Musings from an Orthodox Jewish mom of twins with Autism Spectrum Disorders, ADHD, and one twin has encopresis, megacolon, and a cecostomy. I'm tired. :)

Archive for the ‘Orthodox Judaism’ Category

My Father Died

With a weird mixture of sadness and relief, I am writing this about my father’s passing.

Dad, I haven’t seen you since 1996, the summer after I finished college. I haven’t spoken to you since probably 1998 or 1999 or so, shortly after my wedding. I don’t miss who you became, but I miss who you could have been to me. I miss the feeling I had when you were proud of me— when you had control of me— when I was a child living under your roof— and you approved of me because I hadn’t yet made the choices I later made. You even loved my husband when I first met him in 1993. Until we made choices to live our lives differently than yours.

I even liked the Rabbi with whom I grew up. You know, the one who SAW you abuse me IN SYNAGOGUE but kept quiet about it and only admitted it to me when I was later a grown woman.

I am grateful that you will no longer use my social security number to find out private medical and financial information about me. I am thankful that you will no longer squirrel money away under my social security number so that you keep the money but I pay the taxes.

I will no longer be hit by you— screamed at by you— called stupid by you. I made the choice to invite you and mom to our wedding but I am grateful you chose not to come and bring your screaming tirades. Breaking free from the abuse was a difficult but correct decision. Our wedding was beautiful. Most brides have either financial or emotional support (or both) from their parents, but I was grateful to have a wonderful mother in law to walk me down the aisle.

I chose peace instead of drama and fear. I chose PEACE.

Where usually children mourn the loss of a parent, abused children mourn the loss of the parent they wish they had and now for sure never will. 

I never told you I was pregnant. You found out. I never told you I had twins. You found out. I never told you they each had multiple diagnoses and that I was living life as a mother of children on the spectrum. You found out. There is nobody left on this earth who enjoys stalking me on the internet. Mom is still alive but as far as I know, not an internet user.

My bereavement is complicated by unreconciled (and unreconcilable) issues. Baruch Dayan HaEmes in EVERY sense.

Following psak of a very well respected Rabbi, I did not sit Shiva traditionally (no visitors) but did tear kriah, didn’t wear leather shoes, sat on the floor…… it’s weird, but what in my life isn’t weird?

And the cycle of abuse doesn’t end here. Now I get punched, strangled, and bitten by my autistic child. You would say it serves me right. Rest in peace.

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Bitachon

I just read a great post on a forum for Jewish mothers:

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Bitachon doesn’t mean that you get what you want. It means believing that Hashem is running the world. The way Hashem generally acts is through the rules of nature.

If someone is sick, we don’t say “have bitachon, Hashem can cure anything.” We go to the doctor, take medicine, etc. Somehow, there’s this attitude that money will fall from the sky.

(my note— -the post was in response to a thread about not having enough money for WANTS and whether summer camp for teens is a NEED or a luxury— ps, my kids have never gone to overnight summer camp and I DO consider it a luxury).

Back to the post….

An old story: two chassidim come to see the Rebbe. One is struggling with finances, and the other with infertility. The Rebbe blesses the first one to have financial success and the second to have a child. A year later they come back. The man with money troubles is still broke, while the other one has had a child.

The first man complains that he saw no results. The Rebbe asks, “After you left me last year, what did you do to advance financially? Did you learn a trade or open a business?”

“I trusted in Hashem.”

The Rebbe turns to the new father. “And when you went home, did you perhaps do something to have a child?”

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I think a lot about Bitachon versus Hishtadlus. For those who don’t know the Hebrew: Bitachon is “trust” but more like a powerful sense of confidence and optimism, most particularly with God (called HaShem in the post above). See further: https://www.chabad.org/library/article_cdo/aid/1405289/jewish/Bitachon.htm

Hishtadlus is loosely translated as maximum effort. Am I doing enough hishtadlus in my daily life to merit that my needs (and some of my wants) be met?

Rabbi Matisyahu Salamon said We need to put less faith in our efforts and more efforts in our faith.

Am I doing enough hishtadlus to make sure that we’re making the amount of money God has determined we will receive this year? Am I doing enough hishtadlus to make sure that my kids are getting the services they need? Do I have enough bitachon that the choices we are making for and with them (pulling him out next year to homeschool, having them start summer work this summer, having all of these weekly appointments with a therapist and with a team from the Board of DD focused on decreasing his aggression) are the right ones? These are things I think about daily.

