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bracing, embracing

It’s been a great summer with Jonah – he was mostly happy, lovey, and good-natured.  Predictable in the best way, and I swear he grew 6 inches since last year — my height (5’7″) at least, when he’s not in his typical slouch.  He went swimming, enjoyed campus walks at school, and his visits with us were awesome –well, at least from my perspective.

Our summer routine:  my mom and I drive down early every Sunday morning, and as always she stays back at Andy’s apartment while Andy and I pick up Jonah at his residence.  About 80% of the time, he’s already at the door, looking through its window for daddy – because it is daddy he looks for.  Andy picks Jonah up for visits a few times a week, and Jonah adores his father.  So as soon as we enter the code and open the door, Jonah walks out immediately.  I don’t take any of this personally.  Whenever I’m not there, he asks for mama, and I know he loves me too.  It’s all just part of how he rolls.

Usually Andy takes Boo to the car while I stay back to sign him out, talk to the caregiver staff, gather his coat or other items, and grab his meds for the day.  When I return to the car Andy’s just putting Jonah in his harness and getting him settled in the back seat behind mama.

Jonah asks for radio and if the song is not what he wants he’ll say other radio – and if it’s not loud enough, he’ll say on which is his way of asking us to turn it up. On! he’ll repeat until it’s either loud enough for his satisfaction or as loud as we’ll let him have it.  Then we drive to either Dunkin’ Donuts or Stewart’s and procure a jelly or chocolate donut, based on Jonah’s caprice.   We head back to the apartment as Jonah eats his treat.  I hand him a wipe and he cleans his own hands and face, then hands the wipe back to me.  Sometimes he asks for kiss hand and gladly I oblige.

At the apartment he confirms Grandma is there and will sometimes acknowledge her, usually accepting a hug or kiss, then heading for the fridge.

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There he pulls out random things he thinks he wants and we help set him up with the burger and fries grandma always brings.  Sometimes he asks for Jungle Book or Oompa Oompa,  his attention span varying in length but always longer than it used to be.  Sometimes he asks for train on computer and wants to choose his own videos, on as loud a volume we’ll allow.  He still, on occasion, enjoys his bathtub brunch.

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Always after these activities and sometimes in lieu of them, he disappears into Andy’s bedroom to get in and under the covers.  I ask “can mama lie with you?” and he always says yes.  So I take off my shoes, make sure his are off, and get in with him.  Usually he giggles: “And the boobie,” he says softly, turning to try to reach down my shirt.  I gently move his arm and he giggles again but stays still.  And after only one redirection, lately, he keeps his hands to himself, turns away from me, and pulls both covers and pillow over his head; I curl into him and rub his shoulders or scratch his back.  Usually we both fall asleep for an hour or so like this.

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I sometimes hear my mother and Andy talking.  They argue politics or talk about Boo.  Andy got rid of TV and my mom can’t have her Fox News anymore, so she reads a newspaper or book.

Like I said, visits this summer were awesome for me.  Andy doesn’t mind if I take a nap with Boo, but poor grandma is left to her own devices.  “Lie down with us,” I tell her, and she could, but she doesn’t want to.  Stretched out on the bed, you can see just how long and lanky he’s gotten.

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Sometimes my mom gets sad about Jonah napping during visits, but I remind her it’s a hell of a lot better than the stretch of time when Jonah refused to get out of the car at all – or, worse, when he was attacking us left and right.  At least he comes in the apartment, even if it’s only to nosh and nap.  It’s more than good enough for me.  My mom is getting older, though, and she tires easily.  It’s a lot for her to drive down.  Lately I’ve been doing the driving, both ways, in her car.  And if I can’t visit for whatever the reason, she hasn’t been going either.

It’s hard on her, and on my dad too, I’m sure.  Jonah’s the only grandchild they’ve got, and they’re surrounded by friends, family –everyone, really, all talking about their grandchildren.  Photos and stories of them at the beach, in a play, on vacation, at graduation.  My parents wanted that too.  They love Jonah very much but I’m sure they grieve the grandchild(ren) they never had.

