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Posts Tagged ‘gratitude’

the big year ahead

Posted in Uncategorized, tagged , , , on December 20, 2022| 2 Comments »

This year’s Christmas card came out a little dark, but I love the pictures anyway:

Last week when I drove down to see Jonah, there was a mix-up at the Visitor’s Center and both rooms were occupied, so we made do by having our dinner in the 2nd floor conference room. Briana was there to help, and the room had napkins, chairs, a table, and my phone to provide the tunes – so we had everything we needed. This time Boo wanted to dance, and he pulled me up to bop around as he grinned and giggled. It’s always so awesome to see him happy. He must have said thank you 3 or 4 times – for handing him my phone, for giving him a drink, for opening the blue cheese container…and each time it feels like a precious thing. Spontaneous language of any kind is special, and I know it took a lot of work to teach him. After dinner we took a walk in the dark and cold, and I couldn’t help but wonder how much longer he’ll be at Anderson. On March 7th he’ll be 21, and he’ll graduate in June.

I’m told he’s on a special list for kids aging out who are not currently being considered by any agency, and there’s a meeting soon about that. Jonah can stay at Anderson if he needs to, and it looks like he will need to, at least for a while. As Jonah and kids like him get older, there will be fewer and fewer spots for adult housing and day programs. Openings are few and far between. I used to think I’d do a lot of research and then Andy and I would choose the best possible placement for Jonah, but it doesn’t work that way.

There’s a portion of the disability community who vehemently insist that all people with disabilities can and should live independently, in their own residence, in the community. I’m not sure if they simply refuse to acknowledge people like Jonah or if they really believe all necessary supports will be provided to enable someone like him to live at home. After all, it’s just me here. I’d need 3-4 strong DSPs (direct support professionals) in my home pretty much 24/7, and that’s not on the menu, even if I had a big enough house to hold them all. If I did, and if I could, I’d love to have Jonah living with me again. I’m amazed at how much it hurts sometimes, even after 11 years, to live apart from him. Mainly I want him to live as happy and fulfilled a life as possible.

I’ve joined the National Council on Severe Autism‘s National Grassroots Network (NGN). To quote NGN, “We exist to help ensure that policymakers tackle autism as an urgent national priority — and are fully informed about the realities of autism and challenges faced by families across the country. We in the NGN will operate in all 50 states and across all congressional districts to emphasize the needs of the rapidly growing population of children and adults who need continuous support, and often, specialized services.”  I’m thrilled and grateful to be a part of an organization that finally addresses the needs of individuals like Jonah.

You can see NCSA’s official positions on a variety of issues in its position statements covering topics such as guardianship, housing, language and more. I stand in agreement with them all.

For now we’ll move one step at a time into the future, thankful for Briana and the other DSPs and teachers at Anderson, who care for and teach Jonah every day.

Happy Holidays, everyone! I wish you all a blessed 2023 full of love and laughter.

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a hollow day

Posted in Anderson School, behavior, grandma, placement, tagged , , , , , , , on October 31, 2014| 1 Comment »

If I don’t write something today it will be the first blank month since I’ve started this blog.  I’ve got plenty to say but I don’t want to say it.  It’s that fantasy-land thinking – If I don’t put it down on record, it isn’t happening. 

Which is not to say that I am not incredibly grateful, somehow simultaneously with the strong compulsion to smash something and scream.  I am grateful for every day in this new life since I have decided to live on my own ~ and somehow found the truest love I’ve ever known within that solitude.

I am grateful for everything I have, all my family and friends, my dumb American material possessions, my shelter and my food…grateful for everything for which Jonah has been gifted – an incredible education, a safe place to live, teachers, caregivers, awesome staff, a safe and loving environment.  I am grateful.

In order to guard against complacency, I have made unusual life choices.  At first it was a game, just to see if I could make it to October 1st without turning my heat on.  Then I decided (in honor of Laura Ingalls Wilder and Dick Proenneke) to stop using lights as well.  I bought some soy-based candles and I bundle up, typing with fingerless gloves and pushing the idea of heat into November now.  I stopped using the dishwasher and I turned in my cable box.