A great article about bitachon and hishtadlus: https://www.atime.org/chizuk/hishtadlus-vs-bitachon/

One of the Five Percenters

I’ve decided that five percent of the people in our fishbowl community are terrible people. 95 percent are WONDERFUL. So every time my hubby yells at me that we need to pack up our whole house and move (to WHERE, pray tell? We can’t afford a shoe box anywhere else!) I spend a lot of time trying to calm him down and convince him that most of the people here are really and truly wonderful and it’s just five percent ruining our experience. And quite frankly, we moved here in 2005 and from 2005 until at least 2009 or so things were GREAT. Since 2009 or so, things have gone downhill VERY quickly with particular people. One such person used to be our friend. We thought so, anyway. LOTS of incidents over the past few years have convinced us that he’s not just NOT our friend, but our actual enemy now.

Yesterday all four of us went to Walmart. Daring, I know. But we’ve HAD some successful Walmart trips lately and in fact, yesterday’s trip was GREAT for Wilma. For once, she did NOT instigate ANYTHING with Fred. But….. Fred had a moment. A loud, aggressive, the whole store turns to see how we’re going to handle THIS show kind of moment. Yes we got hurt. Yes it sucks. Yes, Walmart workers tried to TALK him down. Protip for those who work at stores…. if you see a 200 pound teenager punching and strangling his parent or caregiver, don’t try to TALK to the kid to tell him not to beat his mom. Get eye contact with the parent or caregiver and ask THEM if they need help. If they have the kid out in public, they’ve got training under their belt to do it as safely as possible—- or they don’t, but would like you not to make it worse, k? Dude at Walmart is lucky HE didn’t get slammed. I’m fine now, thanks— except for the adrenaline hangover– those are always fun. Walmart is back off the list for a while.

Anyhoo, our ahem…. FRENEMY……. saw the whole thing. Apparently. We did NOT see him there— we were trying to response block and get the situation under control before getting to the car. He told a neighbor of his to tell hubby that he will beat him up until we agree to leave this city. This is HIS city and we have created a great blemish on the community. If he were truly a friend, he or his wife would call us and ask how they can help. Hubby now has to go to minyan every day and daf every night walking on eggshells waiting for this butthead to beat him up. He’s already punched him before, but not (yet) beaten him to a pulp. We’ll see. This guy makes our community shine brightly, doesn’t he?

911

I posted the following on facebook tonight (using Wilma’s actual name): An ambulance and three police officers later, all is ok at our house but Wilma is in the ER, hubby is with her, I’d rather not say more than that and if you’d like to pray for all of us that would be appreciated. Hug gifs below please. Or jokes.

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I got love and support jokes and gifs and that was great. I did NOT say that I called 911 on my own child, right? But then hubby went to his nightly daf yomi class and got harassed.

who the hell told the guy who harasses my husband that we called 911 on our kid? Neither of us wrote that on our facebook — we mentioned police and ambulance but we didn’t say it was because of our kids. we simply said Wilma went to the ER— we didn’t say why. and the neighbor who saw the police and ambulance wasn’t told that we were the ones who called. So whoever is reading our posts, ASSUMING we called 911 on our kid, and reporting it to the asshole who harasses my husband—– you are about as much of an observant Jew as the asshole who harasses my husband—– observing only the Jewish laws you think benefit you and certainly not the ones relating to man versus man (or woman of course). If you are talking “facts” about our situation tonight to other community members, go ahead and unfriend us.

By the way, it’s not just one guy who harasses my husband. But for tonight, HE is the one who has threatened to come over and beat up my husband because we make our community look bad.

Don’t judge Judaism by the Jews.

Swing, Batter Batter Batter

The teens asked about bases (sexual)—- so a discussion happened about what first base means, second base, third base….. and a quick reminder that as Orthodox Jews, NONE of that will take place until AFTER they are married. Wilma says “I’m never getting married”. I said “ok then you won’t be rounding the bases…..”

So she says “maybe I’ll join the women’s softball team then……”

And FRED says “I’m gonna strike OUT”.

The comedic timing on these teens is unreal. I don’t know why I’m so worried about their futures— they could make millions in comedy writing.

Anti-Torah Mindset

A teenage boy, whose father harasses my husband constantly, came up to my husband today and apropos to nothing, said the following:

“My Rebbe said that if you have retarded children, it’s because of aveiros you did in your past.”

His father was right there— smiling. His father even said “hey, he listens to his Rebbe!”

We have such wonderful people in our community, but the handful of total assholes spouting their anti-Torah mindset— calling our children retards, telling us about our past aveiros….. they are who are forcing my husband to demand we move. Keeping us living here is becoming a JOB.

What Is Worse

Let’s play what is worse…. (or most emotionally exhausting)

  1.  Parenting two children on the spectrum
  2. Being told that autism is a mere myth and that symptomatic behaviors are the result of incompetent parenting
  3. Hearing the theory that they are too smart to have autism
  4. Being told that we should not talk about the issue and just suffer silently.

