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

Archive for September, 2011

Why Can’t You Do It While the Kids Are Home?

It’s the week of Rosh HaShanah when all the normal moms are posting their menus and recipes and chatting all over facebook about what they’ve already cooked.

I can’t make a list or a menu with the kids home.  I can’t cook with the kids home.  I USUALLY can’t answer the phone with the kids home although today I was able to have a long overdue chat with a friend, amazingly.  I kept telling her— my gosh my kids are BOTH sitting together calmly— wow!

A lot of people don’t realize how amazingly UN-calm my house can get.  Think screaming and biting and kicking and stomping and hair pulling and child locks on bedrooms to keep munchkins in time out for four minutes.  If she simply says “no” to a request of mine, he goes WAYYYYY overboard and starts turning into the tazmanian devil.  There are 3 facets to his tantrums—- intensity, frequency, and duration.  He’s worked HARD on duration and can calm himself down in 4 minutes flat.  But his frequency and intensity of tantrums have a LONG way to go and he scares the bejeepers out of her which makes her cry which makes him scream which…….  whooooooooooo.

The kids go to school at two different times four days a week.  That means I meet the bus out front (actually my husband does the 8:07 am one) at 8:07, 12:16, 2:42, and 4:05.   Fred goes at 8:07 and comes home at 2:42.  Wilma goes at 12:16 and comes home at 4:05.  So four days a week I get from 12:16 to 2:42 to myself— I consider it 12:30 to 2:30 by the time you factor in the fact that I usually can’t eat when the kids are home either so from 12:16 to 12:30 is usually my brunchtime.  2:30 to 2:42 I usually sit outside and enjoy the fresh air— best twelve minutes of the day.

12:30 to 2:30 is when I can balance the checkbooks, pay the bills, do the laundry, do any cooking or cleaning or shopping, tidy up, sell product, check emails, put together bookshelves (I’ve got 3 more to do in the next 2 weeks– we just moved into this house 3 months ago and we need more shelf space here)…….   after the kids go to bed I TRY to reserve that time to make the kids snacks and lunches, check emails, and workout, but generally I’ve been selling product and emailing customers then to because of a lack of time.

I CAN shop a little in the mornings after Fred goes to school and I just have Wilma— IF she’s in the mood.  But she’s in a whiny funk most mornings because her brother gets to go to preschool in the mornings and she doesn’t.  Mornings are TOUGH.  I CAN cook with just her home but ONLY if I allow her an electronic babysitter– tv, ipad, or computer games.  She used to LOVE to sit and read books but since the adhd diagnosis, she won’t sit still for more than three minutes without electronic stimulation.  SO— during the hours I DON’T want her watching tv or playing ipad, I need constantly to entertain—- playdoh for 10 minutes, ok let’s color for 10 minutes—- ok let’s read this book together for 10 minutes— if I don’t play cruise director she whines for the ipad and it’s NOT pretty.  Not that I don’t give it to her, but I can’t let her play ipad for as long as I need to cook—- 10 or 20 minutes or so.   So while she’s home, I’m not productive.

In the evenings after we put them to bed, one of two things happens (sometimes both).  Fred poops.  Or Wilma cries.  If Fred is still making noise a half hour after I’ve put him to bed I know I have a diaper situation.  Wilma cries lately because of the clonidine, I think— it’s screwing with her sleepiness a lot and she gets overtired at night (and naps sometimes during the day which isn’t great at almost five years old).  So if hubby is out in the evening and I have a to-do list fourteen miles long to accomplish between 8:30 pm and midnight and at 9:00 Fred needs a diaper change and Wilma starts crying….. well, you can see where my evenings go and frankly, some nights I just give up and veg out for 20 minutes in front of Cityville (an addictive facebook game).

Having said all that, we put the kids to bed tonight early.  it’s only 8:00 pm and they are now both asleep….. hubby is staying out of my way because he yelled at me earlier about the kids’ behavior and I got snippy.  I told him we can rehash the whole thing now or I can concentrate on emailing customers— which should I do… hmm.  So I just emailed two customers, and now after this little vent, I’m off to email a bunch more and then maybe later tonight I’ll make a grocery list and start THINKING about the upcoming holidays……   at 10:00 tonight my plan is a well deserved work out.

Good News About Wilma’s Ears

woooo hooooooo— after years of tymp tests, ear exams, and audiology exams being part of Wilma’s litany of “adventures”, she has officially been discharged from the ENT– no more fluticasone, tymp tests, ear or audiology appointments unless there’s a problem again in the future— for now we have escaped tubes!!! Now she JUST has hypotonia, adhd, pdd-nos…. 🙂 (she’ll still keep me busy, no worries….)  You blog readers don’t have the whole backstory on this since I started blogging after all the craziness with her ears was almost over, but suffice it to say—- I didn’t need one more thing wrong with her.  So this is happy news.

