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

Wilma Isn’t Pregnant

Wilma had a doctor appointment and as a requirement for one of her medications they needed to do a pregnancy test. So my autistic 12 year old was YELLING “I will NOT pee in a cup! I AM NOT PREGNANT!” at the pediatrician’s office. She got permission not to pee in a cup (I played the autism card and the there is just NO WAY card) and she calmed down. But then she wrote all over the butcher paper on the exam table…… “I am not pregnant. I will not pee in a cup. Peeing in a cup is gross.” Life is always interesting with these two.

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The surgeon called yesterday and bumped my stent removal from tomorrow to yesterday! One was way down low so all the pain right there makes sense. Post procedure pain last night but for the first time in 5 weeks I can walk normally…. no stent pain!!  Today I did everything I’ve been WANTING to do….. tidy up, put away laundry, tidy up…..  ok, it wasn’t a fun day but my goodness I feel so much better physically and mentally!

The surgery to insert these puppies was at the end of September.  The surgery to take out the kidney stones and put these puppies back in was at the end of October. This health nightmare is now over.  Ok, aside from a 24 hour urine collection, ultrasound, xray, and follow up with the surgeon all in a month.  🙂

The stones were calcium oxalate so no more spinach or almonds for me.  Gotta be more careful with my diet.

I’m beginning to think that the only thing organized in some (not all!) Orthodox Jewish communities is the bullying, both of children and of adults.

It’s a small group of teens and adults who continue to bully my husband, but boy are they loud. And constant.  And causing us to argue about moving.  ALL.  THE.  TIME.  Our son is supposed to celebrate becoming a Bar Mitzvah in two months.  We’ve done nothing.  We absolutely cannot agree.  Should he be called to the Torah at all?  What will happen?  Should we have a kiddush?  Who might show up?  Sadly, we may just buy him some special treats and congratulate him and let the community simcha part just……  blah.

Tonight, some bochurim called a treif restaurant FROM the synagogue, ordered treif pizza to be sent to our address (lovely, they’ve got our address) and gave the name as “the retard manager who attended Yeshivas I once ate pork”.  (they call my husband retard manager because he used to be a para in a couple of the Jewish schools working one on one with students with special needs.  The organization that hired him and the schools could never agree on what his job actually entailed, and the students looked at him as a babysitter.  The schools didn’t care about the middos of their students, so years later these kids and their younger siblings are still calling my husband these horrible names.)  The Yeshiva—– well, we’re Baalei Teshuvah.  We catch flack for that too.  Apparently Yeshivas I Once Ate Pork is quite popular because I have a lot of BT friends, but I digress.

Where are these boys’ fathers?  Not at mincha or maariv with them supervising them, that’s for damn sure.  Where are the Rabbaim?  Well if the boys are from important families, families of Rabbanim or Rebbeim, or rich families……  my husband is always told to just “be mevater”.

 

Between Two Surgeries

I’ve had twelve surgeries in my 45 years thus far.  Only eleven, had you asked me last Thursday.  I’m now in a holding pattern between surgeries 12 and 13 because of COURSE I have time for all of this with all that’s going on with my children, right?

A couple of weeks ago I had weird tummy pains and diahhrea and I RARELY get diahhrea.  The last time I had tummy pains and diahhrea and it wasn’t a 24 hour bug…. I was in the ER with a UTI.  So because I had minor urethra pain  as well with these pains I called my doc and asked for a UTI antibiotic.  Without seeing me, he prescribed it.  A few days later, I was fine.  A couple days after that, I got a lot worse, so, self diagnosing again, I decided I was getting side effects from the antibiotics so I did what every busy mom does at some point— I took myself off the antibiotics.  For a few days I was fine.

Last Tuesday I had HORRIFIC pains in my right side.  They went away after 15 minutes and I was fine the rest of Tuesday and Wednesday.  I chalked it up to gas.  The pain wasn’t near the kidney, really.

In 1995 I had kidney stones and with great pain meds and a pee strainer was able to pass them on my own.  On Thursday afternoon when I had horrible kidney pain and started peeing blood I realized that the past couple of weeks had been leading up to this realization—- oh crap, the stones are back.  I called a friend to drive me to the ER and drive back home to wait for my kids to come home from school until my husband could be here.  I figured I’d get great pain meds and a pee strainer and go home Thursday night.  Wrong.

I have one small stone on the right causing all the pain and one LARGE stone on the left causing urine to back up to where it shouldn’t go.  The doctor at the ER on Thursday afternoon was far too peppy when he told me there was no way I’d pass the big one on my own, and off I went via ambulance to a different hospital for stent surgery.

I had last eaten at 11:00 Thursday morning while taking my kids to a double psych appointment (ironically at the hospital where I now was on Thursday night!). Surgery got delayed and delayed and delayed and finally on Friday afternoon at 2:00 (when I was feeling super weak and dizzy from not having eaten) I had the stents placed.  I was in the hospital until Saturday night.  Bikkur Cholim cooked our Shabbos and Rosh HaShanah meals and I’ve been home resting through Rosh HaShanah.

