Posts Tagged ‘Springbrook’

My only remaining prayers are please and thank you.

I don’t know what else to pray.  I don’t know what else to say.  I want to stay in a place of gratitude.  Jonah was a good boy for M and me when we took him today; he enjoyed car ride in the rain, and we took a few very cool grey-skied foggy droplet pictures:

a dozen or so goslings with their mom and dad…

we’re not sure why the rooster crossed the road

the woods were like dream visions.

We even risked the wrath of Jonah to turn around and zoom in on the great blue heron.  You don’t see those every day.

The truth is I’m just trying to keep it together.  I’m phone-shy and out-in-public shy.  I don’t much want to talk to anyone, even people I love.  I like silence, and listening to Guster and my new Paul Simon CD.  At work I listen to classical music all day.  I eat sporadically and my sleep is full of dreams.  I’m reading, but slowly, a chapter at a time.  Practically the only thing I can stand to watch on TV is Match Game, with Charles Nelson Riley’s campy 70’s antics.

Oh, and I write some, and make endless bead necklaces.  I used to complain I have ‘no countdown’ with Jonah and the residential schools; I hated that I didn’t know when Jonah would have to go away.   Well now I know, and now I complain about that.  Can I stop fucking complaining?

May, June, July, August, September, October, November…

This time next year I will be, in a lot of ways, no longer playing a mother-role.   It’s not like some of the other families, who turn a great deal more attention to their other kids.  There are no other kids.  I am relieved and aggrieved by this, just as everything I feel or say or think or do feels paradoxical these days.

I will not be bathing my son, helping him put on his shoes & coat, holding him, riding him to see train or red barn or grandma.  Andy will not be putting him on or off the bus, giving him wagon rides, making sure he eats healthily enough, has his teeth brushed, and is kissed goodnight.

Jonah will not be bruising, kicking, scratching, hitting, biting us, or grabbing & mangling our glasses and faces anymore.  He will be in others’ care.  Experts’ care.  He will learn and grow and get better.

I guess I will probably see my son once a week for a few hours.  Will he know I am his mama?

Will he know I will always be his mama?

It’s as much of a mind-trip as it is the only thing left to do.  It’s time to try to begin to attempt to absorb it all.  I don’t want to.  I don’t want to.  I can’t.  I have to.  I’d rather they take him next week, or never.  It’s too long to wait.  It’s not long enough.  Please don’t take him.  Please take him.

Please, please love him.

Read Full Post »

Springbrook called the day after we toured The Anderson Center for Autism and told me they were going to accept Jonah, in one of their brand new residences, most likely in November.  We took the placement; you can’t just stay on all the lists until the first placement comes up, so I had to call Tradewinds and The Anderson School and tell them to take Jonah off their lists.

Now it’s real, and I am a wreck.  I have researched and taken notes and gone into a state of mind where it is all objective – it was simply a project – albeit a difficult project – on which to work very hard.

Now the project is over and I am back in the subjective and it is real.

It is real and I have a countdown; it feels like the doomsday clock is ticking and I feel very very dangerously, frighteningly, frustratingly, ridiculously close to the day I admitted myself into Four Winds.

Somehow I have been shocked back into reality, where all this is really happening.  I really did fuck up my marriage and I really will give my son away soon and I really do feel like I do not belong in this world.

I have taken extra meds and I’ve got to be able to keep my shit together and get a lot done today.  I am thankful it is Friday so I can crawl home and cry when this day is over.  Jonah had 8 hard-core aggressions at school yesterday; it is not a matter of whether we are doing the right thing but rather how to actually do it.  My father has not seen Jonah since the day before Thanksgiving and it is because he is afraid of his grandson.

And now, suddenly, I have this near-constant tinny ringing in my ears and vertigo.  When I reach for something I miss it by an inch.  When I try to pour something I spill it.  I am spelling all my words wrong and have to go back and edit this over and over.  

I have a strange sense of not even being in my body. 

“We’ve colored in the lines and followed all the signs;
Fought a war till the war was over…
Said you’d never be the kind with an ordinary life –
Now this how it feels to have a broken heart

Look at the mess we made
Now we stopped and we say what we always say
And then you make the great escape

With every year you’ll come to regret it…


Read Full Post »

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.

Read Full Post »

Cheryl DeDecker from Springbrook did call us and she basically told us that Jonah would not be able to enter their current program because of the level of his aggression (the kids share rooms and he could hurt his roommate) but that they think he’d be a perfect match for the new residences they are building, where every child has his/her bedroom.  The problem is, the new buildings are evidently earmarked to get NYS kids attending out-of-state programs back into NYS.

