Childhood Memories

I know we are all used to those posts filled with bright green grass, sapphire green pools and brightly colored hair ribbons hanging off perfectly curled ponytails swinging behind the gossamer curtains of childhood memories mixing with the smells of vanilla and strawberry and all those special things which take those writers back to perfect childhoods.

And those are very good posts…they’re just not MY posts and, really, they never WILL be MY posts.

I thought a lot about it today. What is my favorite childhood memory? Do I even have one? Do I have ANY happy memory?

While it’s well-known I don’t have a lot of memories of the years between 4th and 12th grade (and thank Gd that my best friend Christine keeps those memories very much alive for my son Evan for me…and keeps them for me when I am ready for them) – I have memories of my young childhood. I remember where we lived, where I went to school, the kind of saddle shoes I wore in third grade (black and white as opposed to brown and tan which is the kind I REALLY wanted), my brownie uniform that I wore every week to school and then walked to the Methodist Church in town for our meetings.

I remember the house we lived in, the year we lived with my grandparents and everyone forgot my birthday and then got me an old applesauce cake from the Thrift Store after we had supper. I hate applesauce cake to this day.

I remember the year I had a skating party for my birthday and I got beaten afterward. Beatings on my birthday were kind of expected. That particularly birthday I was also raped by an older boy who was visiting us. Later I was beaten for that too because, of course, it has to be a just-turned-8 year old little girl’s fault right?

And along with that I remember the same house and brutal beatings, the blood and the police who came as the sun rose and the broken glass and the screams going unanswered. Cries for help echoing in the subdivision in which we lived, blood curdling screams as faces were broken, glass was shattered and little girls were scared into silence.

Yes, there were happy times I suppose. I have seen some pictures that other people have. I don’t have any. My sister took all the pictures long ago and never gave any to me. She says I don’t belong to her family and so I don’t deserve any.

Whatever.

Maybe if I had happy pictures I’d convince myself it was all happy even though in my heart I know it really wasn’t. But I am also not so jaded as to think it was all bad. I know that everything is not so black and white.

But could I pick out a sunshine and rainbow moment of happiness that was all encompassing that involved time with my immediate family? Let me just say I qualify this only because I did spend so many happy moments with my grandmother and it was only with her that I can say I ever felt truly safe and happy. So my question then becomes and the question I have been framing is…

Do I have a happiest moment from the childhood I spent with my mom, dad and sister?

Sadly, the answer is no. I can’t for the life of me really think of one. And yet, there were opportunities. The Harlem Globetrotters Game, Disney World, so many opportunities.

But each opportunity that I think of was tainted either by a violent fight or by some other situation that had no business happening.

I don’t really know how to say this other than to just come out and say it. I can allude to it and it’s hard to just say. I can’t freely talk about it yet but if you want to know why I have no favorite childhood memory, this is why – being molested can ruin everything that ever comes after it. No matter what that “everything” is…nothing will ever be happy again no matter how happy it seems.

Remember that.

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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.

 

 

I Have a Goal – Please Sponsor Me for The Pittsburgh Marathon Miracle League Team

My new goal is to walk a 5k.  I am not the fastest walker althogh I admit I am proud that I can walk faster than I ever did while on a treadmill.  But…I CAN walk 5k every day so why not enter a walk, get a number and do it “professionally”?

It’s hard for me to anticipate and schedule simply because I am not “master of my own domain” because I can’t drive but it is a goal of mine and one that motivates me every morning to get out of bed and get moving.

The biggest one on my horizon is the Pittsburgh Marathon.  Evan’s Miracle League baseball league, Caseys Clubhouse,  has formed a team to walk/run which will raise money for the facilities that the league uses and believe me, they are stellar.  How could I not support a league that is inclusive to all kids with challenges and gives them a chance to be baseball stars for a season or two every year?  So yeah, I’m walking.

