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Saturday, February 18, 2017

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.


Sunday, February 5, 2017

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?

Wednesday, February 1, 2017

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.



Thursday, November 10, 2016

MIracles do Happen!!!

Well, Ladies and Gents, *SOMEONE* has been pulling strings for me, because I HAVE MY FACBOOK ACCOUNT BACK!!! I don't know HOW it happened; because this is the 20th time I tried once again to reinstate my account, and I was always met by a brick wall or by some bot that never replied to me. But B"H this time I did reach some real humans with compassion, and I am still speechless with shock that I am able to get my memories back. 20 precious months of memories t hat I thought I would never have access to again. I'm glad I never gave up, and I'm grateful to God and any human intervention that made it possible. Now the possibilities are exciting and infinite; I might just start sprucing up this blog again and think of resuming to write. It'll take a few weeks but exciting things are in plan. Stay tuned.

Wednesday, November 9, 2016

CAN ANYONE HELP ME CONTACT A HUMAN BEING AT FACEBOOK TO HELP GET MY TIMELINE BACK??!!!

Hello all.
Life has been insane.
There's so much to write.. so much to tell.. things have changed so much.
I'm planning to start writing again, in a few months, once some things that have been going on are finalized and I can talk about it.
I haven't logged into this blogger account in probably a year. I found about 20 comments awaiting moderation. While screening the comments, I accidentally deleted about six really good comments. Instead of hitting 'publish', I hit 'delete'. I apologize. So those comments didn't get published, but I did see them.
Now, here's the part where I need your help - desperately.

Thursday, May 8, 2014

I've been published!

I can't believe it's been a year since I had an actual, real update. It's been quite a year. Quite a year, what should I say. Many ups, many downs. One day I shall fill in the blanks.... One day.

For now, I just wanted to mention to those of you who read the local Jewish magazine, that I have a piece published in Family First (mishpacha). It's the first time I've written about Dovi, and it feels really good. I hope I get to connect to some other moms in the same shoes.

I am also toying seriously about writing a mini series on parenting a child like Dovi, based on some of the material on this blog. I will update here when this happens.

I haven't disappeared! I'm just way too busy, fortunately and unfortunately, to write at the moment.

Thursday, December 26, 2013

The Baby Gear Post

Time for something a little different, methinks.

The Dovi saga is still unfolding, with many ups and downs, incredible incidents of Divine Providence, better days and harder days, but thank G-d, things are basically stable at the moment. Dovi is doing well in school, Little Levi is growing by leaps and bounds, and of course, I'm always busy, around the clock, seeing to Dovi's needs and resources and programs and such. Currently, I'm involved in a dozen different projects that revolve around Dovi; setting up a picture communication system, getting him the SPIO vest, organizing SibShops for Yiddish-speaking boys in my area, trying to find a transportation para for Dovi, since the new matron cannot handle him on the bus (we miss the old one :-( ), working along with the Behavior Therapist that will come to our home twice a week for the next few months, and of course, every Sunday is a whole new chapter, lining up all of the people involved in Dovi's care on Sundays - the driver who brings him back from his respite program, the 2 community hab workers (who keep canceling on me) , and so on and so forth, ad infinitum. Being an unpaid Child Advocate for someone as severely behavioral as Dovi is a constant challenge. Keeps me on my toes, big time.

But in terms of Amazon products, I haven't bought much for him the past few months, aside from he usual repeats of the diapers, pullups, a dvd player, backpack harness, slinkies, light up toys, balloons, etc. On the other hand, with a new baby I've been pulling out baby related items from storage and buying more. So I am excited to share with you what products have been working for me. Perhaps someone googling "Baby Swing" or "Exersaucer" will chance along this post and click on a product and end up buying something and I'll have some more Amazon commission to then spend on Dovi's amazon products.... and so it goes in a circle :).

So if this post does not concern you, you can move right on past and continue waiting patiently for the day that my writer's block will lift and my ADD-induced fuzziness lifts, and the constant rollercoaster that is Dovi's resources and arrangements eases up a bit and I can finally fill in those blanks between last May and now, which I know you're patiently waiting for.

Someday.

But for now, here's my Baby Gear review.


Saturday, November 2, 2013

PLEASE HELP DOVI GET HIS MCLAREN STROLLER!.....

Dear Readers of the blog,

I feel bad to do this - but I have to pull out the DONATE button again.
I am desperately in the need of a new stroller for Dovi. The Special Tomato stroller outlived its usefulness - it's too bulky to transport and the five-point harness was too flimsy to keep Dovi safe. He would climb out in the blink of an eye and lead his caregivers on a wild goose chase to catch him. Then the hood broke; we had to dispose of the stroller.
So far we are using an old donated Mclaren Techno, but at 47" and 52 pounds he does not really fit into it anymore. And sometimes he puts his feet down on the ground to stop his caregivr from pushing him...
Even with his backpack harness I am sometimes scared to be on the street with him without additional restraint. When we wait for the bus in the morning he starts dragging me to the corner impatiently and I can barely get him to walk back to the front of our house. I'm always scared that he'll try to run onto the street. We really need a stroller.
So last June I began the process of getting the Mclaren Major Elite stroller funded through Medicaid (it costs over $500)... and thus began the next saga of Never A Dull Moment in our lives....