Because Jonah is 15 now, we’re starting the process of transitioning him to an adult program. He can stay at Anderson until he is 21, but before that we need to identify the best, most appropriate housing for Jonah.  So I went to a required Front Door orientation about a month ago.  Mostly they talked about very basic stuff – what it means to be eligible, how to prove eligibility, how to access services – things we plugged into years ago.  Because it’s an adult service, though, some of the details will change.  Instead of an Individualized Educational Plan (IEP), for example, he’ll have an Individualized Service Plan (ISP).

And so here we go.  So far Andy and I have only decided that we will choose the best place we can, whether it’s near Albany where he once lived with us, near Rhinebeck where he lives now, or somewhere in between.  Aside from that, we’ll cross bridges and make decisions as we come to them.  It’s a 6-year transition for a reason; the system operates slowly, lists are long, and Jonah may change and grow beyond what we anticipate.  If we had to make such a decision today, it might be very different from one we’d make 6 years from now.  I guess we need to decipher the most likely trajectory and go from there.  We really are at the very beginning of the whole process.

To be honest, I don’t like thinking about it.  It would be easy to worry, to waste time imagining scenarios and outcomes, but what good would it do?  Best to educate ourselves about options and forge ahead.

But here comes Halloween time, and for the past two years this has meant Jonah’s behaviors get worse and he becomes very aggressive.  Last year he was so violent, he spent Halloween in the hospital.  And sure enough, it seems we’re in for it again.  Andy says not to worry, that Jonah continues to be good for him and on our visits, and he’s right.  But last week I got the dreaded email, on three different occasions, detailing dates and times during which Jonah needed take-down interventions.

I can’t even muster the hope that it won’t be another season of helplessness in the face of whatever’s making Jonah’s pendulum swing yet again.  I have to wonder if he has Seasonal Affective Disorder (SAD). He does have crying jags now and again that seem to have no cause.  I think I have SAD too, or maybe it’s just a reaction to Boo’s uptick in behaviors, but either way I face depression in the fall and winter.

My solution this year is to schedule more things with friends and force myself out of the house.  Almost always I end up enjoying myself, and getting out is healthier for my head.  It’s way too easy for me to “hermitize,” as I call it, staying inside virtually all the time unless I go to work or visit Boo.  Amazon.com and grocery delivery make it that much easier to stay in.  It’s no good for me to sit and dwell or go numb and listless.

As a result, I’ve spent more time recently with my sister Barbara (it still feels so strange to say my sister) or my friends.  I went to a beautiful mountain Oktoberfest with an old college roommate, drove over to friend KP’s house for food & a fire, that kind of thing.  It isn’t easy, honestly, when home feels so comfortable and the world seems full of obstacles and assholes.  This Saturday night I’m even joining a bunch of friends on an evening Halloween cruise with dinner and dancing (dear God and little baby Jason help me).  I’m going to fight this SAD if it kills me, both on my own behalf and on Jonah’s too.  I’ve been talking with his doctor and behavioral staff and they are raising his dose of Prozac a bit.  We want Boo to be happy.

I’m bracing for the storm that might blast us for a third year, but also embracing the good days, and feeling very grateful for every last one we get.

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There’s more to tell and it would be easier if I’d write here more regularly, so I’ll work on that too.  I just found more siblings – a younger half-brother and sister on my birth father’s side.  They didn’t know I existed, which is a whole lot different from finding my birth mother’s daughter, Barbara, who had been looking for me my whole life.

My new brother and sister both seem interested in at least emailing, which is more than I’d expected.   Given the situation, I won’t mention names or post pics.  I was born just days after our father married their mother, which doesn’t sound very good.  The last thing I want is to cause a rift in their parents’ long and happy marriage, so I’m going to let my new siblings decide how to handle what must be very shocking news.

Who’d have thought this only child would end up with so many sisters and brothers?  I wonder if there could be more even I don’t know.  Life throws curve balls.  I’m as ready for them as I could be, I reckon.