Last night I turned on the TV to watch It’s the Great Pumpkin, Charlie Brown (on one of my three channels) ~ I’d forgotten how maddening commercials are.  And so I watch movies instead.  I still do laundry and shower in hot water, which is more than either Dick or Laura had, but I’m trying to eat by going to the store only once a month or so for fruit, vegetables, half and half, coffee, butter, and milk.  I’m eating out of my ridiculously full cabinets.

Now I’m thinking seriously of going all winter this way.  I live alone, so there is no one to hurt or annoy.  I wonder how long I can last; I’m a skinny, cold little thing so I won’t be arrogant enough to say I can do it for certain.  I’ve got my heat set at 45 so my pipes won’t freeze and neither will I.  It will be interesting to see what I’ll owe on my next National Grid bill.

I know I’m a weirdo.  One of my relative’s favorite mantras to me is Why can’t you just be normal?

Because normal is a dryer setting.

It’s the best answer I’ve got.  So why the hollow day?  Sigh…

Jonah has been aggressing more and more often.  Three incidents requiring two people take-downs just this week.  There is hope in that the incidents, which before came with no rhyme or reason, are now reactive to things like fire drills or too-crowded rooms with over-input of sensory activity (lights and sounds and noise and chaos, like last night’s Halloween party).

I don’t even know if I’ll get a photo of him in his costume (which was a aqua-man looking thing I found in WalMart; I hate going there).  I guess he wore it okay.  They told me he’d like to be a train conductor (believe you me he did not ask to be a train conductor, because he can’t make those kind of cognitive leaps).  It makes sense, though, the way my Boo loves trains.  But train conductor costumes top out at size 8-10, and Jonah is a 10-12 now.  Almost everything he’d wear, understand, or want to be comes in toddler sizes only.  I wish I had the know-how to put together a Halloween store for kids with autism and other disabilities.

And now it’s Halloween.  I have always loved Halloween and dressed up in costume (even with nowhere to go) right up until this year, when being alone seems to have taken the wind out of my sails.  I compare it to the first day of school or the school picture-sharing day, when parents show off photos and memories and happy shit about their adorable kid in his or her outfit/ Halloween costume, having more fun maybe than any other day of the year.

I hate it, and I hate that I hate it.

But I am not an angel and I am not a saint and I have these stupid, useless feelings of envy for these everyday joys denied Jonah, Andy, and me.  Andy is waaaaay better than me at not caring.

Yes, there are advantages.  I don’t have to go out in the cold with my Boo and bring him from house to house, trying to explain to people why he won’t wear his costume or say “trick or treat” — though, thanks to the Anderson School for Autism, he does now wear a costume, and they do take him trick or treating, and he does manage a discernible “trick or treat.”  Irony.

Then there are our visits.  When Grandma and Andy and I show up at Jonah’s house on his campus to pick him up, he is always waiting at the front door.

jonahinthewindow

He flies into his daddy’s arms for a long hug, then tells grandma what he knows she’s brought for lunch, and with nary a glance at me he runs off to the car.  Then he’ll say mama in the backseat? while shoving me as far away from him as possible.

I understand Jonah is daddy’s boy and I am glad of it.  And I do get hugs and kisses, sometimes, once we are at Andy’s apartment (another thing I am grateful for, that Andy and I get along well enough to share Jonah visits).  But he clearly is unattached to mama now, and there isn’t anything I can do but sell my home and move closer to him, to a small apartment, to spend more time with my Boo.  It is something I am considering – but I can’t spend time with him alone and would need to find someone to help me.

My boyfriend Tim could do it.  He is a direct care worker for individuals with autism and can do everything from restraining to administering meds when someone under his care is having a seizure, gently holding them and keeping them safe and as comfortable as possible.  Tim is a gentle, loving, caring soul ~ he has met Jonah once, got along well with Andy, and was unfazed when Jonah had an aggression…standing at the ready to help but at the same time unobtrusive and friendly.

