7 degrees F

We are lucky up here. There are 21 people living under one roof all week, but we have the quietest attached rooms in a back corner of this unwieldy, very rustic house. Far away from the tv and other families, all on other floors. I know my MIL felt bad when we were moved out of our usual and much more central, spacious spot, so that others with more kids could be in there, but this is actually much better. We are cozy and compact, and enjoy more quiet and privacy. Plus there is a big window next to the bed looking out into the woods which I love.

It can otherwise get hairy up here. Some let their kids watch tv, others don't. Some hover, others don't. Others exercise, everyday, others not so much. There are those who clean or cook, and those who don't as much. There's a whole variety of gluten free, vegetarian, kosher, and dairy limited diets. A spectrum of drinkers. A dizzying array of parenting styles. Three dogs - a huge puppy, middle aged Bailey, and blind/senile Baboo. Each needing attention and separation at times. There are just so many ways to rub each other in the wrong way among these type As (myself included). But all things considered, things are going remarkably smoothly. The kids are amazing together. The other night, siblings and their spouses played Cards against Humanity until too late, and I never saw all of us laughing so hard together. It's good.

Still, we are lucky to be tucked away in the back. It helps. And I'm quite happy also with my big stack of books.

"Sex"

Mom, uh... I'm just worried about... sex. Like its kind of bad.

I put my phone down.

What are you worried about?

Mom, mom... It's okay. He started petting the dog, obviously embarrassed.

Belac, everyone explores their bodies. Is that what you're worried about?

Yes, not looking up, but maybe it's like... a lot.

It's okay. Just always in private, okay? And no sex with someone else until you're an adult, ok? Everyone explores their bodies, and it's okay.

Okay, okay, I'm fine, he said into the dog, not looking up.

Yes, you are, I said hugging and kissing him, now go play with your cousins.

Bubble

It came up with someone that the therapist Belac is seeing doesn't take insurance. That's unnecessary, said he from the west coast, there are plenty of therapists who take insurance. Plus you know there are only two kinds of therapy that work, right?

Yes, yes. I know. Here we go. Again.

I took a deep breath and told myself to stay calm and undefensive. I know, who wants to shell out this kind of money, right? I pointed out casually, but the guy came highly recommended by our school and a friend in another district, and it has become increasingly important that this doctor has a strong relationship with the head of special ed services at Belac's school, the setting in which Belac is most stressed. We had already had a dozen sessions with someone else that was cheaper but ineffective.... So at this point, given Belac's extreme distress, we were looking for fit, first and foremost, and someone who could see him immediately. It's meant to be 4-6 months of CBT and not forever.

I am sure he from the west coast simply wanted to be helpful or just show what he knows. But I am reminded that there are so many better ways to engage on an emotional topic. After all, even if you think you know everything there is to know despite not working in autism or having any first hand experience with autism, he is a trained social worker and we are human beings first, right? Talking about my son and not the price of cheese?  Empower the parent, right? Assume they've done all the research, right? How about, was there anyone else you could find that takes insurance? I could try to help you with that. What kind of therapy is he in? I've heard....

We are doing the best we can in unchartered territory. There will always be a ton of advice and my ears are always open - admittedly more so with parents of challenging kids than with experts - and I need to remember that even on vacation and among family, my bubble stays on.

On the slopes

So proud of how both boys skied, today, and particularly Belac. Especially given that we have skied just a handful of times in their lives, basically once a year, whenever we are in Canada. For the first time ever, the 4 of us took a chairlift together to the top of the mountain after practicing on the bunny slope. Of course in helping Belac off at the top, he fell and I fell, but all was fine.

Everyday there is a bonfire and some hard physical activity outdoors. A steam sauna with hubby. Reading another book, cover to cover.  Some cooking. So many people under one roof, but surprisingly it's all been good so far.

The kids love it. We have so many relatives!! How unfortunate we don't live closer. Honestly and for so many reasons, it's really too bad that we don't have each other more day to day.

Bailey boy

Whenever Bailey leaves this world, we will be devastated. He began his life with us, 3 years into Belac's, just after the diagnosis. He has been with us almost everywhere and sleeps with the boys every night. We took a 3 hour hike, today. 5 miles up and down a small mountain. I held up the rear behind Belac. Bailey raced back and forth between the lead and us. Always racing back, down hill and uphill, just to check that we were good. Sometimes just a look from me after waiting for it was enough for him to turn around and race right back to the lead. Such a smart dog! He must have run a dozen miles total!  He is the best dog ever, Belac and I agreed over and over as we watched him sprint around like he was half his age.

And now he is fast asleep on my bed. For all of our sakes, may he live a long, long, healthy life. I never imagined how our family could so deeply love a furry creature. But he is also an exceptionally sweet and well-tempered dog. Bailey! We love you so much.

saying their peace

Spoke with my dad an hour last night. He told me about a letter he and my mom sent registered mail to my uncles and surviving older relatives on her side of the family. Was it in English? I asked. If it were, I would have sent it to you, he told me, but I just want you to know what I wrote....

I listened to the whole story. The whole sad and unfathomable story. My dad has such a deep understanding of my mom's young life and the dynamics of what exists now. And what pulled the scab off of her interminably infected wounds, underneath, was seeing that my grandfather's legacy, a reknowned 8 story eye clinic that people traveled from all over the country to visit over any problem of the eye, was bulldozed down. Was that necessary? And for what? The location of that land, in the center of Kaohsiung. What is going in its place is a 60-70 story building.

You know, Dad? Good you said your peace. But mom needs to not lay in bed over this. She wrote she's in deep depression. If she lets that happen, they win. The letter will change nothing, nothing will change, except you said what you needed to and now must move on. I know, I know, the purpose was to say what we needed to. The other thing? I continued, is that kind of money was a curse. A curse! It destroyed a family. And the problem began not with the brothers, but with the father who did not raise his family properly. Amazing as he was professionally, he was a terrible father. I heard my dad agreeing. What kind of patriarch doesn't leave anything to his wife and daughter, 'trusting' they will be provided for by the brothers?! If grandpa could see what happened after his death, how selfish and entitled, lazy and self absorbed his sons would prove to be and behaving like self proclaimed Princes. I am sure he would not have done it this way. No way. Who was the true son, here? Which of the three turned out to be his worthy child? It was you and mom who took care of Grandma for decades! And he was with us, too....

The other thing? I couldn't stop and my dad was listening. You should know that your daughters are not waiting to see what we get from you. We are all quite capable kids, capable of getting ourselves out of trouble and difficult situations, figuring out ways to provide for our families... Lucky us, we are each quite resourceful and doing more than fine. As far as we are concerned, we think you and mom should enjoy your days and spend every cent. My dad chuckled, well, we want to leave something for the grandchildren! I understand that and great if it happens, but none of us are holding our breaths for a handout. And if one comes, there won't be a fight. Mom has drilled this in us and we understand it.... Yes, he chuckled, this won't happen to our family. No, it won't! We came out so much farther ahead than any of her brothers and their families! Thank God we didn't have that money, Dad. I know it's not about the money and all about mom's dignity, but thank god we don't have that money!

I texted my mom in a group cc with sisters before bed: You said your peace and it probably won't change anything. Don't be depressed or you're letting them win. Get up, go out, enjoy your life and be proud that you earned all that you have and did the right things. And know that your kids love and respect you.

backdrop

The backdrop of these crazy couple of weeks, is that our Rabbi has resigned and there has been fury and sadness, high emotions and so many discussions. It's just terrible. And this special needs service that has families coming from all over Westchester? He will only participate in one more. He's wonderful and I am so grateful, I told the Board, but we need to keep it on the calendar. I will continue to arrange, organize, prepare the lesson plan, market and run it myself as necessary until we are on firmer ground. This is a beautiful little community that has emerged within the bigger one, and we cannot let it go.

There was a congregational meeting called about this dire future of our synagogue. There was concern that there would be apathy. And because it's just the way I am, I took the initiative and made an evite, manually entering over 200 email addresses and now responding to every RSVP (or not) as it comes in. Every 10 minutes my phone dings. I look at the email address against a roster for the first names. Then go to the computer, because the damn evite doesn't work adequately on the phone, and I respond personally to each acceptance, maybe or no, in a positive, enthusiastic way that is seen on the wall. We really need people to come and vote on our future. We really need everyone to unite. Otherwise you know what? There will be no synagogue. And as unreligious and unobservant and skeptical as I am as a disbeliever, this community means something to me. I have friends there who are thinkers and doers and they are so accepting and kind to my boys, Belac especially. I really need this place - located just one block away - to survive.

