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

Is It Possible?

Is it possible that the twins have stayed on the same meds for a while? Fred is on Risperdal and it’s working fairly well!  Wilma is on adderral and geodon (and all the poop meds— enemas, metamucil, colace, probiotics, etc) and….. it’s working fairly well!  Is it possible that Fred has had ONE toilet accident in the past many months (not counting night-time)?  Is it possible that Wilma (only so far through great scheduling and enema timing, etc) only has one accident every few weeks or so?  Is it possible that Fred is down to biting once a month?  Is it possible that Wilma is down to massive tantrumming once a week?  Is it possible that Wilma’s whining and impatience doesn’t bother me so much anymore BECAUSE things are so much easier in general?

And the BIG ONE—- -because the Jewish camps aren’t affordable (as if I could afford two camp tuitions AND two one on one aides) and the special needs camps aren’t affordable (the past four summers we sent them to the ONE affordable special needs camp on this side of town and it got worse and worse each summer—- AND they tripled their price— so now it’s babysitting, not camp— AND too expensive)——– I’m doing CAMP MOMMY and it’s going halfway decently?????

So far we’ve done playgrounds, science center, out to lunch, out to ice cream, spraypark, mall, chuck e cheese… and we built a swingset (they helped me drill!). cooking, baking— Wilma thinks challah dough is a great sensory activity. gonna put up a basketball hoop next week and then we’re getting either a trampoline or a pool (Wilma keeps changing her mind). later in the summer we’re doing piano lessons, and we’re keeping up the limudei kodesh tutoring. We’re down to 3 ABA sessions a week and up to 2 speech therapy sessions a week. Most of my work I’m doing after they’re in bed (and still making decent money, amazingly), but for a few hours a week they come with me to my local sm client and they play with the ipad and read while I work. On the docket still to do…… bowling, library, playground world, and lots of the area playgrounds. We’ve played a few games, read a bunch of books, done some coloring/painting/etc— and so far in the past 15 days have watched ONE dvd— my daughter is NOT good at sitting and watching, lol. TRYING to get them to ride bikes with training wheels, but our gross motor skills are kinda rocky and that’s definitely a non preferred activity (double meltdown fodder). They DO like their scooters though. Here’s a funny—– one twin got a TONNNNNN of summer homework and the other twin got none. So unfair— that’s the icky thing about them being in different schools.

And the zoo. how the HECK did I forget the zoo? and I’m getting braces again so soft food for mommy will be a theme— lol.

I hire help, I utilize my hubby who is off all summer (hello, I’m the only income all summer— you will play with kids when I wanna work, k?) and SOMEHOW, so far so….. GOOD?!?!

BARUCH HASHEM for ABA (6 hours a week for Wilma these days— still waiting priority on the waiver wait list for Fred) and the right meds…… and for these monsters getting older and more mature!

Also?  Also?   Wilma can walk a mile with no stroller now!  HA HA HA HA!!!  Every family walk does NOT involve her flopping down and refusing to move!  (as long as SHE picks the route).  Bye bye hypotonia— you don’t rule our lives anymore!  I might sell the fancy expensive special needs stroller soon!

 

Random Fun Stuff

Just some random funny things my kids have said and done lately….

 

Not something Wilma said, but something she did…… explain to me why my 8 year old needs to wander into my bedroom long before it’s time for me to wake up to complain that she’s tired?

“Today is no homework day. It’s also crumple up your paper and throw it in the trash day.”  – Wilma

Wilma said she’s going to change the Art Room at school to the Fart Room. Picturing her with a big F made out of construction paper to tape to whatever sign they have up there like in the Captain Underpants books, I told her she can’t do that. She said “Why? There *ARE* a lot of people who fart in there!”

When the therapist told me that Fred is working on idioms Fred said “Like it ain’t over till the fat lady sings…. hey mommy, will you please SING for us?”

