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

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Chickpea Avacado Mash

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.

WHY SortedMegablocks?

I have three other blogs– everyone knows the blogs are mine, there’s nothing private about them, and the purpose of those blogs is strictly business.  Everytime I make a post on one of my blogs I think that I REALLY should be blogging about my personal life— the life that revolves around Orthodox Judaism and special needs twins.  There’s a lot that is really unique to our situation that I think can inspire and help other families.  At the same time, blogging will help me cope.  I’ve been more and more overwhelmed over the past year or so, and joining the ASD blogging community and being a part of a network of families struggling with similar issues will surely be helpful.  I’m on a couple of facebook autism groups and they’re very helpful.  But I haven’t shared my entire story.  So bit by bit, as time permits, I’ll share it here.

The name of the blog represents the first moment I knew that either of my children has an ASD.  My son, “Fred”, who is now 4 and a half, was sorting his megablocks by color at thirteen months.   Yellow ones here, Red ones there, Blue ones there.  When I would move one to try to show him how to stack them, he’d cry.  He had always been a lot more intense than his twin sister and had a lot of funny quirks.  A little over half a year later, he ended up with his provisional diagnosis.  We didn’t do his official diagnosis until this year because hey— if it walks like a duck and quacks like a duck, treat it like a duck.  He was already in special education, occupational therapy and speech therapy.  Since we weren’t yet ready for anything requiring special funding (our state has special funding for autism schools, OR for one on one aides to help mainstream at typical schools– but in order to access the funds you need to be outside of public school.  So far, my twins have been in public school)– he didn’t NEED a diagnosis.  For various reasons (for a future post!)– he needs one now.

“Wilma” was the reason the county’s program for special needs 0-3 year olds kept giving us home visits during the twins’ first year.  She was hypotonic and delayed in all of her milestones.  She didn’t even cry for a long while— she had an insistent little squeak.  If her twin brother hadn’t been insanely loud, we may have slept through some of those middle of the night feedings.  She was an incredibly easy baby.  And then the twins turned one, and all of our attention began to turn to her brother.  We thought we had a handle on her special needs:  hypotonia and a speech delay.  We still had no inkling that she could be on the spectrum.  Age two, age three, same thing.  We figured we had a son with autism and a daughter with hypotonia and a speech delay.  Until age three, we didn’t feel she showed any of the signs of autism.  Age three, she also landed in public school on an IEP due to her being behind in so many areas with the gross motor, the fine motor, the speech….. but she was still our social butterfly, having learned to clap and wave and talk to peers long before her twin— autism didn’t even cross my mind.  She was in special education, physical therapy, speech therapy, and occupational therapy, but I still had the optimistic hope that once she catches up with some of her essential skills, she’ll end up fairly neurotypical.

A year and a half later, and I can look back at her journey from age three to age four and a half and see her spectrum behaviors getting more and more intense.  It took me many months to recognize her behaviors as being spectrum related.  For many months I was saying “well, she’s got hypotonia, a speech delay, and SOMETHING else— probably adhd”.  So we got her diagnosed with adhd— through the process of THAT diagnosis, I discovered that she is also on the spectrum.  More on that journey in future posts.

I’m looking forward to the journey of sharing our story through my words.  Please keep our identity private.  My facebook friends will know that this is my blog, but the general blogging community or anyone finding this blog on the internet will know my children as “Fred” and “Wilma”.   Stay tuned for more!

 

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