The Turning Point

Tonight is the first night of Chanukah. As we lit the Chanukah candles, my thoughts were with Dovi. It has taken close to a year of work to push the guilt feelings aside and actually enjoy the moment. This night was filled with memories of a year ago, Dovi's last Chanukah at home with us. We had just received the news that Dovi was accepted at the residential school, and he would be moving out in approximately six weeks. Our emotions over Chanukah were mixed, to put it mildly. I think I spent the next six weeks with a perpetual lump in my throat.

I think today was a very appropriate day to sit down and reflect on that pivotal day when I moved into a new phase of my life - June 13, 2013, the day that Residential Placement inched its way slowly from the back burner to the middle burner.

Before I begin, I want to thank the devoted readers of this blog who have hung in until now. I apologize for taking such long stretches between writing chapters of this long-drawn out story. Between struggling to keep up with my Ebay/Poshmark "business," dealing with real life issues, and bracing myself for delving into the dark time that was 4 1/2 years ago, it takes a lot out of me to write these entries. So thank you for cooperation.

In any case, here's the pinnacle, the climax, the apex, what have you, of all the events leading up to the catclysmic moment when the world around me changed, forever. The moment when the niggling thought of 'one day we'll have to place Dovi but not yet' came into very sharp focus. It would take another 3 1/2 years until he would actually leave home,  but it was the defining moment when I realized that it was a definite reality.

The weeks leading up to the summer of 2013 were extremely difficult, to put it mildly. I was dealing with the effects of a third trimester of pregnancy at age almost-37. Everything hurt, and I had no energy. I was constantly busy with an overwhelming amount of research and advocacy and paperwork and scheduling caregivers. All kinds of crazy incidents happened then, such as the blow-up with Leticia, worrying about finding places for Dovi when I went into labor, getting his camp stuff set up, and most difficult of all - handling his newfound obsession for ripping paper.

The underlying reason for the vast majority of Dovi's destructive behavior has always been intense sensory seeking. Whether it's ripping open endless oatmeal packets, jumping in and out of the bathtub, spilling water and liquids, smearing ice cream on walls - it's all to get sensory input he desperately craves. Sometimes I was successful in redirecting his need for sensory input, after endless brainstorming and shopping and trial and error. Most of the time, I wasn't. Then Dovi discovered ripping paper. Apparently he was taught how to rip paper during Occupational Therapy at TABAC, and it delighted him to no end. Suddenly, no sheet of paper in any shape or form was ever safe. We had to hide all forms of paperwork, magazines, newspapers, and books. Fortunately I don't have any daughters whose homework would inevitably have gotten destroyed. But magazines were a big casualty. It was difficult to remember every single second of the day to hide all papers in the house. When I realized that this meshigoss wasn't going away anytime soon, I started supplying him with all manner of scrap paper to go to town with - old newspapers, a package of construction paper, ad booklets. We had our own built-in paper shredder. All that left the house blanketed in paper - it looked like Ground Zero. Leticia did not approve, of course.

The Other Option

My sincere apologies for the very long delay in posting this. It's still not the apex of the post I'm aiming for, which is to relate the gut-wrenching moment when seeking placement for Dovi became a more serious reality, but I'm getting there. It's a long story. It can't be told on one foot. And I want to tell it the right way - this is the only way to memorialize it. This is my life story.

I started writing this post in late August, a day after I visited Dovi (that's like 3 visits ago, lol. I'm still going every 3 weeks, religiously!) and simply didn't get around to finish it, because we came home from summer vacation a few days later and fell headfirst into the month of Tishrei. Then I got very busy with my very consuming ebay hobby. But the positive feedback from about a dozen of you spurred me on to get this piece finished, even if it'll be a month until the next one...

So here's the part I wrote back in August, and then I'll continue.

******

So, let's pick up the narrative from the previous entry, where I described in brief, the evolution in New York from oversized impersonal / abusive state facilities to small, personalized group homes.