A certain very awesome substitute teacher just posted about my kiddo on facebook: “Just finished two day sub assignment at Noble Elementary school. A certain student and I got to talking about the periodic table, and I told him I made word games with the elements. Such as: tungsten oxygen oxygen fluoride is what a dog says. He went on to call this “tungsten dioxygen fluoride” and drew a picture of the “dog-iotic table”. He then went on to explain ununoctonium to me. U-La-La!”

My husband told Wilma that friends went to Fun and Stuff. She’s never been. Hubby said it’s expensive, and we were discussing whether to go this summer. Wilma says “let’s have a lemonade stand to raise money for a Fun and Stuff trip!” (big dramatic pause). “or we could raise the money for cancer research….”.

we went to an all you can eat buffet for dinner. (our community does one before Pesach each year). Fred was whining that he was tired and ready to leave. But I was still eating. Instead of screaming and having a meltdown, with a twinkle in his eye he looked at me and said……”that’s ALL YOU CAN EAT”.

Fred: “energy is mass times the speed of light squared.” Me: “how did you know that?” Fred: “Albert Einstein told me”.

Wilma: “when were YOU in second grade mommy, about 150 years ago?

Another Fred math funny. He tried to explain to Wilma that 1 plus a half plus a quarter plus an eighth etc etc etc has a limit of 2. Wilma said “I thought the sky was the limit!”

 

 

 

Hands To Self

oy vey.  EVERY day at home, Fred touches me inappropriately.  One breast, the other breast, both breasts.  I move his hands and say nothing.  I walk away and say nothing.  I tell him no.  I send him to another room.  I hope it’s a very long horrible phase that will end at some point.  How can a child who can do 9th grade math also be THIS inappropriate?  In my prayers EVERY DAY— please don’t touch your teachers or friends this way.  He has.  He did.  Up till now it was “just” his teachers.  Now he’s touching his female classmates’ breasts.  School is doing a social story and sending home a copy but I need more bright ideas……. I LOVE mainstreaming this child and I HATE mainstreaming this child.

All in one post because I’ve been ignoring this blog (what else is new?) while I get busy with life.

First, her encopresis/ megacolon.  We’re stuck.  We are down to one normal sized bowel movement a day  (thank GOD!)…. AND STILL the random soilings as well.  When she soils we make her sit on the toilet, get the rest out, and be calm while we wipe her and change her.  Every night after dinner she needs to produce on the toilet.  If she doesn’t, she gets an enema.  That was all fine and dandy until recently she decided she no longer wanted enemas so the threat of an enema produced a meltdown.   A 30 second procedure shouldn’t involve an 8 year old screaming for twenty minutes. Wishing there were better options. But when you’re left with very few options after trials of other stuff, (Miralax brought her back to the 10 to 17 soilings a day, new poop around impaction— she got re-impacted on Miralax) and the kiddo becomes less and less compliant, and older and stronger…… ugh. Sadly, it used to be a breeze to get this done.  She is not at all impacted.  She is on probiotics and metamucil every day.  I have NO IDEA when her nerve endings will decide to tell her brain that a poop is coming and SHE will initiate a bowel movement in the toilet without being scheduled or enema—ed.  But when that day happens, it’s party time.

Second, my husband was in the hospital for six days recently.  2 kids, 3 pets, laundry, dishes, trash, bill paying, kid appointments, etc depended on me alone that week. I had strep throat TWICE that month. Mommy doesn’t have time to get sick but get sick she did anyway.  He was in for a horrendous abdominal abcess— we have no idea what caused it but he needed six days of IV antibiotics and a couple weeks of oral.  He’s fine now— some residual pain if someone bumps into him in that area of the body– should take a few more weeks and he’ll be perfect.  waited a long time with 2 autistic 7 year olds for my appt at minute clinic. I got diagnosed with strep again. got my antibiotics, got in my car to go home, and…. minor car accident, my fault. I tapped a car while pulling out. So then there were two autistic 7 year olds screaming in the back seat because we weren’t going anywhere— the other car was a woman a bit older than me and an elderly man. The woman was trying to calm the man down by taking a photo of my insurance card and license but she didn’t feel there was any need to call the police— it was a tiny scratch on their car. The elderly man told me I shouldn’t have a license. Then out of nowhere he fakes a fall. He wasn’t even in the car when I hit it. He was standing next to it. All of a sudden he falls down. I burst into tears because I have a husband in the hospital, strep throat which hurts like heck, and two screaming kids. So the woman says they won’t call the police. Right then in the four minutes I was crying, of COURSE I saw someone I know. Long story short, they did NOT file a claim but MAN what a day!

