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

Archive for the ‘Working’ 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!

 

Dayenu

In Judaism we have a special song we sing at Passover time— if God had given us just this it would have been have been enough.  If he had given us this but not that it would have been enough.  Sometimes when I vent I turn it around.

I’m a bit discouraged this week and just need to throw up my hands and say Dayenu.

If I had twins, Dayenu.

If I had special needs twins, Dayenu.

If I had to work because we can’t survive on hubby’s income alone, Dayenu.

If I had to work evenings because daytime is chewed up by paperwork and meetings, Dayenu.

If I had to do laundry, clean, cook, pay bills, Dayenu.

If I had to go to IEP meetings, ETR meetings, FBA meetings, Dayenu.

If I had to balance the schedules of the outreach worker from the autism center, the outreach worker from the behavior center, the outreach worker from the board of developmental disabilities, Dayenu.

If I had to balance the schedules of the neurologists, psychiatrist, behavior therapist, speech therapist, developmental pediatrician, Dayenu.  (we’re not currently doing OT or PT outside of school hours— they’re six years old and don’t get home till after 4:00 for pete’s sake—- there are only four days a week we can cram after school therapies!)

If I applied for SSI and got denied, Dayenu.  If I re-applied with a lawyer and am killing lots of trees in prep for a second denial and subsequent appeal and court date, Dayenu.

If I HATE the behavior center and am required by three different psychiatrists to take my kids there so I fill out an hour’s worth of paperwork for a new developmental pediatrician so that we can quit the behavior center therapist, outreach worker, and psychiatrist and the new developmental ped can handle our med management, Dayenu.

If I had a daughter who poops herself five or six times most days after school on purpose and NEVER uses a toilet at age six, Dayenu.

If said daughter has a GI doc who claims she’s constipated and is giving her miralax and metamucil protocol each day, Dayenu.

If I have to play the medication roulette game between clonidine, tenex, abilify, focalin, vyvanse for two different children with three different psychiatrists and a developmental pediatrician, Dayenu.

If I have to survive double autism meltdowns in public complete with biting, screaming, flopping and refusing to move, stares from strangers, and unsolicited parenting advice, Dayenu.

If I have to have the school district tell me that they don’t need ABA (and insurance won’t pay for it either), Dayenu.

If I have to have the school district tell me that they’re too high functioning to be sent by the district to an autism school and they can handle them at a regular public school, Dayenu.

If I’d rather send them to a Jewish day school but know that I can’t possibly give up the services we’re getting at public school and have to figure out how to get Judaism into them outside of school hours, Dayenu.

If I, in an effort to save money, want to bring a VERY high rent payment down to a reasonable mortgage payment and am thinking about purchasing our first home at age 39, Dayenu.

If to purchase said home, we need down payment assistance and to qualify to receive the downpayment assistance I have to take a course which requires me to cancel the twins’ after school appointments for an entire week and find an after school babysitter, Dayenu.

If I have to prepare for Purim, Dayenu.

If I have to prepare for Passover, Dayenu.

But put all of them together and you have one very tired work at home mommy.

Vent over.

Mommy can’t get sick

Last week I had my fourth episode of a chronic health problem I’ve had since 2001.  The episodes can last from one to four weeks and scare the bejeepers out of me because losing complete control of how my body feels is terrifying at ANY time… but the last two episodes have happened while I’ve been a mother.  Nightmares about being admitted to the hospital for medication management and further testing have been the bright spot of this past week.  Thankfully, I was scheduled to have a doctor appointment yesterday before Shabbos for another health issue (super high blood pressure—- I’ve already BEEN on blood pressure meds for years now) so I simply came in showing all the classic symptoms (of the chronic health problem that I’m not sure I wish to share here) and begged for help.  With a few tweaks of my medications (I’m now on four meds), I felt normal last night for the first time in WEEKS.  I am SUPER lucky that the med change worked and that I’m now on the upswing.  The silver lining is that I lost some weight (from a lot of vomiting and no appetite), and that my pharmacist, when I explained what I had been going through, gave me a major discount on meds (no, of course we don’t have health insurance) and a big hug.

Stress doesn’t help my health at all, and to be perfectly honest, these kids are the light of my life— and a cause of a SUPER amount of stress.  I spend more time filling out paperwork/calling/meeting with people from the board of developmental disabilities, our local autism center, our local behavioral center, IEP meetings….. than I do with my income producing WORK.  I gave SERIOUS thought this week to giving up on one or the other.  If I give up on all the stuff I’m doing for the kids— I cancel the outreach from the board of dd…. I cancel the outreach, psych, and therapy from the behavior center…. I cancel the outreach from the autism center…….. and I just simply let public school do with them what they do and not run to therapies every day after school…… I’ll have more time to work.  OR…. if I stop working completely and just focus on being a stay at home mom….. well that’s out of the question because my husband makes about a third of what we need to make just to be middle class— he loves his job, but is horrifically underpaid.  There are no easy answers but I’ll just keep muddling along doing what I can and always knowing it’s not good enough.

Meanwhile we had a med change for Wilma this week.  AGAIN.  She is now on Vyvanse instead of Focalin.  And the abilify has been upped again.  By golly, we might be starting to see changes!  Then again she had a half hour meltdown today after cheating at Chutes and Ladders (who CHEATS at Chutes and Ladders?  I calmly said she needed to move to where she was supposed to or I’d put the game away—- so I started to put the game away and well….. my husband didn’t get his Shabbos nap).  But this was the ONLY meltdown in the past 3 days.  SERIOUSLY!  PRAYING that med changes for Wilma and myself are helping us turn a corner.

Such a bad mommy blogger…..