But he lives in Bloomington, Indiana…and has his own three children.  I am here, and have Jonah.  We do our level best to see one another once a month and are so far successful, for we do yearn for the home of being together.  Next weekend we are meeting in Pittsburgh; it is a halfway point for us — and we’ve found a nice B&B and an aviary museum and science museum we’re interested in visiting, as well as nature trails near a lake and a river.   This weekend I will go see Boo both weekend days to make up for the missed visit the following week.

At any rate that’s what happening.  I am overjoyed and frustrated and ecstatic and sad in turns, but will meditate today and throw myself into work with redoubled effort, for after November 1 comes our fundraising push and media-story garnering at Modest Needs, where I work.  I have sought a second, part-time job, wuth no luck so far.

If you are interested in Modest Needs, a BBB top-rated nonprofit, please consider stopping by our website and donating even a dollar or two to help those living on the edge of poverty (but who make barely too much for public assistance) to give them a hand-UP through a hard month, or to provide their kids with holiday gifts when their families meet with unexpected expenses, or to help veterans return home and re-acclimate to society with rent help or assistance to pay a medical bill, etc. while they wait for VA benefits.

I’m so proud and happy to work for these guys.  I was a donor for 8 years or so before I started working for them in May of 2013.

I am blessed.  Writing this all out allows me to feel it strongly, palpably, fully.

Finally,  here are some recent pictures:

mama and her j

Mama and Jonah

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Introspective Boo

Jonah, chugging his "app-oo ci-dah"

Jonah, chugging his “app-oo ci-dah”

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And one of my Tim and me, sharing time during a recent visit when he flew to see me.  I am a lucky woman indeed to have found such a love.

May all of you enjoy a very Happy Halloween and blessed Samhain!

 

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boo riddle-y

Posted in Uncategorized, tagged , , , , on September 26, 2013| 4 Comments »

Not writing here feels like holding my breath.

Jonah has been largely aggression-free for a while now.  I say “a while” because I don’t think of time in terms of hours days and years anymore….at least not in the way I used to.  Boo’s every moment is a possibility; his focus flits and alights in bat-like erratic patterns of flight.  He soars and crashes.  Sometimes, when he is soaring, I feel a superstition of sorts – as if not writing about him will protect him from the pendulum’s swing.

Boo ridlle-y.  On Saturday he laughed and spun, ate well, sang a little, watched train-on-TV, and rode happily in the car, rocking to his tunes (he enjoys Emancipation, daddy’s double album CD by Prince right now) and making funny, silly, happy faces:

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All I want is his happiness.  That’s really ,when you get right down to it, all I want.

I am grateful for it.  I take pictures of his happiness, over and over, to remind me it is there even when I cannot see it.  I am grateful today for so very many things.  Boo’s school & caregivers.  His daddy.

For the fact that I woke up free of pain and able to breathe and see and walk and write.  For the incredible freedom of working from home – to be able to write and make a good living of it.

And I am grateful for Boo’s right eye, for we were all wrong about the left.  He’s nearly blind in it — maybe he can see shapes but that’s about it.  He had cheated on the other test.  In almost every picture of him now you can tell his left eye isn’t quite right.  The amazing thing is Jonah seems not to mind so much.  I think maybe this is yet another blessing for those on the more severe side of autism:  Maybe these individuals have no expectations from life.  They just live it and react accordingly to stimuli, perhaps even instinctually, in whatever way they can in order to move through what must seem a very foreign world.  There is joy for them here, and there is sorrow, but it is not the same as ours and never will be.  Theirs is a pure innocence and a soul unsullied by envy, shame, jealousy, guilt, bitterness… so many wonderful things to be without.

I think maybe I need to try harder look at things from Boo’s perspective – to watch and listen and tune-in to him more, instead of being so reactive (something I’m almost body-trained to be from his aggressions).

I am looking forward to Saturday.  My hope is relentless, week after week, in the face of any possibility imaginable.  If that is the definition of crazy then there it is.  I can be that kind of crazy.  I can be anything I need to.  I am pliable, lithe.

Thank you is my prayer today.