Now I still get minor kidney pain every couple of days but not as bad as Thursday, and I have constant stent pain.  I’m peeing blood 100% of the time now.  I am VERY much looking forward to the next surgery where they will go in and zap the stones!  Meanwhile, life goes on and I can’t lie in bed until whenever the next surgery gets scheduled so I’m  in a pattern  of…. do a little laundry, lie down with the heating pad….. cook a little, lie down with ibuprofen…… do Wilma’s colon  treatment, lie down to watch tv…….  I can’t say I mind the forced rest!

Financial Crisis

I’m upset and embarrassed by this so I’m not announcing it on facebook under my real name.  I asked a few friends with whom I’m close to post it and have gotten some of the help we need.  Here in anonymous blog land, I feel comfortable posting this just this once.  If you can help, great.  If you know who we are, please don’t tell anyone about this, just share the link without saying who we are.

We’re in a paperwork snafu which has left us with money being owed to us with no idea when it will be paid.  September rent is now paid and now it’s time to worry about September bills and October rent.  I just wish that there was a way to work a regular full time job AND have two children that require multiple doctor appointments, hours of therapy each week, constant medication changes and pharmacy runs, behaviors that run the entire day,  and daily medical treatments that leave myself and my daughter captive to an IV pole every evening.  Believe me, if I COULD work a regular full time job, I would.  In addition to my kids’ stuff, I also have my own health issues and truly don’t think I COULD work a full time job even if I had the opportunity at this point.  I’ll get into those issues in a blog post at some point.  Relying on SSI makes me so ill.

Anyway, with great distress, here’s a linky.

https://www.gofundme.com/f/hwcr5-needing-a-boost?utm_source=facebook

 

To catch you up in case you missed the last post:  I threw my daughter a Bas Mitzvah party a couple of weeks ago. It was called for 5:00 pm to 7:00 pm. From 5:00 to 6:00, things were GREAT. My husband and I gave little speeches, my kids were eating and enjoying, and everyone was schmoozing and the weather was perfect.

 

Part Two……  (insert ominous music here)…… Right around 6:15 pm, my daughter AND my son (one always sets off the other) decided to let their autism flags fly. The tears, the screaming, the running off— it all started in full force fairly quickly. Though there were a few stares of complete disbelief (who can blame them), most of the people there quietly mobilized. By 6:40, all tables were stripped, food was put away, everything was in one place to put in cars, and people were leaving. I hadn’t lifted a finger except to response block my children and try to sing to one and have my husband take the other away (tried to have him take both home but failed there– he was NOT in a good place at that point)….. I felt badly because a few people showed up at 6:30 and one person showed up at 7:00—- so they didn’t get to eat or schmooze— they just got to witness the total chaos. When the kids were in bed that night and a friend came over for leftover cake, I checked my phone—– 8 texts from people who were there asking if I was ok and if the kids were ok. Amazing. If you didn’t know the hours of therapy and doc appts and medication changes (today we saw a new psychiatrist— YAY!) we’ve been through— you would simply see a girl being a total BRAT at her own party—- setting off her twin brother— and creating total insanity. But without fanfare, people from all aspects of my kids’ life came together to clean up the party and drive stuff back to my house. Autism won that night but it was also such a kiddush HaShem— people cleaning up, throwing out trash, putting everything in cars, and quite honestly, after a double autism meltdown it’s the adults who get the adrenaline hangover—- all my kids will remember is the friends who came, how much fun the first hour was, and memories from the fun they had (I hope!). Now since she’s a twin and I did her party 6 months late, I have a BAR Mitzvah in January—- catastrophe can’t possibly hit our simchos twice, so it should be lovely! Davening. 🙂

Of my twins, Wilma is typically the “higher functioning” of the two, autism wise.  She’s the one who didn’t get kicked out of public school.  She’s the one who can have a conversation with you with relative ease even if she doesn’t look at you.  She’s the one who can generally run an errand or walk through the neighborhood without a horror show ALWAYS happening.  Her meltdowns are severe, but relatively rare these days.  Except….. at her own Bas Mitzvah party.

I planned a 5:00 pm to 7:00 pm dinner event in  a park, half a year after she turned 12, so that we could be outdoors with fresh air, with a playground to which my kids could escape (and all of their friends with special needs), and so that it could be informal (read:  budget of $500 and not a penny more).  I rented the covered picnic pavillion, paid for $200 worth of pizza, an $80 cake, bought $100 worth of sodas and papergoods, sent out the facebook invites and the actual written invites to the few facebook holdouts, and prayed.  I prayed a lot.  I had her write a speech.  It was short and sweet, much like Wilma herself.  *I* wrote a speech—- just a few “Wilma-isms” I’ve collected over the years.  I allowed her (and Fred) to wear whatever they wanted.

The first hour of the party was perfect.  Gorgeous weather, fun with friends, I gave my speech and my husband gave his.  Wilma didn’t want to give hers.  She pushed me and yelled.  I kept a smile on my face and offered to give it for her.  She refused.  A few minutes later she went to the bathroom.  I QUICKLY gave her speech while she was in the bathroom and told the 50 people present “shh don’t tell!”  She had no idea, so even that went off without a hitch.  Non Jewish public school friends were schmoozing with Jewish community friends—- beautiful (and so rare in our community!)

In my next post I’ll describe the second hour of the party.  It was a teeny bit different than the first part.  It’s 1:20 am now— have you noticed I haven’t been making the time to blog?  Life is busy.  This party happened a week ago already.  Suffice it to say—– I needed that week to recover.  More to come!

 

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