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

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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Comments on: "Working Hard? Hardly Working?" (4)

  1. and before you ask…… even though I’ll take a paycut we’ll still “make too much” to qualify for free health insurance. no health insurance for us, so please pray I don’t break a leg. 🙂

  2. I am a foster mom of special needs kiddos, with just one teen at this point. He can suck all the life out of me by days end. So, I do know of what you speak! 🙂

    I have always worked part time, aiming for full time, here at home. My business takes a hit every time I get a new child, as it takes time to come up with a new routine that works with the kids routine. (hard to call it a routine, as this one is still changing more than settling down)

    I too, have reams of paperwork, emails, and phone calls a week. The state wants these all to be documented & the time accounted for. HA! Yet another piece of paper!

    If I didn’t have some remnants of a ‘job’ I’d lose the rest of my mind. I have to have something that isn’t kid related, or disability related. I wish you well as you continue to navigate the system and come up with a solution that works for you. It is frequently an exercise in choosing which is the best off a list of pretty poor options! (at least in my experience,………….there aren’t often any great options on my list)

    Sue

  3. Sue, nice to meet you— thanks so much for your support!! The time suck is amazing between the board of dev disabilities visits, the IEP stuff, the daycamp paperwork, school paperwork, appointments, therapies…… *yawn*.

  4. Your medical appointment diary sounds exactly like mine! I sat down the other day and counted up 18 appointments, all over a span of 4 weeks: Those were for appointments for all 4 of my kids; one of whom has special needs and the other has some behavioural issues. And the baby; well that was just the usual vaccionations and baby checkups – but now we have discovered he has excema and asthma – that is nothing compared to what my special needs kid faces though! I gave up my “on the side job” as a “sales rep” for organisational products – as you know, us Moms who have “special needs kids really do have a “fulltime career” just with all the paperwork and appointments!

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