Every now and then I rebel against accepting Fragile X Syndrome's place in our lives, and decide I want to do something that other families do all the time. Once in awhile it's nice to feel something resembling normal.
I just read a fantastic book, January First by Michael Scofield, and in it they try to go on a family picnic. A totally typical family summer outing, made difficult by the fact their six-year-old daughter has schizophrenia and her behavior is often violent and unpredictable. But, as the author explains and I really related to, sometimes you just want to do SOMETHING that normal families do. Just. One. Thing. It didn't go well for the Scofields, and I have many memories of our own family outings that ended similarly.
Regular families go to parades, and Aliza, being a regular kid, loves parades. The noisy fire trucks and booming marching bands, the summer heat and the crowds of people - it's an American tradition, and at the same time, sort of a nightmare for two little boys with Fragile X. We constantly battle between protecting the boys from things that will be difficult and outright painful for them, and encouraging them to leave their tiny, limited comfort zones and have new experiences.
It's a fine, fine line, people.
My friend's daughter Elle was in a parade yesterday with her dance group. Just like Aliza was last September, and will be again two weeks from now. And watching Elle yesterday and Aliza next month, participate in a parade is something I really hoped the boys could manage.
While a big crowd is always a challenge for them, being outdoors helps a lot. The boys almost always do better with outside activities, as long as it's not too hot. There's really no way to minimize the noise since they have been unwilling to wear headphones, but Zack manages just fine - he shoves an index finger into each ear. He sits like that sometimes even when there's no real noise. I think he likes how it feels.
And I figured, AJ handles noise and crowds better than Zack does, so if we can get Zack through it, we're probably 75% of the way toward success.
So at the parade yesterday, every time something loud came by, I put my hands over AJ's ears. The first few times he let me, and then he stopped me. I guess the noise wasn't bugging him that much.
Both boys sat through most of the parade. Zack stared at the iPad in his lap the entire time, but he tolerated the parade for around two hours. And AJ even seemed to enjoy bits and pieces of it.
Now of course, they weren't up at the curb with all the other children, racing out to snatch up the candy the paraders tossed their way. They don't have any interest in candy (a blessing, really, considering their aversion to brushing their teeth). But they stayed, relatively willingly, in the vicinity of our lawn chairs and even watched a few of the parade floats and this go by (well, AJ did).
For awhile, it resembled normal. Which is good, because in two weeks we're going to try it again for the Burnsville Fire Muster parade.
#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