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doctors to donuts

Posted in autism, doctor, glaucoma, haircut, singing, Uncategorized, uveitis, tagged , , , , , , , , on June 19, 2013| 7 Comments »

This has been an extraordinarily fantastic day.  My blog is usually so filled with frustration, sadness and despair – but not today.

First, it is a warm, slightly-breezy, summer-calm, bright, quiet, Paul-Newman-eyes-sky June day.

Now take a deep breath for this wondrously lengthy run-on sentence:

Since I no longer work in a building dressed in office clothes in a windowless area where I am isolated at a facing-a-corner desk, under pressure must-make-money selling advertising over the phone, BUT, rather, am now employed as a writer – typing tip tap tip in my hippie skirts and comfy t-shirts, from home, on the couch, for a charity I love, with the TV tuned to “light classical” 1270, all windows open, house clean, food & drink for whenever I feel like eating, Almanzo-kitty and Jack-dog at my side or in the yard, breezes and birds calling me outside where I stretch and break from work to water plants, walk barefoot to the park, garden a little…whatever I want so long as the work gets done, I am grateful because this alone makes every day like a fantasy-dream come true.

I can’t really express how I feel the need to pinch myself each day.  I wake when I want and I don’t have to go anywhere at all.  The work I do feels like painting a picture or making nature art by a stream.  Creation.  It’s a joy for me to write.  And I am unbelievably blessed.

What a deliverance. 

As the shock begins to wear off I am finding myself breathing slower, feeling more relaxed, smiling inside and out.  I sit in meditation easily.  My head and heart are clearer.  I’ve befriended new neighbors and gotten closer to old ones, and when I do not have writing work, I love to spread the word about Modest Needs, the foundation for which I am now director of communications.

But that’s just the groundwork for this awesome day.

Jonah’s caregivers, P and N, drove him up to this “second chance eye doc visit” (after the failed appointment-cut-short exactly a week ago today).  I met them at the van and Jonah came bounding out, smiling wide and with a fresh new hair cut.  We walked around outside and in the lobby for a good 20 minutes before they called P’s cell to tell us to come up and into an examining room.  Usually I underscore every last detail of all this, but today I will simply tell you Jonah was an angel.  A “normal” kid could not possibly have been more cooperative or have amused him/herself any better.  After waiting those 20 minutes downstairs, we waited again from 10:30am (when they called us in to a room) until 11:30am (when the doctor finally came in) and I tell you he was the picture of patience.

He walked in tight circles and we played “high five” and sang songs – everything from “I’ve Been Working on the Railroad” to Guster’s “Keep it Together” to “B-I-N-G-O” to “Bye Bye Blackbird.”  I gave him a green octopus and many white tic-tacs.  He asked for hug and more hug and kiss eye and more kiss, over and over, his repetition sweet music.  I held him tight and kissed his eye, the top of his head, his shoulder…we made a game of it — we made a game of everything — he was happy and giggling, asking for donut? even as I made up a song about him asking for donut.  N and P are incredibly cool and we were able to talk and laugh among ourselves and along with Jonah.  

Donut?  Donut? he asked several dozen times, lest we forget.  He knows the drill: Number one: doctor.  Number two: donut.  Donut?  Donut?  “Yes, Boo, of course!”

He never fell apart, and we checked out and walked back downstairs.  I hugged P and N goodbye before kissing Boo soundly and sending him off to get his beloved donut.

I’m not going to ruin this post with details about Boo’s eye.  Later.  For now, just pictures.  I took several – here are some good ones:

First I opened the door of the van and gave him green octopus

First I opened the door of the van and gave him green octopus

happy boy, waiting in the lobby

Happy boy, waiting in the lobby

walking into the eye doc office

Walking into the eye doc office

...and being a really good boy for his ultrasound! ...and being a really good boy for his ultrasound!

…and being a really good boy for his ultrasound!

It was damn near a miracle.

Today I pray one of my two main prayers (the other is please): 

Thank you.  Thank you.  Thank you!!!

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lessons and blessings

Posted in Uncategorized, tagged , , , , , , , , on August 21, 2011| 8 Comments »

It’s been almost 6 days since I have seen my boo.  I’ve learned a lot of things in those 6 days – a quick, hard, University of Life experience I never applied for and didn’t want to attend.

