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.

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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-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.

 

Spring

For the past two months I have been dealing with my daughter’s annual spring decline. We seem to have a couple of months in the winter when she is fairly predictable in terms of behavior and we can safely take her out to dinner and plan family outings.  We then think that whatever support or intervention we are doing at the time is working. Then she gradually becomes more anxious, has increasing bowel issues and regurgitation, and she starts having outbursts of aggression seemingly out of the blue. Usually the physicality is towards herself with hitting herself in the face and pulling her hair out, screaming at the top of her lungs. The neighbors think we are beating her I’m sure and I’ve seen their little boy look at us with fear and then run back inside his house quickly.

Then sometimes the aggression is directed at the random person in her line of sight or who might go to her to try to keep her from injuring herself severely.  Then that person gets the biting, grabbing and hair pulling.

In the last month the police have been called to help subdue her four times. This has never happened in all our lives together. None of these times was she home with her family. That makes it easy to blame the staff at her house for not doing their job or for possibly treating her badly. However, I have also been in the situation where people have asked me if I want them to call the police and I have declined their offer. I know how scary and sudden these attacks can be. I have read news stories of parents of adults with autism being killed by their at-home children.

Not wishing to be written about in this way, I finally suggested that we try some medication to help Lily to help herself. She is always very sad after these episodes and it is clear that she does not have control over her actions. Hopefully she will not have any side effects from the new medication and she will feel better and we can have fun again. And she wont be putting her staff in the hospital.

It is important to note that we have tried many, many things over the years to try to help her. She has been on seizure medication, diets, supplements, exercise programs, behavior programs etc and still she has these outbursts just like she did when she first developed autism.  Many would have given medication well before this; but, she went to a school that used medication only as a last resort. And now that she is in the adult world, her program has fallen apart and is not kept up.  And even if it were I could not say definitively that she would be wonderfully behaved.  As I said in the beginning, we think whatever we are doing is helping her when she is behaving well and then things fall apart for no apparent reason, in the spring.

Maybe she is allergic to warm weather and it triggers seizure-like activity in the brain. Maybe that is why the summer she was on the low glycemic index diet for seizure control she did well and enjoyed her August vacation. Too bad that people cannot seem to refrain from giving her ice cream and cookies. Why do most people have difficulty imagining a life without sweets, bread and pasta?