Happy New Year?

Well, here we are, it’s a new year.  I have ditched my iPad in favor of a Kindle Fire tablet gifted to me by Alison.  It’s become my new best friend and also made me extremely grateful for those who gift me.  I seriously couldn’t afford such tech or gadgetry for myself and I do appreciate it.

I love it and am especially happy that the keyboard I got for the iPad works with it as well.  I am, in fact, typing on it as we speak.  I play sudoku on it, read more on it, take it places with me, watch Pride and Prejudice endlessly on it while I do dishes, write on it and take pictures with it.  Eventually I’ll figure out how to text on it and then, oh boy, I’ll be set won’t I?  Unfortunately it also makes window shopping on Amazon even easier but hey, my wish lists can’t hurt me.

It’s snowing out there today and I’ve been thinking about so many things for future blogs.  My big, fat Israeli divorce.  My heart bleeding silently for Jerusalem.  My love for my fiance and home here under the permafrost.  How these two things can be compatible in my life – my two greatest loves which are so very far apart.  My son, who is growing up before me and how hard this is for us both.  How autism morphs and changes and we blaze new and unknown trails every day as he grows into such an amazing young man and I struggle, as always, to just keep up and continue to wonder why people praise me for being a great mom – really, it’s because he’s such a tremendous young man.

I’m crocheting now after my knitting just disgusted me to the point of giving it up for now although Knitpicks has my nickel plated interchangeables for sale and they’re really gnawing away at me.  I still harbor that intense hatred for Polish customs for throwing away my needles in case you’re still wondering.  Anyway, I am making a “starburst” square afghan which consists of a gabillion little kinda granny squares that are really little starbursts that will all hook together.  I need a gabillion and I think I have 17 done.  Tune in later for more on THAT one.

I’ve been baking bread that sometimes people eat and lately, most of the time they snub.  Along with most of my dinners.  Oh Scott eats everything and praises what I cook and since I cook as an art, that makes me happy but still.  I have a can of raspberry pie filling and a package of yellow cake mix….I’m thinking raspberry filled cupcaked for Shabbat this week.  If I feel like it, I MAY share them with the children.

Then again, maybe not.  Depends.

I spent most of December worrying because on the first night of Hanukkah I got a call about my old house – someone was interested in buying it.  It wasn’t in the greatest shape and really, not in the best location and honestly, I wanted to just get rid of it before someone torched it.  The median sales price for what I had was less than $20,000 so I was happy with what we negotiated and I agreed to a sales price.  Talk about a Hanukkah miracle.  Most houses where my house was are on the market for 3-5 years and houses like mine?  Usually just abandoned.  So…being the worrier I am, I worried until the sales contract was signed and then I worried until the closing because I knew it would either fall through, there would be some wild lien I couldn’t even fathom or someone would torch it before we could get pen to paper.  I asked everyone I could think of for prayers and prayed as much as I could and to my own surprise on 31 December, we closed quickly, easily and with no fanfare.  Just signed the papers, said “Well, that’s that”, said goodbye to the ex, and walked away.  I never felt so relieved in my life.

I set about paying off debts I never thought I could pay off – I can’t even describe the feeling.  I have been so poor for so long and remain poor even after everything is now settled but I know that I am building a better life that hopefully will reveal itself.

Miracles are afoot and I bask in them.  I learned a long time ago that sometimes the only thing you can do is ride the tide of the miracles and just let HaShem do his thing and take you where you’re meant to go.  Fighting it really doesn’t get you anywhere and to be honest, basking in the glow of miracles is a pretty amazing feeling.  I recommend you try it.

