Friday, August 30, 2013

What it's like

This is an excerpt from my memoir that I've been working on - I'm putting it out here because I don't think it's going to fit into my story anywhere, but I still wanted to do something with it.


Want to know what raising twins with Fragile X Syndrome and autism is like?

Imagine that you had a baby. An adorable little boy. He's kind of a hard baby. Colicky.  Like a lot of babies, he's confused about days and nights and when to sleep and when to wake. Doesn't eat well. Seems crabby and unhappy.  You feel like you can’t do anything right, and your baby is miserable all the time, and it’s your fault.

Then imagine you have two of them. Two crabby, sleepless, miserable, poor eaters.  It's harder than you ever thought it would be.

Then imagine they grow up a little. They are toddlers. Took them forever to work their way out of babyhood, but now they are finally toddlers, and they are finally happy!  After almost two years of being helpless babies, they can walk now, and even run, jump, and climb. They are all over the place, and nearly faster than you can keep up. They like to take off in opposite directions. Days are exhausting, nights are excruciating, and time flies because you don't have time to notice time, anymore.

And they continue to be toddlers. For years. Other moms are able to walk into a store without holding their children’s hands, or sit on a park bench and watch their kids play from afar, but not you. You still have to trail those boys closely as if they were still toddlers, even though they are school-age now. Because they still don’t understand that they could fall from great heights. They still don’t understand how to stand in line, when there’s a bunch of kids waiting their turn to go down the slide. They still have no idea that if they walk away from you at the store, that they might get lost and scared. They have no idea that cars driving through a parking lot might not be watching for them.

You still have to pack a backpack (although you have graduated from the diaper bag days, the contents are basically the same) full of necessities, anytime you want to leave the house. Your children might be somewhat potty trained, but you can’t trust that you won’t need a pull up, some wipes, and a change of pants. You just never know how successful they are going to be when out and about. You still need snacks, in case outings go longer than planned or in case someone has a meltdown while waiting in line at the grocery store and needs something to help him calm down. You still need books and toys and random comfort objects.

The chasm between your life and that of other moms of children the same age grows wider and deeper each year, as other children develop skills your children haven’t.

You’ll spend possibly the rest of your life trying to build a bridge across that chasm.

And yet, this is your life. You didn’t choose it, but nobody else gets to choose their lives, either. They are your sons, your flesh and blood, and they are darling and funny and sometimes even clever. You are constantly aware that things aren’t quite like they were supposed to be, but for the most part, it’s not so bad. You don’t lie awake at night wishing things were different.

Well, most nights you don’t.

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