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.

 

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