I still feel anxious and, I hate to say it, depressed.  Maybe it’s the winter time even though I enjoy this time.  I think maybe depression isn’t even the right word.  Sometimes tired seems more like the right word.  Like life just makes me tired.  The happys aren’t as sparkly but that doesn’t mean I don’t feel happy, it’s like Scott said to me one evening when I was watching something funny on tv – “why aren’t you laughing?”  I was amused, just not enough to make me laugh out loud.  It’s hard to describe.  I suppose it’s like you can see the sun but it’s just not sparkly sunshine.  The sky is not a birdsegg blue.  You just DO, you don’t BE.  I can’t explain but that’s how I feel about it.  Sometimes I wish I could just sleep all day but I can’t.  I know that that’s what keeps me getting up each day.  If it weren’t so cold out, I’d be walking.  Routine powers my day but it doesn’t mean it’s any less exhausting just going about the routine of life.  And I am okay with it.  The routine gets me up and moving and I try to make little bits to look forward to, to break up the monotony of the routine….but the exhaustion and boredom remain.  Maybe someday it will change.  Right now, I just don’t see that.

So anyway, if I haven’t depressed you to death or bored you silly, happy new year to you.  Have you made any resolutions?  I used to when I was little.  I’d make – wait or it….schedules and routines for me to follow.  Now, not so much.  I make changes as I go…I don’t necessarily see calendar dates as the big time to decide to change my life.  This year I will be walking a 5k at the Pittsburgh Marathon and I am raising money for Evan’s Miracle League baseball team that allows kids with special needs to play adaptive baseball  (DONATE HERE) which is one of the most worthwhile things I can think of EVER doing so I am training for that.  And as usual I am doing random acts of kindness like carrying my emergency dollar to help people with change at the grocery store, helping out when I can (like bringing in trash cans when people are at work and it’s windy) and just trying to be a better human being this year.

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Memories – Tic Tacs, Velveeta and Baseball

I spent every summer with my grandmother to the point that a lot of my childhood memories revolve around the things that we did together and the memories I have of her.

I remember the blankets on the beds – blue flowery bankets edged in teal satin.  Her perfume – that dark brown, “grandmother” perfum from Estee Lauder called (interestingly) Youth Dew.  Her Adorn hairspray.  The aluminum gliders on the porch.  Fireflies in the twilight.  The tree in the back yard.  The peonies in the front yard.  How she would sneak a cigarette on the back porch while my grandfather was working in his study.  Laundry day and the laundry chute.  Sewing with her in the basement.  The way the books in the basement smelled and being scared of what really was behind THAT wooden door down there!

She, my grandfather and I would sit on their bed and watch the Pittsburgh Pirates play baseball on KDKA every night they were on.  If they weren’t on we would listen to them on the radio and if it was a really special night, we would go INTO Pittsburgh to see the game at Three Rivers Stadium!  I loved each of those nights and love the Buccos to this day!  I can still hear her kvell about her favourite players.  When I was an exchange student in New Zealand the Pirates made it to the World Series and not only did my grandmother send me Heinz ketchup that year but she also send me all kinds of Pirate memorabilia that was in all of the stores so I wouldn’t miss out.

She was a home ec teacher and taught school for 30 years before she retired.  My dad decided to take bartending school in Pittsburgh so while he would be in school, my grandmother would teach me to sew.  I made a really geeky polyester outfit but the time we spent together making it remains priceless. I wish I had a sewing machine even now because I love sewing that much.  When I was little and lived with her before my mom married my dad, my grandmother not only dyed her own shoes…she also made all of her own clothes.  That’s some serious respect you’re seeing from over here!

I still have her teaching cookbook which I use a lot.  Her favorite recipes are marked in it.

One thing though she couldn’t stand were vegetables and the way she choked them down was copious quantities of Velveeta melted on them.  I was basically starved at home since my parents were never there and school lunch was our only meal most of the time so this delicacy of Velveeta and broccoli or french cut green beans was like nectar!

And as far as I was concerned, her only really bad habit was her smoking.  I think because of it I can jokingly say she became addicted to Tic Tacs.  I know now that when I pop one in my mouth, that sweet vanilla mint outer coating makes me think immediately of her.  The smell of Youth Dew wafts around me and my grandmother is right there again.

I hope she knows how many memories she gave me and how very much I miss her.  She is so much a part of who I am and tehe person I have become…more so I think than even my mother.

Tic tacs, velveeta, baseball and everything.

 

 

Fireside Chat With The Autism Mom: Life After the Autism Waiver

My son, Evan, is 21.  We were out of the country immediately after his graduation from high school which was an incredible experience.  I have to tell you, Israel is DA BOMB for autism services.  There are services for babies, little kids, big kids and adults.