Today we had issues with #1 and #4.  #1 was ANOTHER horrific meltdown from good old Fred.

Hubby was approached at Walmart today by an important member of our Orthodox community (important in our community means rich or a Rabbi or a head of school…..  someone whose name is synonymous with the community— side note— hubby has now decided we will move to a community where no names are revered more than others.  Anyone know a Jewish community with no adored rich or important people?  mm hmm)—–  she said she’s been meaning to talk to him about something…….  she said we need to stop being public about our childrens’ autism and stop seeking support.  We need to be quiet about it (suffer silently) because it’s a blemish on our community.

I feel really terrible that our current crisis (yes, one twin is most definitely in crisis now—  many of my autism related facebook posts in past years were positive/ funny/ informative) makes her feel a bit uncomfortable.  See the tiny violin I’m playing?  Nope, can’t lean it against my body— I have a bruise there— yeah another one there—- hmmm that finger is permanently injured so I can’t hold the bow right— eh, screw the violin.  Yet again hubby is yelling at me about moving.

By the way, while we’re keeping Fred home and away from synagogue for months on end, some of the men are complaining that he’s a Bar Mitzvah and they never see him in  shul.  So some people think we shouldn’t seek support when we have issues and some think we should ignore the issues and just act like nothing is wrong (same guys would complain when  the guys are comparing bite marks during a mega meltdown).  Again, hubby is talking about not only moving, but moving away from the Jewish community completely.   Hashem— if you want us to remain Orthodox Jews, give us a sign– please.

Bar Mitzvah Stuff

We ended up doing… NOTHING.  No Kiddush, no party, no invites.  It was the best thing for our son and it was the best thing for our current situation.  Our son didn’t have a massive meltdown upon realizing he was the center of attention and there was a crowd, and none of the riff raff who make it their job to harass my husband knew when and where our son would be called to the Torah and there was no free food for them to come crash our Simcha.  So our Simcha was QUIET.  Just the people who daven at our shul anyway.  Fred was called to the Torah for his Aliyah, the men  sang to him for about 2 minutes, and we moved on with our lives.  I’m incredibly depressed that we couldn’t throw a shindig and yet so incredibly grateful.  I mean the truth is that we could have thrown an invite only party NOT at a shul that wasn’t announced in newsletters just like Wilma’s, but you can see why I was gun shy to do that based on what happened at HER party.  If a double meltdown ran down HER party, kol v’chomer it would most certainly run down HIS.  He certainly didn’t care about a party.

We did GO  to a Bar Mitzvah recently.  The baalas Simcha promised us that a certain person wouldn’t be there.  Not only was he there, he was given an honor.  The baalas Simcha promised us that her son’s classmates wouldn’t be there (they live in the “other neighborhood”).  My husband literally spent Shabbos morning counting bochurim and noticing how many came from the other neighborhood— he got to be called a retard manager, and when he yelled at a few boys for on purpose knocking right into our son, he was yelled at by the certain person mentioned above (who, by the way, finally invited us to leave our city— I was wondering when he’d “kick us out” of here).  Wilma stayed home.  She NEVER goes to shul on Shabbos morning anymore and she NEVER even gets out of her pajamas on Shabbos.  She takes at LEAST two naps each Shabbos.  (we tested her thyroid and vitamin levels—-  I’m guessing it’s just the 8 thousand meds she’s now on).  Fred did come with us.  Hubby went on time, and I took Fred around 9:45— Fred is able to walk quietly into the men’s section, find my husband, and do great during davening.  And then  there was a Kiddush.  Oh how I hate Kiddushim.  Let the record show we tried.  Kiddushim bring out the very worst in people.  So about ten minutes into the Kiddush my son is crying, having a massive nosebleed and yelling curse words in the bathroom.  A Rebbe (who KNOWS Fred has autism) admonished my husband for not disciplining Fred.  If discipline worked with Fred’s cursing or aggression or meltdowns or ANYTHING, don’t you think we would have tried it?  So yeah, we won’t bring Fred back to a Kiddush for a long long time.  None of us ate at the Kiddush or enjoyed it but I think we get brownie points from the Baalei Simcha for being there.

Here’s hoping we don’t get invited to another Bar Mitzvah in our city anytime soon and if we are, we’re smart enough to leave our kid(s) at home and my husband is smart enough to wear blinders and earplugs so he doesn’t have to hear or see anything.  And yes, of course, we had the moving discussion again.  And again.  And again.

Organized Bullying

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”.

 

Part Two: Bas Mitzvah Story

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. 🙂

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