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)

 

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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!”

Our First Movie

Tomorrow for the first time ever, my kids are going to watch a movie. The most we’ve ever been able to get through at home is 20 minutes (at a time) of Tangled on tv. They’ve never been through a whole movie at home, and have NEVER been to a movie theater. Our behavior intervention specialist from the county wants to help us expand our world and help us go places we’ve never been— we’ve never been to a movie theater because the following could happen—- the noise/ lights could throw Fred into multi-bite mode before the movie even starts. Wilma could stand up 15 minutes in and demand they change the channel because she wants to know what else is on. Either of them could stand up and bolt. With one kid, fine— but with both— one kid bolts and the other kid flops on the floor refusing to move and screaming like a maniac. For something like this, I certainly wouldn’t try it by myself with them, but we hadn’t been ready yet to try it even as a whole family— this is a good excursion for our specialist to help us. Wish us LOTS of luck tomorrow—– hoping it goes well and we see a good majority of the movie—- we’re seeing Muppets Most Wanted. I’m expecting lots of breaks and at some point Fred in the lobby playing with the ipad because he’s just DONE, while Wilma has to stand up in the aisle but hopefully can make it through a good chunk of the movie.

We Need an Injury Lawyer….

Just before Passover, Fred was running to the bathroom and he bumped his head. He was absolutely fine, but after the incident he told his intervention specialist that he could not do his work. The reason: “I am badly injured and I need to call Elk and Elk.”

Self Improvement? – I’m Jewish!

Something new I want to start doing on this blog is making note of specific concepts/ stories/ gleanings I’m getting from books I’m reading. You’ll notice that books I read are about Judaism, autism, or business. First up is a Jewish book: Self Improvement? – I’m Jewish! by Rabbi Abraham J. Twerski, M.D. (LOVE this Rabbi—- a psychiatrist AND a Rabbi. An Orthodox Jewish professional who approves of secular education, and mental illness not being hidden due to potential shidduch concerns).

On prayer: “There is a story about a person who, beginning weeks before Passover, laboriously cleaned his house for the festival, and cleansed his kitchen from chometz to the point of surgical sterility. On the last day of Passover he discovered that in the well from which he had drawn his water during all of Passover there was a loaf of bread floating on the surface. Broken hearted, he asked his rabbi why he had fallen victim to this transgression, especially since he had exerted so much effort and energy to avoid chometz. The rabbi explained, ‘the prevalence of chometz all year round makes it physically impossible to eliminate it totally be unaided human effort. You tried very hard indeed, but you forgot to pray to G-d to make your efforts successful. Had you prayed for Divine assistance, then all the work you had done would have been blessed. By failing to pray, you indicated that you thought you could do it yourself, and so you were shown that you were wrong.”

On teshuvah: “Rambam states that proper teshuvah is achieved when G-d will testify that this person will never again repeat the sinful act. This statement elicited a question from many commentaries, that inasmuch as the Divine foreknowledge does not determine a person’s behavior, and a person always has complete freedom to choose to do either right or wrong, how can G-d testify that someone will never again do a particular sin? This appears to contradict the principle of total free will. I was provided with the answer to this by a man who delivered a talk on the twenty-fifth anniversary of his sobriety. He said ‘the man I once was drank, and the man I once was will drink again. I am sober today because I am not the same person who drank. If I ever go back to being that person, I will drink again.'”

On community: “The Torah states that Israel will be so strong that five of you will pursue one hundred of your enemies, and one hundred of you will pursue then thousand. Rashi notes that these figures are not mathematically correct, because if five pursue one hundred, the ration is then that one hundred will pursue two thousand, rather than ten thousand. Rashi answers that there is strength in numbers, and that the relationship is exponential rather than linear. Five may subdue one hundred, but one hundred people working together can triumph over ten thousand. Individuals involved in altering a self-destructive lifestyle should therefore seek each other out and work together toward their common goal.”

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