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…

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?

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?

 

Access to Medical Care for Adults with Intellectual Disabilities

Recent news stories point to the decreased access to medical care because of less availability of primary care practitioners, especially those willing to take on Medicaid and Medicare because of reduced reimbursement rates.

This from an article in the New York Times today: http://www.nytimes.com/2011/06/27/health/policy/27docs.html

“In a recent study, the Massachusetts Medical Society found that 53 percent of family physicians and 51 percent of internal medicine physicians were not accepting new patients. When new patients could get appointments, they faced long waits, averaging 36 days to see family doctors and 48 days for internists.”

“Most doctors accept Medicare patients, who are 65 and older or disabled. But many say they do not regard the government as a reliable business partner because it has repeatedly threatened to cut their Medicare fees. In many states, Medicaid, the program for low-income people, pays so little that many doctors refuse to accept Medicaid patients. This could become a more serious problem in 2014, when the new health law will greatly expand eligibility for Medicaid.”

Some people might not be aware that most severely intellectually disabled people, such as those with severe autism, usually are dependent on Medicaid for their health care as well as for many other services (such as residential).  Many are also “dual eligible”, using both Medicare and Medicaid.

It is almost impossible right now to find adult primary care for those adults transitioning from their pediatricians to adult health care services.  Many stay with their pediatricians or utilize the Emergency Department for any health care needs that they might have.  Routine health maintenance is not done and there is no primary prevention.

When I asked a hospital group about ordering and performing mammograms on women with intellectual and developmental disabilities they were stunned because they really had not considered this problem.  Once it was pointed out, however, they were very interested in exploring solutions.  And this was a group specifically set up to examine and address access problems for the disabled.

Our adults with severe disabilities due to autism are facing discrimination above and beyond what the merely physically disabled face.  And the tsunami has not yet arrived.