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.

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.

Top 15 Things Every Mommy Should Have In Her SUPER MOMMY Diaper Bag

diaper-bag-4You’d think a mom of a 21 year old wouldn’t have a diaper bag wouldn’t you?  And I probably wouldn’t except I ordered what I THOUGHT was a tote bag and it turned out to be a diaper bag.  Vera Bradley natch, so you KNOW I couldn’t just hide it.  No, being bright yellow with little flowers and a plastic liner just screamed “This is a DIAPER bag!  USE me!”

So I did.  And it’s kind of funny how useful it became.  I could carry everything we could, should or would need, everything we might IMAGINE we would need and all those weird things (“Honey, do you have a lighter in there?”) you can’t even imagine you’d ever need.

Kind of like your basic “Let’s Make a Deal” bag, you know?

I mean, how many people actually HAVE a Sackajaweewa quarter and how many actually have it ON them at the precise moment their boyfriend’s mother wants it to complete her state quarter collection?

You guessed it…ME!

So here is a list of what I carry in the diaper bag for my 21 year old son who, while very high functioning, has less regard for his personal hygiene or the memory to remember to bring his batting gloves to baseball practice.

  1. antiperspirant – and not just ANY kind.  No I go for the rad, Right Guard, kills anything germy or gross smelling on contact, gel variety.  Believe me, this is a 21 year old’s diaper bag essential.  I should mention I also carry same in the glove box and in my purse.  Call it self defense.  Some people carry pepper spray?  I carry Right Guard.  Don’t judge me.
  2. baby wipes – I mean, duh.  You know someone is going to spill something on the seat of the car and believe it or not, baby wipes are REALLY good at getting that and other unidentifiable substances out of car upholstery, clothing AND neckties.
  3. hand sanitizer.  This is double or even triple duty.  Not only can it make me feel less icky about the possibility that my kid used a public toilet, touched everything in there and didn’t see the sinks on the way out…but, should be come near me and reek of ripe burrito to high heavens, this on a baby wipe will KILL anything and refresh the pits.  Then a fresh application of the Right Guard, waiting until it dries, followed by ANOTHER backup application has the back of ANY lengthy cartrip.  I also occasionally wonder if it could save ME if I started licking it off my hands but I decided that wasn’t the best idea I ever had.  Bring on the baby bottles of wine!
  4. Clean t-shirt.  I found this to be essential after we were on the Ocean City Boardwalk and the scream echoed “I have BIRD POOP on my SHOULDER!!!!!!”  Now I am prepared with everything listed above AND a clean t-shirt.
  5. plastic zip bags.  These are extremely useful to organize the diaper bag and to contain those items that might pollute the other things if they get opened – like the Right Guard and hand sanitizer.  If you store your baby wipes in one, it can also keep them from turning to paper towels on your trip.  They are also good to keep books, snacks, well, just about everything you can think of , in.  I also like to keep them arranged by “grab a bag for all your needs” – Right Guard, small zip bag of wipes, small hand sanitizer grouped together.  That way I grab for one bag to neutralize a situation (pun fully intended!) instead of scrounging for each item and then shaking the wipes out of their original pack.
  6. Pens, styluses (styli?), small screwdrivers, nosepads for glasses, screws for glasses, a microfiber glass wipe and crayons (because you never know) all packed into their own bag.
  7. Contact lens case, glasses, sunglasses, contact solution and drops all in THEIR own bag.
  8. Sock yarn and knitting needles in a yarn bag – I love these.  They are little nylon bags you can store your little project in and even carry around your neck to knit while you walk if you are so coordinated.  I’m not but hey, I am a knitting fashionista so while I can’t do it myself…I can look like I can!
  9. For some reason I carry coins and cash from other countries.  Weird but I do.  Usually it’s because they are in my other things (like bookmarks in books or just stuck in my wristlet) and I have been too lazy to take them out.  But…as you can see from the example above…a Sackajaweewha quarter can make an old lady’s week complete!
  10. Nail polish and nail polish remover wipes.  (Boredom…take that!)
  11. Nintendo DS and games.  Yeah sure, we all have our iPhones and iPods now but occasionally while battery charging or just for a change, someone wants to go old skool and I AM READY!
  12. Snack crackers, mints and chewing gum.  While we don’t eat this stuff every day…wouldn’t you know someone in the car cannot live without it at that VERY MOMENT???
  13. Eos lip balm.  I’ve said it before…I love these.  They are cute.  That is all.
  14. Sunscreen.  Do I need to say anything else when I have a child with white skin and blond hair?  No.  But even if you don’t have a child with white skin and blond hair, take it anyway.  I get at least 60 SPF.  Your mileage may vary.
  15. Band aids, spray neosporin,  and methialate (evil, evil laugh).  I thought of all of this this past weekend at the baseball game.  The little girl in front of me in the stands fell and scraped her knee.  Had I had my SUPER MOMMY diaper bag with me, I could have flown to the rescue with soothing neosporin spray and dapper Hello Kitty bandaids.

Of course there’s a lot more in there.  My Buddhist prayer beads, extra earrings that might strike my fancy, tylenol, advil, tissues, packets of paper towels, books I am might be will never be reading, Neutrogena hand lotion and zit lotion, hair brushes, makeup bag (I mean come on…I AM a girl), maybe some essential oil that I smell to keep me from committing some kind of Mommy Homicide – you know, Life on the Streets?  But whatever, I make my diaper bag my own and have plenty in there not only to protect but to also serve.  I can handle anything from a boy in need of extreme deodorizing all the way to bird poop accidents.

Now tell me, WHAT’S IN YOUR DIAPER BAG???