She wants to advocate to place Jonah in one of the new buildings under construction right now, and I told her I would help her do so, but there’s no guarantee we’ll be able to get him in – and if we did it would be October or November at the very earliest.  I don’t know if we can make it until then.

On Thursday, April 7th, this is (in part) the note Wildwood sent home in his log book:  Jonah had a tough day today.  He’s had 5 aggressions – 3 being of very high intensity.  We had difficulty getting him in and out of the safe room because he wouldn’t stop aggressing.  We had to hold him in the safe room until he was calm enough to leave. 

Next day:  Jonah’s had 6 aggressions today – some more intense than others…

Meanwhile he’s already been accepted at Tradewinds and we liked it there too; they will likely have a spot sooner and their kids all have their own rooms. Andy and I don’t know what to do. We don’t want to risk losing the Tradewinds spot by holding out for Springbrook, which may or may not take him at all.  Not that we know when there will be an opening at Tradewinds, because we don’t…but it’s a bird in the hand.

Andy says he’s doing okay emotionally – my cousin D came and helped him this weekend while I was working at our yearly convention in Saratoga.  They shaved his head because it was getting so long, and I came over Sunday to help for a while; Andy was just getting him out of the car and Jonah was limping awful – so pronounced it brought tears to my eyes, and I must have cried for 4 hours over our whole situation and probably exhaustion from the weekend mixed in.  Jonah’s been limping but it’s getting worse, and there are no pediatric rheumatologists in our area.  We have to figure something out though, because it’s obvious something is really wrong with his leg – every morning he limps now, Andy tells me.  Andy is holding everything together while I fall apart, weeping and worrying.  Paarents of these kids are not supposed to be so weak.   It’s simply not allowed.

And yet I’m the weak one in a sea of strength.

That’s going to have to be part one of two, because I’m out of time to type…I’ll leave you today with some new pictures of Jonah Russell:

Read Full Post »

Some of our boy is back, now that we’ve got Jonah taking the original dose of Risperdal again, for fear of attempting yet another med or dosage that’ll throw him all out of whack.  It’s a strange thing to try this and that, feeling like you’re guinea-pigging your child, especially since you used to think you were anti-meds.  Desperation will bring you places you thought you’d never see.

After work I often go the house, and Andy and Jonah and I will take a ride to go see train, which Jonah enjoys again and seems to get excited about, but if a train takes too long to come along or we take a right when he wanted to go left, we pay for it in kicks and thrown shoes, screams and thrashing and incomprehensible demands.   It’s a trade off; we can have some of his personality and smiles back but the aggressions still aren’t mitigated very well.

But ah, the smiles…

They’re sweet, the smiles, and damn it he’s in there, the kid who swims and climbs and pours wood chips down the slide.  It’s great when the cloud of aggression parts and you see him smiling, playing, singing, joyful.  Even just calm, eating or watching train-on-TV.

He’s my precious little boy, and I want to snatch him up and plant kisses all over him, have him open his arms wide and hug me, say I love you, mama —  hold him close, snuggle into him on the couch, sniff deep into his hair and simply absorb the presence of him.

Springbrook hasn’t contacted us yet, so we’re waiting.  From Thursday through Sunday I’ve got a lot to do during long days at our annual spring convention at work, so I’ll be back after that’s all over.  It’s fun but exhausting, and I’m presenting a session this year so I’m a little bit nervous.

Please send Andy some “you can do it” energy, if you will.  My mom will try to help him, or at least feed both he and Jonah, and my cousin D will hopefully help too – but trust me it won’t be an easy weekend for him and I hope Jonah doesn’t give him a hard time.

Once in a while Andy’s got to catch a break, right?

Read Full Post »

“I’ve been living so long with my pictures of you that I almost believe that the pictures are all I can feel.”  ~The Cure

We haven’t heard anything from Springbrook yet.

I’ve been having a hard time.  Sometimes when that happens, I take pictures of the smiles, the fun Jonah has doing what he loves; I focus on them and forget the rest…

And some oldies-but-goodies showing his adoration for water:

Read Full Post »

I carry my camera almost everywhere I go, so it was on hand today when I went to check the mail and saw three tiny, miraculous patches of what I think are crocuses.  Here’s one of the patches, pushing out of the brown, dead, winter-packed ground.

According to the weatherman, by Friday night they’ll be buried beneath a blanket of snow of as-yet undetermined thickness.

I don’t mind.  It can’t beat us down now, can it?  At least not for long.

It might do those crocuses in, though.

