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

Archive for the ‘Camp’ Category

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!

 

Advertisements

Seriously?

I haven’t blogged since May.  Seriously?

Here’s what you missed.  Wilma KILLED my finger.  Got 3 xrays– it wasn’t broken– “just” a bad sprain.  But that bad sprain hurt worse than many of the broken bones I’ve had in my life (all my broken bones have been on purpose through surgery- never by accident– funny that.)  It’s been about 10 weeks now and I’m starting to have days where I don’t notice the pain at all.  Until I try to bend it.  ugh.

My mother in law died.  She had battled lupus for over a decade valiantly— we all knew this was coming.  Except that we didn’t.  We all thought we’d get another year or two out of her— everytime she was hospitalized we figured she’d make it back to the nursing home and we’d still have more time.  So we were all very shaken up.  She had gotten out of the nursing home after 10 months and had been living at home for 35 days when she was hospitalized for a listeria infection (she was prone to every infection).  She got pneumonia and respiratory distress and we STILL thought we weren’t losing her. But then the internal bleeding started and the doctors stopped all medications except for morphine and told my father in law that the time was coming that week.

Shiva was surreal.  In our home we had a million chairs, an Aron and Torah, tables, siddurim, a candle burning for a week, minyanim three times a day, and the kids were out of sorts to say the least.  Picture me upstairs every morning at 7:00 am saying “shhhhh the men are trying to daven– you CANNOT yell tushy!”.  The community cooked dinners for us for a week (good thing— I had to do all the camp schlepping, all the laundry, all the dishes, EVERYTHING— hubby wasn’t allowed out of the chair for a week except to go to the bathroom).  If you’re unfamiliar with Orthodox Jewish mourning customs I encourage you to google.  It’s fascinating.  Comforting and CRAZY at the same time.  I don’t remember five minutes of calm that week.  Whenever a minyan wasn’t happening, visitors were.

Camp SUCKED this summer and the kids aren’t going back next year.  I mean it this time.  Fred got Hand Foot and Mouth disease on a Friday (no camp on Fridays) so we kept him home from camp that Monday.  Camp nurse calls to send Wilma home.  She’d been exposed.  It’s not the plague, people.  So she said I’d need a doctor’s note to send both kids back the next day.  Rushed them both to the doctor on Monday afternoon after getting her.  Got the note— she didn’t have it and he was no longer contagious.  Sent them both Tuesday.  Got the call again— they didn’t like the look of his rash and he needed to stay home for a week.  So I kept her home on Monday for being exposed, and kept him home for a week for a no longer contagious rash.  That’s the kind of summer we had with this place.  The DUMBEST projects came home after they asked me for an explanation of where they are academically and I gave it to them in writing—- they had them doing preschool level worksheets.  Daily.  And watching movies.  Daily.  There is exactly one AFFORDABLE special needs camp on this side of town and I’m DONE with it.  Next summer– camp Mommy?  ugh.  There was a month between camp and school (that month ends this coming Monday) and I feel like a truck ran me over.  In order to send them to a “typical” camp I’d have to come up with tuition for 2 kids and $$$ for two one on one aides for 2 kids.  In order to send them to another special needs camp I’d have to pay more money or shlepp them to the other side of town.

But what’s on my mind this week is the title of this post…. .SERIOUSLY?  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.

********************************************************

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?

********************************************************

That’s all for now– just needed to get those tidbits off my chest.  I have PLENTY more to say on various topics so I WILL try to blog more frequently…….

 

 

Disillusioned

The twins are at the only affordable special education daycamp on this side of town.  So it should be perfect, right?  This is year three—- the first year was awesome.  The second year was okay and we were cautiously optimistic about this year.  This is week six of six starting tomorrow– the summer has flown by.  The kids have enjoyed camp, but hubby and I are getting more and more frustrated.

First, it’s different staff every year.  We’d love consistency from year to year.  Not happening.  By the time I learn the names of the aides, the summer is over.  The main teacher always has experience, but the aides are more clueless each year.  Last year one of the aides kept telling Wilma “you’re a BAD girl!  Wait until your mom hears about your behavior!”.  Um, it’s a special needs camp— her behaviors stem from her special needs.

