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.
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.
After a zillion really terrible IEP meetings as my son was getting kicked out of public school a couple of years ago, I’ve been content with his new school— not THRILLED mind you, but content. A lot less aggression as he has very few students in his class and there are maybe 40 students in the whole school with an amazing student:staff ratio. Everyone is trained in TCI, everyone knows what to do in case of meltdown, and there are plans for dealing with aggression stemming from autism. But I’ve had two problems with this school— the lack of gifted services, and the gym curriculum or lack thereof. As far as the latter goes, there is NO adapted phys ed and therefore there are no gross motor skills on the IEPs for this school’s students. It doesn’t matter that he’s always had gross motor goals and adapted phys ed at his previous school. Furthermore, gym class is simply run by the intervention specialists— they do kickball, dodgeball, defend the castle and that’s about it—- VERY different from the diverse phys ed curriculum of public school. I asked about how we can get one of the public school adapted phys ed teachers down to his school if not to see him once a week and get gross motor goals on the IEP, then at least evaluate him and tell me how to focus his gross motor for the next while because I’m no phys ed teacher and there is very little this boy needs more than gross motor work. Last year I got a lukewarm apology— sorry, that’s not done, no gross motor goals on IEP, oh well. This year…… success! Fred’s first gross motor eval at this school is coming up and it looks like he’ll be able to have one of the adapted phys ed teachers (ironically… his twin sister’s!) come down to his school to work with him! All I had to do was ask nicely two years in a row. More info about the gifted stuff to come— basically they HAD been individualizing his math and science work but they had reason to stop doing that. In my next post I’ll tell you what’s up there.