Yesterday Andy picked me up at work and we went to the meeting at Jonah’s School with the people from Springbrook, who had evidently arrived an hour or so before us to observe Jonah in his classroom setting.  I guess he did pretty well while they were watching him and attended to whatever task he’d been given, with just a small swat thrown in for good measure.  We stopped at the nurse’s office to sign permission for them to give him ibuprofen for his leg (he’s been limping a little on and off lately, something else we have to get to the bottom of)…and in the hallway there lingered the unmistakable aroma of poop, courtesy of our beloved child.

At some point, evidently after the Springbrook people left the classroom, Jonah either needed or requested the safe room and then decided to shit, dig around in his pull-up, and retrieve some of his freshly-pressed play-doh to smear on the walls.  I’m not big into text-speak but WTF?

We got the big-time aggressor.  Can we at least not have the shit-smearer too?

So while they cleaned him up and kept him occupied, Andy and I met with Wildwood staff and the Springbrook folk in a small office and they asked us questions about Jonah and we asked them questions about Springbrook and at first they kept directing all their questions at me

funny how people automatically turn to the mother for the answers about a child

and I told them Jonah was living with his father, and Andy was articulate and honest in speaking to them, and I emphasized how hard this was for Andy, and they nodded a lot in empathy and understanding, and I told them we liked their place best, we think

and I asked if they would tell us if and how and when they would take our son to live and be educated and nurtured and please love him some hour and a half away from us because we can’t do this thing anymore

and we never thought this would happen to us

and we feel torn and confused as hell,  sometimes guilty and often frightened, usually stressed

and almost always anxious

but they have to go back and have a committee meeting and they’ll probably be contacting us by the end of the week to let us know

and then we all shook hands and smiled

and Andy and I got back in the car.  I asked him if Springbrook accepts him, is that where you want him to go? and he said yes and we were quiet mostly as he drove me back to work.

As I walked up the stairs to my office, they were just about to sing happy birthday and serve goodies to the two March birthday peeps.  I smiled and dug into my cake with the rest of them, allowing the worry to fall behind me.  It’s something I have learned how to choose, a defense mechanism in my brain keeping me sane and functioning.

I usually can shed intrusive thinking like a dead skin; I’ve been led to understand that all that matters- all that can matter – is right now.

The end of the week will come, and they will either take Jonah or they won’t, and if they don’t, he’s been accepted at Tradewinds, and it will all happen the way it is supposed to happen whether I worry about it or not

in this soon-to-be-snowy shit-smeared spring of ours.

Read Full Post »

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…

Read Full Post »

The night before Andy and I traveled to Oneonta to tour Springbrook,  I went with M to Proctor’s to see The Lion King; it was his Christmas present for me.   Oddly, at the last three concerts or shows I’ve gone to, I’ve sat very near or right next to disabled individuals.

At this show, I was seated next to a smiling lady and on her other side was a young man, maybe 20, who was rocking forward and backwards in his chair, obviously excited, obviously mentally disabled.  I said hello to her and asked if the young man had autism; I have a little boy with autism, I explained.  She said his name was Thai (not sure how to spell it – sounds like “tie”), she was his mother, and that no, he had (some other disability I don’t remember)– so we talked a little bit before the show started.

It was obvious that Thai was freaking out the lady sitting on his right – she was scrunched as far away from him as possible – so I suggested to his mom that she switch places with Thai; I told her his rocking and movements wouldn’t bother me.  Gratefully she agreed, and Thai amiably moved to sit next to me instead.

The musical began, the first song (The Circle of Life) building to its climax.  When Thai rocked toward me, I leaned against him; I could tell he liked the pressure because he stopped rocking and leaned right back into me.   I liked the contact, we two leaning into one another – it made me feel warm somehow, knowing this man could come to a musical and enjoy it – it gave me hope that my own boy might one day be able to sit through a show happily, hopefully next to someone who doesn’t mind his disability.  Sometimes during the show Thai would place his hand on my knee – and once I put my hand over his; we sat like that, watching the show, for a few minutes…a one-time connection of two strangers that made me feel more whole.

The show was fantastic…incredible how they did it all on Proctor’s little stage, transforming the place into a magical African jungle-world with innovative costumes, scenery, and fantastic actors and actresses performing in explosions of color and song.

It was a distractingly pleasant prelude for the next day.  Like the day we went to Tradewinds, Kathy (a social worker from Wildwood) picked Andy and me up as soon as we put Jonah on the bus and this time we headed to Oneonta, NY (where I went to college) to tour Springbrook.  Another specialist from Wildwood, Heather, met us there.  It is a pretty location for the school and resident homes, tucked in among the tree-lined hills of the area as if placed there gently by a giant.