Saturday, October 12, 2013

Bed Tents for Autistic Kids & Mini Houdinis, Part 3

Soooo eventually, it happened. Dovi managed to rip off a zipper from his 'indestructible' Pedicraft bed. We managed a temporary solution (moving the bed to the wall, putting in a bigger mattress) until the company we purchased it from can come and service it.

Meantime, last I checked this blog, it was getting almost exclusively search hits for bed tents for autistic kids. People are panicking all over; there are no easy solutions, especially since the company selling the Ready Set Bloom tents is temporarily not selling them because the latest shipment was faulty.

Between my recovery from the new baby and the multiple 3-day holidays we just went through, Dovi spent a lot of time at different respite providers the past 2 months. At one of the weekends he managed to break a pop up tent and rip up a Ready Set Bloom Tent. The kid is truly Mini Houdini.

We'll be seeing Dr Cartwright this week to revisit his medication. Risperdal just isnt cutting it. I dont know if we should add Intuniv or a stimulant. Guess we'll leave it up to the doctor.

He is doing very very well at School C - I couldnt be happier than he ended up there. The paras are full of warmth and love, the curriculum is great, and I'm part of a parent body of 11 other mothers in my neighborhood. Had he gone to School A, I would be weathering all sorts of snafus like transportation issues and administrative frustration on my own.

Our new Home Health Aide is a lifesaver. She is available whenever I need her and works extra hours whenever necessary. She loves Dovi and is so devoted to him. I thank G-d every day that things are finally calming down after 2 really difficult months.

The new baby, whom I'm calling Levi on this blog, is a source of joy and comfort, bli ayin hora.

Life is up and down constantly, a true roller coaster; easier days and harder days. My therapist is really helping me get through the tough times, and G-d always ends up being there for me even when I dont see it. I have so much to write. So many little stories to tell. One day.

But for now, let me help those of you who ended up here searching for a solution for your own mini Houdini. I will share with you the different tents his respite providers have:

Monday, September 23, 2013

I have so much to say. So much to write. But no time.
I can't wait to share the incredible series of events that led to Dovi going to summer camp, and how incredible summer camp was for him and for all of us.
I can't wait to blog about what it's like for a parent of a severely autistic child like Dovi, to make a decision to try for another baby, and what it's like to go through a pregnancy, birth, and postpartum period with a child like Dovi at home (or in camp as it was in our case).
And so forth.
But not yet.
Today I just want to talk about some of the recent purchases I made for Dovi.
Before I do, just two quick updates: The new school - School C - is PERFECT for him. He fits in there like a glove and he has an incredible teacher and paras. I'm so glad we made the decision when we did. I thank HaShem for that.
Also, I did not take Leticia back as Dovi's Home Health Aide after the summer. I had a lot of issues with her; we did not get along - major personality clash - and i realized that with a new baby I would need a lot more hours than she was willing to work. HaShem sent an amazing, amazing girl whom I'll call Charlene, who has been an absolute lifesaver for us, especially now with so many 3-day YomTovs. We would not have survived without her, seriously. She's a major help, willing to work hard, punctual and pleasant - a true Godsend.
Anyway, on to the purchases.

Sunday, August 18, 2013

Fabulous new tactile sensory toy I Discovered.

Two weeks ago, Binah Magazine ran  feature on Sensory Toys. A large part of the article was a result of an extensive interview I had with the writer; many of the toys were ones that I had profiled here on the blog. It was interesting to see how she put it together. There was one toy, however, that I had not heard of or thought of, and I immediately ordered one from amazon. It's really meant as a 'tummy time' mat for younger children. It turns out to be an amazing sensory experience for Dovi.


Dovi loves splashing in water. This mat provides him with a safe, dry way to punch and pound and squish at water. Unfortunately, on the first day he already bit into the plastic part which is inflated by air, and I am afraid Chaim emulated him by biting into the water part - in any case, it's already sprung a leak, and while I closed it with Duct tape, it's not a lasting solution, so I already ordered 2 more such toys off Amazon, one which I might donate to the mini day camp end-of-summer program Dovi is fortunate to be attending now between camp and school.

( by the way on the amazon page, for some reason, you'll see a doll featured. Dont fear, it's the water mat. Also, it's hard to figure out how to open the valve to fill it with water. You have to push the cup in and down slightly to access the small opening.

Wednesday, July 24, 2013

It's a Trifecta!!!

