Friday, January 04, 2013

Fragile X Writers Series: "When all 3 of my children have Fragile X Syndrome..."

I'm a little behind today - trying to get back into the swing of all our routines has been tough!  I know it has been challenging for today's Fragile X guest writer, too - Rachael Gibson, of the darling blog Our Life.  Rachael has - count 'em - three kids with Fragile X; two little girls and a boy.  Sometimes I get a wave of self pity and think I have a lot on my family plate.  Then I remind myself of Rachael.  Somehow she manages to make raising her three kids with Fragile X - well, not easy, but she's getting it done, and getting it done well.  And looking fabulous herself, somehow, while doing it.

By the way, visit her blog, and if you read no other posts, read this one - about the turquoise violin her son got for Christmas.  It's such a wonderful story about a family coming together to make a little boy's dream come true!

I was asked by Bonnie of Fragile X Files to write about what it is like to have all 3 of my children have Fragile X Syndrome.

This post, for some reason or another has been hard for me to wrap my mind around.

I know there are many other parents out there who have 3 children with Fragile X Syndrome.  I have met many of them.  Some of them have an easier row to hoe, it seems to me, because their girls with Fragile X don't seem to be affected and are off to college and there are some who have all boys who are more affected than our only son.  So it is hard to really put being a parent of 3 with FXS in a lumped category so I guess, really, the name of this post is "When all 3 of my children have FXS..."

In Our Life there are moments, and I have to look at them as moments because my days would seem so overwhelming and unproductive it I looked at the day as a whole... so, there are moments that are frustrating and irksome: 

Sister bounding, bouncing and rolling uncontrollably, unable to sit for an entire meal—let alone 2 bites in one sitting.

Baby not talking to me about her needs, having to pull my hand to where she wants me to be and pointing to what she needs, yet being able to sing the theme song to Scooby Doo.
Brother fighting EVERYTHING social—wanting friends but not being able to overcome his anxiety to  hang out with them in a "normal" teenage way.

The tension between Marc and I can get pretty thick just because both of us are trying so hard to keep it together when all these little things seem to be piling up in our things-that-drive-you-crazy-after-so-long basket.

It's a daunting task to not only have to make sure one child is getting all the sensory input they need but to add 2 more to that ... just... well... I fail sometimes.

It adds to the stress when your children are so active they don't even want to take time to eat and when they do you have to cater so carefully to their aversion to certain textures, appearances and tastes.  If you think it's hard to have one picky eater, times it by 3.  It's inevitable that one of those will slip through the cracks and wake up in the middle of the night because they are hungry because you weren't able to figure out enough creative things or ways for them to eat that day and they just avoided food as much as possible.

It's really tough to know that your 2 daughters are both struggling with Autism on top of Fragile X, especially when you have only met girls who have Fragile X are so high functioning, off to college or at least holding a job or able to retain friends throughout high school.  You wonder if you missed something as a parent somewhere along the way as to why your girls are so affected by Fragile X and so many girls seem to be overcoming the Syndrome.

It's so hard to see your 13 year-old son, who is wise beyond his 8-year-old mind's capacity but Anxiety consumes him and becomes his prison.  I give Anxiety a capital letter at this point because it has become his close companion.  I've always wanted my children to choose their friends wisely but this is one particular companion I wish would leave my son alone.

But, just when I get discouraged with these moments I am blessed to have the other moments.

The ones that make me laugh:
Like when my mom is reading a touching Christmas story to the entire family on Christmas Eve and Sister comes out in one of the hundreds of costumes hidden away in the back room and it is not just any costume, it is the four-armed purple alien costume.  She doesn't think a thing of it and plops herself down in the center of the room to listen happily.

Or, when Baby gets a total "kick" out of certain things someone says like "R2D2" or "Let's go Party!" and she will try so hard to repeat it to you to get you to say it again just so she can laugh hysterically and goes red in the face.

And when Brother calls my sister-in-law, Chelsea, on VOXER (it's kind of like a walkie-talkie app for the iPod and iPhone) 28 times just so she can hear him play his violin several different ways.

Oh, and I love it when all three of my kids pile up and give me huge hugs and we all giggle until our ribs hurt.

The ones that make me smile:
When Baby brings me a blanket and turns her back to me and stands there while I wrap her tightly and then pick her up in my arms and "squish" her.

When Sister asks, "Mommy, do you love me?" everytime she does something questionable or she can tell that I am frustrated with something.

And when Brother tells me how proud he is of himself when he has overcome his anxiety, "I did good, huh, mom?"

There are also the moments that I cry happy tears.

I am thankful for those moments, especially because there are often frustrated or sad tears shed, it is nice to have the tender tears.

These are the kind of tears that warm your cheeks and your soul.  Sometimes these tears come at the most unexpected times.  Usually, though, it is when I am with my family or close friends seeing the supports we are surrounded by, knowing that we are not alone raising 3 children with FXS.  That's when I cry those tender tears, I step back a moment to see that we are not alone in this journey and that so many people around us are waiting in the wings to buoy us up and carry us through the deep and there are still more at the shoreline to make sure we don't stumble in the sand.



fragilemom said...

Thanks for sharing this. We too have 3 children with full mutation (2 boys, 1 girl). Always sweet to hear stories, whether it's one or 3 kiddos. We each have our challenges and we each have our incredibly rewarding moments. I love getting to read the 'real life, lives.

fragilemom said...

P.s. beautiful pic of their family!


#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