In 6 days God created the world, they say.  Well, I did too, in a way.  A new world for me.  And a new world for boo.

My world is now near-free of dread.  I don’t mean the “damn, tomorrow is Monday and I have to go to work” dread.  I mean the dread that lives inside you and owns you.  The kind that makes you steel-stiff & come unglued – the kind that’s unrelenting, ubiquitous – there all at once, all the time, even in your dreams, for whatever the reason. ‘Capital D’ Dread.  It’s gone.  I am not going to randomly show up at work with scratches on my arms & face and I am not going to trudge into LensCrafters again and again with broken glasses to have them repaired by S, who I’ve seen so many times we are almost-friends.  She told me she uses my story at work as an example of what their optional “protection plan” can be like, and for whom it can be downright necessary.

And of, course, no more dread of Jonah going away – of counting weeks, days, clinging to him even as he tries to bite or hit me, longing to keep him at our side.  That dread is gone too, and it’ feels like setting down a load of bricks I’ve been carrying, sharp and hot in the summer sun.

From what Anderson School has told me, Jonah is acclimating well and more quickly than expected.  He adores their playground, their pool, and all his caregivers.  They e-mail, talk to us on the phone, send pictures (here’s another one),

and communicate with compassion and understanding, even though you know their days have to be difficult and tiring at best.  Some have told me how they have already grown to like him a lot.  I am grateful.  How happy he looks in the pictures they send!

And all this support, from everywhere – people I know, people who read my blog, teachers and friends, co-workers and relatives — it is overwhelming and humbling.

A mystery person even left flowers for me and a bottle of water for the flowers on top of my air conditioner outside the apartment:

That was pretty cool.

I miss my boo, but I know I have made it over the mountain.  Jonah will too.  And Andy. I know it.  I feel very blessed.

If I were asked to give advice based on other things I’ve learned quick & hard, I would say:

1) Don’t get all mercenary and clingy with possessions, money, or anything else.  Watch “The Gods Must Be Crazy” (even if you’ve seen it before) and it will remind you why.

2) Everything is impermanent.  True story.

3) Judgment of others is wasteful arrogance, and the judgment almost never assesses its target correctly.

4) Kindness is never a mistake.  When in doubt, be kind.  Choose it every time and you will never be wrong.  Do kindness.  Not just when the opportunity crosses your path.  Practice conscious kindness.  It comes back to you.  Trust me.  In amazing, incredible, miraculous ways -often when you least expect it and most need it.

5) Calm the hell down when driving, running, working, going shopping, dealing with children, people you like and dislike.  Just calm the hell down.  Breathe deeply.  For God’s sake, breathe.

6)  Love.  Love as much and as hard and as completely as you can.  If you have lost someone and still care for them, love them anyway – even if they’ll never know it.  Love the seasons, the cold and the rain as well as the sun and the warmth.  Help someone.  Do something.  Care!  Don’t watch the news and shake your head and say that’s too bad.  Find ways to make a difference, even if it’s just to one person.

Before I get carried away, and I suppose I could type all day, I want to say I have not conquered these lessons – only that I believe them to be true and my goal is to follow them, as much as possible, from now on.

Oh – and one from my dad:

Before you say something to someone, ask yourself if it is true and if it will benefit the other person in any positive way.  If not, don’t say it.

That’s a good one, dad.

My father’s doing volunteer work now; he drives people to the food pantry in a van, which makes me prouder of him than anything else he could do.  He also is letting me live my life and make my own decisions, something which must be difficult for him, because he loves me and doesn’t want to see me hurt.  He has had to trust my smarts and my own judgment, and he’s doing it all while still remaining supportive.

My mom is counting the minutes til we go see her precious grandson – I think we’ll go for a picnic next Saturday with him if it is nice, and Jonah can play on the playground.   She has been an enormous support, especially for Andy, when no one else was.  She has opened her home to Jonah (and whomever is watching him) over and over and over again, withstood a broken TV and other household items, scratches, tantrums, bathwater splashed everywhere, and toys scattered about.  She is a true testament to the love between a grandmother and her grandson.