Next, I got my TMJ splint. After six facial surgeries, upper jaw expander, braces, and retainer, I now have TMJ.  I need six months of splinting and then braces again.  So far, I’m taking it out every time I try to talk on the phone. You’d think I’d be used to orthodontic craziness but it’s been decades.  Good luck understanding me when you see me.  I sound like Cindy Brady.

My kids had winter break for 2 weeks. They have drawn armadillos playing the violin. They have watched youtube videos of “Fergie” as Stacy Ferguson from Kids Incorporated in 1984 (I totally remember “Fergie” as a child and they didn’t believe me). They have picked each other’s noses (I never said my children were normal). They have visited two different hospitals, watched me get tested for strep, gotten themselves tested for strep, been out to lunch and for ice cream, been to ToysRUs, been to the post office and the grocery store, and begged incessantly for ipad time. We did (try to) watch one movie—– my blood pressure is still high from that event (MOMMMMMMY CHANGE THE CHANNEL!). School came back again and sanity was restored.  But when you transition autistic kids back from winter break, a snow day is sure to hit.  then a four day weekend (Friday was teacher in service day and Monday was MLK).  Next up?  Spring break.  Kids are both having a REALLY rough time getting back into the swing of things…. psychiatrist thinks it’s still from transitioning back from winter break and doesn’t want to make med changes yet.  CURRENTLY he’s on risperdal which had been working well till now, and she’s on adderall and geodon.  Switched to geodon from abilify which was making her gain weight.  Not sure if i’m hating the geodon, or hating that we just had winter break.

And finally, Fred might be a panda.  :)  In a neurotypical child, if mom gets strep throat twice and has both kids tested to see who the carrier is and one kid is a non symptomatic carrier of strep and gets two antibiotics, gets tested again, and no longer has strep, you’d be done.  In MY child, since I don’t know whether his behavior increases lately are from winter break or from strep causing PANDAS (I’m too lazy to explain it– please use google) since he acts a LOT like a PANDAS kid, he’s now about to do a month of a third antibiotic— PANDAS protocol with our pediatrician’s office.  If it helps his behaviors, we look into a PANDAS diagnosis (would that help him move up the medicaid waiver wait list so he can get ABA sooner?  hmmmm).  If it doesn’t, then hey— at least we know he’s no longer gonna give me strep again (which hurts like a bitch in a grownup, by the way!).

I’m working more recently.  Aside from Mary Kay and Send Out Cards I also have a small social media business.  Just one of my social media clients wants me for at least six hours each week.  Financially, yay.  Housework wise?  bleah.

Oh and Fred, dear sweet Fred.  BIG meeting tomorrow with the IEP team and the head of gifted for the whole district.  They are now giving as much attention to his IQ and his gifted identification as they are to his autism and at this point, they need to differentiate his instruction more than is comfy. I’m not sure they’ve ever seen such a low functioning kid (psychiatrically, behaviorally, socially) who is so academically advanced.  I just don’t need to be told that it’s the highest IQ they’ve seen in many many years when the boy still poops himself from time to time, ya know?   On the table is skipping a grade (I’ve said no before, but they’re starting to convince me, if they keep him superglued to an intervention specialist who gets him), a gifted program at a different school, or a really individualized program.  I’ll know more tomorrow and I will try not to wait two months to blog again so you all can catch up.  As for Wilma, she’s not gifted, doing fine academically, and will stay at her current school in the correct grade.

