Friday, August 02, 2013

Scientific Advances and Moral Dilemmas


This past week, for no reason in particular, I got to thinking about all the knowledge we have today, about Fragile X and the human body and brain development.  And all the decisions we have to make because of that knowledge, that 100 years ago (heck, 30 years ago) nobody even had to ponder.

We know exactly where Fragile X comes from.  We know the spot on the X chromosome where it happens.  So now doctors and scientists and are working to control it.  To "fix" it.  Either with a cure, or with better targeted treatments.  We are encouraged to participate in research, whether they be drug trials or language and development and social studies.  With all of this research and studying going on, with every passing year we are closer to some real miraculous possibilities in medications.

In the meantime, we nonscientific people, we parents and laypeople, get to talk about what we should do about all these new possibilities; this new world of cures for ailments and conditions and disorders that for decades, centuries, we've taken for granted as permanent and unchangeable.

On the one hand, we adore our children, disabilities and all, and know that we wouldn't change them for the world.  They are perfect just as they are.  They are perfect, amazing little beings.

On the other, once we know the details of how a genetic disorder is passed on, a lot of us move heaven and earth to avoid having more kids with disabilities.  Birth control, family planning, and if we DO want more children - adoption, IVF, or (gulp) winging it - taking a big chance on fate.

That's kind of admitting that things aren't so perfect, are they?

If you have a child with Fragile X (for a quick course on what Fragile X is, see the above tab, About Fragile X), as you learn about it, you have to look through your family tree for other carriers, to see who else might be "at risk" of having children with Fragile X.  Having more of these children with challenging disabilities, who are like your own heart, walking around outside your body.

That's what it comes down to - I think.  My kids are like my own heart has broken free from my chest and it's out and about, in the world.  And they have such a hard, hard time, and I don't know how much more of that heartache I can bear - that's why I don't have more kids.  It's about me, really.  There.  Answered my own question, I guess.

Well, that, and the fact that the second kid turned out to be twins, which was one more than we were aiming for.
 
It's tough, keeping up with technology and knowing how to feel about the new knowledge and options we have.  Knowing that I'm the carrier of this gene that gave the boys FX, I could easily feel guilty, but I know I'm not at fault.  I know I didn't know.  My dad is a carrier too, but he knows he didn't know.  His mother, though - she never knew.  We didn't tell her, because I'm not sure she wouldn't have felt guilty at having given this gene to her son, granddaughter, and great grandsons, and we couldn't let her feel that.
 
So much new information comes at us, and nobody tells us how to process it.  Nobody tells us what we should think or do about our new choices.  These new possibilities.

It's not unforeseeable that a cure could exist for Fragile X.  Someday a mother is going to find out her child has Fragile X and the doctor is going to say "but we can correct that gene.  Don't worry about that, that's fixable."

Are there mothers out there who will respond "No, thank you.  He is perfect just the way God made him."?

I bet there are.  And those mothers, those parents, will spend their lives advocating for rights for their sons, trying to make the world find a place for them.

Should we change the world to fit our children, or should we change our children to fit into the world?  Or will we have to do both? 

Because as of today, the number of people on earth with disabilities is growing, fast.

It's a lot to think about.

No comments:

Related Posts with Thumbnails

Labels

#youmightbeanautismparentif 2012 in review 9/11 memories ABA therapy Acceptance acronyms advocacy affection aggression AJ Aliza Aliza the playwright All I really need to know... Alphabitty Moments American Girl Ann Coulter antibullying anxiety anxiety in parents of children with special needs apple orchard apps for autism AppSmitten Arbaclofen Arbitrary Thoughts ARC autism autism brushing autism portrayed in TV shows Autism Shines awareness backyard band baseball bath toys beds behavior problems being tall Birthday Boys biting blog change blog hop blogging books bottles brushing bubbles Burnsville Fire Muster bus Cabin Fever in Minnesota candy Carly Fleischmann Carly's Voice cats cats and dogs chewys Chicago childcare for special needs children childhood Children's Museum chocolate Christmas Church circumin clinical trials Clonidine CNN Hero of 2011 coffee communication comparisons computer Conference cost of special education Courage Center Curcumin daddy dance dance competition dance moms Dental surgery dentist developmental milestones diagnosis diapers Diego Disability Day dogs Dolphin Tale Doomsday Preparation Dora Doritos drug trials DVD player early intervention earrings Easter ECSE Parent Retreat electronic gadgets electronics Everything I need to know... Evil Overlord fall falling asleep at school families family fashion fear Featured Feel Good Friday field trip fireworks first day of school Flash Gordon Food Chronicles food issues in Fragile X and autistic children forms forts Fragile Face of God Fragile X Fragile X advocate Fragile X and autism Fragile X Awareness Day Fragile X carriers Fragile X in the news Fragile X presentation Fragile X statistics Fragile X Writers friends fundraiser for Fragile X funniest Funny Gabrielle Giffords Galveston games getting carsick Girls' Night Out Giving Spirit glasses global warming going home Good Morning Great Quotes guest blogs guest post haircuts Halloween hearing test Heaven is for Real hippotherapy holidays Holland Holly home life homework hotel hugging human behavior hyperactivity IEP Meeting IEPs in the news inclusion inspiration integration iPad iPad apps iPad apps for autism IQ testing Jack Jablonski January First Joke journal entry kids with Fragile X and animals Kindergarten Kindle kisses language study learning to talk leaves lemonade stand Lily Little Einsteins losing teeth Mad Gab makeup mall Mall of America marcia braden McDonalds media sensationalization medications Melatonin Miami MIND Institute Minnesota Bloggers Conference minocycline Miracle League monkeys mosquito bites Mother's Day movies MVMOM Used Clothing and Equipment Sale nail trimming names naughtiness neighbors nicknames nightmares normal off topic one thing leads to another online dating Operation Beautiful oral sensory orphan drug act other bloggers Our Wedding outside overstimulation panic attacks parade parental stress Parenthood park Partners in Policymaking penicillin people with disabilities pets pharmacy fun photography Photoshop picnic Pictures pinching pink shirt Pinterest playing outside playing with toys poem politics poop potty training Presents protecting autistic children rash reading to kids research Retreat riding a bike Robin Williams Roger Ebert routine RSS feed RUSH University San Diego Sandy Hook Elementary Santa schedules school school bus school notes school pictures screaming self image self-checkouts sensory Seroquel siblings with developmental delays sick kids sippy cups sleep smile snow pictures Snowstorm social situations speaking of the unspeakable special education special education evaluation special needs kids special needs parents Special Needs Ryan Gosling Special Olympics spelling spoon feeding spring break staying positive stimming Strep STX209 Stylish Blog Award suicide summer Sunday School Sundays sunshine survival mode swimming talking talking to kindergarteners Target teacher's aides Teeth brushing Tegretol Temple Grandin Ten Commandments textbook case of Fragile X thankful thanksgiving that window/mirror thing The Autism Store The R Word the rapid passage of time The Right Things to say to parents of special needs children The Santa Experience the Shedd Aquarium The Twin Thing The Wiggles therapeutic horseback riding therapy This is Autism topless trampoline traveling with special needs children TV twins with special needs Twitter typical Fragile X characteristics typical kids typing vacation Vacation Bible School video games videos volunteering Waisman Center water play way-back-Wednesday What I've Learned What's your song? when a special needs parent dies Wiggles Wii games Winner Winner Chicken Dinner winter wonder Wonder Pets Wordful Wednesday Wordless Wednesday Words of Wisdom World Autism Awareness Day YMCA You Tube Zack Zoloft zoo animals

Fragile X Blogs