Andy is proving both courageous and Superdad by moving so close to Jonah, so he can see him (and oversee him) as much as possible.  Although we are separating, I will never choose to remember the bad things.  Only the good – his kind heart and earnest, helpful spirit that always, unfailingly, reaches out to others when they need anything at all.  Here is a man who, quite literally, would give you the shirt off his back, and I will always love him.

I don’t know how this turned into an awards ceremony but if I am going to spend paragraphs giving mom, dad, and Andy kudos, then I certainly cannot forget M – the manwho took so many days off work to be there, with or for me, time and time again…the man who slept between Jonah and me on a cold hard floor at a psychiatric center for three nights just to protect me…the man who drove 40 minutes to visit me every day at yet another psychiatric center, bringing colorfully beautiful flowers when I’d gone suicidal…the man who came with me several times a week for months to help me watch Jonah, taking on the tantrums and scratches and screams of a child not his own…  The one I go places with, read to, watch movies and take long rides and visit the Almanzo Wilder Farm with.

Here are some pictures from when we visited the farm one day this week, just for respite, traveling slowly through the Adirondacks until stepping reverently over the threshold of Laura‘s husband’s childhood home (yes, I am that into them):

Me, grinning under the historical sign

This massive tree is thought to be 200 years old.  Almanzo climbed it!

…and his home, restored.

I have a dozen or more pictures but I mustn’t forget that I can always start a Laura Ingalls Wilder blog and ramble on about her there.

It was a peaceful, pleasant day. Some weird part of me feels like this week off work is over and so not only will I be going back to work but to the Jonah routine too.  This has not really hit me quite yet, I think.  And there are definitely two sides to this coin – loss/pain and relief/freedom.  I hadn’t even thought about the second side, really, in a positive way, but my therapist has helped me with perspective, so finally there is very little associated guilt, which I was full of…thoughts like “I shouldn’t be having a good time since I sent my boy to live in a home.”  No.  We should all be having a good life.  We all deserve to be happy.  Jonah too.  Jonah especially!

Please continue to send good energies and prayers to my little Boo.   (I can’t wait to hug him)!

And once again, my prayer is simply thank you.

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the push of the divine

Posted in autism, placement, The Anderson School for Autism, Uncategorized, Wildwood, tagged , , , , , on August 11, 2011| 4 Comments »

I’m at the point where I just want it to be Tuesday.  I want to go, get it over with – to do it instead of dread it.  I’m tired of being sapped of life and joy, breath and motivation.  It’s starting to feel like I’ve chosen this misery.

Today was Jonah’s last day of school at Wildwood. Thank you so much, Wildwood.  No words can express our appreciation that there is such a wonderful school; Jonah was so lucky to be there for 6 years.

I have so much to be grateful for – there are so many people who care.  Yesterday I got a package from a business networking guy I know.  Inside was a card from him and a beautiful hand-crocheted twilight-blue stole from volunteers at his church.  My hands shook as I read his card and the church’s handmade card and message.  Feeling something almost like shame, I clutched the stole and cried into it.

Then, a lady I am in contact with only by phone and e-mail sent me a long letter about how her son has autism too – something I’d never known.  The letter was full of encouraging, positive sentiments and suggestions for Bible verses for me to read.

My friend H continues to generously offer her pool, and friend K gave me hope – and e-mails me SNL skits to make me laugh.  M encourages me with loving words, and today he also e-mailed me a verse:  Jeremiah 29:11:  “For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”  My aunt texts me messages telling me how much she loves me, to call her anytime, that she is praying for me.  New online friends and past acquaintances, family, friends, everyone envelops me in love and light.

Seems like Divinity is yelling at me from all directions:  Have faith!  Have hope!  I’ll take care of everything.  There is no denying the push of the divine – it’s all around me.  I’m grateful for it.  Every morning I wake and cry, my throat so tight I am almost gasping to breathe –and as the day progresses I become calmer.  I can smell the rose and blow out the candle, and there are long moments of peace.

The push of the divine is gentle but firm, like a tight hug.  I am hugging back, hanging on.

