Posts Tagged ‘the Rensselaerville Falls’

I will not remember today as Easter so much as the last day of Jonah’s vacation.  Tomorrow he’ll probably be a hellion at school, but he wasn’t so bad this week, as long as it must have seemed for Andy.  Jonah adores his daddy, after all, and when he’s home on break his routine is filled with no-pressure stuff like car ride and grandma and peanut butter roll.

Besides, Easter doesn’t feel much like Easter this year.  My mom, God bless her, made a big ham dinner last night and separated it all into Tupperware and packages, some for Andy and Jonah and some for M and me.  Today when M and I watched Jonah, we saw the train and stopped at grandma’s to visit and pick up our share of her Easter feast.

There’s no sitting down and eating it, you understand, without thrown food and overturned dishes, splashed drinks and a constant Jonah-vigil not worth attempting anymore.  Jonah showed little interest in the Easter basket grandma filled with bubbles and chocolate, jelly beans and spinning tops, running instead up the stairs, down the stairs, and up again into the spare room where he jumped on the bed screeching.

Then he wanted grandma to go for a ride with us.  When we’d buckled him into his harness, his beloved grandma seated next to him, he decided:  bye bye grandma.  You want to go bye-bye with grandma, or you want grandma to go bye-bye?  We didn’t know.  We never know.  He changes his mind before we can puzzle it out:  Grandma come on car ride, he said.  So we headed off for a tour of Latham and Loudonville but only got maybe 1/2 mile down the road before he pronounced:  all done grandma.  So we turned around, drove back, and dropped my mother off.  I ran inside to get Jonah’s basket and our dinner, and we left.

M and Jonah and I ended up at the Rensselaerville Falls, as usual; it is much warmer now and the snow has melted in all but the most shadowy pockets of the forest.  As usual Jonah ran way ahead of us and only wanted to stay a short while; even he understands it is still too cold to walk down to the water and wade.

This morning my friend texted me a picture of her little 3-year-old boy, seated on the couch with two baskets, a big smile on his face, the message reading:  Happy Easter! 

It’s the kind of thing you’d send to a bunch of people in your address book.  I stared at the picture of her sweet little boy, his huge smile — the Easter Bunny came!   I texted Happy Easter back to her and put the phone down, wondering:  What is it like to raise a neurotypical child?

I’m sure it’s actually harder to dress your kid(s) up, get to church and the family gathering, then come home exhausted with the kid(s) all hopped up on candy.   Hell, I ate half Jonah’s candy myself without him ever knowing or caring, and the only place we had to go was on a car ride to the woods to watch a waterfall…so we had an Earth-Day Easter…

I took a lot of pictures today, as you can see.  I also made some necklaces and put together a care package for someone.  I like to imagine the surprise of getting a box of fun things out of nowhere and for no reason at all. 

Guster has this video I love and play whenever I start to lose my faith in humanity, when I feel my hope waning.  It always makes me feel better.  I want to be a part of things that make people happier, even if it’s just one person at a time.

Anyway, after M and I ate our homemade dinner, I polished off a piece of J.S. Watkins cheesecake my mom had procured, then a healthy slice of humble pie as well.  Ah, all the complaints I spew.  And how small my little life really is.

Easter was delicious.

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Please forgive me if I don’t answer every comment individually; the truth is I have two jobs now, a full-time gig and an assortment of writing gigs to complete when I get home from visiting with Jonah.  It doesn’t leave a lot of time to write back to all of you, though I want to.  But I hear you all and value and embrace everything you say to me.  And I thank you for reading…for not judging…for standing behind me and holding me up like supports to a shaky building.

Thank you.

My annual work convention went smoothly, exhausting as it always is, and I met lots of great people there.

Jonah and Andy managed well, considering Jonah’s aggressions at school on Thursday and Friday.  My cousin D was there to help, like an heroine/saint.  And Jonah did well yesterday – only one aggression at school – so when I got out of work, Andy and I gave him a ride to the train (something he’s been requesting a lot again lately, as well as peanut butter roll from Stewart’s) and we talked about the whole Springbrook vs. Tradewinds problem.

I think we’re both on board with the bird in the hand, with sending him to Tradewinds, rather than risk losing any placement at all if Springbrook can’t get him in their program.  But we still like Springbrook too and are hoping they’ll advocate for us.  I don’t think this is a pressing decision because neither place has an opening now – I may call Tradewinds today to see if they know how soon Jonah might be able to get in.

We’re both just so tired.  Especially Andy, I’m sure, though he seems stoic, brave, and resigned.  Now that spring is here Jonah asks for parks we can’t take him to for fear he’ll attack another child.  The waterfall is a possibility but it’s 40 minutes away and there’s no guarantee the snow isn’t gone yet.  And his left leg is bad.  He limps markedly every morning and after we give him a wagon ride, another thing he loves lately.  I called his pediatrician on Monday, e-mailed him on Tuesday, and have yet to hear anything.  You can’t tell me they can’t give him an MRI/x-ray/blood test right here in Albany without having to drive to Boston – a near impossibility considering his aggressions.  WTF.  I’m going to call back today.

Maybe he’s aggressing more because he’s in pain.  He can’t tell us when something hurts – he seems to consider everything about his life and his environment as something he must bear, and he does so with aplomb, except for when he is violent, of course.  Is it his only voice, the screaming and the scratching, the biting and the kicking?