As I started saying, when I began attending the local support groups, I was flummoxed that the main topic of discussion was about placement opportunities -- or rather, the lack thereof.

It seemed that despite the plethora of MSC agencies running residential facilities, there were simply no beds to be found. Apparently, the OPWDD had put a freeze on building new homes, preferring that young children be kept at home at all cost. Even if the cost was the sanity and well-being of the child's family, and often the wellbeing and even safety of the child himself. The bigwigs at the OPWDD just didn't seem to comprehend the extent of the effect of the severely behaviorally challenged population. And waiting around for an available bed was about as good as doing nothing.

I am touched!!!

4 comments + 2 private emails. I'm moved that there are still people out there who are interested in hearing what I have to say - and I'm a total stranger! I will continue, IYH, though maybe not immediately - in a week or two, bli neder. Thanks so much ladies!

Continue?

Hello everyone!
Well, the hectic month of Tishrei and all the holidays, are behind us. Now the question dangling in the air is, should I continue this journey?
Dredging up all the difficult memories is rough. Spending hours writing about it, with little payoff, feels like a bit of a waste of time.
Life marches on. My ebay 'business' took on a life of its own, running away from me at a speed I can't keep up. (shameless plug: http://ebay.to/2ypCiE8) .
At this point, I have no idea who my audience is, and if I even still have an audience. I don't know if it pays to keep trying to revive this thing. It takes way too much time, and I need to know there are people still interested in reading about our journey with Dovi.
Please drop me a line if you are still checking out the blog and if you want me to continue.
Email: Incog71@gmail.com, or in the comments below.
I am purposely not linking this anywhere, to gauge whether there are readers who check the blog on their own (or via email sign up.)
Hope to  hear from you!
(P.S.: Dovi is doing relatively well at his residence. He's making progress in some areas, while continuing to have trouble with some of his deep-rooted behaviors. But all in all, it's all good, thank G-d.)

Delay

I'm so sorry I'm leaving you hanging in the middle of a suspenseful story. (Un)fortunately, summer vacation is over and real life has gotten in the way. Between getting home from the country, getting the kids back on school schedule, and now with the High Holidays approaching and lots of cooking and shopping to do, not to mention a huge shipment of items to put on ebay, I have to put the blog on hold for a very short time. I'm in the middle of writing Part 2 of the post though, and it will be a doozy, so stay tuned. Sorry for the delay, but it'll be worth it.

A brief history on Jewish group homes in New York

After that earth shattering moment when my husband dared bring up the idea of thinking about placing Dovi, my innocence was destroyed forever. While I successfully put it out of my mind for the next year, the very knowledge that Dovi was living in our home on borrowed time and his path to the future was living in a facility simmered constantly on the back burner.

I had known, of course, that unless a miracle occurred and Dovi would be fully 'cured', or at the very least, toilet trained, relatively manageable, and verbal, it was his inevitable fate. But in my mind, it was far, far off into the future. There was no point WHATSOEVER on dwelling on it when Dovi was 2, 3, 4 years old.

But once I joined the support groups, right from the start I realized that the favoried topics of discussion in the group were respite programs, camps, and long-term placements. I was horrified. I had come there to find more info about programs that would "cure" Dovi, not ideas that would permanently label him a disabled person who needed tons of personal care.

Obviously, the women in the support group who were talking 'placement' had children way older than Dovi. Their kids were in their teens and low 20s -- with some preteens in the mix. Certainly they weren't 2 or 3 years old. And they were worried; residential care facilities were few, and waiting lists were long.

I largely tuned them out. One day, down the line, the info would come in handy. Not right now. Now I needed information about school. And camp. And home health aides. And yes, respite options. Not long-term care.

But after that pivotal conversation with my husband,  I began keeping my eyes and ears wider open than before.

The stark truth, however, was pretty abysmal.

