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…

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?

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”.

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.


Guilty Pleasures and Lost Weekends

Last night I wrote about how frustrating it is to hear that the people taking your place as the caregivers and safe-keepers of your disabled adult child have not kept their promises. Anyone in my situation knows that when you take time off for yourself or to care for someone other than your child or even to see if some independence might benefit your child…you almost always feel guilty. Even if your presence would not have made a difference or if you could not have done a better job, even if you know that you cannot handle your son or daughter when they misbehave, underneath it all, you feel guilty. When you cannot sleep at night the “what ifs” will run in your head like a chattering monkey. This is not rational but part of being a parent and is somewhat shared by the parents of non-disabled children.

I have often wondered what is different about having a child with autism that sets us apart from the parents of other disabled children. Perhaps I am mostly exposed to particularly pushy parents. Some parents are passive and accept what services they are offered and do not press for more. These families often end up over-extended with adult children living at home with aging parents who are less and less able to care for them. The most common concern of all the parents I speak with is the fear of who will care for their children when they cannot. Who will advocate for improved staff training and job coaching?  Who will see that their adult child is actually physically ill and not just “having a behavior”?  When we hear and read stories of mistreatment and indifference such as abuse in state-run  agencies we become even more terrified.

The problem with fear is that it often breeds even more paralyzing inaction; a terrified person cannot think what to do next. And when your rational discussions produce no results except lip-service, discouragement sets in. Then you have to pick yourself up and calm your thoughts to begin again the fight for what is right for your child.

This is what I will be doing tomorrow. I will attend the quarterly meeting and listen to the plans and hopes for improvement, all the while knowing that after 2 years little has changed. The staff changes and each new person is put forward as the answer to our prayers. Usually this person cannot actually deal with the reality and is gone within the month.  I will say again what should be done and will be assured that they have a plan in place that is going to make everything all right.

Then I will go home and feel guilty that I cannot do it all myself.