Tomorrow we drive off after Jake's last exam at 11am. How will I respond to these evites? I have no idea, I will be driving through the Adirondacks and into Canada, where there is no good reception and I'll be with just my incompatible phone. A board member called and said it wasn't necessary and just make it all hidden. But it's totally necessary! The wall has begun to be peppered with comments and niceties from others. I can't make this opportunity unavailable during a time when everyone really needs to unite and communicate with one another.

Hubby and I are emotionally exhausted. He also didn't get the promotion....

Today we went to Mint, in Tarrytown. He wasn't so sure, initially. We have so much to do to get out of here, tomorrow. But it was a place that Flower's mom had brought me, and then a place I had brought Olivia, and we had a little time for a slow lunch. And it was delicious! And moseying about and taking our minds off of too much stuff, briefly, he followed as I wandered into a sweet little jewelry store of all handmade, colorful shiny treats. I am not a jewelry kind of person, but loved everything in there. The owner has an amazing eye and fabulous taste. I walked out with beautiful garnets hanging off of each of my lobes that hubby gave me....

How will this story end? I have no idea.

Tonight I had each kid write Happy Holiday cards to each of their teachers, inserting a $10 Starbucks card into each. I helped Belac write his 9th card, what he called the "best for the last" for Mrs. Ana. Midway, he turned to me. Actually, mom,  I should write you a card, you know, for volunteering for my Home Skills class and talking to me all of the time....

Life is good. I cannot complain.

whaddya know?

Well. Whadday know...? Apparently my mom's older brother sold his portion of his parents' estate for $65 million USD.  My little sister was able to find out that publicly available information. That is outrageous! It means that my mom's younger brother's piece is not as big, but these are humongous numbers to begin with. I mean, I cannot even grasp these numbers and my first reaction is to laugh.

It's dirty money. Totally dirty. This wealth and the distribution of it to the brothers only destroyed my mother's family. No one speaks to older brother and my mother's relationship with her younger brother is strained to say the least. How could her parents have left her with nothing? Nothing? My grandparents each lived with us when they were dying of cancer. They died at home with my mother at their sides. The brothers were nowhere to be found. My parents took them on trips and my grandmother lived as a widow with my parents for over a decade. It just makes no sense, whatsoever, I don't care how crazy my mom was at times but this is not right at all.

My parents did the right thing. My mother did the right thing. I don't want any piece of what's left. In our case, it's my grandmother's jewelry, which includes a sapphire diamond studded bunch of grapes looking necklace I wore at my wedding and both of my sisters' weddings. My mom asked me to wear it and brought it for me each time and I complied. Apparently my grandma wanted me to have it and it is mine and sits in a safe in my parents' house because I am too scared to be responsible for it. It looks like costume jewelry but it is real.

How do you want to remember people? I don't know. Ever since my grandma died, I have consciously not thought about her because I'm all tangled up inside by this legacy they left. i push her out of my mind. My grandparents made a terrible, terrible decision by not valuing their daughter, their own blood who was with them til their last breath. It's no wonder my mom has problems.

tougher and better

This is the nicest card I ever received from a student.

Interestingly, though, I have become more strict and have higher expectations of all. I am still nice and chatty with the kids, but learned from watching Jake's band teacher in how he motivates the middle schoolers. Being thoughtfully tougher has helped my students not only play better but makes them try harder. Every student now has a parent or babysitter that sits in on the lessons. It means more parental support at home and greater progress from week to week and lots of well-deserved applause. Lessons are so much more enjoyable for me, too.

I made it known, at the beginning of the year, that I will only continue to teach students who practice, regularly, and if there is anything they'd rather be doing besides music, they should do it. I also now schedule and pre-announce several performance class dates a year, requiring 2-3 finished pieces from each student per concert. The kids have greater incentive to polish their pieces throughout the year with these more short-term goals.

Today, a prospective piano student came to the concert and party, and I just received notice that they want a Sunday lesson time. It's great news. I can handle it and it will help with our exploding medical bills.... Belac editing the concert video, piecing it all together with titles, performer names, and some graphics - to be uploaded and sent to the parents. Jake playing with the very little ones and initiating the ball playing outside. The whole family helping with setting up and cleaning and mingling.

My music studio has turned out to be a family affair. And you know what? It's good for each of us and it's wonderful.

house concert

It started snowing. Then my dozen students and their families began to arrive. Almost forty of us crowded into my living room, kids on laps and on the floor and others, spilling out into the foyer. Everyone announcing themselves, playing a few pieces and Christmas songs including Ave Maria, with hubby on piano and me on violin, the audience hooting and clapping for each person who got up. I was so proud of these kids and love their families. I have definitely hit my stride with the teaching and classes, we are tight and have a good, strong, little community. There were cupcakes and coffee, kids kicking around a ball outside, parents mingling. What an awesome, happy morning!

And what's more?

Though the kids still have 2 days of school, it's now officially vacation for me!

sunshine

Mom, can we get a cylinder? A cylinder...? Like how big? Mom, mom! It's so hard to explain. Groan. I need something round, like sort of like this, he tried to show with his hands, I want to decorate my room. So how about a coffee can? Mom, no! It's too big... Oh my god!!! This is so hard to explain!

Why don't you just draw it? Jake suggested.

So Belac grabbed some paper and this is what he drew while explaining. What about a hanger? I said, pulling one out of the closet. Do you have string? he asked. And then he interrupted breakfast to get right to work.

Why did you choose that decoration, looking over his shoulder, sunshine and blue sky? I don't know, he replied as he continued working. Where is this going to go? In my bedroom, he responded, not looking up.

It's beautiful and you know what? This is self-help at it's best. He truly has the spirit of an artist, everything he draws and makes comes from a very deep need. It's an itch that needs to be scratched, even if he can't explain the whys of what he's doing yet.

We are supposed to be at synagogue this morning, along with his classmates at 10am. But if he wants to decorate his room and not stop, it's okay. If he wants to spend the morning hanging blue sky and sunshine all over his room, I'm good with that.

together

At 3:45, I received a phone call from Belac, hysterical and crying. I went to go pick him up from video club, and I found him weepy and alone in front of the building. We talked 30 minutes, just sitting in the car. I didn't fully understand what happened. He didn't fully understand what had happened. But something had happened in video club and he was sure he had no more friends. And then the teacher took Belac aside, who I guess was freaking out, saying that if this was going to continue that she might shut down video club, altogether. Oh, that's the solution, alright.

Mom, I want to run away, I want to vanish! he cried. And go where? I asked, to sleep where? And what will you eat? And what will we do without you? I just don't want to go to school, tomorrow, Please! mom, I just want to stay home with you, I will work around the house!! I laughed, ever so gently, at that brief ray of lightness.

Eventually I got him to go upstairs and take a hot bath. He just wanted a hug. I was emotionally exhausted. No phone call or email from the teacher of this after school club. I fed the boys and helped Jake find his concert clothes. Nothing fit! As soon as hubby arrived home, we traded places. We were supposed to all go, but it was clear Belac needed some serious down time.

And you know what? It was okay. I sat with a friend and saw that jake was sitting in the outer ring of 130 kids. Meaning, that everyone could see his grey pants (because the black ones were even shorter) and his blue sneakers (because his feet wouldn't even go into his black ones) and that his shirt was riding up his forearms. And all I could do was sit there and laugh with my friend and hoot and holler for these great kids who played so well, I was teary! And so proud of Jake.

And coming home, I saw that Belac had finished editing the Hanukkah concert, taking out unnecessary words, adding text and dedication, and had uploaded this beautiful thing for Rose for 8 days of Hanukkah. I also saw that he was weepy. Earlier, we had crafted a very mature and thoughtful text to Jasper: Dear Jasper, I'm sorry I hurt your feelings. I was teasing you like I saw Josh tease you the other day and was trying to be funny. I didn't mean to hurt your feelings and I hope we can be friends again.

His response was: "."

Belac had written: I'm sorry I didn't get your response.

Again he had texted: "."

Hubby was now in possession of the phone and Belac was weepy and wanted his phone back. Hubby was explaining that it was enough and that he now needed to give this kid space. And that Belac did the right thing, the very right thing, and hopefully this kid would come around. Eventually we were all in his bedroom. Jake on the top bunk, hubby laying with him on the bottom, me sitting with him. I mean, I'm proud of us, the 4 of us. We're trying to help each other and we're together, doing it.

medical bills, bills, bills

2014 medical bills

The 'good news' is that having reached our $3000 deductible for network family services, we are covered 80% for services and because doctors are contracted, they can't ask for the difference. The both 'bad' and 'good' news, is that we haven't quite reached our $6000 deductible for out-of-network family services in order to get the Medicaid equivalent reimbursement (what is that? $80 per $375 of CBT? of course, they couldn't tell me), so the huge weekly checks continue for now. And our prescription coverage. What a joke! Until we reached the $1000 deductible, I was paying $173.49/month for Belac's heart friendly stimulant, then $33.51/month.) And why, I asked the company, is a $250 dollar chest x ray hubby had at his annual not even partially reimbursed?? Until I get an answer, I'm not paying the bill that has arrived in my mailbox 3 times already. The policies seem to make enough sense until you live on the wrong side of them. In April it starts all over again. But good thing, you know? Because if I am calculating correctly and I get all of these papers in now, we should get reimbursed a little for 3 months worth of CBT.

