Tuesday, July 22, 2014

Fragile X Syndrome - The Great Divider

A friend recently said something about how Fragile X has affected his family that I related to immediately.  He'd planned a family visit to Disneyland right after the Conference ended last week, only to end up leaving the son with Fragile X back at the hotel room with his older brother, and taking just their unaffected son to the happiest place on earth.  What was supposed to be a family event became another example of the way Fragile X divides families.

To recognize Fragile X Awareness Day, I'vedecided to illustrate the way that Fragile X has disconnected our family.

I can't count the number of times we've taken two cars to celebrations and events so that when the boys need to leave, Aliza doesn't have to.  She is eleven and has yet to have a birthday party where her brothers were able to participate, which means that Mark and I are almost never both able to go to her parties.  Family picnics, play dates, dinners - lots of outings end up being attended by Aliza and Mark, or Aliza and me.  The boys often "make an appearance" before one of us ends up taking them to wait in the car, if not all the way home.

(Actually, in the past few months AJ has been more and more sociable.  It's just changed the dynamic of our divide - sometimes, now, Zack is the only one who refuses to participate.)

Our family "vacations" usually consist of research trips.  The five of us have all gone together several times, when the boys had an appointment of some sort out of town, and used it's a excuse to semi-vacation.  The only true vacations we've taken, though, have been just the three of us, with the boys staying with one of or both my parents.  A vacation, while so necessary for recovery and relaxation for the rest of us, is just a forced separation from their comfortable routine for kids with Fragile X.

Things that should be fun, like Disneyland, are so filled with anxiety, overstimulation, and hyperarrousal they are more torturous than enjoyable.  Fragile X actually makes a kid choose solitude in a hotel room to Disneyland.

The number of times the five of us have sat at one table for a meal are so few, when it happens I have an urge to get out the camera.

Fragile X makes us a disjointed family.

All families have a bit of a divide between the children and the parents.  Parents are grown ups.  They go out for dinner, a babysitter comes.  Parents go to work, kids go to school.  The kids have sporting events that the parents attend, and siblings play together, fight each other, share things together, steal from each other, and rebel against authority together.  Only in our family, Fragile X prevents our kids from having a typical sibling relationship.  Aliza is a lot more like a surrogate parent to her brothers who are only two years younger than her.

It's not always awful.  Although her relationship with her brothers isn't a normal one, it's a good one.  She adores them and the feeling is mutual.

Trying to get them all to pose for a picture in their Fragile X shirts, though?  Impossible.

Thursday, July 17, 2014

International Fragile X Conference, Day 3 (that would be Thursday)

The mornings of each day of the conference always start with a keynote speaker, and Thursday's was the wonderful Doctors Berry-Kravis and Hagerman.  This morning they spoke on the benefits to and the need for folks to participate in research trials.  After the past year, I think there may be a lot of gunshy people, when it comes to offering ourselves and our children up as test guinea pigs.  We were lured with exciting stories about the wonders of these drugs, and then the trials ended in what can only be deemed as failure - the companies ran out of money and the data collected didn't show great results anyway.

We knew, though, there were no guarantees and we knew that just 1 of 10 drugs in trials ends up being FDA approved and finds its way to the pharmacy shelves.

Much was learned, though, in these drug trials, and changes are being implemented in order to make the next trials end with better results.  We all still have the same end goal in mind - a medication that targets the Fragile X gene and corrects the deficits the faulty gene causes.

I realized one goal of this week, in meeting Leeann Taylor, author of The Fragile Face of God, a book about the author's experiences raising her children with Fragile X.  I could not put her book down.  She tells a compelling, thoughtful, and thoroughly relatable story.  If you haven't read it, you should.

I attended a sensory processing session, in which they gave another example of a way to help an audience experience what sensory processing disorder might feel like.  They had two volunteers take off their shoes and socks, and then one of the presenters gave them specific instructions on the order in which to put them back on, while the other created distractions with bubble wrap and candy wrappers, making it very difficult to hear what the instructor said.

Mark finally arrived in town today, so we decided to find an In and Out Burger for lunch.  We had to drive a distance from the hotel, but we finally found one.  It was clearly a very popular place!  So if I had a bucket list, and if having an In and Out Burger was on it, I could cross that off.

I attended a few other sessions this afternoon, including one about a new Fragile X life planning tool developed by Mouse & Tracy called FX Max, a session reviewing a study that was done to determine which iPad apps were best for encouraging interaction between parents and kids on the iPad, and another about the kinds of things teachers need to know about Fragile X when they are writing IEPs.