It’s been far too long.  But I’ve been launching a new business website, and now I have three businesses which are all vying for my attention.  My main business, plus my two side businesses, one of which I did some extra training and moved up a level last week.   I’d LOVE to be the special needs mommy who does laundry, cooks, bakes, pays bills, and organizes while the kids are in school, but even with full day kindergarten my days are still frantic and hectic because I need to do all that stuff PLUS tackle all the business stuff.  PLUS email teachers.  EVERY.  Single.  Day.  Other autism mommies, are you getting the DAILY emails?  Doesn’t it get old?  It’s always something…..

Wilma is not allowed to come on field trips without a parent accompanying her.  “We cannot support her behaviors in an open environment”.   So there’s always a field trip (#2 is coming up next Wednesday and it’s only early October) and if I don’t come, she’ll give me hell because she won’t be allowed to go.  So erev Yom Kippur (for the non Jews, that’s the day before a Jewish holiday— big cooking day)— I was at the zoo all day.  Next Wednesday, it’s the fruit farm.  Is it legal for them to require a parent just because she’s special needs?  Probably not.  I don’t want to fight it.

Fred is biting every day.  On days he doesn’t bite, he hits and/or kicks.  I get the notes home always with the smiley faces noting that the other kids are accepting of it and encouraging of him “use your words!  Calm down!”.  I’ve nicely requested an FBA twice.  They want to wait until they see CONSISTENT biting (read:  a week without a Jewish holiday where the kid is THERE every day).  Fine.  I’m not fighting it yet…. but after the chagim (Jewish holidays), I might just call a conference.  They plan to beef up the ISA’s presence with Fred (kind of like assigning him a one on one aide which is what the FBA would probably lead to anyway)— but will Mr X’s presence pinpoint the source of the biting, or just be a response block?  I don’t want to fight it.

Fred is now on 15 mg of abilify per day.  Yes, FIFTEEN.

The gifted program at Fred’s school did extensive testing on him and want to grade accelerate him.  HELL to the no.  You’re going to put a kindergartener who is BARELY potty trained, can’t make friends, can’t share, can’t take turns, can’t be patient, can’t take no for an answer…. into first grade?  So they’re going to speak to Fred’s teacher and IS and figure out a plan to get him some gifted work to do while remaining WITH his peers and learning what he needs to learn in kindergarten.  Sure, he can do fifth grade math now, but if you ask him to wait in line he screams and bites.  They told me they’d never had a kid in the school be so academically advanced while so emotionally/behaviorally deficient.  Thanks, gang, good to know.

Between the center for autism follow up appointments, the center for autism outreach appointments, the old psychiatrists and the new psychiatrist, the neurologists, the weekly therapy appointments, the weekly outreach appointments, the speech therapy, and now I’m being told my kids can’t possibly exist without a weight loss program (for Wilma) and occupational therapy outside of school hours…… I’m beginning to think I need a full time secretary just to schedule my kids’ lives. On the other hand— I think I’ll hire one secretary for that, one to run my businesses, and one assistant to take care of my housework while I go take a nap.

 

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

——–

………………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.

It’s Lonely Up On My Soapbox

I have a VERY unpopular stance on a very sticky issue and I need to vent.  It’s my blog and I’ll vent if I want to.

We have two children.  Putting aside the fact that we can’t handle more than them at this point because of their special needs, my husband lost his job in 2008 and has been “under-employed” since then with no benefits (no health insurance).  We “make too much” for medicaid or other government help (food stamps, WIC), but don’t make enough to pay for our own health insurance.

So, we’re done having children.  Unless by some change of fate, he gets a job with health insurance, our kids magically get potty trained and their behaviors take a massive turn for the better, and we can come up with $5000 or so for a fetal embryo transfer (we conceived the twins with IVF and will get pregnant next time if there is a next time with FET— we’ve got frosties in embryo “daycare”)—– the shop is closed.

I cannot count on two hands the number of people who have told me that if I quit working, we’ll qualify for medicaid, food stamps, WIC, and other free goodies.  Why can’t I just sit back and let the benefits roll in?  We’ve paid taxes in the past.  We’re having a rough time now, and that’s what government help is for.

I cannot count on two hands the number of friends I have who are ON medicaid, food stamps, and WIC (some on section 8 too) who are continuing to have children.  We’ve closed up shop, and they keep on reproducing.

I have one friend who is on section 8, medicaid, food stamps, and WIC.  Not only does she plan to have more children soon, but she has a cleaning lady, and a cell phone with internet access, and a vacation every summer.  I have none of those things.

I’m jealous on one hand, and incensed on the other.  Jealous because I know that if I felt differently and didn’t care about what I truly believe morality requires of me, that could be us—- doing a LOT better financially than we are now—- no medical bills in collections, $600 or more per month of free food, my life a WHOLE lot less stressful without having to hustle for $$$.  Kids are in preschool for the next two hours?  Great, how much money can I make.  (instead of doing what other moms of special needs kids get to do— take care of cooking and cleaning and bill paying during those rare free times).  Incensed because why on earth is it our right to take the government’s money with no plan for getting OFF the programs?  I have a friend who says “NOBODY in my town can have a family of 5-6 kids without this help, so why shouldn’t we take it?”  Um, how about having ONLY the children you can afford WITHOUT this help?

I’m okay with people taking for a few months while they get back on their feet between jobs.  Or taking because they’ve lost a spouse.  But taking as a way of life?  Why can’t the government just give out free birth control to families on programs?  If you get pregnant, you’re off the programs.  Birth control didn’t work?  Give the baby up for adoption.  I told you my views are unpopular.

The typical Orthodox Jewish view is to keep having children and God will provide.  Most families who believe this who fall on hard times financially collect government benefits.  I wonder what the non Jews think about this.  It’s one of the thinks I think about daily.

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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