Monday, September 09, 2013

The Last Resort

Not long ago, while working on my memoir, I was thinking about a story that appeared in the news back in 2006, shortly after the boys were diagnosed with Fragile X Syndrome.  It was about a woman in the United Kingdom who forced her 12-year-old son with Fragile X off a bridge, and she followed him, both falling to their deaths.

I had only known about Fragile X for a couple of weeks.  I didn't know yet how it would envelope our lives.  But here was a woman who had felt things were so hopeless for her son's future that she took him away from the world with her.  She despaired when she saw a world that, if he were left without her protection, would abuse and torture her vulnerable son.

I have to say, that didn't fill me with confidence in our future.

Now - seven years later - I see a story in the news like this one - about Kelli and Issy Stapleton - the mother who attempted to kill herself and her autistic daughter - and I can easily understand what Kelli's mindset might have been.  Her daughter was aggressive.  Mostly Kelli took the brunt of the physical toll, because she placed herself there - between her daughter and the world.  She did that because she knew that most people, and I mean, 99 out of 100 people she came in contact with, didn't understand Issy's aggression.  99 out of 100 people see aggression and think, violence.  Intent to harm.  Being a bully.

Issy' aggression (I am guessing - knowing she has autism, I'm making an educated guess), like my son Zack's, is more about self-defense.  Self-defense against forces that those of us who don't live inside her or Zack's head don't see.  Defense for themselves against themselves, a lot of the time.

If you see someone with autism hitting himself in the head, you might think "oh that poor person, so tortured by something inside him or herself that I can't see."  If that same person hits another person in the head, you are more likely to think "What the crap?  He didn't do anything to you."

An incredibly difficult concept, I know.

Another great example that helps identify the emotions that might be swirling through a special needs mother's mind is the book My Sister Dilly by Maureen Lang, an author who greatly inspires me.  It's about a woman who tries to kill her severely disabled daughter after resources run dry and she loses hope.  It doesn't give excuses.  It simply tells the story of that mom's fall into the pit of despair, and how both she and her daughter survive it.

Kelli has spent Issy's life protecting her from a world that does not understand her and probably wouldn't try to, before condemning her for her aggression.  And when she couldn't do that anymore, she did the only thing left she could think of to protect Issy - she tried to take her away from this world.

I don't think she thought she was hurting her daughter.  I don't think she saw it that way at all.  I think she thought she was saving her.

I get how insane that is.  I get how wrong it is to kill.  I just understand, I think, maybe better than some, where Kelli's mindset might have been and what her reasonings were.  I can easily imagine what her life with Issy was like.  There have been times when, to keep Zack from lashing out at others when he was overwhelmed and/or overstimulated, I permitted him to chomp down on my arm.  I've put myself between him and the clueless world.  I want to protect him.

I am deeply thankful for the help I've received along the way, because I know that is what separates me from Kelli.  I haven't reached the end of any ropes.  I'm supported and loved and so are my kids.  I hope a tragedy like this results in better understanding and compassion of people with autism and how much we don't know about what goes on in other families.

No comments:


#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