Now— kids are back in school.  No more hospital for Abba.  No more strep for me.  Can my life please get boring again?

Oh yeah, they turned eight.  Woot!

 

 

 

 

 

 

 

I’ve collected a few goodies for you all in the past month….. these kids are a riot.

Usually if Wilma ticks off Fred, he screams and tries to bite her.  Lately we’ve been thrilled because he usually doesn’t succeed and usually listens when we ask him to stop and go to another room.  This time recently when Wilma ticked off Fred (she pooped her underpants and refused to comply when I told her to sit on the toilet and get the rest out and have me clean her up etc, and she lay on the floor screaming)….. he didn’t scream.  He didn’t bite.  He simply wrote her a detention slip.  I kid you not.

The same child that mooned Wilma’s therapist today. The same child about whom we’re having a meeting next week because keeping him with his peers isn’t the best option, and moving him to a different grade also isn’t the best option….. educating this child is a challenge—- Fred had a really bad day at school today. Fast forward to our phone conversation with my father in law. Fred told him that he visited the principal today. Dad asked him what that was all about. Fred said, and I quote directly, “Screaming, crying, biting, hitting…and the list goes on!”

Wilma had a blanket around her shoulders and had made up a super hero name (Pants Head). She asked if she could put on her boots and I said no because I didn’t want her tracking the snow/water into the house– the boots needed to stay by the door….. she said “Super Heroes don’t wear just socks!”. On the one hand, she’s correct. On the other hand, how many superheroes wear pink boots with velcro?

We were on the phone with my father in law, who gave us some money towards the twins’ birthday presents. I scripted for Fred “Thank you for your contribution towards my birthday presents” and he repeated… with a very confused look…. “thank you for my constitution….?”

I was drinking a water bottle while driving. Wilma from the backseat said “you can’t drink and drive- it’s illegal!”

“Mommy I have gym today.”. “Great. Have fun.”. “I’ll send you a postcard mommy.”

The fun of having guinea pigs in a house with Wilma. “oooh she’s got lettuce and peppers— I’m going to eat some!” “Wilma please don’t eat out of the guinea pig dish— they pee and poop on their food”. “no worries, I’ll wash it off first!”

#‎Youmightbeanautismparentif your 7 year old SON is singing “my milkshake brings all the boys to the yard”

 

Moshiach isn’t here yet because he doesn’t know whether to wear a kippah srugah, a velvet yarmulke, black and white clothing, colored clothing…. or if she is a woman (I know, I know)— whether to wear stockings with a seam, a shaitel, a hat, a snood, a tichel……   I have a very “WHY can’t we all just GET ALONG” attitude about Judaism and my husband seems to attract the crazies!!!!!  JUST THIS WEEK:

1) Three different parents from a more “right wing” school have spoken to my husband about him working at a more “left wing” school (he had worked in the past at the more “right wing” school).  He’s gotten comments such as these.  “Have you been demoted?”  “Has your student gone off the derech yet?  It’s only a matter of time if he goes to ___ school”.  “Why did your student’s parents switch him to a non frum school?”  (It IS frum, just more left wing than the other school— sheesh— and at any rate, why the #$%#$% is it anyone’s business why a kid goes to a particular school?  Parents know their child best.)

2) One parent kept going on and on so my husband said how great it is to work at a school where the students have the opportunity to make a parnassah.  Well ok my husband should have kept his mouth shut but apparently the other man almost beat up my husband for saying that men should work for a living and not sit in kollel.  He then told him that attitudes like his bring down our neighborhood and he should move to another neighborhood.   Um, right, because EVERY man in this neighborhood should learn in kollel.  Yeah—- I see their wives are all making $100,000 a year— not.  How about supporting yourselves and not living off of government assistance as you decide to have as many children as you want?

Enough already, people.  LIVE AND LET LIVE.  HaShem has too many assistants.

It’s my blog and I’ll vent if I want to.

 

Editing to add a bunch of similar stuff from a previous post— may as well stick all of this crud together in one post to keep track of it all— might write a book someday about how to get along with different groups of Jews and not make yourself sound like a total asshole.