Here’s to a happy Halloween for Boo, and all of you!  I’ll keep you posted on that storm, if it lands…

ascension

I’m not sure why this video is so huge and I’m not able to shrink it without researching more, but for now I want to share an update about Jonah, and this video is the best way to show so many things…

…like coming inside Andy’s apartment again on our visits, often straight from Anderson with not even one loop first – to rummage through the cabinets and refrigerator for food, asking for one thing after the next…

…and sitting down on the floor in the living room with his fidget cube to watch Disney’s original Jungle Book, his current favorite movie.  With an attention span, quiet hands, calm body, and a happy face.  It’s been a great few months for him.

And afterwards, to take my hand and ask “tickle?” – which means he wants mama to lie down with him on Andy’s big blue bed.  And so we do, he bounding onto the bed, scrambling under the covers.  “Blanket?” he asks as I settle next to him.  And so I stretch both blanket and sheet up to his neck, and he pulls a pillow to cover his head, and he turns to face me so I can just barely see him smiling beneath the pillow.  Then he says “scratch?” and I massage and scratch his shoulders and back.  He sometimes giggles, but usually calms quickly and often even falls asleep.

This is my new favorite time with Boo, for I haven’t been able to lie next to him like this in nearly 6 years, and it is precious to me.  I feel comfortable and safe in his presence again; he hasn’t aggressed toward me in what seems like a year.  I’m not here to declare he’ll never do it again, for he’s still got his bad days and the occasional take-down and school or in his residence.  For the most part, though, it’s an ascension – from him demanding car ride after car ride, refusing to go into Andy’s apartment, attacking us in the car, all of it.

The months have stretched out quickly and I haven’t meant to let the blog go like this.  No news here is usually good news, but I’ll always come back with an update.  I’ve got more to say about my birth family, particularly my new big sister, who is 9 years older than me and just like me in so many weird ways.  We even dress alike.  I’m so grateful I found her!

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And of course, new pics of Boo:

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Happy Summertime, my peeps!  We’ll be back…

funkytown

And so the child who once wouldn’t wear a hat or a hood or a cap, no matter what the circumstance, is now the teenager who wears his hood up and tied securely around his face.  I have several photos of him, several weeks in a row, sitting in the back on car ride (he hasn’t been coming in to Andy’s apartment for his visits lately).  In each photo he’s got the blue coat on with its hood up.  Last Sunday while parked in Andy’s driveway, Jonah declared blue shirt on?  – so Andy went inside and changed into one of many blue shirts he keeps in a special place for just such a request.  Thus appropriately garbed, he got back in the car and prepared for another ride.

My mother, who stays back at the apartment for these rides, visits Jonah in the car when we come back and park after each loop.  Nearly always she has a cheeseburger and fries, and this week she’d brought him 4 Thin Mint Girl Scout cookies as well.  Jonah has been happy, silly, all smiles and loving his rides, rocking in his seat to hip-hop and Top 40, wanting it as loud as we’ll allow.  On?  On?!  (It means louder, please in Jonahspeak). There is a CD of dance music I made for him more than ten years ago now, and he asks for it by requesting Mama CD?  Week after week, once this particular CD is in, he requests 3 specific numbers of song tracks and then says all done mama CD.

This time, however, we pulled into the driveway during the 3rd song – and, distracted by grandma and cheeseburger, Jonah wasn’t on top of his DJ game so the CD continued to play.  I didn’t know he could even see the track numbers on the dashboard CD display, but when Andy got back in the car for a second loop, Jonah piped up: 13?  

Andy went to track 13, the song Funkytown came on, and Jonah wanted it louder right away:  On?  When it was over he said 13? again.  And again, and then once more, before deciding he’d had enough talkin’ bout moo-ooo-vin’ and wanted some radio.  Last weekend I was fighting off a migraine and had to cut my visit one loop short because I couldn’t take another song.

Hopefully, with the coming of the springtime we’ll get him out of the car and into the apartment or over to the park, even.  For now we’re all just collectively grateful he’s been good.  His move to the new residence seems to have coincided with the good, though I hate to play the cause and effect game, as it proves faulty at least some of the time.

