It feels like it's been forever since I had time to post here! And so much has happened!
(BTW, the boys finally succeeded in completely killing our "good" computer. So today I'm on the computer where the "h" doesn't work. So if you see "te" here and there, it's because I missed pasting an "h" there. I can't tell you how much fun it is to have to type Crtl+v instead of"h" over and over and over.)
We did it! Finally. We drove to Chicago, visited Rush University, and started the STX209 clinical drug trial!
We have been wanting to get involved with this trial mainly because it's been shown to help people with Fragile X with social anxiety. In other words, it might help them tolerate a cafeteria. Or a school playground. Or a busy doctor's waiting room. Or just, regular life.h
Well, that and the fact that I like helping out with a drug trial that will help kids and grown ups with Fragile X. I like the idea that my boys are helping further the research, helping make sure this gets through the FDA approval.
I have to say, after anticipating this all summer, giving them that first dose was pretty exciting. Every dose after that one has been exciting. Now, there's a lot of different possible scenarios here -- they get three doses a day and could be getting one of several different combinations of different dosages of the trial med, or the placebo.
I'm not sure what we are expecting. While I have hopes it'll be a kind of "awakening" for them, I'm trying not to assign too many expectations here, partly because I'm not supposed to-- I'm supposed to try and be as impartial and objective as possible -- and partly because I just don't want to be disappointed. I mean, there's still no miracle cure here. They will always be two boys with Fragile X. This isn't going to eradicate their "special needs" status.
I know too, that it could take awhile for the affects of the med to start being noticeable.
But we are watching them closely for signs. Are they getting the actual medication, or the placebo? On the first night on the medication, our second night in the hotel in Chicago, Zack had a hard time falling asleep. He got himself all worked up into a little snit. He screamed and threw pillows on the floor and kicked them. Then he put them back on the the bed, staring at me through tears, saying "good boy." Then he'd throw them all on the floor again. AJ just watched him in a daze. They were both sooooo tired.
"Well, I guess Zack's on the placebo," my dad decided.
What? You think we should give it more time??
#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