On Sunday we went to visit Dovi at summer camp. He is so happy there, and well cared for, and it took him a minute to recognize us but he was thrilled! I came home all smiles, knowing he's in the best of hands, and ready for the next big adventure...
...which didn't take long in coming. The very next day, on Monday, I gave birth to a little boy! Chaim and Dovi now have a little brother. And with this announcement, many things will become clear to you readers: Why it had gotten so much more difficult to care for Dovi - I was physically incapacitated and mentally drained.... And that is why Dovi went to summer camp, and lots of other little things between the lines were as a result of being pregnant basically since I started this blog.
And which is why I will probably have no time to update the blog anymore, more or less.
But I had to share this wonderful news with you, my dear readers!
Oif Simchos!
(P.S. He was born a few hours after His Royal Highness Heir to the Throne Prince George Alexander Louis :) )

Wednesday, July 17, 2013

Summertime and the Livin Is a Bit Easier....

I wasn't going to post this since I'm loathe to use the blog in the present tense, but I think I owe my Dovi fans an update. Boruch HaShem, with massive twists of Divine providence, Dovi is in sleepaway camp!!!
One of the special needs camps we had been considering for him was not going to open for this summer, and at the last minute, it did. I was a little nervous before the camp session about his safety and the compatibility of him with the camp staff / program, but thank G-d, it's proven to be just what the doctor ordered. From the photograph they send me every week it is clear that he is thriving there and having the time of his life. he is being loved and taken amazingly care of and having a blast. It's scary to see how relaxed my family is without him around, which has caused all sorts of anguish and pain for me as I reconsider just how deeply his autism and hyperactivity affect my home and family. The house is spotlessly clean, Chaim and my husband are so calm, there is supper on the table every night, no counselors and aides traipsing in and out... it's a welcome respite from the strain and stress of the entire year. It's painful to think of what our lives would look like without Dovi's autism and hyperactivity, and it's frightening to think of how we'll be able to continue handling it as he gets older and bigger. HaShem will have to help, He's helped us til now.
But for now, I'm simply relaxing, taking care of myself, paying Chaim extra attention, and taking all kinds of steps within the home to make life with Dovi easier when he comes home. I took apart his clumsy bedroom furniture and instead put in a small bookcase and kiddie table, a timer for the light and a safety gate for the door. I want to introduce him to playing in his room so that the rest of the house stays cleaner and more organized and the mess gets confined to his room. I want to spend my spare time this summer looking at the Son Rise videos and trying to implement some of it when he comes home, G-d willing.
The photos of Dovi in camp are priceless, but I don't feel like posting them here. I'm so grateful to HaShem for making it work. I can't imagine what I would do with him all summer with so many fewer resources - no Sunday program, no Shabbos volunteers, fewer res hab counselors available, and the crazy heat outdoors. Dovi goes swimming every day, has big wide open empty spaces to run around in on the grass, and is getting top notch therapy and schooling even up there. I miss him like crazy - I cried myself to sleep the first few nights of him away - he's never been away for this long. But I know it's for his good, the good of his family, and he's loving it there and is loved and cared for by a devoted staff, which makes the separation easier. Visiting day is on Sunday and I can't wait to see him. I wonder if he'll recognize me!
Hope you're having a good summer yourself!!!


Friday, June 28, 2013

Strollers for the Older Autistic Child Revisited

Unfortunately our experience with the Special Tomato EIO stroller did not work out as we had hoped. The hood has broken, the stroller is dirty, it's very hard to fold/transport, and the biggest issue is that simply cannot seem to keep the harness tightened, therefore Dovi climbs out of the stroller instantly. It's a disaster. For now, we're back to the old trust Mclaren Techno XT, which at least is keeping him contained, but he is way too big for it and his legs reach the floor. We are now in the process of working with a Medicaid Equipment provider to get us a Mclaren Major Elite. It doesnt look wheelchairish, will fit him right, and is easy to fold. Hopefully I can get the scrip from the pediatrician asap an they can get to working with Medicaid o cover it. I will keep you posted...

Thursday, June 13, 2013

It's Dovi's Party and I'll Cry if I Want To....

To my dear beloved special Dovi,


In all likelihood, you will probably never read this letter. It will take a miracle for you to ever learn to read. I have learned to stop expecting miracles. I am still waiting for you to call me “Mama.” It might never happen either.


This Shabbos is a very special day. It is Totty’s and my seventeenth anniversary. Five years ago, on our twelfth anniversary, something incredibly special happened. I’ll never forget that moment as long as I live. After 9 months of pregnancy and 13 endless hours of labor, a writhing, screaming, gorgeous, pink, healthy 7 pound little boy was thrown onto a blue sheet that had been draped across my belly. I cried for five minutes straight. I couldn’t believe that after struggling with infertility for 9 years, and struggling to raise a head-strong preemie for almost 3 years, I was granted a second chance at making things right. A little brother for Chaim. It was incredible. Totty and I looked at each other and I commented, “How amazing is it that on our twenty-fifth anniversary we will celebrate this baby’s bar mitzvah?” The future was bright and exciting, the possibilities open and endless.


