Monday, November 05, 2012

Giving Myself a Pep Talk

Excuse me while I have a little chat with myself. I've been stressing over something I shouldn't be.

What happened is, I finally got the call from Frasier autism treatment center that Zack and AJ have reached the top of the waiting list.  The list they've been on since last June. We have our first evaluations there in a couple of weeks. This is kind of a big deal - kind of our first big venture into a therapy regimen since quitting ABA therapy about a year ago. It's very exciting.

And I've been a little afraid to be excited for it.

This will be about the 4th kind of therapy we've tried.

My mind rolled itself up into a ball and went right off a cliff after I got the call from Frasier. Like every other new therapy and medication and doctor we've tried, I was so immediately so excited. We waited for months for this. I'd filled out yet again stacks of forms. Twice.

Exactly like I did before we started the STX209 drug trial. And before we started speech and occupational therapy at Courage Center. And before we started the intense ABA program.

When we were thinking and talking about trying ABA, the head honcho, Nancy, was full of statistics that promised amazing results from ABA. She said a huge percentage (I don't remember exactly what the number was) of the kids treated with their ABA therapy were able to attend kindergarten without any aides or help and with few, if any autism symptoms.

I knew that wouldn't be us. Fragile X is genetic. It can't be "therapized" away. It can be improved upon, assisted, but it's always going to be there. I told Nancy this. We talked a lot, several times, going round and round about it. In the end she convinced me that ABA would be beneficial.

And it was - I admit it! They really have better control over themselves. They express themselves better. They follow rules. ABA definitely helped the boys. But like a lot of things we've tried, it ended without some major goals being realized.

I have to focus on remembering all the good things they got from it. I knew it wasn't a cure.

It was the same thing with the drug trial. I tried to keep my hopes in check and realistic, and while the drug has been helpful and definitely has benefits - it wasn't as mind-blowing as I had hoped.

Admittedly my expectations were way out of whack. The day we gave them the very first pill, we braced ourselves and stared at the boys, knowing it was insane but half daring to hope that that day would be the day that changed everything. The proverbial "first day of the rest of their lives."

Okay, so let's try to be completely honest here. Would I do ABA again, knowing what I know now? I think so. Maybe. I do know it was good for them at the time.

Would I do the clinical drug trial again? Absolutely. No question.

So I give myself permission to be excited and anxiously anticipating the therapy at Frasier. It will be a good thing.

It feels sometimes like I've been chasing something - a perfect treatment, a cure, whatever - ever since we got the Fragile X diagnosis. We've tried so many different medications and therapy routines and styles, and it's easy to look at all we've done through the past 6 years and think - "all that work, and they still have Fragile X." Yes, they do. It's in their DNA. They always will have Fragile X.

But hopefully they can live with less anxiety, better sensory perception, and fewer upsets. I guess that's why we do all that we do.  Why we keep trying different things.




The only Halloween photo I got where everyone is facing the same direction.


No comments:

Related Posts with Thumbnails

Labels

#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