Autism and Dementia: Christmas Memories of my mother

When my daughter was born, we did not know yet that my mother would soon be sliding down into dementia.  Around the time that my daughter lost her speech and the word “AUTISM” became a regular part of the family vocabulary, we began to notice that Mom’s cognitive skills were also in decline.  Both responded to music; both had unexplained anxieties; both were thrilled with the small traditions of Christmas, like the singing moose Santa we brought out every year.  Near the end of her life, almost any word would summon forth, from the thinnest of remaining memories, a song.

This short piece is a response to a fellow blogger who offered a “Christmas Contest” for memories of mother in 100 words.  As I find it difficult to remember my mother with any objectivity, I decided to write my answer and this is it.

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.

Weekend with Irene

Everyone is talking about the “hype” of the hurricane coverage in the media and by the politicians.   I suppose if you did not actually experience a major storm, then you would feel somehow robbed; robbed of your end-of-summer weekend, robbed of your piece of mind, robbed of your ultimate hurricane life experience.

I am glad that we were warned of the potential for disaster even if that disaster did not actually befall our family and place.  When you constantly worry about another person (who is incapable of worrying for herself) then, it helps alleviate anxiety to be over-prepared.

In order to alleviate my own anxiety, I brought my daughter Lily home to Maine with me and we spent the entire weekend eating and sleeping and not worrying.  The actual storm, although less than initially predicted for us at the coast, was, nevertheless, quite spectacular to watch from the windows as the wind built and changed direction and the waves grew and the rain came in waves and sheets.  We have a generator so when the power went out for an hour or so we just kept on watching the animated video and talking on Skype to Lily’s Dad.

However, I do not think I was prepared for the kind of devastation people are facing in Vermont right now.  They probably did not think it could happen to them, either.  I know of friends who are completely isolated because of road wash-outs.

Are we really in for worsening weather patterns now because of climate change?  Or is this really just our time in the cycle for bad weather?

No good deed goes unpunished

I have written before in this blog referencing the ongoing New York Times reporting of abuses in the New York State Office for People with Disabilities.  Now, in this article today, the issue is: Why is the state punishing the man who is reporting the abuse?

http://www.nytimes.com/2011/08/22/nyregion/cuomo-administration-continues-to-pursue-case-against-jeffrey-monsour.html

It is, of course, possible that we do not know the whole story.  It seems to me, however, to follow a pattern that is all too common in these whistle-blower cases nation-wide; the whistle-blowers lose everything and the evil-doers are never punished.

Let’s hope that in New York the good deeds of this direct care provider serve to force the system to improve and that he will  “go unpunished”.

Fire: Please be aware for your children with autism.

Recently I heard of a boy suffering from severe autism who had a fascination with fire and was burned on 60% of his body when he walked into a fire pit in his family’s backyard.

Some might question the competence of parents who allowed this to happen.  Those of us who are familiar with this issue know otherwise.

I am reminded of the two incidences that resulted in our banning of candles from our house forever.  The first time my daughter erupted in flame was at a friend’s birthday party.  We were toasting with champagne and I realized that LL was mesmerized by a candle on the mantle-piece. Before I could take the one step behind me to reach her, the flames were on her bangs and there were small blisters on her forehead.  Luckily we were able to put this out in a hurry and apply ice and she was not permanently disfigured.  She did not learn from this and the next year, on her birthday, she did a face plant into her birthday cake, candles and all.  Only the quick reaction of her uncle, sitting across the table from her, averted a catastrophe.  The singed bangs grew back in and she is as lovely as ever.

I think we should have a public warning go out to all parents and care-givers to be especially aware of the risks of fire and the potential for severe injury.  This may be as common as “wandering” and cause as many deaths and suffering families left behind.

I would be interested if  anyone who happens to read this knows of any children or adults with autism who have been injured by fire.

Health report card

The Affordable Care Act, or, for those tea partiers out there, Obamacare, has made some changes to how health care is funded and tracked. Many of these changes are apparently still in the administrative phase in terms of setting the regulations and rules that pertain to medicare, medicaid, provider reimbursement and the like.

The recent “Health Report Card” given to Massachusetts in a report by the Boston Foundation and NEHI can be seen HERE.  This report gives the state’s efforts at healthcare reform in primary care a “C” grade, stating that “the state’s health care reform and health care payment reform strategies have not as yet put the expansion of highly coordinated, team based care at the center of plans for improvement”.

Those who work in medicine for the developmentally disabled adults in Massachusetts see this as a turning point.  Perhaps we can be successful in building a new, coordinated system of care based on a team of providers that will result in more “wellness” and less emergency department visits.

The existing system is very entrenched and the new policies will have to contain incentives that no one will want to refuse to be successful.  Monetary incentives are not enough.  We need to make it easier to navigate the system for individuals, for agencies that provide direct care, and for the health care providers themselves. Better communication between all parties, better education and health literacy, and healthier environments must be included.

Massachusetts was given an “F” in the area of Public Health Funding.  Severe budget cuts on the state and federal level have the potential for weakening further efforts at prevention of chronic disease and the reduction of long-term health care costs.

If Massachusetts cannot lead in this area, what hope for the rest of the country?