Grateful are we, as always, to the caregivers at his residence and school.  Last week I walked down to the Capitol and joined hundreds of other parents, care workers, and clients for the Be Fair to Direct Care rally.  We are asking Governor Cuomo to include at least 45 million dollars in the budget for an increase in pay for direct care workers throughout New York State.  Anderson parents were asked to bring a photo of our child, so I came with Jonah’s picture and cheered with the others when the Governor himself, in a rare personal appearance, came out to address the crowd and promise he wouldn’t sign the budget without the requested money in it.

Direct care workers deserve fair pay – excellent pay, even – for they protect, feed, clean, play with, and comfort our kids.  They deal with all manner of random issues working with them – things that are frightening, or gross, or just plain exhausting.

I was proud and honored to be a part of this effort on their behalf.

P.S.  Yes, I changed the name of the blog.  It feels right to do it now, and I like it better.  Until next time…

Jonah and I say thank you to all caregivers everywhere – and Happy Spring to you all!

fifteen

Jonah’s 15th birthday was Tuesday, March 7th.  He did really well at school – they had a little party for him, he had a big ice cream cake at his residence, and in general he’s been better behaviorally again.  I’ve been depressed, and off-the-charts anxious, and am figuring out new doctors and medications – hence my infrequent blog posts.  I don’t want to complain and rave about myself but I’ve been isolating from people and sleeping too much, struggling to wait for the springtime, hoping it brings me peace with its sunshine and warmth.  I am grateful I have a good job working for an organization that helps empower disabled people, which is kind of perfect for me.

One thing Andy and I have to do now is begin the process of identifying our hopes and goals for Jonah’s future, including adult placement options.  It’s overwhelming to consider – seems every time I get accustomed to one part of this journey, another comes along and sweeps the rug right from under my already unsteady legs.  I have a name and number to call and get us started.  They recommend beginning the process at age 15, even though individuals at the Anderson Center for Autism do not “age out” until they turn 21.  There’s a lot to it – we need to get things in place with social services, disability, ensuring we have guardianship, setting up a special needs trust, and more.  And under this new administration I feel Jonah is less protected, his services jeopardized.

I hope I’m wrong.

I’ll be back as I can with updates, and photos, and to share more than I am able to lately.

Happy Birthday, Boo!

 

There are many roads converging for me, and Jonah, right now.  I’m not going to say a lot about Jonah just yet – there is an IEP meeting coming up and I’ll write more about him then.  Our visits have been good, and he hasn’t aggressed toward me in many months.  I’m really looking forward to seeing him tomorrow and giving him the cool t-shirt I bought him last week when I was in Phoenix for work.

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I guess I’ve been too overwhelmed to write – too overwhelmed, even, to really turn things over in my head.  How expert I am at being the wintertime hermit, staying in, sleeping more than I need to, seeking a comfortable numb from a sometimes crushing and ever-present anxiety.  I’m usually good, though, at turning my attention from that which frightens or floods my mind.  To be honest, for a while now I’ve kind of kept my head in the sand, ostrich-ing my way beneath a lot of this life.

But recent events are taking me somewhere new now, shaking me awake from the slumber.

You want me to get to the point, probably, so here it is:

I found my birth family.

I’ve written a few times in this blog about being adopted.  (Each of those links will bring you to a random example).

So my co-worker, Erin, likes researching on Ancestry.com.  Back in the summer, when we’d first met, she was really interested in my somewhat half-hearted search to find birth relatives.  I presented her with all my non-identifying birth information and gave her the green light to start digging.  I’d already taken the DNA test through 23andme.com, so we had a second cousin to work from.  Then Erin said Ancestry.com had its own DNA test, so I took that one too.  Long story short, we found more relatives and Erin was able to nail down some family names (Hoffman, Moon, and Sweet) and some specific people.

My non-identifying birth information is so unique it wasn’t likely to be confused with another’s.  I have four siblings (the paperwork said “probably half siblings”).  The paperwork also included their sex, the year they were born, and the fact that the youngest boy (next to me) had died before I was born, cause unknown.

