Let’s play what is worse…. (or most emotionally exhausting)
- Parenting two children on the spectrum
- Being told that autism is a mere myth and that symptomatic behaviors are the result of incompetent parenting
- Hearing the theory that they are too smart to have autism
- 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.
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.
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!
Being Pelted By Wet Paper Towels. It’s what I’m feeling every time something happens to my husband, he vents to me about it, I vent about it on facebook, and some facebook “friend” reports it to someone in the community who then yells at my husband for what I’ve posted. I need to use this blog more and facebook less, clearly.
In the “this actually happened” category…… my husband went to pick up take out. Two boys who know him followed him into the bathroom where they proceeded to pummel him with wet paper towels.
I KNOW DARN WELL that both of my kids have a tendency to act immaturely so I am always certain that they are well supervised. If my kids did this, I’d be horrified and apologizing profusely to the victim. My husband was asked to cut them slack.
I’m sick of seeing children above a certain age acting like fools with zero consequences from their parents.
I bitched about it on facebook and someone recommending calling the cops. MOST incidents that happen aren’t cop worthy— the cops aren’t coming for an adult being pelted with wet paper towels by a couple of 13 year olds. But when you add up a bunch of those types of incidents over time….. yeah the cops still don’t care. And my husband gets angrier and angrier. And takes it out on me, screaming at me almost weekly that it’s time to move. For various reasons I REALLY can’t move right now— that’s a whole other blog post. We’ve used the D word (divorce) so many times, my head is spinning. We don’t want a divorce— but…. we’ll see.
So now he’s crazy angry at me for posting about anything on facebook (deleting it now, geez), and this blog will become a private bitch fest (hardly anyone knows about it— hello to those of you who do) and my facebook will be a lot less personal. I’ve had it.
I am BEYOND disillusioned, both by the behavior of “frum” kids in our community who treat adults with complete and utter disrespect, the behavior of “frum” “friends” in the community who have to talk about my facebook bitch fests directly to people so that they’ll confront my husband (no of COURSE I didn’t use any names), and the behavior of husbands who don’t get that wives need an outlet— my blood pressure with two special needs kids is high enough that my blood pressure meds really aren’t working well. And when I have a screaming husband on top of it….. man, being bitten by my 12 year old is easier than considering divorcing from a 20 year marriage.
My husband works in a place without a lot of white people— he loves his work and his colleagues.
There is a person in our community who tells my husband that he’s working with the “spics and spades”. This is a guy who also uses the terms “nigger” and “shvartze” and “goy”.
The irony is that the “spics and spades” this guy is minimizing are the same people who would NEVER talk about the Jews as “kikes” or similar. In fact they ask my husband respectful questions daily about observant Judaism— they care and are interested in learning.
Bigotry is a real problem in the Orthodox Jewish community and I’m more and more disillusioned by the day. People simply tell me not to judge Judaism by the Jews and believe me, I’m trying.
But as a friend of mine posted on facebook today….
I do not care about your politics, your religion, your race, your financial status, your gender or your love life.
I care about the way you treat others.
“with all the gadolim and tzaddikim that will be at this wedding, it’s not the place for you anyway.” — -this was actually said to my husband. By the bride. We’re invited to this chassunah but when my husband said we’re likely unable to come (locals almost never have their weddings HERE because…. LAKEWOOD!) the bride said…. THAT.
Her father approached our Rabbi to complain about the pants my husband wears because some of them have more than 2 pockets. More and more people in our community are upset when my husband wears a colored shirt. Or a sweater (not a button down shirt)…. and now? Pockets.
If you care more about what we wear than who we are, then nope, we’re not very interested in attending your wedding anyway.
I just can’t BELIEVE the things people say to my husband and how little respect he gets.
Today a student sat on his lap (a middle school boy!) because there weren’t enough chairs in the room. The student was told it was inappropriate so the student said “hey, the guy only has 2 kids— he’s gotta get it somewhere!”
Sometimes my husband wears colored shirts to school. Or a colorful tallis during davening. The rich parents are complaining. If regular parents complain in a private school, nothing happens. If the RICH parents complain, people get in trouble— for NOTHING. Tell me where in halacha it says men can’t wear colored shirts. Or a nice tallis with color.
And because he wears such things, he’s now being called Lipa. Lipa!
Lately the difference in middos between different schools has been eating at me and I just need to VENT.