Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for April, 2014

THIS is the Awareness We Need For Autism Awareness Month

THIS is what we should be talking about.  Not lighting it up blue, not talking about how neurological differences are au-some…. THIS is what we should be talking about.  I thank my lucky stars each day that no noses have been broken yet in our home— nobody has been hospitalized yet.  My twins, indeed, are the HIGHEST functioning children of parents in this facebook group to which my friend refers in her post.  But I fear for the future…….  if things worsen and my kids get bigger and stronger than me.  I know for certain that my son would have been put in residential treatment years ago if not for the therapies and medications we’ve tried thus far.  My goal in life is to keep my kids home with me, regardless of well meaning friends’ comments “you can’t live like that!  Send them to live in a treatment facility!”

THIS is an au-some post.  Yes, the term au-some is fine.  Just don’t tell me that autism is au-some because it’s NOT.

 

 

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

 

Enhanced by Zemanta

Roses Are Red….

Proud echolalia moment: Mr. SortedMegablocks, my wonderful hubby, told the kids that when he was a kid he wrote on a test: “Roses are red, violets are blue, this test stinks and so do you.” So guess what Fred wrote on a test…. in first grade? thank goodness for teachers who understand echolalia and simply put a smiley face….. one of these days one of my kids will do something APPROPRIATE and I’ll just be in shock.

 

I Have Uttered the Words: “Don’t Pick Your Brother’s Butt.”

me:  “Wilma, stay away from your brother, he bit you and he’ll bite you again— just stay away from him.” Wilma: “but mommy I’m just trying to pick his butt!”. I swear, this book is writing itself…….

Can You Tell?

and for the rest of us where you can tell the child is on the spectrum, give the mom a good long judgemental stare…. *KIDDING*!  People either LOVE this one or hate this one– see why?

 

autism meme

April update

I don’t blog enough.  Mostly because 100% of my time is spent coordinating the psychologist, the developmental pediatrician, the outreach worker from the Center for Autism, the behavior specialist from the county board of DD, the intervention specialists at both schools (IEPs, FBAs, constant emails), and now a new psychiatrist, along with the usual regular doctors and dentists and errands and chores and such.  The other 100% of my time is spent dealing with behaviors and actually working with my kids (or playing with them, or reading to them, or wiping their butts….).  The other 100% of my time is spent working for an income.  300% of my time is accounted for, leaving no time for blogging.  My ideal would be to keep this site updated daily, but…. yeah.

I was going to post about how one twin had a horrific enco day two days ago (10+ poops in her underpants— ok after the first couple it was pullups the rest of the day, but I still had to buy yet another pack of underpants) and with the other twin SIBS (self injurious behaviors— he bites himself)  are back (4 times in the past week) and we had some massive meltdowns, but nah, I’d rather point out happy stuff about the walk and the movie from last week. Two steps back, half a step forward…… spring break till monday—- there will be at least one GOOD day between now and Monday- I’m determined.

So here’s the good news:

Taking them to their first movie (Muppets Most Wanted) was great—- everytime they lost interest we let them play with an ipad or phone for a few minutes. or go to the bathroom. or play an arcade game. I left the movie at least 3 times that I remember– but MOST of the time we were in the theater and watching. well they watched 2 thirds of it between all the ipad breaks. I loved when Wilma stood up at the beginning and said “I don’t want to watch this anymore” but then with LOTS of encouragement made it through the whole darn thing. We were the the only ones watching that movie so we took stand up and stretch breaks too. They were OKAY with the lights and sound— 6 months ago it would have been a massive problem. They both lost it a little right when we got home– no shock there. As for the movie, I think I liked it more than the kids did—- spoiler alert— don’t read on if you don’t want to know……………. Lady Gaga, Tina Fey, Salma Hayeck, Josh Groban—- LOVED all the cameos.

Right on the heels of the movie theater trip I have more good news……… most of you don’t know that EVERY SINGLE TIME we take a walk together as a family (and it has to be all 4 of us because the last time I took a walk alone with the kids it was seriously unsafe when he went into multibite mode and I didn’t have enough hands to put her in the stroller while he was off biting strangers because she lay down and refused to walk in the middle of the street— never mind…..)—- EVERY SINGLE TIME we take a walk together as a family lately, it’s gone well— up until it hasn’t. That is, we walk, we stop and talk to friends, the kids have little mini dramas over who gets to sit in the one special needs stroller because even though only one kid has a physical problem with walking a distance, the other one just falls apart from overstimulation….. as we talk to people and the kids play it’s great— and then whenever we’re almost home whether it’s 20 minutes in, or an hour in, THEN the double meltdown begins in all it’s glory and the biting, hitting, screaming ensues. EVERY walk ends up with us walking in sweating and 3 out of the 4 of us in tears (hubby is a man— no crying there– lol). We keep trying to take a walk together because it goes so well for MOST of the walk and we know that SOMEDAY we’ll have a walk that is 100% fine. TODAY IT WAS 100% fine. No permanent scars here, folks. Could be Wilma’s med adjustment, the new supplements we’ve added, the behavior charting…… all I know is that we took a walk together as a family and smiled the whole time— THIS is news. May this be a beautiful spring/summer with lots of GOOD family walks!

Crayons

crayons

 

soooo glad we don’t have these at our house. my kid doesn’t color with crayons. he lines them up in rainbow order, alphabetical order, reads the names out loud and if he’s missing one will look for it like crazy. paper and coloring books— still blank. He would have a few questions about these……

Wilma-isms of the day

It’s spring break and she was in rare form today.

For the last 2 weeks my husband has been off so he’s taken one twin to speech therapy while the other twin stays home with me. Today he was at work so I took both again. Wilma said “mommy, how will you handle BOTH of us?” lol.

Then in the car after a double meltdown….

Wilma: “mommy, can you put my shoe back on?” Me: “you shouldn’t have kicked it off in the first place”. Wilma: “I was TRYING to kick my brother!”

Tag Cloud