate the ten-year anniversary of 9/11/01. Listening to the radio, watching the news, checking Twitter and NYT apps, I am taken back to that week along with everyone else.

The day before the attack, we took our then 14-year-old daughter back to school after the 4 week-long summer vacation. We were exhausted and already missing her.  Her school was the Boston Higashi School, an international school for autism with students from all over the world, all religions and all classes.  We had all come together to find something that worked for our children.  “Education from the Heart”, the school fostered self-esteem and self-control through a balanced program of physical education, art and music.

During opening ceremonies that day, I cried, as usual, singing our national anthem and facing our flag.  Not a traditional patriot, I am nonetheless a strong patriot and what I saw before me exemplified the ideals that I love most about America.  There were parents with head scarves, turbans, saris, wigs and hats, t-shirts with slogans and 3-piece suits.  Muslims, Hindus and ultra-orthodox Jews mingled with Japanese and Chinese and Hispanics.  The typical Boston area white Irish-American was also represented along with all kinds of languages and cultures.  This was why I loved America, here, right in front of me, on this gym floor!

The following day I was back at work, focused on a difficult procedure in the operating room when the circulating nurse came in and announced the first plane hitting the World Trade Center.  When the second plane hit and we knew it was terrorism, my first thought was “those f…ing taliban, we should nuke them”; this from a pacifist and buddhist, my visceral reaction to the terrorists.  How dare they try to ruin my utopian vision of the perfect America!

Ten years later: I have not left the USA since George Bush invaded Iraq.  It is not fear but embarrassment that keeps me home.  Torture, untold numbers of civilian deaths, a divided country here at home, these are my terrorists now.  It is not likely that we will win this “war” in my lifetime.  The terrorist act may have succeeded; it has changed my view of America forever.