Autism and Empathy, the Fixers and the Huggers

Autism and Empathy, the Fixers and the Huggers.

As I read the piece noted above from Autistics Aware, I thought of how well my daughter reads my moods. When I am completely overwhelmed, she actually looks at me with sympathy in her eyes and refrains from any button pushing games, like raid the refrigerator. When I am sick and ask for her cooperation, she always gives it. When I need a hug from her and ask for it she submits to my arms.  When she hugs, it is usually from excessive anxiety although others interpret the hug as affection.  We “neurotypicals” crave affection from our children who have autism and will take it any way we can get it.

Thank you to this blogger for telling us about the inner world of autism that my lovely daughter is unable to share yet.

 

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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.

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.

Choosing life for you and your child

In this Age of Autism piece,  a parent bravely shares the experience of making the decision to send his child out of the home to live elsewhere.  As I was reading, and crying, I was also remembering the time I had to make the same decision.

LL was 11 years old and I was trying to work full-time as an Obstetrician, including over-night call, while my husband lived and worked in Russia.  I had a Nanny who would stay over when I was at the hospital and take LL back and forth to school.  We were on vacation in Florida, Lily was having a melt-down about something, going to bed, I think, and  Nanny said to me: “You should put her in residential school. She is autistic after all”.  I really blew up at her at that.  Nanny left to visit her boyfriend and she was supposed to meet us at the plane for the flight home; we never saw her again.

When we were home in Boston, I tried to hire another Nanny.  The agency sent me a girl with narcolepsy. At that point started to think about my life and LL’s life and how we were doing together.  When I was not on call at the hospital, I often did not sleep because LL did not sleep.  And she was getting bigger; always strong, she was able now to overcome me physically when I tried to prevent her from emptying the refrigerator at 3 AM.  When I was working at the hospital, I was not sleeping either.  Sleep deprived people tend not to have the same level of patience as they would like and do not often have enough energy to provide the teaching and guidance required for difficult children.  So she was really not getting what she needed and I was certainly not getting I needed.  We were both losing out.  After much agonizing and discussion, LL went to the residential part of her school.

Her teacher, who was very attached to her, told her that if she behaved really well Mommy would take her back home.  The school asked me to leave her there for 3 weeks before I visited (agony) and when I did finally visit LL was perfectly behaved and you would never have known that she had any behavior issues.  She kept looking into my eyes as if to say: “Now that I am so well-behaved, may I come home now?”

Every time I took her back to the residence I talked to her about how it was for the best;  every time we both were miserable.  But, I felt I had no choice. Teaching a child with the high level of needs that she had while trying to work is nearly impossible without an equally high level of support.  I could not do it alone even if I did not work.  I did not know how to parent and teach her at that level. I so admire the parents who do keep their children at home and are able to be both parent and teacher.  I wish I could have done that and feel guilt to this day that I was not up to the challenge.

We as a society need to give more support to our families; more training, more “respite”, and more understanding.  Parenting is hard enough with “typical” kids; when you add the sometimes life-threatening behavioral issues plus the speech and communication issues plus the medical issues it is most-times overwhelming.