Wednesday, January 9, 2013

FASD: Is Improving Memory Really A Good Idea?

Today I am the UM clinic with one our kiddos who is participating in the Postnatal Choline Study.  The purpose of the study is to see if Choline Supplements can help improve memory when it has been impaired by pre-birth exposure to alcohol.  Memory is a huge challenge for our children with FASD's and on the surface anything that might improve it sounds good. 


But what if we are able to improve memory BUT are are unable to modify other realities of FASD such as impulsivity and emotional immaturity?  The truth is that most of our kids who were exposed to alcohol are highly attracted to things that we don't really want to encourage.  Violence, s*x, anger, crime, dysfunctional behavior - you name it - it's very likely to be more interesting to them than more gentle ideals.  So if we improve their memory are we making more room for the things we don't want them to remember and dwell on as well as those we do?

By improving their memory could we - in fact - make life harder for them and us?

Maybe again.

It's generally accepted within my FASD moms group that affected kids with higher IQ's and fewer learning disabilities actually have a harder time with life.  Did you get that?  Harder - because they look and act more 'normal' so their challenges are attributed more to 'choice' than brain damage and there are fewer services available to them.

Which isn't fair at all - but that is how our society looks at this sort of situation.

If we are able to improve memory and make some things easier (like keeping up at school) but it also makes them able to remember and retain the negative information without necessarily creating a stronger cause/effect impulse control improvement.  Will we be making things worse?

That is the question I posed to our researchers today.

Because I sure don't know.

(P.S. I suspect that there is something in the bigger picture of  where certain sorts of memories are stored, how, why and when they are accessed that I don't actually understand...which means it's time for me to do a little more research.)


El said...

People really don't understand the difference between LOOKING normal and BEING normal, do they?
My son with an alcohol diagnosis and severe learning disabilities somehow managed, by some miracle (and after seven years of intensive tutoring) to go from a grade one to reading at grade level (eight) this year. I have been amazed at the number of people who now think he is developmentally caught up just because his reading is! Like somehow that changes his emotional and social functioning level as well.

Megan said...

This is some really good stuff to think about. As a mom you always want the best for your kids, and improvement in any area surely seems like a good thing. However, when it adversely affects other areas, well then it is not so goo.

In our home, one of our children diagnosed on the FASD spectrum really struggles with memory recall. Behavioral therapists who have worked with her and who get stuck on the diagnoses of RAD, completely missing the FASD diagnosis because she "looks" so normal have recommended that we participate in EMDR therapy to help her recall and deal with some hard realities of her past. The thing is that time (and her low memory recall) has caused those hard realities to become blurred and almost lost. We live in the moment, not even in the day-to-day. We live with the choice of the moment and what is "now" on her to-do list. And this current moment is hard enough! Dredging up the past when she does not focus on it would be like adding fuel to the fire.

Emotional immaturity, lack of cause/effect reasoning, low impulse control...this child lives in what Dr. Boys calls the 6-second window. The current 2 seconds, the past 2 seconds, and the next 2 seconds. Trying to deal with anything beyond that is out of their realm, especially if they become dysregulated in any way.

And El, I get you on the difficulties of a child making a leap academically/cognitively, but being stuck developmentally. Our child had a 19 point jump in IQ but literally zero gains in executive processing. What can we do if the child knows information but can't apply it?

So, Dorothy, you've gotta let us know how the study turns out.

Jolene said...

I really don't know what the results will be for our Sunshine but we're having him evaled to see what his challenges are. We are having him looked at for FASD and it would make so much sense if that is what we learn.

Lilli said...

We just had our two boys ages 3&4 tested at a preschool for special neeids kids and they tested normal or above for their age. However, I have suspected FASD for some Time. They both have behavioral issues and seem to just not get things. For instance when asked what's your name one will Answer 3. They seem to have little to no memory of past homes ans live in the moment. One of them won't laugh at funny shows that all other brothers are laughing at. They present so normal and can charm family. Nonetheless, we are about to have them tested wth neuropsyhologist. Will they also come up woth nothing? Am I crazy? They suspect Bio mom has FAS but she said she didn't drink during pregnancy. I'm thinking she wouldn't answer that truthfully. Any advice would be greatly appreciated. I am quite the roomkie but researching like crazy! Thanks for all your wonderful posts.

Laura said...

wow. wow. fascinating. that makes so much sense...i really love how you explain things...and am so thankful for u!

Anonymous said...

Hi, we just had the finalization of the adoption of our precious foster son this past week. We know that mom drank during the pregnancy, and have been following your blog for some time. I love how open and honest you are about everything, and really appreciate your FASD posts. So far, our son is 20months old, and portraying as a perfectly normal little guy. It is still our hope and pray, that this will continue, yet we want to be realistic and prepared, for what might come. A friend who has adopted 4 brothers, all with full-blown FASD, directed us to your blog.
I just want to say thank you for your posts, and wish you all the best, as you strive to raise your blessings to the fear and honour of God. "His Grace is Sufficient"

Becky said...

I have never tracked down the study but I distinctly remember one of my college professors telling us about a treatment that was tried for people with Down's Syndrome. Plastic surgeons "corrected" the children's facial features so that they didn't have the extra eye folds, etc, that give adults with Down's that distinctive look. The idea was that it would allow for the people to be better accepted by society. However, they found that this actually worked to the people's disadvantage. The distinctive features are, at their heart, quite similar to those that cause us to instinctively identify "young" and trigger our nurture response. By removing these features, the grace we offer instinctually was removed.

You forget that probably all of these genetic variations that have been around since we began and cause various difficulties also must come with some protective features as well.