Fred needs to be TOLD to go potty every hour and a half to two hours.  JUST like a two year old.  We’ve told them this.  Again and again.  They keep ASKING him if he needs to make.  He says no, wets himself, and sits in his own pee until they notice.  We pick them up on Thursdays and Fridays.  Almost every Thursday and Friday he’s wet because there’s one or two staff aides in the parent pick up room and twenty + kids.  Weirdly, he doesn’t do it right before getting on the bus on Tuesdays and Wednesdays.  Or he does, but he’s not wet anymore by the time he gets home.  So we wrote a note to make sure he potties RIGHT before getting on the bus or RIGHT before we pick him up.  Friday my husband went to pick him up and he was wet.  Are they reading our notes and ignoring them, or just brainless?

We told them they may give our kids any foods with a good hecksher.  Circle k and circle u are fine with us.  So I figured they’d give a treat or two per week within reason.  Wilma comes home with her entire yogurt and fruit breakfast because “I ate a donut, mommy!”.  NOT just once.  NOT just twice.

If I wanted my kids to sit in pee and eat donuts, *I’d* be in charge of them.  So I guess we’ll try to find a different camp situation for next summer, but they’re not ready for a “typical” camp with just one on one aides, and the other special needs camps are $$$$.  Ugh.

Hubby is threatening to keep them out of camp altogether next summer.  That means I’ll get no work done all summer because he’ll be doing Daddy camp (he’s off all summer)—- which MEANS that I’ll be asked where things are or what to do with them every five minutes.  Help me find a campppppp!  (For him too!).

Now wish me luck.  Camp ends August 2nd.  School starts August 29th.  AUGUST will be a long month.  Get up, feed kids, dress kids, clean up, do laundry, separate them,  feed the kids, change kids, make sure they sleep, do the laundry, clean the house……….  attempt to entertain with a different activity every thirty seven seconds without actually leaving the house with the two of them by myself………  deal with Wilma’s enco treatment …………  deal with potty reminders every hour and a half……..  etc etc etc etc.

 

 

CAMP!

Camp starts next week.  It’s the only special ed camp on this side of town that is truly affordable.  I just spent an hour typing up the “what you’ll need to know” document— just the basic info they should have before working with my kids.  Interested?  Here goes……

 

What you need to know about the ____ twins summer 2013

 

THANK YOU in advance for being wonderful teachers!

We keep kosher so please feed them only what we send.  We’ll send their food each day.  If there’s a special treat coming up (cupcakes or cookies or pizza or something that everyone else is having), let us know in advance and we’ll send a kosher version.     They’re taking the bus to and from this year!  Please make sure there is someone walking them to and from the bus each day.

 

Fred:

Prefers to be on the outskirts playing with toys on his own (the more educational the better- he is EXTREEEEEEEEEEEEEEEEMELY advanced academically).  A good mix of letting him explore on his own and forcing him to interact with others and participate in the group is the best for him.  When he is participating in the group he should have an adult near him— when anxiety hits, he goes from 0 to 60 QUICKLY and hits, kicks, and bites.

His best behavior is one on one with a teen or adult.  If he’s having a rough day with the group, giving him a break to do advanced worksheets with one adult works well— but as much as possible he needs to learn to socialize with the other kids and take turns and communicate, etc.  KEEP HIS BRAIN MOVING or the behaviors hit.  If you’re doing 2+3 and 4+5 with the group and he’s bored, he’ll act out.  Math wise, he’s at about a fifth grade level now— reducing fractions, converting fractions to decimals, square roots….. still learning multi digit multiplication and division—- your challenge is WHAT to do with him to keep him excited academically but still participate with the group socially.  It’s hard.  He wants to learn cursive writing now- that’s something new and fun you can do with him.