This year, I will be reading all of the fine print of our options for the first time. I understand that hubby's company will be offering some Commercial/Obamacare hybrid that will make costs and reimbursements more transparent up front. I am also going to look into straight out Obamacare. I am a legitimate small business, now, could I qualify...? I don't know a thing about it. But do the math. We paid at least $10,000/this year out of pocket on mostly mental health services and we supposedly purchased the "best" health insurance plan at about $12,000 per year....

Oh, but you know when I freaked out? After 2 hours on this, an hour spent on the phone? My health care savings card had gone missing with my purse, months ago, and I needed to order another. I had to be forwarded to a person at Chase. All was fine and then they said my replacement card was going to cost me $15. What...? Are you kidding me? Sorry, ma'am, you can read your contract, replacement cards cost $15.  You're joking, right? You run commercials about getting replacement cards while a taxi is stopped at a red light? I can't even get my health insurance to cover my bills and now you're going to charge me $15 dollars on something every bank including yours does FREE out of courtesy??!! Who do you think you are? A HOSPITAL??!! The poor woman, it was going right over her head. I don't want your card!!! DON'T SEND ME ONE. I'm changing insurance companies in April, anyway!!

Of course I can afford $15 for the stupid card, if even for a few months. But it's the principle of the matter that drives me crazy. And by the way, in case you're worried, I'm not throwing away money. I can reimburse myself online, straight to my bank account. I just need to keep all of my receipts.

Our American healthcare system: It's freaking insane.

note to teacher

Filing a pile of new insurance claims and trying to straighten out some months-old mess with others filed from this summer, still waiting to be reimbursed. But then interrupted myself. Of course I should help Belac's teacher proactively help Belac! So stopped to write the following. Do I ever have some honking teacher gifts to figure out.


Hi Donna,

Happy Wednesday!

I heard from Belac during 1st period today in the form of a text. I told him to take a deep breath and think positively. Not let one thing ruin everything. Also that if he needed to talk to go and find you. I don't know what happened and maybe it doesn't need bringing up, after all, but I thought I'd let you know.

I also told him to check in with you before going to video club. I think it's good for him to go because he has friends in there and the subject is a strength of his.

Thanks for everything!

By the way, my hubby and I consulted with Wiseman last night after he met with Belac 3 times. It's interesting how he is approaching teaching problem solving and self-intervention/correction of thoughts in order to influence better coping skills and more positive behavior. As I learn more, I will share, but I'm hopeful this will help.... If there is anything that comes up and needs to be addressed at school or if you have any questions, you can just let me know and I will pass along.

Thank you!!

Gimky

school

Before all this happened, the kids and I had Facetimed my mom and dad over breakfast. I talked to my Aunt, my father's eldest sister, already 90. They were in a restaurant in Taipei, Taiwan. The boys waved and talked to my parents while my Aunt asked questions in Taiwanese - which one is older? How old is he? Oh they are eating breakfast....

It was all good. My mom looked great. We sang Happy Birthday to my dad. The kids and I talked about the technology. Guys!!! I exclaimed, we just Facetimed Taiwan in real time! We just talked to my Aunt! And we sang Papa Happy Birthday before he went to bed!!! It was that easy! And FREE!! It's AMAZING!!

They laughed at my excitement. We had a really good morning. Belac loved his clothes that fit him perfectly. He had chosen "Walk on the Snowy Side of Life" on top and perfectly fitting corduroys, I had no idea they made them that super skinny!  He wasn't swimming in any fabric, today, and looked hip. And he was happy, chatting it up with Jake about something, he truly was. Then that text came not even 25 minutes after he left the house.

Hubby mentioned, last night, that maybe... maybe Sunny Patch school really wasn't the right place for him. Too many kids, too much reactive discipline. I waved away that comment with my hand, stop! He'd have challenges in any place, we just need to help him cope. But you know what? I hate to say it. But there might be some truth in that.

late consult

We lit candles, had dinner, and everyone tried on their new clothes. The boys bathed early and packed up their stuff for the next day. Then at 8pm, hubby and l left Jake in charge for the next almost 2 hours, with Kati on call, locally. It's amazing that Jake is mature enough to watch over his brother, now, and the plan was that they'd both sleep in Belac's room and be in bed by 9.

We were off to meet Wiseman over Belac. We wanted to know what his thoughts and plan of action were, now having met Belac 3 times. That's for another post, but suffice it to say, Belac is now signed up weekly for the next 4-6 months. He will also likely join group therapy in January with a bunch of pre teens for anxiety/social skills. And once a month, Wiseman will meet with hubby and me, just as we did last night.  All of it costs money, even the 45 minute session with him last night, another $375.  He doesn't even take credit cards, you really have to have it. Hubby is much more skeptical and hesitant, but I'm pushing us along. I'm not 100% sure either, but if we are going to try this, we are going to try it right. It's promising that Belac went to Wiseman, yesterday, wanting to talk about something.

Belac just texted me now at 7:53AM: "I f-ing hate my life."

What happened in orchestra that began at 7:45? Did he get in trouble for something? Take too much time getting his violin from his homeroom at one end of the school to the other end of the school? The poor kid.

I love you, I texted back. Take a deep breath. And think about it differently. Don't let one thing ruin everything. If you need to talk to Mrs. Ana, please find her ok?

This is why he needs therapy. At this point I really don't care what this guy costs because we found someone who seems to understand Belac, who is making sure we come at his challenges from every angle. I know Belac doesn't really hate his life, but he has a very hard time maintaining realistic perspective and managing the unexpected bumps in his life, especially at school, where all he wants - almost chronically - is to fit in. Wiseman gets that and I feel relieved he's on our team.

family traditions

More buying things the kids need and wrapping them up as Hanukkah presents. A ridiculous holiday for gift giving, I must say, but I think it's important the kids feel a little excitement and pride over their holiday. We light candles, every night, usually do a few smaller gifts/trinkets on some of the days, with one bigger gift and a nice dinner on the first night, tonight. Making home made corn bread and chili, salad, cookies for dessert. Nothing crazy.

Today, though, I really did good! I had time to buy Jake and Belac some very necessary clothes. And this time instead of Kohls or Target, I headed to the much trendier GAP, where everything in the store was 50% off the lowest price. I shopped the clearance racks. Long sleeved graphic tees, very cool stuff (all $7-9 dollars), corduroys and pants in current and future sizes - I didn't realize they had slim sizes and adjustable waistbands for my very skinny kid ($16/pair), a sweater for each, and a couple of shirts and sweater for hubby. A TON of really nice stuff, all for less than 300 bucks. I was amazed! Hopefully we are good with the basics until Summer! Although I just don't know with Jake. He keeps outgrowing everything. The other night, he appeared downstairs wearing all of hubby's clothes before bed - pj bottoms, t shirt and hoodie. What is going on here?! hubby feigned dismay.

In a few weeks is high school orientation for Jake. Less than 5 years, knock on wood, and he will be off to college. I love this time with the kids and am nostalgic for these days already.

clarification

It is 1000% understandable that my mom has baggage from her childhood and a huge inferiority complex. But she needs to somehow actively get over it. For starters, she needs to not let it ruin the last few days of this trip of a life time. She knew definitively 15 years ago that she had no claim to her family's properties. It was all in in black and white upon my grandmother's death. Understandably her brothers never told her they were selling, but it should come as no surprise at all. They both live in the states and wanted the money in their retirement. And yes. I am willing to admit that each brother became a millionaire. Maybe they are each sitting nicely on a pile of $5 million US dollars. Maybe more, for all I know. But do I care? I really, really don't. Me, my sisters and my parents are all doing quite fine without a penny of it and I am so proud. My parents are self-made, having received no financial gifts from their parents, and I think there is something wonderful about that. (My dad's dad created quite a stir by giving all of his money away for political causes before his death and I sort of admire that, too.) My parents, and especially my dad, can hold their heads up high and have a certain confidence from working hard, making sacrifices and sound financial decisions. A sweet enjoyment of everything they have because they (my dad) worked his ass off for it! And generosity because of his life long practice of actively both spending AND making, but always making and saving more than spending. At the age of 76, my dad continues to work part-time as a pathologist in downtown Detroit. It's amazing.