The rise and fall of Leticia

"Good help is so hard to find" is the truest sentence I've ever heard.

I spent 5 1/2 years of my life networking, recruiting, interviewing, training, and losing dozens and dozens of people who help with Dovi.

There were com hab girls, respite families, volunteers, behavior trainers, camp counselors, and then of course, the Home Health Aides.

I briefly wrote about the process to get Dovi qualified for a homecare worker, and the first 2 aides who walked in and out of my life, Danuta and Yvonne. (I still wonder to this day what became of her and from time to time I look up her daughters on Facebook hoping to catch a glimpse of her whereabouts.)

After that, the agency sent Leticia, who at first seemed to be a lifesaver but soon turned into a nightmare.

I also learned that there's no such thing as a perfect homecare worker. You have to overlook a lot of things, but you also can't let yourself be stepped on. I was so afraid to let her go, and was terrified of change and of going through rosters of new people before we find someone good. It would take another long-term aide and another agency for me to finally find an excellent agency who always had a roster of great aides available and provided fantastic service. I just did not get good service from this first agency, and if a problem crept up with Leticia, I didn't feel like I had anyone to talk to.

But I'm getting very ahead of myself. Let's draw back the curtain and delve into this.

Three Cheers for Camp!

One of the most amazing points of pride in the Jewish special needs universe is the existence of sleepaway summer camp for special needs kids. While the general population doesn't usually go to sleepaway camp before age 11 or so, when it comes to special needs, many parents look forward to their child turning five years old so he or she can go to camp.

The main attraction for sending a child to camp is, of course, to get a much-needed break; often, the child's family goes away for the summer and there's no educational framework for the child to attend. But aside from the breather the family gets from the overwhelming burden of caring for said child, summer camp provides an opportune environment for every child to grow and blossom in ways they can't during the academic school year in a cramped city apartment. This applies even more to special needs children, especially with sensory processing disorders.

When Dovi was 2 and initially started Early Intervention, his therapists remarked that he did a lot better outdoors than when he was forced to sit in a room. Back home in the city he loved running outside, and there was very little opportunity to do so in a safe way. The following two summers, as you read here, were incredibly difficult. It was very hard to chase after Dovi all day in the country, even with help, and I knew that I could simply not do it again; unless Dovi would go to summer camp, my family's summers up in the country were history. And it hurt to even consider it; Dovi thrived so much upstate with the open expanse of grass and trees with access to playgrounds, swimming, and sensory opportunities everywhere. I knew that I had to find a way to get Dovi into camp.

Spring 2013

Continuing from the last post...

I had known that being pregnant at age 36 would be more difficult than the ones when I was 28 and 31, but I had no idea just how difficult.

I was exhausted - all.the.time. I spent most of the day sleeping. I had no appetite, and little energy. Being off my ADHD meds made things worse. I was prone to anxiety and every little thing sent me into a tailspin. Especially once Dovi had his burn incident and the subsequent social services snafu, I stopped trusting my parenting. If he had the slightest hint of a scratch or a cough, I became hysterical and made a doctor's appointment immediately. The problem was, I didn't feel physically up to taking him to the doctor anymore, so the onus always fell on my husband.

In addition, Dovi's incessant need for sensory input and an endless craving for food - mostly ice cream - worsened the ever-present mess in the house.

Shabbos was the hardest. I had no full-time aide at the time -- a fact that still boggles my mind -- and I had no one to turn on his dvd player, blow bubbles for him, or do the many other things that kept him busy and out of trouble.

Just a boring post. Nothing to see here.

I last left you off with your jaws hanging wide open (nah) at the sight of a positive pregnancy test. I apologize for leaving you dangling like that for over four months (gosh, has it been that long? Crazy!!) I will now pick up the narrative, circa November 2012 (does anyone really care about that? so long ago!)