Twice Erin found women she thought might be my biological mother.  The first time, mid-summer, I wrote out a script for myself and when I called, no one answered, so I left a message.  The lady called me back and was very kind; she had no idea how we might be related but said she’d help me any way she could.  None of the information sounded familiar to her at all, though.  Erin and I determined we’d followed the wrong branch of a family tree.

The second time Erin found a potential match, back in early December,  it was a woman from the Sweet family.  I called her, using a script again and, like before, left a message.  This potential birth mother, however, never called me back.  We figured it was a dead end and Erin kept looking.

And then, one day in early January, Erin showed me an ad she’d found on adoption.com from another person in the Sweet family.  The woman who had placed the ad was looking for her sister, and said she had one brother and one sister, which matched my circumstances exactly.  She gave her sister’s estimated birth year as 1970 (I was born in September of 1969).  Then I saw the baby’s birth name:  Christina Marie Sweet.

My breath caught. My parents had told me that, at the time of my adoption, I was named Tina.  This was the detail, really, that made me confident it was not just another dead end.  “I’m the person she’s looking for,” I said.  “Me.  I think this is it.  You found them!”

And so Erin sat beside me as I called with my script.  Another answering machine, but halfway through my message a woman answered, her voice excited.  I explained again why I was calling and told her I thought I might be the sister she was looking for.  I mentioned that I had four half-siblings, one of whom had died before I was born.  Then she knew, and started to cry.  “I’ve been looking for you my whole life,” she told me.

With my boss’ kind permission I took 1/2 day off from work and drove out to meet her, only about 20 miles away.  After determining for certain that we were not mistaken, we talked and we laughed and she showed me all kinds of photos.  I think we look alike, though she is nearly 10 years older:

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We both love bohemian, hippie clothes.  We both love elves and don’t wear makeup.  We have so many of the same mannerisms.  We even both stand like a flamingo when we do dishes (something I had to have a photo of when I saw it).

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She is kind, and strong, and so happy to have found her “baby sister.”

There is a lot to tell, and more people to contact and see if they want to meet me or not.  I always assumed my birth family would want little or nothing to do with me – on the non-identifying birth info sheet it said I was the product of an affair and that my mother had reunited with her husband (apparently the father of all the other kids but me).  I envisioned a family repaired behind me, healed in my absence – maybe even because of my absence.  A single indiscretion on my mother’s part resulting in a surprise pregnancy and unwanted child – me.  They probably wouldn’t want a scar like that ripped open.

I was raised very much wanted and loved, by both of my parents as well as a big extended group of grandparents, aunts, uncles, and cousins, none ever treating me as anything but one of the family.  Maybe it’s for this reason that I never tried all that hard to find my birth family.  It always seemed there would only be rejection waiting for me, and though I told myself it wouldn’t matter, I’m also old enough to understand you never really know how things are going to hit you.

But I wanted a photo of my birth mother, if nothing else.  And I couldn’t stop thinking that maybe some of the siblings at least might want to meet me.  And now I have both of those things.  This is my mother’s wedding photo:

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I still have many unanswered questions.  It turns out the second woman I’d called in early December was not a dead end after all – she is my birth mother.  She just didn’t call me back.

My brother’s death, just weeks before my birth, was a tragic accident.  And my siblings’ childhoods were not idyllic.   But I’m not here to expose wrongdoings, make accusations, or reveal things the family has the right to keep private.

I’ve been invited into the life of a sister who has been looking for me – a sister who wants me for a sister.  It’s something I’ve never even really considered as a possibility. Whether or not I will have a relationship with my other half-siblings isn’t clear yet.  It is enough, for now, to have the one.

Mostly I have Erin to thank, for without her this family likely would have all gone undiscovered.  Now I know information that was unfairly kept from me my whole life.  Information that I (and, I believe, all adoptees) have the right to know.  Who I am and where I came from.  It matters.  My siblings were told they had a little sister and then that little sister never came home from the hospital.  It wasn’t fair to them, either.