So while I understand why my mom is carrying a mountain on her back, she really needs to put it down. For good. I don't know if she can, it is so part of her. But if she could just listen to what my sisters and I have been trying to tell her all of these years. Yes, it sucks, it really sucks. No one is denying that. But please. Not just for you, but for all of us! LET IT GO.

retina check

I really love Jake's retina specialist, who we see every 6 months. We are so chatty about kids and life, that yesterday, I almost called her by her first name. Her son is now a sophomore at University of Michigan. They were just in Ann Arbor. You should move back to Michigan before these kids graduate high school, she waved at my boys. Question is, I asked, for hubby and I to do what...? We talked about Detroit. She told me her son now has a cute girlfriend, whose family is in Chicago. She grimaced. Look, Chicago is great! I told her. It's cosmopolitan, sophisticated, has everything, and the people are generally a little nicer being clearly the midwest, there's not that edge or grit of NY, and that's kind of good, right? And the city! You can grab a bagel IN THE CITY and eat on a sandy beach of FRESH water that looks like an ocean. I mean, you've never experienced it until you've experienced it! There are flights all the time from O'Hare to HPN! It's really easy...! And maybe even better to be there than NY...? I shrugged. True, true, she murmured.

It's also how I came to read a beautiful little interview with Julia Roberts. I have to admit, I have always had a soft spot for this actress. She's from 'my' generation, I found myself telling 13 year old Jake. She's so beautiful and funny and real and has a huge heart from everything I've read and seen. The kind of person I'd want to have lunch with. And you know what her life goals are, I read? 1) perfecting the scorpion yoga pose, 2) seeing her kids married and happy and with a lot of kids and 3) I don't remember what.

Jake's vision has again worsened after just 6 months, but his retina got a pass. It's stable. She highly recommended contacts as a way for Jake to see better and defray the cost of glasses, now every 6 months. The boys both drew funny pictures during our 2 hour visit there. All good. The most enjoyable doctor visit ever.

another situation

My mother is up to her crazy ways again. She and my dad are wrapping up a trip in Taiwan for my father's 50th year reunion from Medical School. A joyous, emotional celebration to say the least. She's been sending pictures of her and my dad with at least a dozen others from the States I have known most of my life. All looked good.

And then came an emotional text. She found out that her brothers had sold her childhood home in Taiwan without telling her. She went to the sight and found it bulldozed. Yes. I would be upset, too. And another reminder that as a girl, she received nothing from her parents and had no rights to anything. And not because she and her parents were estranged, they each died of cancer at my parents' home after living with them for years and under my mother's care. You know, it's just another one of those f'ed up Asian customs that make no sense. But my mom went on to claim each brother received 500 million dollars for the sale. I did not respond. Better not to add fuel to the fire. I'm sure somewhere in the conversion she added a few too many zeros, let's just use common sense. She has whipped herself into some state and I could only feel very bad for my dad, surely trying to get her to calm down and not ruin the last few days.

Then there were a bunch more dramatic emotional emails to my cousins, saying that she was cutting off from her brother, their father. I'm so sorry, came each cousin's obedient reply. We all knew what to do.

Then came the emotional FB update. Oh god. And here I had to intervene. Mom, I wrote to her in an email cc-ing my sisters. I'm really sorry about what is going on. However, I'd really be careful about posting personal stuff on FB. Things there have a way of spiraling out of control in ways you just cannot predict. Better to keep it more formal and cheerful if you post at all.

And then came another text to my sister and HER mother in law (who is a friend of ELDER brother): MY HOME ARE GONE!! My elder brother sold this property total amount $600000000.00 US Sorry your mother get $000000000.00. Other brother amount will be around $500000000

Little sis to just Older sis and me: My MIL is on this thread. Seriously??!! Plus I asked her (nicely) if she really knew what it was sold for or if she was guessing. And if she was so upset to talk to UC about it. I didn't need the money and I was not going to even think about it.

Me: Mom is insane. A billion dollars??! What can you do but laugh.

Little sis: Exactly. She should just ask them how much if she's so curious and bitter. It's public record.  But not even a billion NT dollars.

I happened to be at CVS waiting for a prescription while receiving the last of this. I saw some silver beads and sparkly little Hanukkah christmas ornaments. I normally would not have bought them, but knew the kids would like waking up to them in the kitchen. You know what? I have my own family now. Not without its own problems but they are now my biggest concern and priority. I can't change or even help my mom, but I can role model what a good mom and wife are supposed to be to my own boys... It's Hanukkah. A box of sour patch candies and a pulsating tooth brush for each, tomorrow. Trident sugarless bubble gum, the next. A small electric shaver for Jake one night, and medicated lip balm and canker sore med for Belac - he is stressed out and has one on his inner cheek, actually I'll just give it to him tonight....

Mom to my sisters and me just now: Okay look like all of you think I make this stories, that's okay too. too bad even my own kids question their mother. My elder brother for pass 10-15 years he sold the property farm land & now the hospital land & donate the big size of lane to his wife's family church - no Wu's family church. For sure over $1B. And about UC, since pass 2-3 years he has been cut the tie between dad & I. For pass 3 years we have dinner together about 10-15 time of course we paid for it. & I went in for surgery, never call to ask if I am doing okay, & amount other things. Few more things they done to me if I telling you I know all of you will say I am lying too. That is okay too. From now on I won't tell you anything.

I can only sigh at all this. That my father was so successful was both a blessing and a curse. The blessing is that they don't need my grandparents' money and my mom did not have the stress of working outside of the house. However, she should have had a job or found other ways to feel meaningful. She should have gone to college, educated herself, and gotten a job, any job, even if it was not work worthy of a doctor's wife or daughter of - she once described - the Taiwanese Kennedy family. It would have provided more valuable ways to feel good and more secure. It would have given her much needed perspective. My mother's behavior frustrates me to no end, but I mostly feel sorry for her.

getting things done

Packing up to leave the house at 7:28a, I happened to peer into Belac's trapper keeper. Uh, there were 2 pages of a study guide he didn't do...? For a test...? In 2 days...?  Take your jacket off, I told Belac, you have some work to do before school.

Mom! I have 1st period!

It's boys group, it's not as important as this Science test. Come on, you can do this in 30 minutes. Belac, we keep forgetting you might have homework on the week ends! Let's get this done.

If I get this done fast, can I go to part of Boy's group? Can you drive me?

Yes, yes. Come on, let's get to work!

Funny. He supposedly hates boy's group. But it's all relative, right? Between a late morning at home and boy's group (social skills) he'd rather be home. Between studying for Science or boy's group, he'd rather be at group. The kid was in NYC 2 days in a row, this week end. We literally didn't see him, either day!  First at Rockefeller and the next day with friends at the Queens Hall of Science. On the other hand, maybe the intensity of his social calendar has helped him enjoy boy's group better. I don't know.

The lucky kid!!

Books

Is it weird? But in looking for good books for Belac, I have fallen in love with realistic fiction geared towards middle schoolers. There is just such good reading for this age and I eat it all up. Next on my list: El Deafo, The Fourteenth Goldfish and Brown Girl Dreaming.

Jake

We took a look at the parent portal. Despite Jake's very shaky start, this quarter, he has managed an 88 or 89 average in every subject, except an 85 in Social Studies and a shocking 100 in Science. It's excellent. He has been working consistently hard and diligently, spending at least 3-4 hours on hwk per night, probably longer than the others as he is slow, but I'm so proud. He is trying hard and has truly earned every percentage point.

Today, he stood next to me and smiled until I noticed. It's definitely happened. My baby is taller than me!

Overtime

Dinner of leftovers and freezer finds by the fire. Very sweet and easy. Hubby then received an email from his boss. Again. He needs something for 10am tmw. C'mon, really...? It immediately put hubby in a terrible mood. Instead of a movie we had all planned, this requires working most of the night over and getting his team involved. Skipping his workout and leaving shortly after he gets up at 5:30. Am I allowed to say no??  Why can't we do this for Wednesday? hubby asked rhetorically as he sighed and found the percolator.  He is up for promotion in March and well, even if he has had late hours and worked most week ends these past months, how could he stop now with the possible promotion coming closer and closer?  It's more money and you know what? Unless you are a gazillionaire, who can't use more money or security?

The things he does for this family. He really sweats it out for all of us. On that note, I better finish all the laundry tonight.

becoming more business like

Printing out final invoices of the year. Just signed on 2 new students, starting January, and to play a baby naming service on violin. I'm a little nervous about how my time is filling up, but feel good. The side benefit of volunteering everywhere, is that my face is familiar and it's helping me grow my studio. I hope that I can keep the good feeling even as I do more. Next week, I run a Christmas house concert that all of my students perform in. We had an informal dress today and admittedly, I became slightly emotional. The kids are sounding great and I have never had such committed parents.