In the evening we decided to check out Downtown Disney, a place where one can shop and eat and do and see Disney things, without having to pay entrance into the amusement park.  It was probably just as crowded as the parks and the commercialization is staggering, but I couldn't help getting a little excited about all the Mickey Mouse stuff and wanted to buy it all.  For the kids.  Not myself.  Just them.

Wednesday, July 16, 2014

International Fragile X Conference, Day 2

This morning the first thing I did was hit Starbucks for my morning pick-me-up.  Me, and dozens of others, but Starbucks is used to their caffeine addicted customers and they handled the crowd just fine.  After a few minutes in line I noticed that Randi Hagermann was just a few people behind me.  I began to sweat.

I knew I might see famous people here in LA, and here she was, my first celebrity sighting!

I'd heard her speak a dozen times but never actually approached her and talked to her.  So after ordering my caramel Frappaciccno, I found myself and Randi together at the counter, waiting for our beverages, and I took it as a sign.  This was my moment.

I introduced myself, and told her about my boys, and thanked her for her dedication to the Feagile X community.

And I spent some time later thinking, you know, she and her husband are Fragile X research rock stars, and we all openly worship the Hagermanns.  Look at the pressure we put on them.  I imagine it must be hard, being them. They couldn't retire if they wanted too, not with all of us counting on them.

I hope they don't want to.

Anyway, after getting coffee in hand it was time to get over to the Community Support Network leader meetings. I'm transitioning the leadership role to my good friends Miranda and Zach, so today we were all there, but going forward, they will be in charge.  I will probably remain in the role of parent contact, though.

The meetings were fun, as they always are.  It's such a terrific group of people and we were all energized and so happy to be there, Holly had a hard time shushing us so the meeting could start.

We learned tips and techniques for being good group leaders, and met the board of directors.  I really enjoyed that part, it was nice to get up close and personal with them.  Most of them are parents of kids with Fragile X, just like us.  It's so inspiring to be in a room full of such devoted, passionate people, all of us working toward the same goal.

Afterward there was a meeting to discuss how to best define the parameters of a study that is to be done on anxiety meds in children with Fragile X, and how effective they are.  This was a fairly high level meeting but having just participated in a drug trial, I wanted in on the conversation.  There are so many forms to fill out on a regular basis when you take part in a study, and all the parameters are so generalized, it can be hard to decide just how to answer them in reference to your own child.  It's hard to take statements like "enjoys being around children his/her own age" and decide whether or not enough improvement has occurred since the last time you filled out this form for you to be able to choose "often" rather than "sometimes."  

If the responses could be more personal it would be easier for parents to track.  One parent had claimed she knew the medication being tested was working because her son no longer had daily tantrums after getting off the bus.  Unfortunately that specific parameter meant nothing, in terms of the study.

A few people (probably the ones most attached to their smartphones) thought it would be great for their to be an app created where we could record changes and occurrences that show us that changes are happening in our children in real time, as they occur and as we see them.  I do like this idea, as opposed to the every-three-months filling out the same form, thinking back about small changes in our children that might allow us to fill out the form differently than the last time.  But I see, too, how difficult it would be to make the responses we might put into a real-time app into definable, useable data.

Evidently all the clinics will have the opportunity to participate in a new study called PCORI, which stands for - I forget, but it will study the effects of anxiety medications that our kids are already on, which will be infinitely easier than changing meds.  Someone mentioned this was a good trial for clinics that hadn't participated in any studies yet, and I made note of that, because I'd love the Minnesota clinic to start getting involved in studies and trials.  As much as we like to see Dr. Berry-Kravis, we don't like the 8 hour drive to get to the clinic in Chicago.  Yes, I know it's only 6 hours from the Twin Cities to Chicago, but we've never made it there with the kids in less than 8.

After that meeting there was a short break and then we went right into the kickoff celebration, to start the conference!  It was the first time all of us attendees were in the same room, and it was invigorating. Jeff Cohen made an exciting announcement, that Katie Couric had interviewed a couple of board members and Randi Hagermann for an upcoming special that from what I understand will be available for viewing online somehow.  He said this was the biggest and most broad audience Fragile X has ever had, which is exciting, but I wish it was going to be the subject of her talk show, and actually be on TV. Still, I am excited to see it and share it.

Our talented Miranda made our great state of Minnesota out of torn up cardboard.  Very artistic!