When I picked my own jaw off the floor, I was left with my head spinning. There was so much for me to do, chiefly find a new high-risk doctor to manage the pregnancy, as the one I had used during Chaim's and Dovi's no longer took my insurance. Lots of research later, I had an appointment in early January. Next came surviving until I took a blood test the next day and had the results. The numbers were good. Several days later I repeated the test, then a week later. Things seemed to be going well. I held my breath. At the six-week mark, the ultrasound showed a nice, strong heartbeat. I took leave from the infertility specialist. It would be four long weeks until my new insurance would kick in, and with my long history of miscarriage I was really nervous. But I had strong faith that it would all go well.

However, having to go off my ADHD meds AND dealing with Dovi day-to-day made things very stressful. I was having a hard time coping. I was also on a very high dose of progesterone, which made me very sleepy. To top it all off, Dovi wasn't doing very well on the Ritalin. As I had suspected and predicted, it was making his sensory processing disorder worse. He became a bit more aggressive, biting staff and throwing things. Meantime I went with Dovi and one of his ABA therapists, Alice, to see an incredible school for Dovi (please do not donate to the Dovi education fund - it no longer exists!). Alice kept remarking snarkily on how much worse he was doing on the Ritalin; it was driving me crazy. Alice apparently is a health nut and all that; but I was flummoxed how she expected me to be able to manage his behavior without any medication. I was blown away by how amazing the school was, and began to frantically scrabble around to find a way to raise money to pay for it. It was a stressful time.

I'm back :)!

Hello ladies and happy summering!

I spent five days going through all of the old posts on this blog and updating the Amazon links. (I'd been wondering why I didn't seem to be successful with the affiliate program and I see why - those links were really corrupt.) With the introduction of the amazon CPM program, a new fire was lit under me to get the blog really rolling again.
'
We're away for the summer at the bungalow colony and life is, thank G-d, a little easier right now. So I'm hoping to put up one post a week for the next couple of weeks. There's some interesting / fun / insightful stuff to write about.

We're heading up to Dovi's residence on Sunday to celebrate his ninth birthday. I have not seen him in a month (though I talk to his caregivers almost daily and they have been posting pictures on Facebook, so I'm up to date on his goings-on), and we're very excited :).

Don't worry, I'll be back soon

My sincere apologies for not updating for such a long time. However there's this little thing called "Pesach" which is actually not so little; the preparations took up all of my time and energy for the past 2 months or so. Finally the dust is starting to settle and I'm getting back into a routine. I hope and plan to try to post once a week so I can continue the riveting, or not-so-riveting, chronicle of how Dovi ended up in this fabulous place he now calls home. I visited him yesterday. He looks great. He lost weight. He's being toilet trained. He's happy. He has big wide open spaces to roam. The staff loves him. I miss him like crazy and visiting him is a massive shlep (I was out of the house for 9 hours yesterday and only spent 1.5 hours of it with him!) but I've been going every 2-3 weeks since I can't bear to be apart from him for longer than that, and he needs the visits (and the kosher food I bring with me). So anyway, hopefully now I'll start posting again. So stay tuned....

On Angel's Wings

And so  in mid October 2012 I got my ducks in a row and went back to the fertility center that I had used to have Dovi to get another cycle started. Immediately we hit a lot of little snags with insurance issues and scheduling and whatnot. But I gritted my teeth and soldiered on. Medications. Patches. Ultrasounds. Bloodwork. Early morning rushes to the city. It all went relatively smoothly aside from some typical bumps in the road. Somewhere in the middle, I decided to start this little blog. On Friday, October 27, I was all set to start Phase 2 of the cycle which meant switching over to a different medication. Suddenly I got a phone call from the Respite House that they had a cancellation and had room for Dovi for Shabbos. I was a little torn, because he had just been there 2 weeks earlier, but we figured, another Shabbos off never hurts. Good thing I took them up on their offer, because after that Shabbos it would take another NINE weeks until they would have another opening, and a lot of not-so-good stuff happened in those nine weeks. But I digress...

