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

Archive for the ‘Summer’ Category

I Spoke Too Soon

You all knew this was coming.  When I posted in June, things were going well.

The last four weeks of the twelve week long camp mommy?  well…..  it was basically a screamfest.  Before I even woke up most mornings, she’d take the ipad out of his hands (hello, we have two ipads, why fight over one?), he’d scream his head off and yup, she got bitten at least three times that I can recall offhand….. before I even opened my eyes.  They were sick of each other.  They needed school.  They needed to be away from each other.

Today was day two of school.  SO FAR SO GOOD.  And when they’re home after school they love each other again.  She tells him she missed him.  They hug each other.  From 4:00 to 8:00, all is right with the universe.  From 7:00 am to 8:00 pm, it’s not so simple.  But when they get the break, it’s a beautiful thing.

And me?  With my break I get to catch up on work and laundry and bill paying and organizing and cleaning and work and laundry and bill paying and organizing and cleaning and shopping……… well today I got my bottom braces put on (had only top ones until today- my upper jaw needed more expanding) and took a nice LONG nap— go me!!!

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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!

 

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.

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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?

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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…….

 

 

Is Summer Over Yet?

In the past few weeks here’s what you’ve missed because I’ve been lazy about blogging:

Wilma had an autistic meltdown on the floor of Chuck E. Cheese, screaming her head off and throwing her shoes at people….. she got kicked out.  “you need to get her out of here— she’s disturbing other patrons”.  thanks.   And no, her brother was NOT reacting calmly—- I response blocked 18 bites– go me.  Hoping hubby doesn’t need the hospital for his leg she kicked—- if he needs a blood blister drained, we don’t have health insurance.

the kids’ new health insurance needed a pre-authorization for Fred’s $800 a month med from which he can’t be dumped—- if we were to take him off, he’d seriously need to be weaned.  Last week they gave us enough pills for free to make it through Tues.  Monday I met face to face with the doc who said she took care of the pre-authorization.  Pharmacy still couldn’t put it through and gave us ONE more pill.  Called the doc again and it got straightened out but I was thinking…..  If Fred has to stop taking the medication that is essentially keeping him out of in-patient… cold turkey…. I’ll be inviting the doctor, a rep from the health insurance, and a rep from the pharmacy to come babysit him while he goes cold turkey off the med while I go vacation in Aruba.  If he does go in-patient, that might bump us up on the waiting list for funding for real behavior therapy- hmmm.  Can I scream yet?

got the car fixed to the tune of $765.80.  knock sensor, oxygen sensor, throttle position sensor…..  For a 1999 car, I guess it’s not too shabby.  still only 46,000 miles on it.  $80 of it was from rodents chewing the wires—- yet again.  Rodents love going underneath our cars.  The good news is that the other car (brand spankin new) will need nothing for quite some time because there are only 800 miles on that car.  The other good news is that we paid $300  and the other $465.80 in 2 weeks so I have a couple of weeks leeway not to have to bust out all that dough at once.

my one bit of alone time between august 2nd and august 29th— a trip by myself with no kids—- to the lawyer downtown.  He convinced me not to sue anyone.  hooray.  the kids’ insurance company switched to one that has a weird clause in it that a few cases have won in terms of parents being able to get ABA for their kids in severe situations.  So I was meeting with a lawyer who convinced me that waiver would be an easier route to travel because winning those cases is not a clearly defined route and has lots of complications.   There are a few different waivers.  One has a 10 year waiting list…. but another newer waiver, “SELF”, MIGHT be quicker.  So he gave me the number of a person to call who might know how quick.  Meanwhile we’re already on the SELF list.  If SELF rejects us or takes ten years, then we might be able to sue the insurance company.  Woo friggin hoo.   He was surprised we weren’t suing the district but he agreed that we wouldn’t be able to get it through them anyway, and he said I’m one of the few parents he’s met with who is basically HAPPY with the public school district (aside from the lack of behavioral therapy!).  He said we can get the SELF waiver more quickly if there’s an emergency.

Anyhoo, center for autism demands we do ABA.  District says we don’t need it.  Center for Autism sends us to a lawyer.  Lawyer has us call the board of developmental disabilities.  Board of DD is probably going to want me to sue the district.  Excuse me, I’m covered in red tape.

We got a hamster.  Wilma adores him, Fred couldn’t care less.

My Wii broke and is unsalvageable so I might just have to join a gym— otherwise my only workout option is a realllly old and squeaky elliptical machine in the basement.

I spent 20 hours in the past 2 weeks fixing my ipad.

ok, you’re all caught up.  School starts August 29th.  Till then, I’m in survival mode……  camp is long over.

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.