One of the best things about today was that I was too busy to miss the kids, which is silly since I spent the last week looking forward to this time, when I don't have to worry about whether AJ has been to the potty lately or if it's time for the next dose of medications or if they've stripped down and are running through the house naked, wanting to get in the pool, or if AJ has run out the front door to follow Aliza anywhere and everywhere.  I guess I don't miss all those little things, but I still miss them.   This morning Marka drives though, so I'll have some of my family with me.

International Fragile X Conference Diary, Day 1

(Today is actually day 2, as I arrived yesterday, but this morning I'll record the notes about yesterday.)

The adventure started really at the Minneapolis/St. Paul airport, where I ran into not only a familiar friend, but a new friend from Michigan, who final leg of her trip was the same as ours.  I always wear one of my many Fragile X shirts when I travel, and especially when traveling to a conference - it's how we all can easily identify each other in airports, hotel lobbys, and in between.  So we met, chatted, and posed for a quick shot.

And I vow to have fewer chins in every future photo.  

The flight was as pleasant as 4 hours of barely moving at all can be, the Super Shuttle to the hotel was harrowing as I sat in the front seat watching my life flash before my eyes as the driver weaved through traffic, but all in all it was a blessedly short and uneventful trip.  Just how you would want it to be.

The hotel is of course, gorgeous and the staff, of course, could not be more gracious and helpful.  I'm in a room meant for a family, with a king size bed and a separate section with bunk beds, which is great and spacial but is just making me miss these guys,

because I can't help but think of how much they'd love this room and climbing on these beds.

Each conference I've attended has been progressively more emotionally impactive - or maybe it just seems that way, because I remember the recent ones better than the first.  It's both unsettling and wonderful to see all the kids with Fragile X who come with their folks to the conference.  At home, they are just my kids.  Here, I see the similarities between them and all these kids with Fragile X.  It magnifies how "not" like other children these boys of mine are.

Can't look at these pictures, though, and not adore them.  I took these snaps just a couple of hours before leaving town so I'd have recent shots handy.  So they are always with me.

I didn't do a good job of getting photos yesterday - I will do much better today!
Related Posts with Thumbnails