My poor little boo.  Andy and I both think the placement will help all of this.  They have doctors and psychiatrists there, professionals and people who are trained to work 24/7 with these children.  We’re now reconciled not only to the inevitability of placement but to its necessity as well.  And we’re banking on its helping our son, bringing out the best in him – the smiles, his ability to learn and grow and be as independent as possible – to allow him to reach his fullest potential, even at the cost of “giving him up.”  If you’d told me 10 years ago that this would be my life, I would not have believed you.

But as they say, if you want to make God laugh, just tell him/her your plans.

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We had taken Jonah off all the meds completely and it lasted about two days before Andy decided to put him back on the Risperdal; I’m calling the psychiatrist today to advise him.  We were not exactly thrilled with the effect of Risperdal on Jonah but my God, keeping him entirely unmedicated is definitely not the answer.

Off all meds, Jonah turned back into the boy who drove us to the psychiatric center in October, constantly swatting, alternately laughing and crying, able to play and sing but also vicious in his ability to ramp up from 0 to 100 in 0.2 seconds with no antecedent whatsoever, hurting Andy, hitting and throwing things.

I think Andy was ready to go berserk, and maybe still is, but this weekend we were lucky enough to have my cousin D come to help us, 4 hours each day.  We we able to pay her well (thanks for a respite sitter grant from Catholic Charities)  and I came over too to help out.

Both days we mostly rode Jonah around while Andy rested, took walks, went grocery shopping…  We managed him okay, though he did try to attack us – but D knows how to hold kids with autism and other behavioral problems – she works with kids at the Center for Disability Services – so I felt safe and had an awesome person to hang out with while we were spending time with Jonah.

Lately Jonah’s been asking for waterfall and signing it too, so on Sunday…

(after we cleaned up the coffeepot and grounds from the kitchen floor that greeted us when we arrived; Andy had Jonah on a time-out in his room for throwing the whole works, so it gave us time to put things back in order – this is the point at which Andy decided to medicate him again and gave him a Risperdal pill)

…we drove him out to the Rensselaerville Falls even though there is still lots of snow there and we couldn’t walk all the way down to the falls.  He loved it!

With big cousin D:

Then we took pictures of the falls, where a whirlpool spun these circles of ice in an ever-rotating pattern that amazed us!

Of course on the ride hom he threw his shoes, his drink box, and his peanut butter roll at us, but we got home safely and uninjured.  It was a better weekend, probably for all of us, than we’ve had in a long time.

Thank God.

Tomorrow Andy and I have a meeting at 2pm with the folks from Springbrook, who are coming to Wildwood to observe Jonah.   I am nervous about the appointment but also glad we are closer to figuring out a good, safe, hope-filled education plan for our little boo…

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“Grandma is open for business!”  Andy tells our son in the fake-bright voice of exasperation.

He is telling Jonah that yes, we can go see grandma now.  Jonah understands that when something is open for business, he can have it.  When it’s closed, he can’t.

Anything can be open for business or closed – including people (like Grandma), cookies, his scooter, cranberry soda, the TV, the Rensselaerville Falls, or even something that really is either open or closed, like an actual store.

Jonah loves his grandma almost as much as she believes the sun rises and sets on her only grandchild.  Only two things stand a chance at trumping her on Jonah’s request list:  go-see-train and swimming, and even among those prized temptations, grandma usually wins out.

Jonah is eight and a half.  He has autism, and for him, and our family, that means he speaks only in small phrases yet can somehow sing entire songs (usually by Guster) verbatim.

It means children are largely obstacles to Jonah, things to move past or get around, and adults are providers of hot dogs, car rides, games of chase, and “mem-a-made” (lemonade).

It means he will pee pee on the potty when bribed, and will (only very recently) squat and squirt out a tiny poopy on the potty when promised a coveted “black soda” (any kind of cola).  At all other times he wears pull-ups, requiring frequent and oft-stinky changes.

It means he drives us to distraction with his repetitive requests (“Outside?  Outside?  Outside?  Wanna-go-see-train?  Grandma?  Outside?”), but he endears himself just as repeatedly every time he nestles in for a big huge “huck.” (hug).

It means that until he was eighteen months old or so, we had very little idea what the hell was wrong with our kid but we knew that something strange was definitely afoot at the Circle K …yet we kind of dismissed autism as a possibility because “those kids just sit in the corner and bang their heads against the wall” — and, well, our son was so bright, loving, and engaged.  Couldn’t be autism.

It means sometimes there are Saturdays when by 10am I am already “all done” with the weekend and wishing I could go back to work instead of pulling my son away from a crowded playground because he won’t stop shouting “penis!” and all the parents are glaring.

It means I have been drawn inexplicably and unwillingly into a world where surreal is the norm and life is sometimes simply pushing through one minute at a time – sometimes excruciatingly, sometimes hilariously.  Sometimes both.

It means all of this and more, and for this writer, it is high time to write about it.  I was supposed to maybe have a blog on our local daily newspaper’s website, and the editor over there seemed initially interested in my proposal to do so, but now after weeks have gone by, he has yet to answer either (A) my follow-up voice mail or (B) my follow-up-e-mail-regarding-the-follow-up-voice-mail, and I don’t feel like begging the dude.  Plus they’d probably censor me, and fuck that.

This blog, then, about and in honor of Jonah Russell, is “Open for Business!”

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