 

 

Summertime

It’s summertime and the living is easy.  Isn’t that how the song goes?

Since I last wrote, we added weekly therapy for anxiety, upped Fred’s abilify to 5 mg a day (Wilma is on 2 mg a day)… Wilma is still gaining FAR too much weight and is now 12 pounds heavier than her twin brother, signed up for outreach assistance that will send a worker to school once a week for each kid to help with anxiety issues, did two MFE/ETRs/IEP updates and two transition meetings at two different schools.  It’s official— we’re going to ATTEMPT to mainstream both twins in public school in the fall at two separate schools.  For Wilma it should be fine— her main issues are tantrumming, toilet training, and focusing.  She has no problem being in a large group of other children and functioning within the group.  She’ll have an intervention specialist to help with her issues and I don’t anticipate problems with her placement.  I even truly believe that if we’re magically able to toilet train her in the next year, she might go to a Jewish day school with a one on one aide for first grade.  Fred, though, will also be in a mainstream classroom— the feeling I’m getting is that’s where he’s ending up because there is no other option — because he’s verbal and toilet trained now, he no longer belongs with the autism unit.  He will have massive issues being in a classroom of twenty children.  I warned them.  They’ll come up with a plan B if they need to, or Mama Bear will come in with backup.   🙂  In an autism unit of seven children and three teachers, he did fine because there was always an adult RIGHT next to him for support.  In a mainstream classroom of twenty children his anxiety will go through the roof.  I’ll keep you all posted.

I’m feeling sad and jealous this week.

My friends are posting pictures of bbqs, swim parties, fireworks, carnivals, and the like.  When we do try to do anything like that, we end up with a massive double meltdown, someone (usually more than one person) gets bitten, and it’s just easier to stay home and let the world go by.  These two are on their best behavior on a day where Fred isn’t challenged to interact with anyone, share, communicate, or be involved with the outside world.  He’s a PLEASURE at home.  Unless Wilma is around.  And she always is.   So home isn’t a piece of cake either.

This summer, my husband isn’t working.  I’m the sole income.  So I should be working.  Well.  Daycamp had four days and now a ten day break.  They give the ENTIRE WEEK off for the fourth of July.  So if I ask my husband to entertain the kids for more than twenty minutes I feel guilty.  They’re home, I’m supposed to be on them.  He’s got the “where on earth can I take them by myself” attitude (I don’t blame him!), so if I try to get anything done, Wilma is banging on my office door:  “mommmmmy.  mommmmmyyyyy.  mommmmmmmmmmmmmmmmy”.  So we end up separating them for as much of the day as possible.  Hubby takes one twin to the attic playroom while I’m with one in the living room.  Then we switch.  Rinse and repeat.  Wilma whines and whines that she wants to be where Fred is, and Fred is THRILLED to have his Wilma-free time where he can just BE.

The first four days of camp went well.  I’m in shock, but Wilma is willing to pee for them.  They sit her on the potty and she pees.  She stays dry in underpants at camp.  And then comes home and poops in her underpants multiple times in a row.  And instead of letting me clean her off lies down and screams hysterically.

Fred isn’t biting at camp.  Again— total shock.  However, we’re in no school no camp mode this week, so everyone is getting bitten.  The boy wants his structure back.  He bit me two days ago and my husband yesterday.  Surprisingly he didn’t bite Wilma today– she was due for one.  Oh he did bite her HAIR, I take that back—- he bit some hair right off her head.

This camp is amazing.  I wish it were a Jewish camp.  I wish it weren’t 35 minutes driving distance away (no transportation).  I wish it weren’t in a horrible neighborhood.  But it works on IEP goals, it strives to truly understand our kids’ needs, and it’s got a WONDERFUL teacher to student ratio.  This year it’s eleven kids with four teachers (this year, our twins are together— SO FAR SO GOOD!)

On one of the websites I frequent for Orthodox Jewish mothers, in the special needs forum, someone asked for advice about having more than one special needs child— balancing their needs and balancing life and kids and (yep, she asked about….) cleaning and cooking.  Wait, I’m supposed to clean and cook?   I liked my answer and thought y’all might like it too so here it is.  It gives good insight into our lives (and maybe why I haven’t blogged for a couple of months— sorry!). Enjoy

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………………between the two of them they have 2 neurologists, 2 psychiatrists, 2 therapists (but we just begged one therapist to take them both so now it’s ONE weekly appointment for both twins), an outreach worker from the therapy center, an early child intervention specialist from the board of developmental disabilities, a special needs dentist who can sedate them, physical therapy, occupational therapy, speech therapy, etc etc. Balancing all of that with TWO IEPS each year and meetings at the center for autism and TWO MFE/ETRs every 2-3 years (we did at 3 and at 5 pre kindergarten), means I can’t work a traditional job—- I have to spend lots of time each day emailing teachers, coordinating therapy, working on behaviors, etc etc. So I work part time from home and figured out a way to make a full time income doing part time work hours and putting my kids’ needs first. My husband works, but his pay is very minimal and he doesn’t work at all during the summer or during cholhamoed and when he doesn’t work he doesn’t get paid, etc. So we survive without health insurance. we work  enough that our kids get health insurance, but to pay an extra $1000 a month for the 2 of us just isn’t happening now. (we both have pre-existing conditions). So that’s financial. I’m the only income this summer.