If you’d like to sponsor me for a buck or two, go here to donate  –  I’d really appreciate it!  I have to raise $150 (or donate it myself) to participate and I figured yeah, I could raise that, so I signed up.  So…please spread the word if you can.  There are lots of kids who depend on the Miracle Leage to bring baseball into their lives, and I know, for me at least, as I watch them play, I sit there and think, what if?  What if they could play with such joy with typical kids on school teams?  What if typical kids could experience this joy when THEY play baseball or other sports?  Just…what if?  What if we all could experience this abandonment and this joy in everything we do?

Think about it too.  What if.

 

Today

Today is a day where I feel really good and am getting a lot accomplished.  So far:

  • I have slept until 6:00AM (not a small feat at all given MY track record of being up at 4am which, to be honest, I kind of felt cheated out of when I lost some of my “quiet time)
  • Done a load of dishes (the kitchen threw up on itself this weekend…I didn’t feel good Saturday or yesterday so there was a LOT of catchup since I forbid Scott to do them)
  • I vacuumed the living room AND the dining room
  • I got the trash together for The Boy to remove
  • I watched countless episodes of Say Yes To The Dress and cleaned up the DVR
  • I combed my hair
  • I watched Morning Express a gazillion times
  • I read an article about the Israeli offensive, “Protective Edge”
  • I read an article about the migrant crisis down south
  • I took my meds on time
  • I dusted the living room, straightened up my “nest” area and have two sleeping dogs to show for it
  • I made french toast
  • I have eaten 5 slices of provolone cheese
  • I drank two steaming mugs of tea and learned there is a HUGE difference between Yorkshire Gold and your top shelf store bought US variety (sadly)
  • I watched a preview for “Tammy”
  • I washed my bear, Edward’s, hair after a BAD cedarwood essential oil mishap
  • I ordered Evan a new ACCESS card (don’t even ask…his was thrown away)
  • I listed to Evan tell the dogs a story before he left with his “colleague” (read: aide)
  • I watched the rain
  • I checked out how my shamrock plants are doing

Not bad for 11:30 AM huh?

Life As A Headcase: Doctor, Doctor…Breaking Up Is NOT So Hard To Do

This is a post about me and my doctor.  However, as weird as this may be it starts off with the story of my migraines but bear with me, we WILL get to the actual message of this blog…just hang in there and trust me.

Besides everything else that is going on with me, I also suffer from Chronic Migraines.  I don’t know why this is…does anyone ever know what causes a migraine?  Well, seriously, I guess some people can tell you what triggers theirs but I am not so sure anyone really knows what causes them.

Or even how they feel or how they present.

My migraines happen about 4 days a week.  My neuro was very conservative
and gave me 15 Fioricet pills a month.  That’s one every two days or estimating a month containing just 15 migraines.  With 4 headache days a week, my month has about 20 migraines.  This caused me to hoard meds because I was always so afraid I’d run out JUST when I needed it.  He also prescribed compazine for the accompanying nausea.

Still with me, because now we are at the heart of the matter…I told
you we’d get there right?

Now here comes the rant (because you knew there WAS one right?)  I had to
choose a primary care doctor so I picked one I didn’t know simply because all the ones I DID know either didn’t take my insurance or weren’t taking new patients.  So I picked a guy I didn’t know but who was in a practice and could see me in a closeby office on Wednesdays (the day I can get a ride.)

Well, yesterday I saw him.  While I was in the hospital, my treating psychiatrists and doctors (yes, GPs) prescribed a couple new things (Abilify, Remeron) and changed a few things (Klonopin to Xanax and upped the Fioricet/Compazine cocktail to one time a day when needed.)
So here I am, going to see Dr. Pompous Ass.  He didn’t get this name until yesterday but boy, he earned it.  I get why he said what he did by the way.  My rant is more about his attitude.  Dick.

Anyway, I gave his nurse all my paperwork with all my new meds.  Dr. PA walks in and says, “I don’t want to deal with all of your meds.  I only want to deal with your regular meds.  Your shrink can deal with your happy pills.”  Then he started listing them.