TONS OF SERVICES!

So many services that they apologize to you for not being able to get your kid into a group home (if they so choose) for 6 months to a year.

SERIOUSLY???

In the US, you’re lucky to have a multi-year wait much less the blink of an eye that is a year. We really appreciated the services there but…all good things much come to an end and we returned last March for various reasons.

I got Evan back into therapy again at the John Merck Center here in Pittsburgh that specializes in autism spectrum disorders and their treatment.  Then I got him back with his case management service that helps provide various services he needs.  Unfortunately, the state cannot provide adequate services to everyone who needs them.

You know the drill…there are other children more severe than your child, yada yada yada.  So we got limited funding which would get him a community aide for a few hours a week and at least get him out of the house and into the community. This was especially important since I was having seizures (and still am) and lost my license last September.  We live in a pretty happening area but you need wheels to MAKE it happen.  It’s kind of disappointing to me to miss out on it all (although since I am agoraphobic it’s really not as bad as I make it sound – I’m all “big dog on the porch” though, to talk about it!)

Evan feels so isolated because in Israel we were in Jerusalem and it was like paradise. He figured out the bus system and with his monthly bus card, he could go anywhere the buses or light rail went, including school which made him so much more independent.  He knew the bus system so well, when stranded at the mall by a visiting friend, he called and told me he had it covered and walked in the door 20 minutes later. He could shop on his own, buy iced coffee (an Israeli treat and very unlike the US version) and generally do the weekly shopping if asked and given the credit card.  He was Mr. Jerusalem and absolutely blossomed there – including becoming fluent in Hebrew!

But now we’re home and there aren’t any buses and so he does feel kind of trapped.

Well, I was informed by our case manager that some full waiver slots were coming open.  What that would mean is that Evan would have $30k to use for aides, supported work situations, camps, programs and other goodies we can’t even begin to imagine.  When we had the original money for the aide for a few hours a week, we couldn’t even find an organization that could provide a local aide or even an aide close to Evan’s age.  We had used the services before Israel and basically he would go out for dinner and an evening at Barnes and Noble with a kid who probably couldn’t get a better job.  That discouraged us this time too since we wanted someone local to keep him in touch with his new community but also someone closer to his own age (they sent a grandma once) who could be more of a buddy and not so obviously an aide.

Once I heard full waiver slots were open, I started my campaign to get them for my son.  I called everyone I could think of, including the county social worker who would hold the determination conference, and begged.

I talked about my epilepsy and how my inability to drive really limited Evan’s life. I knew he was on the list but I didn’t know if he’d make the cut.  After all, they were reviewing ALL the individuals, some older and some younger, and some with greater need.  It was a crapshoot whether we’d get funding or not but I made sure I brought his case before the right people and fought the good fight.

And…he was the first to receive waiver funding this year. What this means is that he has this funding for life.  FOR LIFE!  Unless we move, of course, which I don’t think we would even consider unless we went back to Israel but I don’t see that happening except for vacations. He has 25 hours a week of aides who come to take him out, play basketball and do artwork with him.

It’s overwhelming actually to go from zero to 100 mph in such a short time period but I can see, while he is tired and a bit overwhelmed, he is happy. He gets to go to baseball practice and play on another league he wanted to join.  The girls who are his aides are his age and they play basketball and catch and color with him when he wants to.  They take him shopping with them and out to lunch.  He is 5th on a waiting list now for supported employment.  His psychiatrist and I think this is a great option right now as he prepares for regular employment (if he wants…but its his choice.)

Right now his days are filled which is exactly what I wanted for him.  And my heart is filled for him.  His world has opened and it’s his for the taking.  He arranges what he and his aides will do, he makes calls to schedule things and actually used the internet to find the local library’s address the other day so he could go there. I am so proud of him and glad that people listened to me with compassion for him.  That’s what we need more of.  I thank those people who made this possible.  I actually called and thanked the county social worker who I doubt gets much thanks for the hard decisions she has to make. But we thank her.

And every time I see the smile on my kid’s face after his aides are gone for the day, I thank her even more.