Friday, January 14, 2011

Aggression

You'd think after 2 1/2 years of ABA therapy, we'd be compliant, and done with aggression.  And most of the time, we are.  I have weekly meetings with the lead therapists and they tabulate the number of aggressions each boy had from that week (mostly biting and pinching) and the numbers have been way, way down.  AJ actually had his first zero aggressions week.

But today has been rough for some reason, and yesterday wasn't exactly a walk in the park.  I'm not sure what has changed, and it's exhausting to constantly try and come up with a reason for it.  Has anything in the routine changed?  Are there new therapists or teachers?  A change in medication?  Have either of them been sick, or not sleeping well?  Is he hungry?  What is the mysterious reason for this change in behaviors?

At least one of these things occurs practically all the time.  And the reason is Fragile X.  I get so tired of trying to think of what might have caused a behavior.  And trying to figure out what to do about it.  I hate when they ask me.  I want to say, isn't that why you are here?  If I knew what the heck to do with these kids, I wouldn't need a team of 8 therapists rotating through my house every day.  One night this week three of them were here until almost 7:30.  They were training someone, and I had no idea how much I rely on their leaving by 7:00 PM until they were here later.  I was just desperate for them to leave so I could relax, put on my mental PJs.  I mean, with people working in my house all afternoon, I can't really let my hair down, you know?  And I didn't realize how much I need them to leave until they didn't.


There's even therapy on Saturday morning.  I so look forward to Sundays, when nobody comes over!

3 comments:

Salt in Suburbia said...

Yep... we finished ABA last summer, but I got that question about "what's changed" when the boys had a particularly distracted or non-compliant day/days/week etc. And you're RIGHT, it's so hard to keep trying to think what's "different." And the SBA is always looking at you, prompting you with ideas, waiting... well?

Chris P-M said...

Oh yes...not feeling really "at home" in your home gets old. Although I also thank my lucky stars that I get some respite, or I'd totally lose my mind.

It does get frustrating always looking for a "reason" for behaviors, because sometimes they just ARE. There always seems to be an implication when someone asks about conditions, as if we can change something anyway!

lilyvnshtp said...

Oh this blog really tore through my heart. So many times when my Fragile X son was growing up...even now at 25 he still has times when he gets frustrated or angry for unknown reasons and lashes out or stamps his foot so hard that it resonates through the floor of the house. When he was a child he would bite his hand so hard it would bleed, sometimes while hitting one one of his siblings at the same time. Or he would scratch your face while you tried to pick him up, or slap you. There were times he hit or slapped his teachers and therapists. He was expelled from school twice and they threated to remove him completely if we couldn't get his agression under control. They kept asking me what was causing it. Duh, it's Fragile X, stupid. And if I only knew precisely what was going on in his head, don't they think I would have done anything to stop it? Once he assaulted me so badly I had scratches on my hands and arms that were so deep they bled. We ended up admitting him to a rehab hospital for a week. It wasn't a very appropriate placement; there were several teenagers there his age who had either tried to commit suicide or had some form of mental illness, but were not mentally disabled or autistic. They put my son on Naltrexone, which is essentially for heroin addicts. It was awful- he became very lethargic and unresponsive. The medicine caused him to vomit, especially in the mornings after breakfast. He lost weight we were unsure of when the projectile vomiting would occur. Eventually he was weaned off this drug and I regret having to go there, but at the time were without options. We had various people coming through the house to 'help' but I always found it invasive. It was so hard to be a family. I always felt like I was under a microscope. And the paperwork - I can't imagine how you get through it with two. My son is a twin but his twin is unaffected. I read your blogs and feel once again everything that you are feeling. I wish I would have kept a blog. 25 years ago there just wasn't the knowledge, or support or the technology. I guess what I appreciate the most is your sense of humor, because I constantly told everyone who would ask me how I cope, that I could never do it if I couldn't laugh at myself or keep a sense of humor about this. At 25 he still lives at home while we wait for his housing options to come through. His aggression has subsided almost completely. Occasionally you will see some frustration but you can usually tell when it builds, and take measures to avoid the blow up. He expresses love, and we have our tender moments when out of the blue he'll say "I love you mommy" and I melt. "I love you too, sugar" and it's like he could never be that aggressive child I mentioned before. I've got my mental pj's on and he's my sugar-doo-wee. Sorry for the long rant.

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