Monday, January 04, 2010

Update, Recap, and some more of the same old, same old

Starting 2010 with a new blog and a new initiative to write in it often!  Actually as you may notice from the archives, this is an old blog that I ignored for a few years, and picked back up when I couldn't revise and change around my blog as much as I wanted to.  The wordpress one is

For those who are new, here's the scoop.  Our two boys, AJ & Zack, have Fragile X Syndrome.  That is about all you need to know, in order to know what rules our lives.  To find out more about how they were diagnosed, tune in to  To find out just what Fragile X is, tune in to  If all that clicking is just too much effort for right now, I understand, and I won't pressure you or give you a hard time.

Right now the boys have a pretty strict schedule of ABA therapy, lunch, school, ABA therapy, dinner, and bed.  On Fridays they get a bit of free time as they don't have school.  But otherwise, 6 days a week, they work pretty hard learning how to sit down and gather some study and life skills.  They are nonverbal, but are slowing gaining words and sounds.  AJ speaks just a bit more than Zack does.  AJ says "fish", "hi", "bye", "d'oh" for no, and simple things like that.  Zack says "up" clearly, that is about it.  He used to sort of say a drawn out "by--eee" but he doesn't now, he just waves  Talking seems harder for him, it seems to be a lot of effort for him to get a defined sound out.

Currently their favorite activity is watching Dora the Explorer or The Wonder Pets or The Wiggles, from a high vantage point like the top of the bookshelves that are on top of our upright piano.  Heads bumping on the ceiling.  So we are working to curb that habit, because sometimes they don't climb all the way up, they just stand on the keys and jump, which is hard on the piano and my ears.  Gerber oatmeal is one of the 6 things AJ will eat, and he thinks he needs it every meal for every day.  Zack is my little hero because while he is nearly as picky as his brother, he'll eat almost any breaded chicken nugget.  AJ refuses any chicken that is not a McDonald's chicken mcnugget.  I've tried saving the McDonald's chicken boxes and putting other chicken nuggets in there, and he knows.  He studies them carefully, turns them over and over in his fingers, and puts them back.

Aliza is a 1st grader and she's the tallest one in the whole grade.  She's going to be 7 in less than 3 weeks now, and I'm thinking of having a karaoke party.  Sounds fun for a gang of 7 year olds, right?  I'll rent or borrow a karaoke machine (is it ka-ro-kee or kare-a-o-kee?), and find some music online hopefully, and have all the girls take turns singing their favorite Disney, Hannah Montana, and whatever else I can find.  I found a neat craft idea where they could make microphones, which I'm thinking, will come in handy when they dance around and pretend to sing.

Mark labels himself as "job challenged" at the moment, he's hunting for work.  We expect that 2010 will be better for him in that regard.  2009 was not a good time, for the most part.  2008 wasn't that great either, come to think of it.  We are past due for a great year.

I am working on finishing up my 2nd term as Newsletter Editor for the Mothers of Multiples club, and am volunteering with ARC on their committee to plan the Dakota County Parent Retreat.  Mark and I love that retreat, we've been to it twice, and can't wait for the next one.

One more thing we anxiously anticipating is the International Fragile X Conference, in Detroit in July 2010!  Isn't it funny how in July 2008 when we first started hearing about this one in 2010, that 2010 seemed so far away?  Why does two short years from now sound so infinitely far away?

1 comment:

ST said...

Just found your blog. It's adorable! Nice to "meet" another family dealing with FXS.


#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