The Funny Things They Say

From time to time, I’ll post some of the hysterical things my twins have said and give it the category “The Funny Things They Say”.  Here’s some recent and not so recent ones to get us started.  Enjoy!
“I’m Abba. I’m going to shul. See you later!”  –Wilma  (Abba is Hebrew for father—- Shul is what we call synagogue).  This is after she put on his tie….
We were discussing where to go today and Wilma said “I want to go somewhere where there is no rain outside!”
I asked Wilma to put away a blob of playdoh. Instead of saying no or screaming about it and having a tantrum, she simply lay down and softly sang “you can’t always get what you waaaaannnnt” in perfect tune.
Me: “Wilma, do you want to make a pee or poo on the potty?” Wilma: “no, I already made a poo poo in my pull up.” Me: “oh, when were you going to tell me that??” Wilma: “August”. ?!?!
Wilma: “mommy, I made both a pee pee AND a poo poo”. Me: “ok, well maybe NEXT time you can tell me BEFORE you make and I can have you sit on the potty like a big girl!” Wilma: “no mommy, it doesn’t work that way”.
Fred is sitting on the potty and my mother in law is sitting there offering him money for making pee pee. Do you want a penny, a nickel, or a dime? Fred thinks for a second and says “a QUARTER!”. Darn kid knows the value of money. At this rate the tooth fairy will cost a new trans am. (no pee pee is forthcoming).

Working Hard? Hardly Working?

I’m supposed to be working full time.

A decade ago when I decided to have children I picked up a part time hobby which became a part time business.  As we were moving through the intense infertility battle, I was having my own health issues and needing to take breaks from the battle.  I decided to stop working full time, put my part time business into higher gear, and be a work at home mom…. Before the kids came.  I knew ultimately I’d want to be making a full time income from home so that I could spend as much time with my children as possible.  Everything was going quite nicely when I finally got pregnant and had the twins.  Even after the twins were born, I was remaining in the top 2% of my company, holding weekly meetings in my home, marketing to new customers and building a sales team.  Direct sales was my baileywick, and I was also a pretty good mom.

Their special needs hit slowly, and one at a time.  By the end of the twins’ first year, we felt there were some delays but “they’d catch up” and maybe they’d need special ed but “just for a little while”, and there’s my favorite line of all – “well, they WERE preemies”.  I was doing all I could to work as many hours as I could, and things were plugging along.


False Sunflower Heliopsis helianthoides 'Summe...

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Fast forward to now.  My twins are almost five years old, and I have exactly eight hours a week that they’re both in school at the same time because they need different programs.  I meet the special ed bus outside four times a day.  I’m potty training.  I take Wilma to private physical therapy outside of preschool hours and leave Fred home with a babysitter.  I had twenty appointments in the last few months JUST for Wilma’s last two diagnoses:  adhd and pdd-nos.  (The EEG, the MRI, the bloodwork, the neurologist x2, the adhd appointments, the five separate pdd-nos appointments…. Etc).  Their behaviors literally take my breath away some days.  When they were babies I was not dealing with time outs and behavior charts and calming techniques and horrific outbursts in the middle of walmart (that was my morning today….).  I diapered them, played with them, and while they napped, I worked.  Now I’m SORT of able to work after they go to bed except that I also need time to do laundry, cook, clean, pay bills, balance the checkbook, shop, and organize…. And I can no longer do ANY of that while they’re awake.  Plus, bedtime is never truly bedtime since Fred chooses to make #2 only after I put him to bed and lately Wilma cries when I put her down (something to do with the clonidine, we think) so she needs multiple hugs and kisses after bedtime.

So it’s come down to this big decision.  I need a full time income.  I also need my sanity.  I don’t know any other mothers of multiple special needs children who are working full time or even part time with great consistency.  I decided to leave my position at the top 2% of my company and continue to sell product without the pressure of being in charge of a sales team.  I wasn’t able to put in the effort needed to go to my meetings (let alone run them), put out newsletters, do conference calls, etc.  I’m able to be an unpaid full time special needs interventionist who happens to be in direct sales on the side.  I used to be a sales director with a direct sales company who happened to be a mom of special needs twins.  This was a really tough decision for me.

Fellow special needs moms, do you need to make a full time income, or does your spouse provide well?  If you need to make a full time income, how do you balance your working with the therapies, doctor’s appointments, and paperwork?  I find I spend at LEAST 15 hours a week on paperwork and therapies and appointment setting (and online support groups!).

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She Inspires Me

Check out Wilma— she’s on my friend’s blog!!!!  My friend Rivki has a great blog about Judaism and parenting and she’s doing a “Women Who Inspire Us” series.  Let my daughter give you a little inspiration……..

Don’t Send My Kid Away

The 3rd or 4th person in the last 2 years told us (my hubby anyway) about a “great residential program” for 4 year olds with autism. Is it just me, or is it INCREDIBLY insensitive to assume we’re thinking of putting him in residential? Apparently the word on the street is that we’re in over our heads and can’t handle our kids. /vent over

Even *IF* we were feeling we needed to send him— which we DON’T—- those programs are expensive!  If you’re going to call us and tell us about these programs are you also prepared to hand us the cash?

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