Also thrilled about the recent development in my dining room. Doesn't it look like a million bucks? My dark pleather chairs were ripped in some of the seats and they really didn't look good. But have you seen the price of decent enough chairs? I was very skeptical about slipcovers but did the research. I was just shocked to find how well these fit. Everyone keeps complimenting me on my new chairs. The slipcovers are totally perfect and high quality looking/feeling AND... I bought them for just $13/a piece!

Now submitting 4 receipts from Wiseman to insurance. Partial reimbursement - which we have never yet been able to get out of network for the mental health piece -  and 4 new students (two I was able to start already) will alleviate the sting of those bills. Healthcare is so f'ed up in the US!! But lucky us despite it. And lucky me for the music.

Saturday

At 9:30am, Belac got a call from a girl from school. A perfectly nice, normal, sweet, pretty girl.  Did he want to go into the city with her and her step dad and one other boy from school? Why, yes he did. And off we drove him to catch the train with them, a 20 dollar bill and his cell phone in his pocket. I went off to synagogue by myself, people were expecting me and I had presents to bring for Rose. Jake to table tennis, and hubby to a bike ride.

Came home at 1 to an empty house and started cleaning. We invited 2 families to dinner. I think Hubby and Jake still shopping at Costco, an experience I avoid at all costs. 

Was just texted a few photos of Belac, girl and other friend, arms around each other, huge smiles in front of the Rockefeller tree. These are two kids that ended up at our house for Halloween, people we've only just recently become friendly with. How lucky is Belac? There were years I thought I'd have to shadow him myself for the rest of his life or have to forewarn everyone. I cannot begin to explain how much this picture means to me for all that it shows. I'm so grateful.

Real

Amazing day. Long day.

You know what? Life is short. Enjoy what you can, work at and protect the important stuff, try to let a few things roll. Above all, be present in the moment and love deeply.

8 days or more

"Dear Rose, Shabbat Shalom from all of us at Sunny Patch Synagogue with love!"

If anyone would like to participate in 8 days of Hanukkah for Rose and her family, please deliver to either SPS (back pew basket) or my covered porch.

Sweet and thoughtful is key, I think, and not necessarily fancy. A little something to show we are thinking about them or to brighten her/their day. And I will just do what I did, today, ring the door with car still running and be immediately off on my way. It was fun!

Thank you so much! I'm so proud to be part of this community!

Gimky

family time

Jake, hubby and I were laughing heartily over a Colbert Report segment with guest Barack Obama, when Belac appeared crying. I feel so left out! I put my arm around him and walked him back to bed. I miss my family! I laid down a few minutes with him. Tomorrow will be a better day, okay? This is punishment for swearing, today. Using mean words. Can we watch Colbert tomorrow? Belac, you don't even like Colbert. Can we have fun in the morning? Can we watch Colbert in the morning? Can we watch the exact same Colbert episode tomorrow night? came the gazillion questions.

Belac, I said, am I being punished for swearing, today? Well, then maybe you could encourage me to go downstairs and finish the show. I love you and you are a good boy and I know that you aren't going to swear, tomorrow, right? And we will all watch another episode of Colbert Report tomorrow night. Find other words to use when you are upset, tomorrow, and we will watch Colbert together.

Went back down and finished the episode. He's sobbing, I told hubby, maybe you can say a few encouraging words to him. And that is how in the end, we both ended up in Belac's room. Hubby called down and asked me to come. I just need some family time, Belac explained to me as I entered the very dark room, for 20 minutes, or maybe 10 minutes. I found hubby laying in bed with Belac, telling him in a gentle voice about his growing up and using a pool table with a blanket over it as a clubhouse, how he played with his siblings, what the weather was probably like in St. Donat right now, with the occasional "cool" or "oh" interjection from Belac.

I laid on the pullout bed and just listened. And this sounds really morbid, but I did think this. I used to worry that I really needed to live forever because I was the only one with a sort of 'soft' relationship with the boys. Listening to hubby talk to Belac, and his knowing that it was important for Belac to feel his family near him and calling me up to the room, in this most unusual of arrangements given this was a punishment... it just made me realize what a complete parent hubby is. He is an amazing dad. Hopefully, though the kids will always have both of us.

I received a text from friend and burrowed down in the sleeping bag to contain the light from my phone. She's back in the hospital. When and how will this nightmare end?? she asked. Everyone around this deeply tortured child, who currently sees everyone around her as an enemy, is frantically swarming about, aggressively seeking advice of therapists and doctors, trying to figure out what to do. How did - whatever this is - suddenly take such a violent grip on this child?  Take deep breaths, I wrote, 1 day at a time. Text me, tmw, about whatever you need. Stay strong, you're doing all the right things. Now try to sleep. xxxx

I didn't hear a response but knew she appreciated it. They are good parents, too, but have suddenly found themselves near the edge of a cliff, where their child is standing with one foot on tippy toe. I only hope no one's story ends at that place.

F word

new story board for special needs service

Just kissed Belac good night. He had earlier called from the Guidance Counselor's office to tell on himself, that he had used the F word in Social Studies class. A reaction to realizing he had not completed the Social Studies homework. And then when a kid snickered, he told me he retorted "Shut the F up." Still all was okay, somehow, until Belac drew a stick figure on the Social Studies teacher's poster. He was yelled at, he told me. He was first sent to his homeroom teacher and then to the Guidance Counselor's office. He immediately wanted to call me and I had him and 2 other teachers on speaker phone. Kati had stopped by and happened to hear all and I sort of rolled my eyes at her as I finished up.

You can tell, I told Kati, that I've been dealing with this sort of stuff for a while. 5-6 years ago, I would have been taking it all personally and worrying about what everyone thinks. But instead, I'm trying to figure out what they can do and I can do to get this kid to stop swearing. What other words he could use when he's upset. CHICKEN SAUSAGE! hubby suggested at dinner, and we all laughed. I liked Holy Jupiter! when you used it once, I laughed. We we were all laughing but Belac. I just like swearing and it feels comfortable in my mouth. Jake sighed and slapped his forehead.

He and I talked a long time. About how swearing to feel like the others, was actually getting him bad attention that he definitely did not want. And that he was starting to earn the reputation of not being able to control himself or not exercising good judgment. He was teary, mom, Mom!! I will apologize to the kid, okay? I will apologize to the kid. 

But you should know. Flower is in Social Studies class, too, right? What do you think she thinks about today...? Mom! Mom...! She probably didn't hear. I'm going to try to not swear anymore, ok? I'm really going to try! Shut the FUCK UP!!! I declared to him as angrily as I could. He looked at me in shock and said, I know you didn't mean it.... Of course, I didn't mean it! I saw he was weeping and knew I had scared him. Belac, do you see how those words are just so awful? It makes saying shut up a million times worse than it needed to be. Sometimes when you're mad, you just need to find a way to take a minute to calm down. Then you won't want to say those terrible words. 

His punishment - he suggested and we agreed - was going to bed 30 minutes early. He hates, hates, hates going to bed early and always wants to stay up late. 

I love you so much Belac, I told him as I kissed him good night, you are such a good boy. I  know you won't draw on someone else's stuff again, but you really, really, really need to control your swearing. Just don't do it, it's gotten you in so much trouble! It makes people feel really bed and it doesn't make you look good. Let's figure out other words, okay? 

I'm going to try, mom. But I can't promise. Jake always says that I always promise and break my promise. So all I can say is that I'm trying, ok? But it's going to take time to get used to it.

Ok, I hugged him, I know you can do it!! Now sleep well.

10:47

Me: if you don't come home soon, I will have drunk an entire bottle of wine by myself. Slowing myself down with Pringles, though... !

Hubby left on foot for a 7:30 board meeting around the corner. He is leading the negotiations for the rabbi's contract renewal. We just cannot renew at his current rate and he has been hostile and said no, Most everyone has given up but hubby has hope, reading in between the lines of Rabbi's emails and trying to frame the contract more attractively.

Why are you up? Jake asked me when he came down a little while ago and shared a handful of chips with me. Because dad's not home yet and he waited up for me, last night. It's my turn.

Still, enough is enough. Come home!!

to 25 people

There were many motivated and emotional emails back and forth about how to help a family in our congregation. Blah, blah, blah. The mom has been given 30 days to live after many illnesses and brain cancer, and our help was basically refused. She has high school aged children. The mom and I became friendly and chummy after she once booted Belac from the babysitting room during High Holiday services, and she had been by the house a few times.

I wrote:

Hi everyone,

I did hear from Richie, who mentioned that they are okay with meals at the moment. I think the most important thing is that they feel loved and supported, but how to express that beyond the emails?