After feeling like the biggest hypochondriac EVAH or at least a simulated medicine cabinet for the entire Israeli army, he concludes he won’t deal with my Lamictal, Compazine, Fioricet, or Remeron.
Well, for your information, Dr. Pompous Ass, the Lamictal is for seizures, the Compazine/Fioricet cocktail is for unrelenting headaches that I actually came to YOU for several months ago despite the fact my neuro had at ONE time prescribed the combo for a post lumbar headache I got.  And…the Remeron, it’s not for depression, you ass, like I told you, and like I have asked you for for months, it’s prescribed so I can sleep longer than 2 hours at a time.

Idiot.

I am not even sure he put these back on the list but he treated me like I was a head case (okay, I am but I don’t need to be treated like one) and was actually rude.  Scott was there and he thought the dr. was a pompous ass too.

I mean I get why he’d want my shrink to handle the cocktail of happy meds I am
on (I counted, I am on four altogether so its not like I am on some ungodly number) and that was fine.  I am NOT fine that he won’t deal with the others so…

We broke up.

I haven’t told him yet since I have to see my new doctor first and that won’t be until August 27.

Don’t burn the bridge that renews your meds, right?

On August 27, Evan and I are changing to a really nice doctor who is a woman
(yeah!) and who also has a specialization in pediatrics as well as family meds.  This should be really good for Evan since she’ll be able to understand the autism and how that affects him.  I think that will be a win win for him and for me.  I am not sure how she’ll handle my head case but I am confident that it HAS to be better than what I am getting now and even if it’s the same…I KNOW it can’t get worse.

The whole thing pisses me off but I don’t have a great rapport OR history with Dr. Pompous Ass so changing now is the right time.  Also, this doctor is affiliated with the hospital I go to and I plan to hook her up with my shrink with a release so they can share information.  As long as she deals with all of my OTHER meds I have NO issue at all with her passing the pipe of my happy meds to my shrink.

I just want what I need and what has been prescribed to be respected and
handled properly.  I want to be respected and treated with dignity and not treated like I am asking for something that I am not actually holding paperwork to show you it has been prescribed for me.

Let’s hope this works.

Life As A Headcase: Out of the Darkness

I am really sorry that my last post scared people (I have to admit, I was pretty scared too!) but I appreciate the concern you all showed. Yes, it WAS a bad situation but not to worry…I have very qualified and competent professionals who care and who DID care for and about me.  I have collected the very best Circle of Trust around me and they lifted me up through the terrible time I went through.

Yes, if you feel as low as I did…call for help.  Call your friend, your bestie, your mom…your therapist.  Call 911.  Call a helpline.  Whatever you do, call.  I probably should have done that and believe me, it’s in my speed dial now.  All of my circle is in my speed dial.  I only have to hit it.  Someone will answer to help.

It would have helped.

In the long run though, I am better than ever.  I feel confident and empowered.
My meds are JUST right which hasn’t been the case for TOO long as I switched between psychiatrists – my latest waiting 12 weeks between dosage changes and med changes and that was too long.  If that happens again, I have the tools to know what to do.  I won’t like losing my therapist but then again, I don’t want to lose me either.

For the first time ever I can tell you, I love this girl.  And she means the world to me.  And I will do what I have to do to keep her safe, empowered, happy and protected.  Go into debt, act silly, whatever.  Her happiness is my goal. So don’t worry, I’m back. I hope you’ll stay with me.  As I said to my therapist, Shrinkette, I promise I will
ask for help WAY before I need it.

To paraphrase one of my favorite Ghostbusters, Winston Zeddemore, I have the tools and now I have the talent.

I journal OFFLINE and that journal is just between me and my Maker.  I have a Circle of Trust and have taken GREAT measures to emulate my Howard-Hughes-like son who is obsessed with privacy as far as my facebook is concerned.

It took a long time to decide if I could continue my blog but I think it’s important for many people and in many ways.  Maybe it IS a freak show that folks like to see.  But maybe someone has BPD too and maybe some of the things I have said and plan to say will help.

I am here to be helpful.  But the best part for me is that I AM HERE.

 

This post has also been crossposted on my blog located at BlogHer.com.

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.