Just the STUPID ridiculous things people have said to us this summer about our kids and/or about my mother in law dying.  Here’s a fun sampling.  PS— the ones that involve Orthodox Jews?  I’ve been asked to stop posting about those on facebook because of Chillul HaShem.  You know what’s Chillul HaShem in my book?  People not being aware that people of all colors, shapes, sizes, and yes, religions can be ASSHOLES.  Sorry for the language but it’s my blog and I’ve got to curse.  Read on.

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1)  When my husband takes one of our kids for a walk in the special needs stroller and walks by a particular house, a bratty kid (unsupervised of course) says….  “WALK MUCH?”   Another group of kids (with the father right there not saying anything because he can’t stand our kids even more than his children) says….  “baby baby…. goo goo gaaa gaaaa”.  Yep, fellow Orthodox Jews.

2)  When my husband asked a man at the zoo to please stop staying at our son (who was screaming “I AM A PSYCHO!”), he got punched.  HARD.  In the stomach.  (my husband, not my son.  But still!)

3)  Right to my husband’s face  “is your son still a freak?”

4)  At synagogue my husband was told he shouldn’t say kaddish for his mother because she didn’t believe in God.    Nobody said anything because the person who said it learns full time (in Orthodox Judaism the men who learn full time and don’t work for a living are held to a very high regard by many.  Me personally?  I’m FINE with men learning full time ***IF*** they can do it without Medicaid, food stamps, WIC, section 8, and all the rest because sucking off the government is not “making it” financially nor is it supporting your wife and family.)  So when someone saves for years in order to enter Kollel I think it’s wonderful.  How often does THAT happen?!?!

5)  I think the extreme idiot award goes to the person calling himself an Orthodox Jew who told my husband his mother died because he shaved off his beard like a goy (deragatory word for non-Jew). (my husband follows Rabbi Moshe Feinstein who wrote about how men living in America can shave their beards for particular reasons while being Orthodox Jews).

6)  During shiva, a tzedakah organization called for money. Hubby said no, he’s sitting shiva. They called back and left a message and an email. The email said that she died SO THAT he’d have a chance to donate to a worthy organization—- guess who is never getting a penny from us!??!?!? what is WITH people?

Just Venting

Many years ago the pediatrician sent us to the psychiatrist.  The psychiatrist sent us to the wrap around center.  the wrap around center was awful so we begged to get into the developmental pediatrician.  She bumped one twin to the psychiatrist (a different one).  She referred both twins to the nutritionist.  Both twins lost weight.  Psychiatrist had Fred change meds and his blood sugar went up and BMI isn’t good.  Developmental ped keeps Wilma on a med that makes her gain weight and her weight increases greatly.  Her BMI is awful.  My husband is insulin dependent diabetic and I have hypoglycemia and had pretty intense insulin dependent gestational diabetes so….. She refers both twins to the endocrinologist.  Endocrinologist is doing A1C’s on both twins, sending both twins back to the nutritionist, and asking us to enroll in a weight loss program that asks us to come in at least weekly.  With 8 hours a week of ABA on one twin, speech therapy on both twins, 2 hours of homework per week per twin, and tutoring/ friendship circle/ other activities, I’m finally stepping off the treadmill and saying NO to the weight loss program.  Each developmental ped appointment takes two hours— this morning’s endocrinologist appointment took two hours—–  getting bloodwork from Fred requires an entire building to take a valium.  This morning’s double meltdown at the endo was because I wasn’t going to be able to get Wilma to school in time for the beginning of recess.  ALL of our appointments are within ONE hospital system (at a bunch of different campuses)——-  something has got to give.  DOCTORS:  STOP ASKING THE SAME QUESTIONS at every appointment.  Spend 15 minutes looking on the computer at the history from multitudes of other doctors— then bring us in, do some poking and prodding, and ask a few questions.  My kids are missing too much school and I’m missing far too many brain cells.

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