The other day, I happened to read this article (link below) about how church members uplifted a new widow. I thought this was a very beautiful story and maybe this could be a way we could show our support and care for Rose and her family, while also respecting their wishes. Maybe leaving these personalized gestures in their mailbox or doorstep might be kind of fun for them. A note with some herbal tea bags. A little honey and a poem. A cd of soothing music. Something that smells nice or a soft scarf. A few jokes. Some nice shampoo, soap or hand creme.

https://www.yahoo.com/parenting/inspiring-way-mom-pays-anonymous-gifts-forward-104385998277.html

If anyone thinks this might be a good idea, I am happy to arrange. Just let me know.

Gimky

I got good feedback and replied all:

Ok, so how about we do this.

If you'd like to be part of this initiative, please drop off your gift/token at synagogue in a marked laundry basket I will put in a back pew near the office (I'll be there Thurs, Fri, Sat and Sun, this week, and every Thurs and Sun at Hebrew School pick up) or on the covered porch of my house. I will put a basket there, too. Totally fine if it's not wrapped, I have plenty of paper, but I will deliver. This way I can make sure something arrives everyday of Chanukah, and possibly beforehand, as I think there is no reason to delay.

Something thoughtful and sweet and possibly uplifting/comforting might be the simple guideline. And maybe we could just sign off on the attached note that it's from the synagogue, so the family knows it's from the the whole community.

Thank you so much!

Gimky

home skills

Because I volunteered, today, I had a chance to exchange both waves and smiles with the Principal and Assistant Principal.

A few funny words with the French teacher.

A hello and wave from Belac's homeroom teacher, last year, as we passed each other.

Some exchanges with Maintenance over a leak in the library ceiling and what kind of new roof would be going on.

A 10 minute conversation with Belac's old speech teacher crammed with all sorts of goodies. I told her that Belac was just starting with a therapist in hopes of his looking at his situation more positively and developing better coping and problem solving skills. And then she shared with me the story of her nephew, who reminded her so much of Belac. Her nephew - in another state - was just starting to get acceptances from colleges but they already decided on the local one, 20 minutes away, even though they were certain there would be more prestigious options. The plan was he'd live at school a few days during the week and come home on the week end and other days as necessary. I told her about Dr. Volkmar's statistic and how the nephew's parents were clearly being smart about his long term success. Oh my God! she told me, I'm going to tell my sister about that statistic.

Belac's face lit up when he saw me enter his classroom, he waved and said hi mom! quietly. The teacher welcomed me and the kids clapped. 42 minutes I was there, helping both him and the others. The sewing was hard for almost all of them. The cutting of the material in previous classes was easy enough but it was now figuring out how to sew all the pieces together when each student had chosen different sewing kits. Belac had 2 fuzzy dice to sew, someone else a monkey face, a soccer ball for another.... Almost everyone needed help. Are you coming tomorrow? a girl asked. Thank you, Mrs. F, a few said on their way out. And then there was Belac, who looking out the window, asked me. Uh, Mom? Can you pick me up today? I know it's raining hard, I'll see you at 3. But didn't you say I don't go to Activity Period today? Oh, that's right, we're seeing Dr. Wiseman. I'll meet you at 2:30, okay? Thanks, Mom! He is such a good kid and I loved seeing him managing on his own and part of quiet small talk at his table. I could see why he liked being there. I love you so much! I kissed him and shooed him out the library door, see you later!

You have the words and the know how to help the kids, exclaimed the teacher, thank you so much! You are welcome everyday! It was so fun! I told her, I'll come whenever I can.

Driving home, I could only shake my head in disbelief. It always surprises me how Belac likes seeing me at school. That's certainly not how I would have felt at his age, seeing my mother at school meant something bad or that I had done something wrong. But in his case, I think he feels less alone or something. And I think he feels proud when he sees me tuning violins and roaming around helping others, not just him. Like, that's my mom and she's helping you, too. I can just tell that he likes my being there from the little smile on his face. I'm just surprised because he's not attached to me at other times, but then again, school is hard for him and maybe he feels like things are okay when he sees me in that environment.

I enjoy seeing him in the classroom and the chit chat with the teachers. I like making sure that they know that he has a 'normal' enough mom and someone who is doing her part. Belac is so high functioning, you might forget that his issues are not one of poor training or character but of actual disability. I put it down in my calendar. I plan to be in Home Skills every Tuesday!

nighty night

This morning seems like such a long time ago. My head is swirling from today. Ended the evening with a special needs event that we knew would not be well attended. Someone had the wherewithal to bring a couple bottles of wine and I brought my violin and serenaded all during the 20 minutes of registration and wine uncorking. By the time the evening was done, I was already over an hour late in getting home and even then, lingered over funny stories while shivering in the parking lot with the last few. It made me happy.

I have found amazing community over the years and am eternally grateful. I am definitely not alone.

Monday

My friend wrote this morning. She is in so much pain, she wrote me, new developments. Come, I told her, but a student arrives at 9:30 and so it's tight and I'm gone for the rest of the day. Still, come, I want to hear everything. Something terrible has happened with the dot's teacher. I cringe to hear what screwed up thing it is now.... I still need to practice for this rehearsal in Queens, but...

At the same time, I read a note from Olivia. It's confirmed! We have a concert together in the Spring. Like old times. It's been at least 15 years since we've been on stage together. I'm so happy.

And that's life, right? You struggle and try to fix the hard, you embrace the good when it comes.

Tmw

I rehearse a chorus at a college in Queens for some hours, tomorrow.  I've been studying the words, singing all 4 parts while conducting and playing the piano and reading up on the historical context of these pieces. I'm both excited and nervous, it's been a long time since I did this kind of work. Unless you count the 20 elementary school kids I've been rehearsing for a Hanukkah concert at the senior center, next Sunday, or a Christmas concert at one of my nursery schools. Every little bit helps I think, but I have to switch gears with the adults....

I appreciate the variety of work, it makes my life interesting! However, I often fluctuate between too much or not enough, and that can be nerve-wracking. Not complaining, though. I've wanted more, and I definitely have much more of everything - the teaching, playing, special needs.... I start teaching at 9:30, tomorrow, and won't be home until at least 9pm. It'll be a crazy day, but it's okay. It's good, and I am blessed.

Friday

Easy Friday night. Roaring fire. Hubby and kids watching some sci-fi movie off his computer, all of us in pjs and sweats. Popped popcorn and sipping wine and eating dried seaweed. I am happy we were all home by 6:30, walking from Belac's movie showing at the lab, with nothing pressing and no one to entertain. I don't teach tomorrow and no one has anything til 10. I laid down the law. Noone is allowed out of bed before 8am tmw. No one!! Everyone needs to catch up on sleep, reading in bed and down time

TGIF.

hi

After teaching in Greenwich, I met hubby near his Stamford office for lunch. It was so easy and nice. As they brought us drinks, he wondered if I'd have time to stop by his office. I really didn't want to, it had been a long week and I secretly hoped we'd run out of time. But at the end of the meal, I asked, do you really want me to come by? Gimky, it's good for people and my team to see the more human side of me. You are such a good schmoozer, can I just introduce you to my team...?

Ok, I said, as I started with my eye make up in the car. Stop! he said. Look, if we're doing this, I shrugged and sort of laughed, best I look a certain way. Let's do it right, just give me 5 minutes!

And so we made the rounds and I chit chatted. One team member disclosed that she was struggling with a lazy 14 year old at home, who was too happy doing bare minimum. Do you have that problem? she asked, who is the tiger parent between the two of you? Another person told me that she hated when her hubby used his phone while driving. I rolled my eyes, tell me about it! Another guy told me he had just gotten back from India for a wedding, and there was interesting stuff to chat about there. They never talk to me about this stuff, hubby whispered, back at the elevator. While we're at it, I told hubby, let's go see your boss. He paused and I pushed up instead of down. Hey! I called out with a big smile, as I reached to shake his boss' hand and he took it to hug me. It had been a few years at least. We caught up on his kids - one just got married - and he was surprised I remembered his wife's name when I asked how she was doing. Talked a little bit about the school in Greenwich I had just come from, and then he offered as we said good byes, we should all get dinner sometime. Absolutely! I agreed, let's do it.