A few more pictures:

happy boo

chillin’ in the pool

water boy

…baby boo,

Mama loves you.

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a week and a day

Posted in Anderson School, autism, behavior, placement, Uncategorized, tagged , , , , on August 8, 2011| 2 Comments »

I’ve gone through a time bending worm-hole.  It was six weeks away, and now it is a week and a day.  I will pour myself into work, twice as much as usual, for I’m taking next week off to do this thing and then process it best I can without having to think too much. 

I keep calling it this thing like it doesn’t deserve recognition in any other terms.  My God, I’m going nuts.  Off the charts.  Just mailed the direct care workers at Jonah’s residence letters and pictures and my blog address, cell phone number – as much information as I could muster about my precious, barely-verbal boo. 

Also I sent thank yous – expressions of gratitude for what they do and deal with every day, for choosing to help these children and face injury and shit smears and God knows what else – all for less money than they deserve, undoubtedly – for what they do is priceless.

I hope this week and next week fly by.  I hope I can go far inside my head, into a Novocain-place, into numbness and ennui, even when I must be awake to work & think.  As oxymoronic as it sounds, I want the foundation of my days to be a state of sleep from which I can wake later, later.  Some other time.  Some other place.

I don’t want to live through this.

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the august article

Posted in Anderson School, placement, tagged , , on August 1, 2011| 8 Comments »

I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet.  How do I say what’s happening?  I edited it about ten thousand times.  The issue came out today.  For those of you who don’t get the Capital District Parent Pages, here’s what I said:

Normal is a Dryer Setting

August 2011

Well, here we go.  Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there. 

It’s a beautiful campus.  Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room.  There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums.  He can’t do those things anymore here.  I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.

I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away.  The truth is I have no idea how to do this thing.  I have to believe Jonah will be protected and happy.  I need to imagine him learning and laughing.  There is no other option if we are to drop him off and drive away.   In the meantime, I cry.  I have nightmares, nagging thoughts of negative scenarios.  My head fully understands the necessity and wisdom of moving him there, but God, my heart.  Each day is another day closer to that inevitable day, and my heart mourns.  I’m grieving for him even though he isn’t yet gone.

I’m going about it all wrong, I know.  What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase.  Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool.  And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body.  Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair. 

I‘ll concentrate on shopping for things he needs for his room.  I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors.  A late-afternoon-sky colored comforter with a floor rug to match.  The softest blanket I could find.  I want him to be comfortable. 

I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been.  I want him to remember his loves.  I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn.  I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures. 

Everything changes.  This is a new chapter in a new book.  Maybe even a whole new library.  I’m grateful to everyone who has made places like this available – and so much better than they once were.  I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him.  I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them.  I’ll never complain about taxes in New York again.

Still, though, it’s all so surreal and unthinkable.  I want to be a parent advocate for other people going through this process.  If I can be a comfort to just one other family, it will help.  The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.  

As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before.  So goodbye for now, little boo.  Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be.  Your mama knows you are bright and silly, fun and eager to learn.  You show ‘em, sweetheart.  They’re going to love you.  I just know it.

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my 100th post mother’s day mystery

Posted in Uncategorized, Wildwood, tagged , , , , , , on May 5, 2011| 8 Comments »

Today, Jonah brought home some Mother’s Day presents he’d made for me at school (3 different cards/posters) and a pink, stapled package.  Inside the package was a pretty orange geranium (?) in a little ceramic pot- it made me grin.  Thank you, Wildwood.  🙂

Then when I got home to my apartment, M told me a box had come for me from 1-800-flowers. I could tell it wasn’t from him because he was just as curious as I was.   A Mother’s Day gift, I thought with a smile.  Likely from my mom, or my dad – or even Andy, even though he’d already told me that Jonah’s gifts from school were all I was getting for Mother’s Day. 

 

I opened the pretty multi-colored bouquet and arranged the flowers in the vase they came in, and then I found the note:

Dear Momma,

Thank you for all that you do for me.  Thank you for train rides, moneycoin, waterfalls, trips to Grandma’s, peanutbutterrolls and too many other great things you do for me (and with me) to mention!  You are the best momma any kid could ask for and I love you soooo much! All done.