Anyway, so there I was sitting in the car on the way to drop Dovi off to the Respite House, when the phone rang. It was the doctor in charge at the fertility center that day. What she said next made my stomach drop.

Weighted Blanket, Compression Shirt, Body Sock, Torso Wrap... for sale

My immediate apologies to my avid fans who are waiting with bated breath for the next installment of the Dovi saga. I know you are going to be acutely disappointed when opening your inboxes tomorrow morning and finding this post instead. Don't worry, the next chapter will come in due time.

However, this post is important to me. I have started to declutter the house and am finding new homes for many of Dovi's specialty items that he no longer uses. The LittleKeeperSleeper pajamas... the oversized size 7 snap onesies... leftover diapers... slowly but surely all the specialty products I had painstakingly researched and purchased over many years are being dispatched to new owners. It's like I'm unraveling and undoing six years of my life. It feels bizarre.

Back in the day I bought all sorts of sensory aids for Dovi, desperate to find the magic combination of deep pressure and sensory solutions to calm the persistent hyperactivity and proprioceptive confusion. Unfortunately Dovi really didn't care for most of the products. They were really costly. The Abiliblanket cost $175. The SPIO garment cost $130. The Southpaw vest, $75.00. and so forth. These things have been sitting in a box in the back of a closet, waiting for me to have a few extra minutes to list them on ebay. It took a few years, but I finally listed them. I am posting the link here in case someone googling any of these terms come across this blog entry and still finds the item up for sale on ebay.

Click here for my ebay page

Thank you, and good luck! I will be back in a couple of days with the next chapter.

Project Sibling, Take One

Small piece of business first: If you're a real-life or online friend of mine, you've already seen and heard that Dovi is doing very nicely at his new digs. I visited him on Tuesday and it was wonderful. If you're not, here's a secret egg: Somwhere in this post I snuck in a photo I took of a very happy Dovi in his new room.
Now, on to the meat and potatoes of the blog.  Finally I will take a deep dive into the next topic I wanted to explore.
But first, a bit of a preamble here, and this will very likely apply to many upcoming posts, if not all of the posts to ever be posted here.
When I first started the blog, I tried to keep it carefully neutral so that much of what I write would apply to and appeal to the general audience. I gave Dovi's caregivers generic names. I didn't really talk too much about the lifestyle and community I live in, etc. But as time went on I realized that a) the vast majority of my audience are people who know where I come from anyway, and b) it was too cumbersome and complicated to remain general and neutral. So while I will still try to make my articles applicable across the wide spectrum of readers, my experiences and stories will definitely be more reflective of my background, which is extremely important to the story. If I don't, I will be too occupied with explaining / apologizing / justifying everything. Of course, I will provide translations, explanations, and context whereever I feel that my points might be misunderstood. But in general, you can safely assume, whereever you find yourself a bit perplexed, that I am coming from a specific cultural background with its own unique societal, social, religious, domestic, and etiquette norms and expectations.

Second Thoughts

Writing that last post took a lot out of me. It was like baring my soul to the world and admitting that I failed. I can no longer handle my severely autistic child and had no choice but to place him in a residential facility. In reality, there's MUCH more to discuss and dissect before such a statement can even be made. There's the years of build up and exhaustion and the toll a child like this takes on the family. And believe me, the decision was not made lightly, and not without a fight from me - a lot of fight. I did not feel ready to take this momentous step until a year ago when Dovi's level of aggression and the incredible strain his presence was having on every member of my family - my husband, me, and our other two boys - became unbearable. Even then, the amount of tears I shed, the number of nights I could not sleep, and the enormous amount of inner work I had to do to process oodles grief and guilt, would fill a book. I was hoping that once Dovi was settled in and I knew he was happy, I'd feel better too. But it took two weeks for the initial depression to pass. I felt like a limb had been amputated. I couldn't do anything those first two weeks. My family was blossoming, Dovi was doing great at his new place, but I was doing terribly. My heart was waging a war with my brain. Even though my brain knew that we had done the right thing for everyone involved, my heart just couldn't let go. Thankfully, I've gotten used to our new normal, and I will be visiting Dovi finally this week, so I'm feeling a lot better.