He is 100% toilet trained with a reminder everytime it’s time to go (if it’s been an hour and a half to two hours since the last toilet visit, I just tell him it’s time to go.  I also have him go within 30 minutes or so of drinking anything. )  Without the reminders, he’s at about 80% —-  if you don’t tell him to go, he’ll have an accident about 20% of the time.  That’s for pee.  For poop, you have to watch for the dance— when he runs back and forth aimlessly and has a concerned look on his face, it’s time to tell him to try to poop.  He might not tell you he needs to go until it’s too late.J   But I consider him toilet trained, all things considered.  He screams and cries when he’s told to go to the bathroom over half the time—-  he just doesn’t like to have a demand placed on him.  Too bad.  Don’t let him get out of a task by screaming or whining.  Make him wipe himself after #2 as much as possible- he’s pretty good at it by now.

He’s got classic autism and a touch of adhd.  He’s on abilify 15 mg each morning and adderall 10 mg.   We’ll let you know if we adjust meds so you can watch for changes.

 

Wilma:

EXTREMELY social and interactive.  Some of what she says makes no sense but she likes us to play along.  J    Her best behavior is when the activities move quickly and she’s given lots of choices.  Her extreme adhd trumps her autism.  She’s on track academically but not ridiculously advanced like her brother.

Her tantrums can be super severe.  She flops on the ground REFUSING to move.  If you’re transitioning from one room to another and she flops down on the ground and refuses to move, don’t try to carry her or reason with her— just leave one adult with her to calmly wait out the tantrum as the rest of the group moves on. On her meds, her behaviors are INTENSE but short lived.

 

She has megacolon / non retentive encopresis.  So far she’s had 4 cleanouts, 3 xrays, a spinal MRI, and manometry.  We are doing all we can to toilet train her, but none of her bowel movements start in the toilet—they all start in the underpants or pullup—her muscles work, but her nerve endings don’t—PLEASE don’t make her feel guilty or bad about her situation— it’s NOT her fault—– lately, she’ll have a small one in her underwear but then we sit her on the toilet and ask her to push and push some more and push some more and she gets plenty more out into the toilet.  She’s on probiotics, Metamucil, exlax, and twice weekly enemas.  Please note for me daily how many poops she has and whether after a small accident one you’re able to get her to do more in the toilet.  We’ll work hard to get a lot out of her every night after dinner  so hopefully you won’t have DAILY accidents, but expect a few—we’ll give you plenty of underpants changes.  She used to poop 10-17 times a day AROUND impaction—- so we’re down to 2-4 poops a day, generally which is GREAT.  If she goes through underpants super quickly we might switch to pull-ups but she’d prefer to be in underpants.  When she DOES poop on the toilet she needs help wiping.  Like her brother she needs reminders every 2 hours or so to go pee and we make sure she goes about 30 minutes after drinking too.  When she DOES have a poop accident she won’t always admit it so twice a day or so please CHECK her underpants— if she’s dirty, make her try to poop on the toilet (assuming the accident is the beginning of a normal poop) , change her underpants and send them home if they’re salvageable- if not, toss them.  If you sit her on the toilet to poop and she can’t produce, that’s always a mega tantrum.  I’m trying to teach her that if her body can’t poop on demand it’s ok and we’re not upset and we’re just trying to teach her body how to produce normal sized poops without enemas in the right place.  Giving her a sticker or small prize when she tries to poop, doesn’t produce, but doesn’t melt down might be a good plan.

When she misbehaves, it sends her brother into a tailspin.  When she’s melting down, keep him away from her or he’ll go into multi-bite mode.

The foot braces are for hypotonia— she was late with all gross motor milestones and doesn’t have a lot of endurance— if you take a long walk together, she’ll need a stroller or wagon.

She’s got autism, but her adhd is more severe than her autism and of course the megacolon has been running our lives lately. She’s on 5 mg of abilify and 25 mg of adderral at this time.

We’ve been working a lot on her behaviors—- one of the aides last summer kept saying to her “you’re a BAD GIRL— you were a BAD GIRL today!”  —- we HATED THAT.  We’re into saying that she’s a GREAT GIRL with some behaviors she’s working on.  Big difference and since she’s super smart she knows when an adult GETS her or just TOLERATES her, so please watch the behavior of the younger assistants around her.  Many thanks.

 

Tag Cloud