Settling In

Up to this point, I have been rebuilding my own life from the ground up. Rebuilding inside and outside. Therapy has helped on the inside and for the outside I have acquired shoes and clothes and lots of books and yarn.

This week I have taken a new step in the rebuilding process.

I had some of my furniture still left in my old house. It hurts me so much to be there that I cry tears of such pain every time we have to go there. Scott and I had planned to get the boys to help and on Thursday this week, we would move my cherished furniture from my old house to my new house — the house Scott and I share.

I was entirely too upset to be a part of the “festivities” so I stayed home and worried myself into a migraine and upset stomach while the move was made but I was so happy when they arrived home and everything was brought inside.

We celebrated with pizza and donuts and by putting our bed together last night. We couldn’t get the box springs up the steps (they say that love grows best in small houses but come on!) but we still had the slats under the mattress so until we can get a set of separated box springs, it works.

In the meantime, there’s a lot more storage space which after rebuilding with clothes and shoes and books and yarn, I need a LOT of. AND there’s a lot of organizing, rearranging and homemaking to do.

And that, I think is the next step in my rebuilding. When I was out shopping last evening, I looked at tablecloths and bedspreads and dishtowels instead of clothes and cute socks. I think I am moving onto thinking of things around me and outside of myself.

I am moving onto making my house into my home and that’s a huge step forward for me…a long way from where I was two years ago and yet, a long way still from where I hope to be in two years.

There is a difference though that is the key. This time around I have dreams and I see myself in them.

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What Makes You Happy

It’s easy to write a blog post about those things that make me unhappy…and Lord knows I have written a lot of those lately.  But what about those things that make me happy?  I know it shouldn’t be that hard so why don’t I write more about them?  Tonight I plan to do just that.

Sometimes when I am in the abyss it’s hard to think of anything that would make me really HAPPY.  I mean what IS happiness anyway?  But the reality is I know what happiness is.  Happiness is beig with my son even when he’s rambing away for the gabillionth time about exacting revenge on the unsuspecting victim of the day as his alter ego, the Oera Ghost.  Happiness is looking at my two freaky dogs when they are sleeping and wanting to hug and kiss them.  Happiness is listening t o “I’m Just a Gigilo” at the end of my walk when I am on my way home.  Happiness is hugging Scott when he comes home from work.

See?  That’s not so hard.

Happiness is knowing Shabbat is right around the corner.  Happiness is being an Israeli citizen and aving had the greatest experience in my life of living in Jerusalem with my son.  Happiness is having a warm home and a soft bed and heat and air conditioning and a mixer to make cookies with.  Happiness is having running water.  Really.

Happiness is having a best friend who listens when the going gets rough and who isn’t afraid to say, hey, listen to ME when I get lost in myself.  Happiness is being safe.  Happiness is being loved.

There are so many things to be happy about.  Probably way more than there are to be sad or angry about but sometimes it seems that the bad things seem so enormous and overwhelming.  At least to me they can be consuming.

I hope that when I am down or sad or overwhelmed I’l remember to come back to this post or even just to my private journal and be happy in the moment because there are so many happys to put the bads in their place.

Introduction to Judaism

Tonight Scott and I start our Introduction to Judaism classes.  I have been through them before but this is his first time through.  They’ll go weekly through March and I am excited to see what he’ll think about them.

Mine were 12 years ago and I remember how they lit the fire of learning and the love of Judaism within me.  I really hope they will do the same for him but then I also have to remember that despite how much I want this, I also have to let this happen as it will happen and let Scott follow his own path.

What will happen for him will be between him and HasShem basically.

I had never considered how important it was for me for Scott to be Jewish until Rabbi Symons asked me the question and then I realized that yeah, it IS important.  I didn’t have the choice before and there were issues.  I converted halfway through and while during the conversion I didn’t think it was an issue I can tell you…it became one even though he did eventually convert.  There were many times it was a HUGE issue.

I am not saying it WON’T be an issue but I do know that it IS important to me that I marry a Jew and it means a lot to me that Scott is willing to explore that possibility for me and make that commitment.  It says a lot about how he feels about me and the respect he has for my values and my commitment to my own life and faith.

And that just makes me respect and love him more.

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.