Little did we know.

Thursday, June 6, 2013

Shoutout!

Shoutout to Dovi's Respite House counselors who showed up tonight and took him to the wedding of a third counselor. They gave him the time of his life, as he rarely goes to weddings. I can't wait to see the pictures! [waves]

Wednesday, June 5, 2013

Best Tactile/Proprioceptive Sensory Toy EVER

Move over PlayDough, balloons, rice, sand.... Welcome GAZZ-IT / FLOAM.
It's cleaner, more fun (cuz it's stretchy), never dries out, doesnt leave such a mess, and best of all, Dovi doesnt eat it, or swallow it. And even adults enjoy the sensory experience of rolling and kneading this compound.
I bought the GAZZ IT locally (and you can find it at Dollar Tree), but on Amazon I found it as PlayFoam.
Fantastic for OT and sensory touch.








   


Tuesday, June 4, 2013

Has Anyone tried the Son-Rise program?

If any of you are an autism parent, I am curious if you have tried the Son Rise program?
I heard so much about it but cant imagine how I can implement it in practical terms. I don't have spare room in my house, and Dovi does not sit still. Plus, I hardly have any one-on-one time with him so I don't even have when to implement such a program. In addition, the training is costly and involves traveling. I wish there would be a way to train long-distance via Webinars or DVDs.
I'm curious if anyone has tried it - specifically if you have a really low functioning child like Dovi. Please let me know if you did. Thanks.

Monday, May 27, 2013

The Future of the Blog

I started this blog in October for a few reasons.

1. I had given up watching shows online and wanted to do something else to fill my time.
2. I knew I would need to raise funds for Dovi's schooling and thought a blog would be a good fundraising vehicle.
3. I was bursting to write about Dovi and didn't know where to begin.
4. I wanted to help other parents desperate for guidance and resources.

The blog has basically come full circle. I have told Dovi's story. All the ups, the downs, the positive experiences, the difficult ones. The story is, of course, far from over. Dovi is not even five years old yet. We don't know what his future holds, and it scares me often. There are days that pass quietly, with all his resources in place, and days where everything implodes and I simply don't cope. The fact that he is getting older, heavier, and more stubborn, and life with him will only get harder, not easier, is terrifying. Of course, we are not giving up hope that some day his behaviors will improve, his language will kick in, and life with Dovi will be easier - or at least tolerable - but for now, it is what it is. A life-changer. An ever-present monkeywrench. We love him for who he is, not for who he was or who he can be. Just for being precious, lovable, innocent - and the big challenge of our lives which may likely be the sole reason of our existence.

So let's analyze which of the four objectives of the blog have already been accomplished and which ones failed:


Friday, May 17, 2013

Recent toy purchases and other attempts at demystifying the Sensory Puzzle

Becoming the mother of a high-maintenance, high-energy, hyperactive autistic child has changed me forever. Some changes are positive, and some negative. It has definitely altered me as a person and redefined the roles my husband and I play in this family. Raising Dovi is an extremely stressful endeavor and sometimes I wonder if I'll buckle under the weight. When he is home, I am always on edge, trying to keep one step ahead of him. When he's away on Respite weekends, I miss him and feel guilty and feel very sad that we even have to send him to Respite weekends. But of course, I also breathe a little and destress from the constant heavy burden that keeping Dovi safe, healthy and happy entails.

Despite having so much help and so many resources in place, often the carefully woven net falls apart. Our two weekend respite providers both had no vacancies for the upcoming month and it left me scrambling to find additional help in the form of community volunteers and res hab girls. Then there was a snafu with his Sunday program; the two community programs both wanted the other one to take Dovi for next year, leaving me in tears and panic about the many long Sundays of the 2013-2014 year. Additionally I'm kind of stressed about filling the various holes that will crop up this summer with many of the girls going away for the summer or taking on summer jobs. So being Dovi's unpaid Service Coordinator and Advocate is one of the many hats I have to wear from time to time.

Another of the many hats I had to don in the past two years is the one of Detective. With a nonverbal child who displays bizarre behaviors, life is always a guessing game. Why is he behaving this way? Why is he crying? What does he want now? Whenever Dovi is on a new medication, it's a guessing game to figure out if his behavioral changes are medication related, autism-related, or somthing-else-related. Meeting his sensory needs is also a constant guessing game. Dovi is a whirlwind of motion at all times; he'll jump onto tables and couches and counters, spill stuff and smear it everywhere. You need the energy of a teenager to keep up with him, a lot more than that of a tired 30-something mother.

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