Wednesday, May 12, 2010

Predicting Ashley

Another questionable issue with growth attenuation involves the attempt by doctors to predict what a child's physical body will look like in adulthood. One must keep in mind that doctors will begin "counselling" parents about g.a. when the child is three years of age. This sort of crystal ball gazing was rampant among Ashley's parents and doctors. If you go to the parents' site (see sidebar), you will find everything below:

It was predicted Ashley's cognitive abilities would never change.

She has been at the same level of cognitive, mental and physical developmental ability since about three months of age. Ashley has aged and grown in size but her mental and physical abilities have remained and will remain those of an infant.

It was predicted her periods would be painful.
...we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort.

It was predicted her breasts would be large and uncomfortable.
Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her. This is especially true since Ashley is likely destined to have large breasts, given her maternal and paternal female lineage.

Her adult height and weight were predicted.
Normal growth would have resulted in an adult height in the neighborhood of 66" (5' 6")
the average weight of a 5' 6" woman is around 125 lbs,

It was predicted that her appendix would give her trouble.
The surgeon also performed an appendectomy during the surgery, since there is a chance of 5% of developing appendicitis in the general population, and this additional procedure presented no additional risk. If Ashley’s appendix acts up, she would not be able to communicate the resulting pain.

It is true that Ashley was showing signs of precocious puberty at six years of age (this is not unusual in the severely disabled population). That only meant that she would experience puberty. It does not make for more accurate predictions of the future of a child's body size, shape or type.

These predictions were done with lots of scientific equations, I'm certain, using height and weight charts and going way back into the family gene pool.

I would like to make a simple point here, using my own daughter as an example:

Father is 6 ft 2 in, 240 lbs and comes from very tall, heavy stock from both sides of his family.
Mother is 5 ft, 105 lbs, with shortness prevailing on the paternal side, but not on the maternal side.
Eldest daughter is 5 ft. 6 inches, 120 lbs.
How tall is Sophie? She is 5 feet tall...and is clearly finished most of her growing, if not all, since she has not changed height in over almost two years.

How much does Sophie weigh: 60 lbs

Sophie's cognitive ability was at one time assessed as "brain dead". Then it was assessed at "vegetable". Now, she can read, write, count, is aware of everything going on around her.....

I'm not going to go into breast size specifics here (!) only to say that it's all over the place in the female gene pool.
What about Sophie? Her secondary sexual characteristics are very minimal. She has very little hair and minimal breast growth.

Sophie's period has no predictable pattern. So far, she has had three periods in one year. They lasted one day and consisted of one small amount of discharge. This may indeed change, but she is now 16 years old. It is possible that Sophie's brain damage is playing a part in her physical development or lack thereof.

The appendix? Dad had his removed as an infant during emergency bowel surgery.
Mom's appendix...so far so good!
Sophie's appendix...well, it's still there...and has not exhibited any problems thus far.

My point is, quite simply, that predicting how a child will appear as an adult and using it as a justification for g.a. is risky, unscientific business.

2 comments:

  1. We can't predict physical or mental development, and I just think it's just plain wrong to try and put parents in the position of imagining their 3yr old child as an adult. It's never realistic, it doesn't take into account the process of learning and adapting which both child and parents will do.

    Although I was scared and intimidated at the thought of raising a child with a disability, the actual process of doing it, raising a child, is easier than I had imagined (although not always easy). Using stereotype predictions is IMO using scare tactics to frighten parents.

    I read something today saying Angelman Syndrome is "tragic"
    "The result is quite tragic – children whose bodies grow and age normally but whose brains are locked forever in the state of a two year old"

    This was written in a push for more research, but the stereotype is damaging all the same. My son is 10, he is nothing like a 2 year old, he has 10 years of experience which sets him apart from young children in every way.

    (nb, taking into account your own situation and remembering not all brain injuries occur before or at birth)
    (p.s. I'm very tired today, I hope the comment is making sense)

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  2. Emma, you make a ton of sense and I agree with you. I particularly like how you say that your son has 10 years of experience...it makes a difference. No one with any sort of stimulation or life experience stays the same "age" forever...it's not even logical. The mental age concept has a place in generalizations, but it is far too narrow a concept to explain how our children mature. Thanks for your comment.

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