#youmightbeanautismparentif (1) 2012 in review (1) 9/11 memories (1) ABA therapy (8) Acceptance (5) acronyms (1) advocacy (1) affection (1) aggression (8) AJ (11) Aliza (20) Aliza the playwright (1) All I really need to know... (1) Alphabitty Moments (1) American Girl (2) Ann Coulter (1) antibullying (1) anxiety (17) anxiety in parents of children with special needs (2) apple orchard (2) apps for autism (1) AppSmitten (1) Arbaclofen (13) Arbitrary Thoughts (1) ARC (1) autism (25) autism brushing (2) autism portrayed in TV shows (1) Autism Shines (1) awareness (15) backyard (1) baseball (2) bath toys (1) beds (1) behavior problems (4) being tall (1) Birthday Boys (3) biting (4) blog change (1) blog hop (2) blogging (3) books (8) bottles (12) brushing (3) bubbles (3) Burnsville Fire Muster (4) bus (1) Cabin Fever in Minnesota (1) candy (2) Carly Fleischmann (4) Carly's Voice (1) cats (1) cats and dogs (1) chewys (2) Chicago (8) childcare for special needs children (4) childhood (1) Children's Museum (1) chocolate (1) Christmas (8) Church (4) circumin (1) clinical trials (1) Clonidine (2) CNN Hero of 2011 (1) coffee (1) communication (1) comparisons (1) computer (1) Conference (5) cost of special education (2) Courage Center (1) Curcumin (1) daddy (1) dance (5) dance competition (2) dance moms (2) Dental surgery (1) dentist (2) developmental milestones (1) diagnosis (3) diapers (2) Diego (2) Disability Day (2) dogs (1) Dolphin Tale (1) Doomsday Preparation (1) Dora (6) Doritos (2) drug trials (1) DVD player (1) early intervention (1) earrings (1) Easter (1) ECSE Parent Retreat (1) electronic gadgets (1) electronics (1) Everything I need to know... (1) Evil Overlord (1) fall (3) falling asleep at school (1) families (1) family (6) fashion (1) fear (1) Featured (5) Feel Good Friday (10) field trip (1) fireworks (1) first day of school (4) Flash Gordon (1) Food Chronicles (2) food issues in Fragile X and autistic children (3) forms (1) forts (1) Fragile Face of God (1) Fragile X (28) Fragile X advocate (1) Fragile X and autism (1) Fragile X Awareness Day (1) Fragile X carriers (2) Fragile X in the news (2) Fragile X presentation (1) Fragile X statistics (2) Fragile X Writers (14) friends (5) fundraiser for Fragile X (1) funniest (14) Gabrielle Giffords (1) Galveston (3) games (1) getting carsick (1) Girls' Night Out (1) Giving Spirit (1) glasses (1) global warming (1) going home (1) Good Morning (1) Great Quotes (2) guest blogs (3) guest post (2) haircuts (3) Halloween (2) hearing test (1) Heaven is for Real (1) hippotherapy (2) holidays (5) Holland (4) Holly (3) home life (1) homework (3) hotel (1) hugging (3) hyperactivity (2) IEP Meeting (2) IEPs (1) in the news (4) inclusion (2) inspiration (3) integration (1) iPad (4) iPad apps (2) iPad apps for autism (3) IQ testing (4) Jack Jablonski (2) January First (1) Joke (1) journal entry (1) kids with Fragile X and animals (1) Kindergarten (6) Kindle (1) kisses (1) language study (3) learning to talk (5) leaves (1) lemonade stand (1) Lily (1) Little Einsteins (1) losing teeth (1) Mad Gab (1) makeup (1) mall (1) Mall of America (2) marcia braden (1) McDonalds (1) media sensationalization (2) medications (10) Melatonin (1) Miami (1) MIND Institute (2) Minnesota Bloggers Conference (2) minocycline (1) Miracle League (3) monkeys (1) mosquito bites (1) Mother's Day (1) movies (3) MVMOM Used Clothing and Equipment Sale (1) names (1) naughtiness (1) neighbors (1) nicknames (1) nightmares (1) normal (1) off topic (9) one thing leads to another (1) Operation Beautiful (1) oral sensory (2) orphan drug act (1) other bloggers (2) Our Wedding (2) outside (2) overstimulation (3) panic attacks (1) parade (3) parental stress (1) Parenthood (1) park (7) Partners in Policymaking (6) penicillin (1) people with disabilities (5) pets (1) pharmacy fun (1) photography (1) Photoshop (1) picnic (1) Pictures (3) pinching (2) pink shirt (4) Pinterest (1) playing outside (7) playing with toys (7) poem (1) politics (2) poop (4) potty training (10) Presents (2) protecting autistic children (2) rash (1) reading to kids (1) research (15) Retreat (1) riding a bike (2) Roger Ebert (1) routine (1) RSS feed (1) RUSH University (1) San Diego (1) Sandy Hook Elementary (1) Santa (3) schedules (2) school (37) school bus (2) school notes (1) school pictures (2) screaming (2) self image (2) self-checkouts (1) sensory (20) Seroquel (1) siblings with developmental delays (2) sick kids (6) sippy cups (11) sleep (5) smile (1) snow pictures (5) Snowstorm (3) social situations (7) speaking of the unspeakable (1) special education (2) special education evaluation (1) special needs kids (1) special needs parents (2) Special Needs Ryan Gosling (6) Special Olympics (1) spelling (2) spoon feeding (2) spring break (3) staying positive (2) stimming (4) Strep (1) STX209 (27) Stylish Blog Award (1) summer (7) Sunday School (1) Sundays (1) sunshine (1) survival mode (1) swimming (9) talking (13) talking to kindergarteners (2) Target (2) teacher's aides (1) Tegretol (1) Temple Grandin (9) Ten Commandments (1) textbook case of Fragile X (1) thankful (1) thanksgiving (2) that window/mirror thing (1) The Autism Store (1) The R Word (3) the rapid passage of time (1) The Right Things to say to parents of special needs children (1) The Santa Experience (3) the Shedd Aquarium (1) The Twin Thing (8) The Wiggles (2) therapeutic horseback riding (2) therapy (12) This is Autism (1) topless (1) trampoline (2) traveling with special needs children (12) TV (1) twins with special needs (3) Twitter (2) typical Fragile X characteristics (2) typical kids (1) typing (1) vacation (3) Vacation Bible School (2) video games (1) videos (8) volunteering (1) Waisman Center (4) water play (3) way-back-Wednesday (1) What I've Learned (1) What's your song? (1) when a special needs parent dies (1) Wiggles (4) Wii games (1) Winner Winner Chicken Dinner (1) winter (2) wonder (1) Wonder Pets (1) Wordful Wednesday (1) Wordless Wednesday (6) Words of Wisdom (1) World Autism Awareness Day (1) YMCA (2) You Tube (2) Zack (22) Zoloft (1) zoo animals (2)