Home Away from Home

I'll never forget the moment, as long as I live. It was smack in the middle of the most difficult summer ever. It was Thursday night, after a long, grueling week of managing both kids by myself. My husband finally arrived to the Catskills, and I breathed a sigh of relief, knowing he would take over and alleviate some of the burden over the weekend. Past midnight, in a blur of sheer exhaustion, I went to bed. I was about to drop off to sleep, when my husband dropped the most loaded question ever uttered in the history of mankind.
"Say, what are we gonna do about finding a Home for Dovi?"
Um... huh? Say what now?

Take Two

Hello, my old friends.

You're surely wondering why I woke up suddenly and am blogging again.

Let me tell you a little story.

Three years ago when this blog was at its height of popularity, it attracted all kind of readers. Some were other parents of severely autistic children, some were my friends via other online means, and some were random web surfers. The most surprising reader, delightfully, was the editor of a popular weekly magazine which I read faithfully and am a huge fan of (and have written for here and there). The editor was very moved by one of the blog entries and wanted to adapt it for the magazine. I declined, telling her that one day, down the line, I'll want to publish my story in one of the magazines, and I want to do it right - not in a hodgepodge smattering of random articles. Since then I was approached several times by different magazines, including the same one,  about publishing a mini series about raising Dovi. But I had the same answer every time: The time is not yet right. There is no turning point in the story; no conclusion. Dovi hasn't had a miraculous 'cure' or anything. There's no point to writing a series of gut-wrenching articles about how difficult it is to raise a child like Dovi. I'm not going to sugarcoat it; I'm not one of those 'rainbows-and-unicorn' moms  who love and embrace this brand of severe autism and go all goo-goo-gaga about how I wouldn't change anything. (Newsflash: I don't know ONE mom of a severely autistic child who thinks that way. The rainbows-and-unicorn crowd live with the high functioning population. But more on that later.) So what would be the point of writing about it? There had to be a huge conclusion, a turning point that will make a mini-series worth writing.

Well, it took a few years, and there has been a big change in Dovi's life story. Not the kind of change I would have envisioned four years ago when I started writing this blog. It's a bittersweet kind of turning point. If you know me in real life, or even in virtual life, you know what's going on right now. (If you don't know me anywhere off this blog, be assured that everyone is health and well, no need to worry. All will become clear very soon.) So now there is a reason to revive this blog, because finally, there is more story to tell, and there's a cohesive, sequential order to telling the story. I think the story is important, because there are scores of autism parents walking in my shoes, and I think it'll be beneficial to have have their voices heard through Dovi's story. It'll also be boundlessly therapeutic to explore and relive the past few insanely difficult years and put everything into perspective.

Last but not least, I can use the $$$, LOL :). With all the changes going on right now, some of my sources of pocket change will be diminished or gone entirely, so this is my foray back into the world of writing. But in order to make this blog remotely worth it - I'm not even talking lucrative - I'm gonna need your help. When you shop on amazon, consider using my link. Here it is: AMAZON.COM. (or click on the ad below.)

Also, please take a minute every time you visit the blog, to check out the ads crowding the perimeter of this site, to see if any of those stores/sales interest you. I can't have google ads on the blog, which is usually the primary moneymaker of any blog, because they inexplicably closed my account a long time ago and are refusing to reopen it or give any kind of explanation. So at least try to see if any of the stores I'm an affilliate with, are things you can use. The blog will undergo a facelift in the next while so that it reflects the recent changes and is more pleasing to the eye.

And then very soon, I will resume the tale of Dovi's life. You'll have to hold on to your seat belts, because it's quite the wild ride.

Love you, my boy.