And so, just like that, my life’s trajectory has changed and will never be the same again.   I get to rewrite the ending.  I’m grateful for the gift of it.

jonah’s move

Yesterday Jonah moved into his new residence at Anderson, one with kids a little more his age.  They’re really great about preparing the kids for changes by using social stories and acclimating them little by little to new environments.  Already this morning I’ve heard from both his new residence house manager and his behavioral specialist.

In part, here was some of what they reported to me:

Jonah was in his room and then came out for meds and snack which he did well with. He sat at the table and ate chips. Once he finished he paced around the dining room for a bit then went into the kitchen and tried several times to make himself a peanut butter and jelly sandwich. Staff continued to assure him that dinner was soon and he was compliant with putting the items away. Rodney then had him doing some cleaning tasks and he laughed and giggled as he sprayed the cleaning bottle on the table.

 He continued pacing about the house a bit and then eventually went into his room with the door open. After about 10 minutes I went in and he requested Adele and back scratches!!  He seemed calm and content.  When I left he was still in his room. 

That sounds good to me.  They suggested I get him an area rug for his room, but he’s all set with bedding and, thanks to my mom and dad, all the clothes, coats, and shoes he needs.  I guess he’s falling asleep in school today so maybe he didn’t sleep so well last night.  Either way, I’m happy to hear that he’s doing okay.  I’m so grateful to the peeps at Anderson – all of them, from the administrators to the teachers to the caregivers to the nursing folk.

I am much calmer than yesterday.  Sometimes things just aren’t supposed to happen; it’s hard to discern, sometimes, what to let go and what to pursue.  After making a bunch of phone calls yesterday about Jonah and hearing stories about other schools and possible scenarios, it started to feel like I need to back off and chill out.  Jonah is in a great place with wonderful people who care about him, and that’s more important to us than I can ever express.

In the grand scheme of things, we are lucky and blessed.  What you focus on expands, I always say, so now I’m choosing to focus on the best of what’s here and what’s possible.  I’m looking forward to seeing Boo’s new residence and getting him some things for his room – a soft rug or some big pillows.  I’m feeling okay.  We’re all going to make it through this, however we can.  Thanks again for your kind words and encouragement.  It means a lot!

Some better (happier) recent photos of Jonah:

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Deep breath.  Onward…

Some people I never see on my blog commented on that last entry, which was weird.  Then I talked to my friend K later in the day, and she told me it’s all posted over on Facebook.  I haven’t had an account there since December 31, 2015, so how is that possible?  I went over to check it out and sure enough, my page was re-activated, even though I didn’t do it.  I thought at first it was an auto-post because I’d published a new blog entry, but none of my other blog posts made it over there.

Did the ghost of FB re-open my account?  Was my account hacked?  At any rate, I logged in and DE-activated it again.

It probably looks like I went over there to throw a big bitch-fest and leave.  So be it. Whatever.  If anyone knows what might have happened, please let me know so it won’t happen again.  I don’t see myself coming back.

Thanks to everyone who commented on my last post, and for everyone who cares.   Jonah is moving to a new residence, maybe today.  They have been slowly acclimating him to the new place and I hope he does okay.  One of his favorite peeps at Anderson is the residence manager.

Fingers crossed.

JUST as I typed that, the new CSE Chairperson at the Albany City School District called me to say Kennedy Krieger is not an option because they are no longer approved by the state, even as an emergency inpatient on a short-term basis.  Then she starts rattling off a list of other schools – most of which I haven’t even heard of – to which referrals have been sent, she says, back in August.  She is going to e-mail me the details and other people I can contact, but she’s so new she has no idea why we weren’t notified of these referrals.  It was difficult to stay calm on the phone.  I’m angry that Jonah isn’t even able to be considered for KKI and we definitely don’t want him sent to another school that will be a lateral move, at best.

Can we just pay for KK ourselves?  I have no idea, or how much it would cost, and I’d better get back on the phone to find out as much as I can.

What the hell?!

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