Thursday, December 20, 2012

The Fragile X Walk down the Yellow Brick Road

I've accepted Fragile X's place in Zack and AJ's life for now.  While they are little kids.  While we work on potty training, and accepting a bigger variety of foods, and learning to be social and play nicely with others.  I have achieved that level of acceptance.  Fragile X is here and it's not going anywhere.

Evidently I'm not as accepting of Fragile X in their lives in the future.  Because when I hear about bigger kids and adults with Fragile X, and all the assistance they still need to live, and their vulnerability and innocence, and the way their parents still have to worry and fuss over them as if they were five years old - it chills my heart.

This past weekend's guest Fragile X Writer, Cindi Rogers, has two sons who are in their 20s and she still has to watch over them like they were toddlers.   She can't go out unless she has someone to watch them.   I have a friend here in Minnesota who has a son who is 17, and her situation is the same.   She can't come to functions unless she brings her son, or they get a sitter.   For a 17 year old.  And I have known this about Fragile X and cognitive disability for years now, but it still sucks the breath out of me and makes me sad.   I guess I'm not there, yet.

I guess acceptance of the Fragile X thing is a long, long, walk I'm on.  Kind of like a yellow brick road.  I see scary things in the future, but I must trudge on to the Emerald City.  I think maybe I've met the Scarecrow, but I'm not sure I have the Tin Man with me yet, and we definitely haven't run across the Cowardly Lion.

I hope I kill the wicked witch on the way.  I could use a broomstick.

Maybe it's like that - Like Dorothy, I won't be afraid of the Wizard when I get there, even though he's loud and fierce, because I'll have been through such a journey already that he can't scare me anymore.  Maybe I'm developing courage, smarts, and heart along this way while the kids are still kids.  Maybe this is all molding me into the person I'll need to be, to be able to stomp my feet at the Wizard and say "No!  I have come all this way and you WILL help me get home now!"

Cindi Rogers is there.  She's standing in front of the Wizard, and he doesn't intimidate her at all.  She's strong enough now to make demands and get her sons' needs met, and even to make sure they have happy, fulfilling lives.
And oh, those cute little folks working in the Oz salon, who primped and prepared her to meet the Wizard - they did an awesome job.  I hope I look as good as her when I meet him.
But I bet Cindi would tell me, like the Wizard told Dorothy, that I've always had the ability to get home.  I've always had the strength and courage and smarts to do what needs to be done, and I just didn't know it.  Cindi knows.

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