Wednesday, October 17, 2012


On Thursday, we have an exciting opportunity to spread the word about FX to our whole community and beyond. A reporter from our ABC affiliate KSTP is coming over to interview me about raising boys with FX, and to see the boys and try to capture them on camera.

I know. My first thought was "good luck with that." The boys don't exactly love it when strangers come over, and they will make themselves especially scarce if said strangers bring over a big camera.

I'm trying to figure out how we can make this work for everyone. I want them to get good shots of the boys and I want the boys to avoid getting too stressed out. I was hoping for a nice, warm, sunny day so we could do it in the backyard, but rain is projected for Thursday, so I need to rearrange my plan for the living room.

In our preliminary conversations, the reporter mentioned how inspiring it was that I'd sacrificed so much to raise my boys.

I was immediately uncomfortable with the term "sacrifice." I'm no martyr.

Everyone sacrifices to take care of their kids, and we wanted to have a family. Granted, given the boys' special needs, we may have given up a bit more of ourselves than most parents end up giving up. But I don't sit easy with the inference that I'm regretting anything.

I explained how I'd given up a job to stay home with our kids, yes, but it wasn't a sacrifice. Actually for me, the sacrifice was in giving up time with my kids in order to go to work and earn money. This is not to say I didn't appreciate the other benefits of working outside the home - getting time away from the kids to be with other adults. I certainly did, and I needed that time away. But I didn't exist to work that job. It wasn't my passion.

Having kids was. Ever since I could remember, I'd wanted to have kids of my own.

As far as personal aspirations beyond child-rearing goes, I've always had dreams of being a writer. And my boys have given me the perfect subject, and Fragile X the most fitting theme. The experience of having twins, finding a diagnosis, exploring the world of special needs children, and working to ensure the boys are getting everything they need has been a mostly positive one. I don't know, maybe I was made for this. I don't necessarily believe that old adage, "God won't give you more than you can handle" necessarily applies across the board, but I do think that my personality and background makes me a good fit for the job of Zack and AJ's mom.

So no, I haven't really sacrificed anything. I'm not happy my boys have challenges. I'm not happy they suffer from such extreme anxiety and intellectual disabilities. But it's well within my capabilities to help them work through their problems and to make sure they get all the help they need. Beyond that, it's actually something I think I'm sort of good at.

As soon as TV interview appears online, I'll post it here. Isn't the Internet a wonderful connector?

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