As far as more children go, we’re done. If magically in the next couple of years we can somehow figure out how to get health insurance (I’m self employed and my hubby’s job has no benefits), AND both our kids behaviors are a LOT more under control (we’re dealing with daily biting, hitting, screaming, toilet issues (one twin at five and a half isn’t near toilet trained), then we’ll consider it. But I’m 38 already, so I’d be over 40, and yeah— we’re probably done.

We don’t throw parties, we rarely have Shabbos guests, and our house isn’t clean. it’s LIVEable— the laundry is always caught up if not put away—- there are dishes from which to eat even if there are dirty dishes in the sink, etc.

Our kids come first. 100%. I schedule EVERYTHING around them. I don’t do laundry when they’re home—- I don’t cook when they’re home— I ALMOST never pick up the phone when I’m home alone with them, but sometimes it’s unavoidable. I do everything after they’re in bed at night. Work, laundry, cleaning, bill paying, etc etc. This year, they were on separate preschool schedules—- he went in the morning and she went in the afternoon (2 diff types of special ed in public school this year). But this fall, they’ll both be in full day kindergarten, opening up my day to be able to do normal mom things (work, laundry, cleaning bill paying) while they’re in school so maybe I can BREATHE in the evenings after they go to bed. just trying to keep my head above water till then. Smile

We’ve got both kids on abilify— it’s not making enough of a difference that I can get through a day without being kicked/hit/bitten, but full on autism meltdowns (triple a normal temper tantrum) are SHORT— ten to twenty minutes now. Still intense, still frequent, but SHORT. Ten minutes after the screaming starts, I have a 5 year old in my lap hugging me and that makes it all better. So for us, meds HAVE helped a bit though we’re still tweaking dosages.

We DO go to simchas without our kids— there are sitters out there willing to deal with non toilet trained 5 year olds, hard autistic behaviors, etc— you just have to really look. We don’t want to miss out on every simcha just because of our kids. Having said that, we 99% of the time don’t take them to community events. We DO take them to quiet Shabbos meals in a friends’ home, but we don’t take them to kiddushes or vorts or chassunahs, etc. It makes our lives a lot less stressful. It’s clear who in our community GETS our kids and who just thinks we’re lousy parents who can’t control our screaming brats. So we choose our friends carefully.

I don’t think I’ve posted my blog link here on the forum before— my facebook friends know it and I’m VERY uncomfortable having just ANYONE out there in internet-ville knowing about my life and connecting this blog to ME but this is a closed forum, yes, and most of you don’t know my name in real life…… those of you who DO know who I am, I ask that you just never mention my name or my kids names in your blog comments….. I’m going to share my blog here because I think it might give fellow frum special needs moms some chizzuk, some knowledge that you’re not alone. I haven’t blogged in a little bit— but some of my past posts are pretty intense. https://sortedmegablocks.wordpress.com On the blog, my kids are “Fred” and “Wilma”. Smile

As for a supportive family, my parents didn’t come to my wedding— I haven’t seen them in almost 20 years. Long story. My in laws are great but far away and in very poor health— we only see them once or twice a year— we don’t travel, so they come to us. We talk on the phone daily but as for babysitting help– nahh.

Even if you’re a stay at home mom, I’d encourage you to hire a babysitter for a little while here or there— your county board of developmental disabilities might have a respite program. We get $2250 for the year from them. $1200 for daycamp and the rest for babysitting— it’s not enough to pay for all our babysitting needs (I have a sitter every sunday morning while my husband is at work so I can work too and on monday afternoons because there is never camp or school on mondays at any of my kids’ programs)—- MOSTLY I work at night but for daytime phone appointments this helps.)—- but it pays for some amount.

I also love a lot of the autism mom support groups on facebook. PM me and we can be facebook friends and I’ll hook you up.

Just re-prioritize— don’t bother cooking anything fancy, cleaning to fit your standards (just clean enough that y’all don’t get sick), or paying bills on time— just BE THERE for your kids and there will be light at the end of the tunnel.

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