Okay, honey, I told hubby at the elevator, let's go to the top floor. Uh, really...? Really!! I laughed, come on! If we run into the CEO, we'll just keep it short, cool and formal, ok? But let's go find Kristy. Do I have anything in my teeth? I asked. This woman is way up on the chain, too, but we've just had surprisingly great conversations whenever we've met. It always makes hubby so shocked and almost nervous seeing me chum it up with her. I guess I don't know my place and don't take people's titles too much to heart, but I also think she's starving for some real interaction, too. Last time I saw this woman, we bonded over our observations of hair salons in Taiwan, she's not Asian but travels there for work, and we commented and laughed about things that were not exactly inappropriate, but not very corporate-like either. At this same particular party, no one was dancing at the dinner, even though the band was good. It was uptight and painful, a bunch of preppy, dressed up Connecticut people that were too cool for this. I took hubby out on the dance floor, me wearing my 20 year old cowboy boots and discount finds, and made him dance with me. Eventually others got up. Good you did that! she whispered to me later, as if telling me a secret. Well, I said, I need to get home before midnight, so let's just get this party going! (So I can go home! I held back.)

People are people, and I bet it's lonely on top. C'mon, sweetie! I told hubby, she'll be flattered we stopped in to say hi.

reply

Hi Gimky,

No wonder you went off for awhile! I never see negative things like that, as I just see ordinary stuff -photos, jokes, etc. from friends and family. Much nicer :). But I have heard of such crazy things, like this guy who is getting divorced and threatened, on Facebook, to chop up his wife into small pieces and/or kill a whole kindergarten class! Man, at least he is spending time in jail. I mean, free speech is one thing but these kinds of threats should be taken seriously. Guy is probably a whack job. (His excuse/reason: he was just venting and these were were lyrics to a rap song. Yeah, tell that to the marines.)

I spoke with hubby about Belac and he feels he would like to contribute to his therapy. I guess insurance is not covering any of it? Anyhow, we'd really like to help out-it would be good for him to see someone like that. 

See you soon.

Love, 

Hubby's mother

My MIL used to scare me. She's very articulate and speaks her mind, even if everyone disagrees. She would never in a million years run away, crying. In the very beginning I felt she didn't like me because I was too agreeable. She'd tell me, it can't be the same to you if we have chicken or beef for dinner, please express an opinion!! Later, I'd learn to give her decisive answers just to appease her, but then I think she - in turn - appreciated there were certain things I didn't really care about, one way or another, especially after her family of 5 kids exploded with spouses and a gazillion kids and just too many opinions, needs and wants to manage.

This response from my MIL first made me laugh and then cry. Her brother, who I am chummy with at family gatherings, once paid my MIL a compliment, saying - and perhaps advising me, my sister doesn't shy away from difficult situations and people, she's very good in that way and you should know that. 

I have certainly come to appreciate this over the years. 

Thank you so much, I wrote back. I'm not sure what we're going to do, yet, but we'll keep you posted.

response to a note

It occurred to me after I sent this note, that it might be too much. She didn't ask what was going on at home, did she? Only had a few questions about why I went off Facebook. I learned a long time ago that not everyone wants to know the hard stuff and some cannot even bring themselves to respond to difficult situations, so better to just keep it light as a general rule and not get into such a predicament. Whoops! I'd take it all back if I could.


Dear MIL,

I never intended to go off FB forever. I manage 2 FB pages there for Special Needs organizations. But I did see a terrible clip on a friend's page of a boy being mistreated and horrible comments about how the boy deserved it (I think he's autistic) or how terrible the parent was. The friend invited comments and it was just very upsetting to read such nastiness and people patting themselves on their own backs for being such great parents and how they'd never end up with a kid like that, all the while not realizing that this kid probably had serious issues. It unnerved me how smug people can be. Then there was my neighbor who had a public status that read: to the SHITBAGS who stole my halloween decorations. The next time you step foot on my property, know that this angry autism mom is an NRA card carrying gun owner. You know what happened to her? She was forced to resign as president of the Special Needs organization in Sunny Patch. I don't know... I just had had enough of the negativity. I'm back, though, and really only keeping up with family, occasionally with others when I have the stomach for it. And I have to maintain those 2 FB pages, so I have to be on now and again!

So that's that in a nutshell.

On the homefront, we are deciding now, whether to shell out $375/45 minutes per week for Belac to see a behavioral therapist. I had a session with the doctor, 2 weeks ago, as did Belac, last night, to get him up to speed about Belac's needs. We are very hesitant, it is so much money. But Belac has had a lot of stress at school, has been talking about feeling left out, his small size, not being able to pay attention. Some kids have been calling him autistic or special needs and he told me he wanted to kill himself or runaway and vanish. I am pretty sure he doesn't mean it, but he obviously needs help coping. 

This therapist came at the top of 3 recommendations by the head of special education in our district and from a friend, who credits this therapist for having turned things around for her 16 year old on the spectrum. BUT, this is quite a lot of money out of pocket! I was skeptical, but like this guy. He's cool, in his late 30s, has the best degrees and training, his whole office is stripped except for a few games (connect 4, a basketball hoop and balls, rubics cube) and a computer for him to take notes. Belac apparently talked an entire 45 minutes non-stop with him last night about his stress, and I had a chance at the end to see them interact over a few games of Connect 4. I had a good feeling. The guy is a very, very good listener, easy going, and does not overload anyone with talking.Though Belac and I talk a lot, I don't have the expertise to know how to proactively help except to hug him and listen.... The other attractive thing, is that the therapist spends a decent amount of time consulting with the schools of his patients to advise on how to help these kids. So next step is to get hubby to meet him. It's obviously a difficult decision given the expense and a certain amount of skepticism that this could truly help in ways we aren't already trying directly ourselves with Belac and with the school.

Looking forward to December!!

Love, Gimky

seeking the right kind of help

This morning, he told me that he was "stressed out" about school. I reminded him we were going to see someone, tonight. A therapist who might be able to help him feel better and figure out what he can do to improve his situation. He seemed good with that.

I filled out the 25 pages as honestly and accurately as I could. It is a treasure trove of information. I listed his top 3 problems as being 1) Negativity, 2) Rigidity, 3) Concentration, and that we were seeking therapy because he needed help 1) Navigating the middle school social scene, 2) Self-esteem, and 3) Problem solving. I noted that although he had in moments of despair and sadness - in the past 6 months - declared he wanted to 'kill himself,' run away or vanish, I didn't believe he was serious about those claims.

I think he tells me almost everything, and things he won't tell hubby or asks me not to tell hubby. I'm relieved we have a good relationship and he doesn't seem to hold things in with me. The nurse and the Guidance Counselor have let him use their phones to call me when he's showed up at their offices, stressed out about something with school. I'm the hug, the salve, but it's not enough. Looking for experienced and professional help to guide us in proactive ways.

thank you

I made sure to be the one to tune her violin this morning. And as I did, I told her: Thank you for being Belac's stand partner. You are a great role model for him and I notice how much you help him. Thank you so much!  You're welcome, came the reply.

All week, I see how this girl tolerates him. He can play the notes, but when everyone is in rest position, his violin is up. Everyone's violin is up, and his is in rest position. Everyone stands up, he's 2 seconds behind. And he never helps with getting the right music in front of them, she's doing it for both, and sometimes I see he is chattering about something he's thinking about. Everyone seems paired up with someone equal, but she is sort of carrying both of them. She sits as far away from him as she can, while still sharing a stand. They are both in the first row of 2nd violin, she in the lead seat. He is next to her, so that he's right under the baton of the orchestra teacher and surrounded by kids who know what they are doing. I hope the teacher thanks her, but still, it's so important that this 11 year old hear it from me. Thank you!

By the way, my piano student is concert mistress of the orchestra. She sees this all, I now realize, but amazingly enough, still shows up at our door on week ends to participate in Belac's go pro video-making....

I'm also volunteering in Home Skills, where the class is huge and everyone is learning to tie knots for sewing. The teacher called me at home to touch base about making sure it was a successful semester for Belac. She knew us from elementary school, where she used to be the librarian. He loves Home Skills but can get frustrated. Also he's not always there everyday like the others because he shares that period with Orchestra. Do you want to come in and... volunteer? she asked, hesitantly, as if she were asking a lot. You could assist him when he needs, but you wouldn't be just helping him. To be honest, I'm trying to get an aide in the class, because there are just too many kids. You'd be going around and helping anyone who needs it.

Of course!!

There are so very few opportunities to volunteer at the middle school where you can actually be in the classroom and see what's happening. I consider being invited in a privilege. I also get to chat casually with the teachers and administration I bump into. And simply, to show my deep appreciation. The kids' teachers really care and they have gone above and beyond to help both of my boys.

Thank you.

Late evening

Hubby now advising Jake. He is turning in his first ever essay, tomorrow. It's taken all week long, and what can I say? It's rough and awkward and he has had a hard time organizing his thoughts. Not the most well supported analysis of 2 short stories by Ray Bradbury. I mean, it's frigging hard. The kids have to analyze and compare 2 pieces of writing, provide sufficient background details, come up with a thesis and introduce, support and conclude their own argument effectively. He had already been suffering through the rewrite for hours after school today and then at 9:30pm, I heard hubby reading with him an essay the teacher gave as an example and analyzing the essay together. He is such a good teacher and has so much patience I don't have!

