Monday, December 31, 2012

Fragile X Files Year 2012 in Review

I admit I totally ripped off this whole idea from Love that Max.  I give Ellen all the credit for coming up with this awesome year-in-review format.

In January Mark and I celebrated 10 years of marriage, we started the extension of the STX209 drug trial (so we finally knew we were giving the boys the actual medication, and didn't have to wonder anymore whether they were getting the placebo), I reflected on the Minnesota high school hockey player who suffered a debilitating injury and about how people with disabilities are viewed in general, I lost a newly found friend who also had twins with Fragile X, and I reviewed some of the boys' favorite iPad apps.

In February, first AJ and then Zack had a couple of rough days.  Then the boys both showed verbal improvements - AJ talking in sentences, and Zack coming out of his box a bit more too.  The boys went on a school field trip to the zoo;  I groused about how I hate Valentine's Day; we tried out baseball; and finally, we played outside quite a bit because it was unseasonably warm.

March saw each of the kids getting sick; I pondered how I'd react to a cure to Fragile X and/or autism; We celebrated the beginning of spring by jumping on the trampoline; I debated whether to work on getting more help for the boys at school; I hired Ryan Gosling as my manny; we had some potty training debacles, and we had a wonderful time over spring break.

April saw the estimated numbers of kids with autism go up to 1 in 88; Zack got anxious at Courage Center and took it out on a kid in the waiting room; Aliza decided AJ was advanced enough to start taking some blame for some things; and Zack finally gave up the bottle FOR GOOD!

In May the boys continued on the bumpy road toward being more verbal; we rejoiced that the bottles had been banished and the potty wars went on; and the boys started the baseball season and it was a rough one.

June began with Zack starting his usual sensitivity to heat and humidity by screaming and biting his legs; AJ went on his first airplane trip when I took him to the MIND Institute in California; Mark, Aliza and I had a terrific time in Galveston, Texas; and Zack spent yet more quality time on the potty.

July brought on more heat and humidity, which Zack continues to suffer from the affects of; we wrapped up the baseball season and reflected; we recognized Fragile X Awareness Day with some time in the backyard wading pool; and I attended the International Fragile X Conference in Miami, and shared thoughts and photos.

In August we tried even more water therapy to help relieve Zack's skin sensitivity; we all had a great time at the Minnesota Fragile X Picnic; Aliza felt she was being forced to grow up too fast; we took some rides on some escalators; and we all went to a parade, and AJ even watched a little of it.

School started in September and AJ renewed his love of school buses; the whole family went to the Burnsville Fire Muster and both boys rode the Ferris Wheel; I wrote about why I love The Big Bang Theory; and Zack and AJ went back to sharing a bedroom.

In October I discussed how tall Aliza is and how we are helping her see that that is a good thing; we dealt with the fact that we exist in survival mode; a reporter came over and interviewed the boys and me; we spent a weekend in Iowa visiting with the Fragile X Heartland Alliance; and I talked to the boys' 2nd grade class about Fragile X and about special needs in general.

November saw the start of the Fragile X Writer's Series; I reviewed all the therapies we've done with the boys through the years, comparing and contrasting; the boys had a regular sibling interaction that I celebrated; we had a long appointment in Chicago; and Aliza expressed her thankfulness for her brothers.

In December I related to some of the kids at the school I work at; The Fragile X Writer's Series continued on; I documented the first real snowfall of the year; I compared the journey of raising special needs children to the Wizard of Oz story; and I posted a fun pictoral history of the kids visits with Santa through the years.

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