– Love, Jonah Boo


After I stopped crying my happy tears, I tried to figure out who could have sent it.  Who knows my address now?  Who has the sense of humor to put “all done” at the end of the card?  Who did this wonderful thing for me?  Andy says it wasn’t him.  M denies it, as does D, who watches him most.  And neither my mom nor my dad would write that.  My friends?  K or H?  P or Mx?  Maybe.  Martie?  Someone from 4 Winds?  from Wildwood?  Someone from work?  Someone I used to work with? A random reader? Hmmmmmm.

I kind of want to know who did this and I kind of want to believe in the mystery of it – to allow it to be from Jonah – to give it his voice, to have it be like Santa Claus is when you’re a child…or something from an elf, a faerie.  Or from one of my very best friends who’ve died – Gina, or Jennifer-Sanx.  Something impossible, yet true.  It’s all so right up my alley.

In one of my favorite children’s books, poor protagonist Sara Crewe receives gifts and has no idea where they came from.  Every day new gifts appear to help her make it through desperate, lonely days.  She doesn’t wish to force the identity of the giver if that person wishes to keep him/herself a secret, but she yearns to thank her benefactor.  So she gets the idea one day to write the person a letter and leave it for the next time s/he came.  The letter says, in part,

“I want to thank you for being so kind to me – so heavenly kind – and making everything like a fairy story.  I am so grateful to you, and I am so happy…”

Like Sara Crewe, I say thank you.  Somehow I suspect you’re reading this, whoever you are, and I want you to know you have made my day.  Thank you!!!

…and you’re welcome, Jonah.   You’re my precious little son and I’ll always love you, no matter what.

All done.

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microcosmic supermoon

Posted in autism, behavior, tagged , , , on March 20, 2011| 2 Comments »

Last night’s full Supermoon was so pretty;  I love astronomical phenomena – I’ve always wanted to see a full eclipse of the sun, for instance, and I’ve traveled miles into the Adirondacks to see a star-splayed sky unlike any you can see here near Albany.

So I stared at the Supermoon and thought about how it hovers so close this day to our world, to Japan, and Libya, and everywhere on this earth where children, especially, face tragedy and war, or are alone, orphaned by disaster, or so hungry their eyes lose the spirit that lives behind them, or existing in terrible places where they face neglect and abuse and God-knows-what.

And then I thought about Jonah, and our situation, and this blog…how I bemoan my actions and choices, how I dramatically describe despair, how I am so very afraid or angry and frustrated – how I feel envious…resentful…depressed.

How microcosmic my life has become.

And then, looking up at that moon, something opens up inside me and I feel a gratitude pour into me that is genuine, humbling, and strangely unsettling.  The events outside my own tiny world are colossally huge, and the vastness is overwhelming, as inconceivable as the Supermoon, so much more so than my own worries.

I live in a state where free care is provided to my aggressive, innocent, uncomprehending son so that he will have a chance to live better, and happier – with access to a place that will provide 24-hour consistency, routine, ritual, and nurturing to him.  And I complain about this because I hold fear around me like a blanket – because I am selfish and want him close at hand – because I allow myself to entertain the notion that somehow Andy and I didn’t do enough, soon enough, right enough, to prevent this.  Because I am wrapped inside my microcosmic universe.

I feel stupid and self-interested – and soul-tired too.

So this entire rambling post is just to say that I realize I am lucky.  Fortunate, blessed, whatever you want to say.

A lot of it is because Jonah’s father Andy is both devoted and resigned to the way his daily life unfolds – that it’s more difficult than I can imagine, that he is stronger and better and kinder than he knows – that he deserves so much more than this life he is enduring right now.  I see how much he is hurting, how tired he must be.  On my best days I can’t handle Jonah for half the time he can, and that’s with help.

I hope Andy gets the life he deserves, for he is smart and good and self-deprecating.  He is the nicest man I ever met, and probably the nicest man I’ll ever know.

Yes, Jonah is lucky.  And so am I.

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