Belac just got out of bed to confide in me that he flashed his penis in one of the movies he made this wknd with his friends. I looked at him puzzled, what? Well, Ethan was talking about penises and so I was trying to be funny. Okay, you'll edit it out, now can you go to bed? Are you worried about this? No, but I just wanted to tell you.... Okay, you'll edit and cover it with a flower or something funny, but you shouldn't be showing them your privates. Do you know why...? Ok, now go back to bed!

Every morning this week I'm helping the orchestra out at 7:45am. It's one thing to get the kids to school by then, but a much different matter to be presentable at that hour. I seem to run into all the boys' teachers. Phew! I hear the printer moving. Shooing the rest of us off to bed.

the aging group

In trying to find videos of teenagers with Fragile X syndrome, I ended up watching until 16:33 of Autism Documentary Make Me Normal. I don't want to pass judgment too quickly. I know this was a video to enlighten those on the outside to these kids' particular challenges. It was not about the school's interventions and methods. The Principal obviously means well, as do the teachers. They care and probably do a good job, maybe an amazing job! But this documentary was just so depressing and if I saw this as a prospective parent, I'd never send Belac to such a place.

I really believe that high functioning autistic kids do not belong in a school with just autistic kids. Maybe no autistic child belongs in a school with kids of just this disability. How do they learn to behave better, cope better? They need neurotypical role models. They really can't be so segregated from their neurotypical peers and told this and that by teachers, twice their age. At the very least, they need contact with other types of learning disabled kids. who exhibit more neurotypical behavior.

The reading from the meticulous log of the boy's bad behavior. In every instance, was it written down what actually preceded this behavior? If you're going through all this trouble, are you at least being scientific and taking down data to fully understand the triggers? Or is it really just to keep one of the 'better' kids in the school and justify your position in the case of legal action? Did the log also record exceptionally good behavior and what preceded those events? This behavior plan - if that's what it is - is nothing but punitive and devoid of any positive reinforcement. And if it's simply a log that happens to record nothing but bad behavior, that is also serious in what it indicates. If I had Aspergers and a mom dying of cancer, I'd be acting out, too. Does he really belong in such a school, honestly? He needs a friend! I am sure there are plenty of other neurotypical 11 year olds with an obsession with Star Wars, but he's not likely to find them in that environment, is he? I mean, there wasn't one other kid in his current school who could have gone on this Star Wars outing with him? Instead he goes alone with a teacher, who can't at all share in the excitement of this event??! I mean, this is Autism 101, right? Organize and facilitate peer relationships over mutual interests. It just drives me bonkers to see this.

And while I think it's important to know thy self, the flippant use of 'your autism' in talking with the girl is like a dagger. It's too much. This girl is not hopeless nor helpless. Empower her, I wanted to shake the principal, tell her she can do it! I had to shut off the video when the principal blamed -point blank and to her face - the girl's autism "your autism" for not understanding something. How about the fact that she's young, 13 and probably hormonal? How about giving her options of what she CAN do? Give her a responsibility of something or someone and lavish positive attention over her for a job well done? How about not asking leading questions and talking to her so much? Discussing and not telling, let her come to her own meaningful conclusions instead of the quick fix. Does she ever get called to her office to be high five and praised and hugged for a good day? I mean, obviously this is unnatural being filmed and so out of context, maybe the good stuff happens off camera. But I just could not finish watching this.

I know it's school, but I don't see or feel any love. It's transactional. Maybe it's not the place to be anything but transactional, these days, but then something is seriously wrong with this world and all our irrelevant benchmarks. These kids should be out on a farm with a hoe in hand. In the sunshine and under the big blue sky. In the rain. Planting. Feeding animals, shoveling dung, collecting eggs. Watching their crop grow and eating the fruits of their labor. Cooking. Doing! It's science, math, it's exercise, engagement, nutrition, interaction over an important activity, following directions, self help. Being part of a real team in a hands on, important way. Not sitting at a table all day long, allowed to buy tapes only to destroy them - even if simply for the video, and preparing them for what? Would we let an alcoholic have a sip of something just to prove something on a video? And then this kid blames his behavior on autism? How about perfectionism or obsessive compulsiveness. How is this sentiment - this is why I wish I didn't have autism (a huge, controversial label that has come to mean too many things) - really helpful except as some bland, rehearsed excuse?

So many videos of disabilities are of cute little kids. I feel like they get older and we don't know what to do with them. They aren't cute any more. They are annoying or strange. But we just thoughtlessly keep trying to mold them into neurotypicals, anyway, no matter how they resist or what obstacles we keep running up against. We are energizer bunnies, checking off our boxes, taking our paychecks. But every now and then, we all need to ask. Is this really working? Could we all just think outside of the box and put our heads together? Maybe what we're doing is ineffective. Maybe radical change is necessary.

dealing

The question came up about big sister's past. Could she have ever been abused. Sexually abused, to be specific, when she was young.

Friend recounted her conversation with dot's therapist, this afternoon. And I could see nervousness and distraught all over her face. Gimky, I don't know. I was finishing my degree at the time, so we had a bunch of babysitters. There was one sitter I had to let go. She loved dot, but we didn't like her. I never thought!! I mean... you just never know. I can't think about it now or I will go crazy.

I worry that this most recent teacher to whom she has become obsessed had an affair with dot. I had brought it up gently with friend a couple of times, as did the therapist. No one knows, only dot knows, who is back at school and trying to finish up the semester, if only because she had nowhere else to go after the blow up at home. She finally reached out to the therapist and there is relative still for now.

I feel so sorry for dot. And you know what? I feel so sorry for my mom. I wish I could see for myself what happened when she was young. I wish she had had a couple of sisters to protect her and validate her experience, although it's not lost on me that it was not enough to save dot from this fate....

One of my cousins told me over Thanksgiving, that she didn't think she wanted children. It's such an unpopular, unegotistical sentiment. I mean, doesn't she want more of her for the world? To kvell and commiserate with others in mommydom? You're supposed to have children!! And while I will never ever regret having my boys and would do it all over in a heart beat, any hardships and all, I respect and admire my cousin's thoughtfulness. Wholeheartedly.

Parenthood is beautiful! Parenthood is hard. And you know what? For some it is very, very hard. "You get what you get and you don't get upset" I tell all my kids, when I hand out shakers in so many different rainbow colors at music class. But inevitably, someone wants red and doesn't get red or grabs a coveted color from someone else or simply won't participate. That cute little motto. Well, it's just easier said than done.

new kind of student

The child has Fragile X syndrome and is 12 years old. The mom is intent on giving her son piano lessons. We spoke for 20 minutes by phone, today. We talked about other programs, all in southern Westchester, and she felt all were too far given her son's anxiety about long car rides. She asked me about what I'd do with a kid like hers, and I told her in general terms. I'd try to meet him where he is and go from there. I told her about my first special needs student, who jumped on my couch. Jumping on my couch became a counting game, then a drumming counting game, then a playing counting game on the piano. And his obsession with letters turned into a game of only letters found on the piano and then in any combination that could be played on the piano.... He now lives in Manhattan, this 11 year old kid, where he composes and studies the piano with a local teacher. He has blossomed!

The mom has no piano or keyboard at home for her son, but he apparently loves and responds to music. He is always humming and singing. He receives Music Therapy at school and it's his favorite subject. He doesn't write and uses an I-pad for communication, using just his pointer right finger. Doesn't draw. I don't know what he does with his fingers, regularly. Or what his attention span is, although my understanding is that Fragile X resembles autism with intellectual challenges.

It makes me emotional to hear all this. I wouldn't continue paying for Belac to study violin with a local person because he wasn't practicing enough. Still, he could and can play. What this woman is asking for is different. Obviously, this wasn't about getting her kid in Juilliard, nor even about achieving general discipline and learning delayed gratification for those less serious. This was about... she didn't and couldn't say, and I can only hypothesize, giving him one on one instruction in music, wherever he is, and helping him enjoy music more, enriching his life over something where he is most present. But who is this job for? A music therapist, right...?

We talked logistics and times,  I will be waiting for your phone call, she told me before hanging up.

I am available to teach when this boy is free and able to come, but couldn't bring myself to say so. I need to read up and do a little research. You know, I teach myself and learn new songs and ways to teach my classes, all via youtube? It's very informative and such a treasure trove! But on this topic, I can tell I'm going to have to dig. I just want to do the right thing and for especially these people, who I consider one of mine. They shouldn't waste their time or money with me if I can't deliver. Still. It is something totally interesting for me to figure out. I'm curious and motivated, even honored.