I was glad to learn that construction was going on for a brand new gymnasium, cafeteria, and two new residences.  We were very happy to be able to look in at their shallow (2-4 foot, yet large) indoor pool and learn that some of the homes had bathtubs.  Funny what we cared about – of course other things are important too but we want our little water-boy to be able to do the things he most enjoys.  Plus they have equine therapy, yoga, and other activities, they take the kids on trips and outings, and all the kids we saw there looked happy, which is perhaps the best testimony of all.  It is the closest facility to our home (about an hour and 15 minutes away) and I think our favorite, though we’d be happy with Tradewinds as well.  They were having a tie-dye sale so I bought a shirt for Jonah.

Just like last time, though, I broke down when we toured one of the actual residence homes.  I asked the guide how the transition happens – what it’s like when you cannot explain what is happening, for the kids who probably won’t comprehend or understand.  She saw my anguish and kindly explained that there are counselors there who can talk to us.  Tears streamed down my face as she explained, gently but honestly, that the transition is usually not easy for the child in the beginning – that sometimes a parent might choose to stay at a local hotel for a night or two and visit their child, but after that they ask for a full two weeks where you do not visit, so he is not confused and can become acclimated.

Two weeks.

Andy didn’t see the point of staying at a hotel and said so – I think he thought it would only make it harder, and I see that too – but just like last time, I sat in the back of Kathy’s van and cried when we left.

I don’t think we have to bring Jonah back there to be assessed because they are coming to Wildwood to observe him and then meet with Andy and me, on March 29th.  If they accept him I think they will have openings at the end of the school year – and those new residences will be completed in September or October.

I can type forever about the details of this place or that place.  I can understand the necessity of what we are doing and I can feel like I have accepted that necessity intellectually, more and more as its inevitability draws closer, but then my heart sinks into a sickening darkness and I think oh my God how in hell are we going to pack all Jonah’s things up and drive him to this place and then leave?  I think of weird details like which one of us is going to be able to drive back?  Will we have to take turns so one of us can sob while the other navigates us farther and farther away from our son?

What am I going to say to my mother?  How can I go back to work?  Go to the store?  How can I sleep, eat, breathe, knowing Jonah might be crying for daddy or mama or grandma, knowing he is probably confused and scared?

I feel like we’re planing to commit a crime.  There is an uncomfortable ‘karmic-slap‘ shame in me.  I remember when Jonah was 3 or 4, asking myself what does it take for people to give up guardianship of their children and put them in one of these places?  Who does these things?

Now I understand why.  Now I know who.

Andy told me he doesn’t know how he is going to live through this, and I understood exactly what he meant.

It is all he said.  We don’t talk about it.  We just can’t.

But I think about it all the time now.

Read Full Post »

Yesterday we found out that Jonah was accepted into Tradewinds – but they don’t have any openings until at least June.  We’re glad he’s been accepted and are going to tour Springbrook on the 9th, which was my favorite place (on paper, anyway)…then we will visit The Center for Discovery (the farthest away from our town) later this month. 

Jonah has just gone back to school after a week’s vacation – it was tough on Andy, the vacation, and I tried to help a little each day though it was not much help, considering I work full time.  Andy was stuck with the aggressions and the endless requests, the poops and the thousand baths a day and the attempts to get Jonah to eat healty foods, the cleaning and the playing and the getting him to bed. 

Yesterday, right out the box Jonah had 4 aggressions at school and one on the way home on the bus.  He’s been swatting a lot again lately while saying the word “swat,” something he’d stopped doing for a while.  We got the dosage of Risperdal lowered again and quit using the Klonopin – it’s this constant guessing game of drug combinations. 

It reminds me of that movie Awakenings.  From Wikipedia:  

It tells the true story of British neurologist Oliver Sacks, fictionalized as American Malcolm Sayer and portrayed by Robin Williams who, in 1969, discovers beneficial effects of the then-new drug L-Dopa. He administered it to catatonic patients who survived the 1917–28 epidemic of encephalitis lethargica. Leonard Lowe (played by Robert De Niro) and the rest of the patients were awakened after decades of catatonic state and have to deal with a new life in a new time.

The problem is, the drug didn’t work consistently and the patients began regressing back into their lethargia.  The Robin Williams character desperately tries all different combinations of the drug he’s using, first less of it, then more of it, and all the while his patients are slipping away, eventually back into their catatonic states.

Working with Jonah’s meds has the same flavor of frustation.

Yet, in the midst of the frustration and aggression, Jonah still has all his smiles:


And I do so love the smiles!

I’m doing a lot of freelance writing lately, so my posts may be few and far between for a month or so…but I’ll try to keep you all posted on everything that’s going on.  Happy March!

Read Full Post »

Older Posts »

%d bloggers like this: