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.

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....

Bed Tents for Autistic Kids & Mini Houdinis, Part 3

I am editing this post on 3/6/2017.

Despite whatever content this post contains, I am finding that this post is first in search results because of the desperate search by parents of elopers for solutions for their autistic kids.

While the only thing that worked for Dovi was the Pedicraft bed, the Privacy Pop Bed Tent works for a lot of children who are not extra severe and aggressive.

Here is the amazon link:




And now back to the regular content of this post.

**********************************************

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:

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.

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.

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 :) )

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!!!

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...

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.

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]

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.


                                   

   

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.

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:

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.

This is one topic you probably do not want to read about.

The topic I am going to discuss now is very unappealing, unappetizing, and downright disgusting. It is, however, a very necessary topic for parents of autistic children, and of other intellectual disabilities and intense sensory issues. It's something I had to contend with for a while until I finally found the solution and I am eager to share it with others. If you are not dealing with this yourself, you might just want to skip it over, for as I said, it's unappealing, unappetizing, and downright disgusting.

When Dovi was first diagnosed and I was talking about it with some of my fellow special needs moms, I kept hearing how lucky I was that Dovi did not engage in the biggest nightmare for autism parents: Fecal Smearing. Dovi had no interest in the contents of his diaper, and although he occasionally did make a mess of things if he happened to poop on the floor or bathtub, it wasn't a regular habit and I didn't worry about it.

Until the day came when it became a fairly regular habit.

Strollers for the growing special needs / autistic child

I started this blog in October 2012. Based on where we are in telling Dovi's story, we've almost come full circle. I have only 3 or so months of material before we hit October - and nothing of note has happened since then, aside from what I've thrown out between the lines. I'm also reluctant and leery to keep this blog open as a present journal; my focus here was to help out other parents of special needs children, specifically autistic ones like Dovi, with our resources and ideas and product reviews. So while I'm not closing the blog soon nor stopping to write, I am definitely winding down with material left to tell.

But there are still two major purchases I made this year (besides for the incredible Pedicraft bed) that I would like to talk about, and after that, I will reexamine the future of the blog.

For now, I'll pick up the thread of the narrative in August of last year.

An Update on Dovi's School

Today I went with Dovi to School C for some intake evals. I have to say that I did a 180 on my impressions of the school. Somehow, seeing how happy Dovi was in the loving, warm environment, and how much everyone already adored him, melted my heart. The clinicians were able to engage him, and they all really knew what they were talking about. It was good that I took along Dovi's TABAC therapist who was able to talk to the educational/behavior director about Dovi's specifics and progress. I left a lot happier with our decision. School A is a distant memory; I think Dovi will fit right in there and will thrive nicely, with G-d's help.

It will still cost us, but only about a quarter of School A. Hopefully we'll be able to swing it financially (they're a lot more laid back about the money and don't hunt you down like School A does).

I'm happier than I've been in a long time; I'm so glad the tension-filled decision has been made a month ago and that I feel so much better about it.

Summertime, and the Livin' Ain't Easy, Take 3

You may be wondering if I have a photographic memory, churning up these posts about past years and months down to the last detail. But in truth, I spend hours combing my Facebook archives for my old status updates in order to formulate the entries on this blog. Of course, I also remember these events in vivid detail, but I do need to reread my old posts to firm them up. Whenever I do this, I am stunned just at how much I managed to undertake, implement, execute, and survive. Where did I take strength to do all this? I marvel. I don't know. Seriously.

Reading just how much energy, effort, and sheer action I had to put in during the seven weeks we spent at "Kiamesha Hills" leaves me breathless and exhausted, and I'm sitting down while reading this. I honestly do not know how on earth I undertook such a daunting, strenuous, overwhelming task as this. And I am just as honestly admitting that I probably do not have what it takes to do it again. I'm afraid that by and large our 'country days' are probably over, unless Dovi ends up being able to go to summer camp, or staying with a respite family in the city for a couple of weeks. Doing what I did last summer - being there full time with Dovi without our usual roster of respite helpers - is not something I think I can do again.

It was that hard.

PROGRAM NOTE: RE: COMMENTS

I realized I've not been getting comments so I lifted the restrictions against commenting only as a registered user. Anonymous people can now comment. However, I will be monitoring the comments so no spam can get through. So feel free to start commenting again if you're a real person posting a relevant, non spam comment. Thanks!

Hashem is Here, Hashem is there, HaShem is truly Everywhere

Continued from the previous entry:

The first phone call on that morning, a week after I had surrendered it all up to HaShem, was from Zehava. Back from Israel from her 2 week trip, she was fully on board to help me find therapists for Dovi for the summer. All was not yet lost. She would still speak to all the other branches of TABAC and try to figure something out for me. I breathed a bit easier. So all was not lost after all.

The second phone call was even more exciting. One of the phone calls I had gotten from my ad from the Hamodia had been an unremarkable, non descript, slightly nasal sounding  message with a local phone number. "My name is Rachel [garbled], I'm a SEIT, please call me at  _____." I returned her call and got an answering machine and promptely forgot about it, assuming it was someone who thought it was a city job. To my surprise, almost a week later, Rachel called me back. She lived in Israel and was planning to be in the Catskills in the summer. She had a bilingual masters degree and was employed with TABAC - she had worked in the main headquarters until she had moved to Israel. She had a lot of experience with low functioning, non verbal kids like Dovi. One of her older sisters also worked at the main headquarters and her other sister was almost getting her masters and would start working after the summer. Her younger sister did Res Hab and was available in the summer.

WHAT????

It sounded like a dream, too good to be true.

Summertime Livin' Take 3

I hope you're all having a wonderful Pesach.

Things worked out really nicely around here, Boruch HaShem. I had been extremely worried how I would manage to bring in Pesach, and how Dovi would behave during the seder. In the end, he wasnt feeling well for about a week, so he was well behaved enough for me to do all my Pesach prep and he slept through the sedarim. He's on the mend now, Boruch HaShem. I had a nervewracking few days when he was supposed to have been well already but was still very drowsy and sleeping for way too many hours. I finally figured out that the increase in his meds, which coincided with his week-long virus, was not good for him and with his doctor's instructions we scaled back until we will see him again after Yom Tov. Today we went to a farm where Dovi delighted in touching the sheep - and then tried to climb into the pen! We had to strap him back into the stroller, real quick....

Before I continue on to the next topic, which is another incredible Divine Providence story, I'd to close out the Home Health Aide series. The third aide sent by the agency, Leticia, turned out to be a good fit. She is extremely devoted to Dovi, who loves her back. Unfortunately, she doesn't really like doing housework, so we did lose our 'clean house' that we were used to during Danuta's time. She is also late a lot, and spends a lot of time on her Iphone. But on the plus side, she does a great job feeding Dovi and giving him baths and getting him into pajamas. While we sometimes have minor issues or arguments, we get along pretty well and she is really not a bother; our family can go about our business while she's here, and she doesn't ask for anything. It's great to have someone in the house during busy times like Yom Tov when there is no school. One of the best things that came out of Leticia's presence is that Chaim learned a perfect English around her. All in all, she's a lifesaver; we feel her absence keenly on Sundays (she only works Monday to Friday) and on the few legal holidays that she actually takes off, like Thanksgiving and Xmas. I am grateful every day for the existence of homecare for children with disabilities and that it's relatively simple to set up. If anyone reading this lives in New York and has a child with a  disability and a pediatrician that will gladly work with you to request homecare, message me for the phone number of the agency we use.

Anyway, moving on....

Have a wonderful Pesach everyone!

Just wanted to wish you all a wonderful and peaceful Yom Tov. Also, I'm sorry to let you know that I will have to change the settings on the blog, due to a massive influx of spam comments. You will no longer be able to comment anonymously but will need some kind of ID to comment. I'm sorry if that impacts anyone, but I have no choice; I get dozens of spam comments daily and have to put a stop to it. Thanks for understanding.

Have a fabulous Pesach everyone!

Home Health... Homegirl?

Story # 2 in the Home Health Aide Chronicles

On Tuesday, Ophelia informed me they were sending me someone temporarily for 2 days. A permanent homecare worker had been found, and she was going through the registration process and would start on Thursday. The temp was young and capable, said Ophelia - around my age. She was a former public school teacher. I braced myself warily - at least it wouldn't be the disaster that was Danuta and at least it would last only two days.

At 4:30 the bell rang. Who's there? A hesitant, quiet voice told me her name was Ms. Yvonne Murphy. In walked a perfectly coiffed, well dressed, tall, very shy woman. She was wearing a crisp white shirt, black slacks, and her hair was done up like she was heading for a party. She had biracial features but was light skinned (not that any of it matters; I'm just describing her). She looked, for some reason, extremely uncomfortable to be in my house. I groaned inwardly. She did not look dressed for a homecare job.

I asked her to sit down and described Dovi to her. She informed me that she was starting a live-in job the next week, and when she had gone today for her registration she was practically begged to do a 2-day job until my permanent worker could arrive. Therefore she wasn't dressed for the job, but tomorrow, she promised, she'd come in a more comfortable outfit so she could be more helpful. I showed her the documentary I made of Dovi and she sniffled. It was a little awkward; she was around my age, sitting around my pristine kitchen (Wendy had been there that day), waiting for Dovi to come home. So we made small talk.

Home Health... Hindrance or Aide?

Let's continue with some more upbeat posts, shall we?

As I promised you in the previous post,  the Home Health Aide saga has some rather amusing moments. So let's begin.

I had heard for a while about the possibility of getting a homecare worker due to Dovi's disability. I was wary, however; I didn't feel like having an aide underfoot every day. After the constant flow of EI therapists and then Res Hab counselors, it was a relief to have our home and privacy back. But I realized that we sorely needed that extra bit of help at the end of the day. Dovi came home from the counselor between 5:30 and 6:00 and tended to destroy the house until my husband came home from work at 6:45. I always felt bad for my husband that he couldn't sit down and eat a decent dinner because he wanted to see Dovi in bed first - it's hard to eat with him jumping around and climbing onto the countertops. It would be a dream to have someone be with Dovi for that hour, keep him occupied in the bath, and put him in pajamas, while my husband and I ate dinner. Then, the aide could do some light cleaning - Dovi's messes, of course, and maybe his laundry and a little grocery shopping... It would be amazing.

But I knew that it was too good to be true, in all likelihood; I have had plenty of elderly relatives who had aides and it's a major hit-or-miss. Many of them are lazy, some of the steal, and some are annoying. It's rare to have a perfect fit. The likelihood of finding someone who was both good with kids and enjoyed cleaning was slim. I made sure to specify to the caseworker at the agency what I was looking for. It took only 2 days and they found someone for me. Her name, they said, was Danuta.

The initial visiting nurse had asked me how many hours a day I needed help. Since Dovi usually came home at 5:30, I told her from 4 to 8 pm; the aide could clean up Dovi's messes from 4 - 5:30 and then take over and play with him until she would do his supper, bath, and bedtime, and then finish cleaning up after him. I waited anxiously at 4:00 to see this mysterious Danuta and hoped she wouldn't be too annoying.

At Long Last, the Breakthrough We Thought Would Never Come

After those 4 awful days when my ability to cope was tested to its limits, things quietly, subtly started changing. Perhaps it was my new attitude, thanks to the incredible talk by Rabbi Feiner. Perhaps it was HaShem finally having mercy on me and my family and starting to turn our wheel upwards. Whatever the case was, over the next few weeks, there were some surprisingly positive changes in my house.

My apartment passed inspection, and a huge burden was lifted from me. I had been living with a lot of stress for months anticipating the inspection, and thank G-d it passed easily.

The next week we went with Dovi to check out Otsar. I was extremely impressed with the school. Although the teacher of his classroom was not bilingual, I was sure i would be able to teach her some basic Yiddish words. They had a fantastic playground on premises, sensory therapy daily including an amazing sandbox, lots of toys to play with, custom made breakfast and lunches, and so forth. I was a little uneasy though; I knew Dovi would not make a lot of progress in this environment, as they only had 1 1/2 hours of ABA therapy a day and he did not need 'circle time' as he did not socialize with other kids at all. When I spoke to a parent at EEC I discovered that their curriculum was pretty similar (minus the ABA and sensory therapy) and I couldn't see Dovi managing to navigate an educational unit like they did at  Otsar. I was also worried about the long bus ride twice a day and the language barrier. I knew that the only reason to switch to Otsar was practical; he needed a normal center-based program where we didn't have a problem every time a therapist was absent. I informed them that we were in for the 2012-2013 school year, but I decided not to inform TABAC just yet.

The most difficult decision I've ever made, so far

There are, generally speaking, three types of special needs parents. The first type are the extreme optimists, the movers and shakers, the ones that leave no stone unturned and spare no expense to get as close to a cure as they can for their child, and to help their child achieve his or her potential to the max. They don't factor in the toll it takes on their family, their finances, or their own sanity; their disabled child is foremost in their lives and takes precedence over anything else. I'll call this type "A". At the total opposite end, you have "C", the ones who are extreme realists; they know that there is no real 'cure' for their child's disability and they don't want caring for their child to impact their family severely. These parents don't exert themselves too much for their child; they get as much help as they can, sending their child to every respite program, summer camp, send their child to the cheapest/free school program, even if their child will not make progress there. Their sole aim is to keep their child comfortable and happy while trying to continue their lives as smoothly as possible. They don't want the rest of their children to suffer too much, and/or they are not capable emotionally and financially of throwing themselves into the width and breadth of focusing on this one child at the expense of the family's general sanity. Then you have the "middle of the road" kind of parents; the ones who do extensive research into their child's disability and try many different things, but they are realistic about the impact it has on their family and on their financial and emotional resources and don't overextend themselves to the point where it affects their lives into exhaustion and depletion. I'll call this type "B".

I have come across many As, Bs, and Cs even before Dovi's diagnosis. I have found that most special needs families start out as Bs, and eventually the toll on their family is too much and they slide into Type C just to survive. I've also met a few As; the chidren of A families are the ones who go the farthest, but many type A families eventually crumble and must slip into B or even C mode - especially if their child does not end up making as much progress as they had hoped.

The 2 craziest weeks of my life, Part 2

Continued from the previous post:

As I saw Chaim playing in the hallway, I was disturbed to notice that his gait was extremely weird - his feet were wide apart and he looked uncomfortable. Before heading for the shoe store I took him to my mother to check what was going on. I did not like what I was seeing. There was considerable swelling in a pretty sensitive area, which was obviously making it difficult for him to walk. I called his pediatrician and asked if I could come over. Luckily, they were able to see him, and the pediatrician's office is about 2 blocks away from my mother's house. On the way to the doctor I checked the shoe store - closed. I wasn't happy, but it turned out to be for the best. The pediatrician checked Chaim and his eyes opened wide in horror. "You have to see a urologist immediately," he said.

Um. What? How could I see a urologist immediately? It was 2 p.m., I was laden down with shopping bags, starved, Dovi was due home in an hour, and there are no urologists in my neighborhood. The front desk staff set to work immediately burning the phone lines. They set me up with a urologist at Mt. Sinai Hospital, called the emergency room, and told me to go right away.

I felt cold and hot all over. This could not be happening. WHAT????

The two craziest weeks of my life, Part 1

I apologize for the long lapse in posting. I started writing this post weeks ago, but then events happened which were larger than life, overwhelming and all encompassing and putting things like blogging on the back burner. I was ready to put this blog to bed for good. But thanks to the sweet, encouraging support from you, my faithful readers, I pulled out the half finished post and completed it for your reading "pleasure".

***

I'm about to detail two weeks, the two hardest, zaniest, unbelievable weeks in my life. (Note: that is, until the past month, which were emotionally infinitely harder.)  It starts on January 16 2012 and ends on January 29, 2012. You know how you can be so incredibly, insanely busy, that you can't imagine just one more thing cropping up on your to-do list? And then something even bigger happens, obliterating everything you're so busy with, forcing you to pay all your attentions and energies to the crisis at hand? (I just experienced something similar; my school choice crisis went on the total wayside with the unfortunate family tragedy we had.)

We absolutely hate when that happens. But sometimes it's necessary, to help change our perspectives and focus and realize what's really important in life and what's just trivial.

WOW.

I'm overwhelmed by the amount of supportive comments to my previous entry. I want to thank you all. I didnt know how I have such a huge anonymous audience who are actually genuinely interested in hearing more of Dovi's story. And there is still so, so, so much to tell. So I've decided to still continue the blog. I'm not sure when - it might have to wait 'til after Pesach - but bli neder, I am not retiring the blog yet. Thanks so much for all the support.

Still in limbo

I'm debating the future of the blog .I have completely lost my initial excitement to write; it's becoming tedious, especially as the next few entries are emotionally wrenching. I'm not sure I'll continue; it's not bringing in revenue, and since we're probably backing out of the super expensive school - we simply cannot afford it - and donations are not coming in anyway - the blog is not as necessary anymore as I thought. I am leaving it up here since it is definitely helping many people who stumble across it. But for now, just stay patient as I figure out what I'm planning to do. I might write new entries, I might not. Check back once a week or so if youre not on the RSS feed, and let's see what happens. My writing muse might return; it might not. Who knows.

Extending the Hiatus

I must apologize for my extended hiatus. But unfortunately I must extend it further. Between the horrific recent accident which claimed the lives of my cousins, the ongoing drama-saga of Dovi's school for next year,  and Pesach cleaning - in which I am severely behind - I am barely coping with the day to day. My brain is not working right now and I can't write. I have already written the most powerful posts and this blog has accomplished quite a lot. I will still be posting more entries, but I have to ask for continued patience. It is much appreciated.

Toys I Recently Purchased

My 'bombshell' posts will have to wait. I'm in a unique kind of hell known mostly to special needs parents, but not totally; many neurotypical parents go through the same: School Choice Hell.

If you remember, I posted 3 months ago about an incredible school Dovi was accepted to, and I was so excited and started begging for donations. Well, it's crazy. My husband and I realized that we will simply not be able to make it financially and started looking into other options. Right now I'm in limbo - almost purgatory if you will (although there's no purgatory in Judaism) - trying to decide between 3 different options. Each option has major, major pros and cons. Meantime my husband went overseas for the Lizensk'er yahrtzeit and I'm trying to force myself not to focus on this subject which is boring me to death and driving me bananas. I'll have to sit down with pen and paper and write down all the pros and cons and try to get some clarity. AHHHHH!!!!!!!!!!!!!!!!!!

So let's talk about something more lighthearted: toys.

Just as this whole school debacle started, I asked Dovi's therapists for a copy of his most recent report so I could have it on file before my IEP/aging out meeting. I was startled to read that they wrote that he had little interest in playing with toys. WHAT??? At home he LOVES toys. I spoke to them and realized that they had a motley collection of outdated toys. Dovi needed new things. So I bought him a bunch of new things (reimbursable through my MSC) and will send them to school tomorrow. Each of these toys is a HIT - he loves each of them! I will post links and explanations to the five toys I got today.

Don't worry, I'll be back

I just want to assure you that I have not abandoned the blog. It has been extremely hectic around here with Purim and Pesach prep and lots of other things going on, plus my Internet connection has been very spotty for almost 2 weeks now. But don't worry, friends - I have several bombshell posts that are half-written and will most definitely IYH be posted within the next few days. Hang in there, folks.

Stage 5: ACCEPTANCE (a.k.a. The End of the Pity Party)

When I was a young girl - 18 years old or so, my first cousin had a baby boy. Mazel Tov! The trouble is, I had found out about a week before that she was expecting. The baby weighed under 2 pounds. He survived. He is now 18 years old. He is doing fine basically - except he has something called ROP, Retinopathy of Prematurity. In other words, this precious boy is blind.

His parents are the most incredible people I have ever met. They spared no effort and no dime to get the best care for their son, and to help him reach his full potential. He was partially mainstreamed and is now in a special ed yeshiva. I was invited to his bar mitzvah; it was a tearjerker. He is blessed with a melodious voice and a gift for music. He sang a moving song thanking his classmates and family for all their help. He delivered a bar mitzvah pshetl in Braille. It's an event I won't ever forget.

Utilizing his experience in the special ed field, my cousin's husband soon became the director of EEC, the local special ed school. At some point - I think at their second son's bar mitzvah - I told my cousin about Dovi. Ever the composed, dignified person who keeps her emotions in check, she didn't react visibly. But from then on she always had me in mind when there was an event she thought I would benefit from. She invited me to the annual EEC Shabbaton, and I was positively dying to go - but it clashed with the aufruf of my sister's chosson, so I had to skip it. But about a month before that Shabbaton, my cousin called me with a different offer. EEC held support events every few months for their parent body, and even though I wasn't really part of their parent body, she thought I would benefit from attending. As soon as she told me the name of the scheduled speaker, I jumped!

Stage 4: Depression (a.k.a. Longing to be Normal)

I have written about the Five Stages of Grief and how it relates to Special Needs Parenting. I've gone through Denial, Anger, Bargaining (Guilt), and now I'm on to Depression. But I was never really depressed about the loss of Dovi's skills, and the loss of the child he was. Not depressed. Upset, angry, devastated, sad. But I was never unable to continue functioning because of it. But truthfully, not every person who goes through a loss goes through real depression. I don't know if there is a better word to describe the emotion I want to use instead of depression. It was still a kind of Anger, I suppose, but it probably falls under the umbrella of depression. The reason I'm writing about this now, is because the next post after this will be about Acceptance. At the time of this narrative, January 2012, I had still not really accepted the situation. Accepted the reality of it  - yes. I was not in denial. I was doing everything I could to help Dovi, and to help our family survive. But I had not yet reached Acceptance - as in accepting that this is G-d's will and His plan for my family and my life. I was still resentful and fighting it.

The underlying issue, the reason for my resentment and inability to accept this was all Divinely Ordained was an old, festering wound; an issue I had been struggling with since I was a teenager; a coveted status that seemed out of reach. I was longing to belong. To be normal. To be like everyone else. In the cookie-cutter society where I live in, there is little room for individuality. If you're not exactly like everyone else, you stand out like a sore thumb. And "exactly like everyone else" means: Married by 20. Mother by 21. Mother to at least six kids by 40. All kids well rounded and 'normal'. And of course, being a whiz in the kitchen with a clean house, kids neatly dressed and pressed, and having no other aspirations beyond the kitchen. If you're 'differnet' than any of the above in any way, you're, well, you're a sore thumb.

Kitchen gates, Refrigerator Locks, and Sensory Bins

As you've been reading in the past few posts, last winter I took many steps to ease the burden of caring for Dovi. We had res hab counselors, monthly weekend respite, ambulette transportation to school, volunteers on Shabbos... things were definitely calmer. But there is one major remaining issue that makes life around Dovi extremely difficult - unbearable even, at times. This past Shabbos was so bad in this respect, that my husband and I had a rare argument on Saturday night.

Dovi's high sensory needs and my inability to set and enforce limits in the wake of his soulful eyes and begging hands wreak havoc on the house. He has a constant need to throw things, pulverize things, smear things... a combination proprioceptive/tactile need. It's endless, constant, and superfire rapid. 

This past Shabbos, in the span of 1 1/2 hours he destroyed 2 bags of confectioners' sugar, a package of pancake mix, a bag of rice, several rumballs, and ground nuts. It takes him sixty seconds to rip into it, spread it all over the kitchen and dining room, and then head back for more. When he was done with the  powdered stuff, he took to the solids: multicolored straws, baking paper, rubber gloves, plastic spoons. By the time my husband came home from shul, it looked like an earthquake had hit in a grocery store.

And the 3rd Angel was the Best of Them All

There is an old Yiddish expression, "דער אייבערשטער גרייט אן די רפואה פאר די מכה" - G-d prepares the remedy before He sends the malady. In April of 2010, just before Dovi was diagnosed with autism, one of the biggest special needs organizations in New York established a Respite House. I read the announcement and saw the ad and thought that this was a wonderful thing for special needs families who need respite from the burden of caring for their disabled children. Little did I dream that I would one day be among those grateful parents.

When I went to the first support event, one of the other autism moms mentioned the Respite House to me. I thought it was an incredible entity but did not think it was something I needed; Dovi was a handful, but I wasn't ready to send him away for weekends. But a scant few weeks later my baby sister got engaged, with the wedding slated for February. I knew I had to find somewhere for Dovi to stay for the Shabbos after the wedding, since we would be invited to eat all 3 Shabbos meals and he obviously couldn't come with us as he wouldn't behave. So after Succos was over and life settled down a bit, I began the process of applying for the Respite House.

I called the Respite House and left two messages but got no answer. In desperation I called the cell phone of the director, Cheryl. We had a nice, long conversation about Dovi. I even sent her the video documentary I had put together of his life from the day he was born up til his 3rd birthday - every word he had ever said, and the subsequent loss of skills. At first she was confused how I considered him autistic, until I realized she hadn't seen part 2! She sent me copious paperwork to fill out. As part of the application Dovi had to have a PPD shot, get his immunizations up to speed, and a well visit. That visit to the pediatrician was a nightmare. Drawing blood for Dovi involved 3 people holding him down. I also asked for a PANDAS blood test, which took the manpower of 3 people to get done. Dovi ran out to the waiting room screaming and bleeding. It was an absolute nightmare. The doctor also had to fill out a whole list of OTC medicines that he was permitting Dovi to be given. In short order I sent in the paperwork, and put it out of my head.

And the Second Angel was Disguised As A Teenager

Continued from the previous post....

The second angel that breezed into my life is someone we're already acquainted with - Estelle, who had inquired about the first Res Hab position but ultimately couldn't take it. I didn't hear from her since then - until she suddenly called me six months later. She heard so much about Dovi and was dying to work with him. However, she worked all day -til 5:30 - and wished she could figure out how to make it work.

I was curious how she heard about Dovi recently. To my surprise, she told me she had heard regards from him through Heidi. The two of them worked on Sundays at the Sunday Respite Program, and Heidi had been raving how cute he was. Thus I reestablished communication with Estelle. She was amazing to talk to. We talked a lot about various therapies, coping with special needs kids, and more. Her family constantly hosted difficult autistic kids and she was very experienced. It was fascinating to talk to her.

At the first support group event, I discovered many resources I had not known about before. The other mothers there told me about the Respite House, run by one of the amazing special needs organizations, where kids can stay overnight and over the weekends. It didn't remotely occur to me to send Dovi there; he was, after all, just a baby. I filed the information in the back of my mind and I hoped I wouldn't need it. The other juicy tidbit I noshed was that there was also a Sunday Respite Program specifically for autistic kids. I had tried to get Dovi into the Clinic's Sunday Respite Program, but it only starts at age 5. The Autism Sunday Respite Program apparently starts at age 3. At the time I did not yet have Res Hab and was losing my mind trying to figure out what to do with Dovi on Sundays. So I called the main office of the agency running the Sunday Program.

And Behold, Three Angels Came to Visit

Continuing from the previous post...

As my life was falling apart, I realized I had to take control and do something.

First I picked up the phone and called dear, sweet Sandi, who had so kindly provided me with volunteers to the basement the year before. She wracked her brains but could not come up with anyone available during those critical morning-bus and afternoon-bus times. Then she asked me whether I had considered calling J&N Ambulette Service. She had told me about it the year before, but I was hesitant. J&N is a local ambulette service. They transport patients with straight Medicaid and Medicare to doctor's appointments, and they also managed to figure out a (legal) way to transport kids to therapy and special ed programs. (Since Medicaid does pay for some OT, ST, and PT, they are allowed to transport patients to such services, even if Medicaid is not actually paying for the service.) I had hesitated, because I felt very stupid - Dovi's school is located 2 blocks away from home! I wasn't going to 'use' a service when it wasn't really necessary.

But after six months of rushing back and forth with Dovi twice a day, I had to concede that it was very necessary. The service was available, Dovi was entitled to it - why not give it a try?

Hesitantly, I called J&N and explained the situation. I spoke to an extremely wonderful guy there, who took all the particulars and promised to get back to me after he looked into whether he could service Dovi at those times.

Special Needs Children Affect The Entire Family

I've been a blogger since I remember. I started keeping a diary at age 12 and basically never stopped. I had to delete some of my blogs between 2000 and 2005 due to stalking and other issues, and sadly miss those entries. I also lost a typed diary from 1997 to 1999 due to a floppy disk malfunction. other than that, my life is pretty much documented on livejournal and facebook. Sometimes, my candor has led me into trouble; other times, I got tremendous resources, support, and responses to my questions and issues. But the biggest value of blogging for me has been looking back at the archives. I am constantly rendered speechless by how difficult my life was. I am constantly grateful for the good in my life, for the help and respite resources in place to lift the burden somewhat - but of course, getting all these resources in place took a lot of research, hard work and takes constant maintenance.

In any event, looking back at winter of 2011/2012, things continued spiral downward. As the school year progressed, I found myself being squeezed and crushed beyond capacity, with the demands of the different therapists, combined with Dovi's relentless stimming, hyperactivity, escapes from his bed, and pressure from Chaim and my husband as the family struggled to cope with their lives revolving around Dovi's needs, limitations, and destructiveness.

Autism and Ipads, Assistive Technology, Augmentative Communication, and all that jazz

Just recently I wrote a post about the silliest impulse purchase in recent history. You'd think I'd learned my lesson - but no.  A scant two months later I was once again filled with excitement over the next major breakthrough that would surely turn Dovi's life around.

Shortly after the late Steve Jobs passed away, I was flooded with emails and PMs telling me that I just had to watch this clip. I watched... and bawled. I cried til my head hurt. For I saw Dovi in every one of those 7 and 10 year olds. The tantrums, the inability to express themselves, the frustration... My heart broke. Even my husband, who is not touched by these things, was clearing his throat as he watched behind me. To this day I can't watch this clip without crying intensely. It's 13 minutes long. I'll be surprised if you won't find yourself crying at some point.

Wintertime and the Livin' Ain't Easy Either

Every year for the past few years since Dovi's diagnosis, when Succos ends and the long winter sets in, I started getting anxious. Anxious for the winter to pass with the minimum of drama and heartache. For some reason, the winter months are full of drama and stress. If I think about it, so are the summer months. And the spring months. And the fall months. Bottom line, life with Dovi is stressful. Life as a special needs parent is stressful. One's entire life revolves around that one child. Whether it's the schooling, the respite, the medical needs, or just getting through the day / evening / weekend with the special needs child, while not neglecting the rest of the family - and oneself - is a juggling act that puts Ringling Brothers to shame. But unfortunately, most of the balls do get dropped. And inevitably some of the crash. And break.

Boruch HaShem, at this point in time, my family gets so much help that there is almost no help left to even offer us. I will, over the next few posts, talk about all the different kinds of help we are getting which makes life with a hyperactive, destructive, (DELICIOUS) autistic child livable.

But at the point we're at in the story - early winter of 2011 - I had very little help. Yes, we had Res Hab and we were extremely grateful. But that was basically all we had. We were on our own for Shabbos - Dovi wasn't yet registered for the Weekend Respite program*. Nor did we yet have our Shabbos volunteers*. On Sunday, he didn't attend the Sunday Respite program* yet. In the evenings after the Res Hab dropped him off, I had no help* for the rest of the evening; it was my husband and my job to keep him and the house together. The hardest of all though was the lack of transportation to and from therapy*.

* These are all amazing programs we are fortunate to be recipients of, all of which I will talk about in upcoming posts.

Time to beg for donations again

We had a conference tonight about kids 'aging out' of the system this year and about the process of applying for new schools or requesting pendency.

Frankly, every time the subject comes up, my stomach starts turning. Although we have a great school to look forward to next year, I can't even begin to think how we'll pay  the nearly six-figure tuition. Plus the attorney's fees.

I don't know what I've let myself into. Seriously. But when I look at the other schools out there, my heart starts breaking at the thought of the last 3 years of bitter hard work going down the drain. Of all the kids in my support group, the ones that went to the free schools made absolutely no progress. THe kids who went to the private schools are the only ones that are making any sort of progress. Dovi really, really deserves a chance. He has so much potential. He is such a cutie pie. He is finally starting to match pictures, really respond to commands, and interact with people. He has so much to learn, so much potential. I can't let it all get lost because I can't manage to fund his education. So far, I've managed to raise... well, about a thousand dollars. Which I appreciate tremendously. But it's like a microscopic drop in the ocean.  I really hoped the blog would help me raise money, but it's not, especially since Google Adsense disabled my account. I'm not earning anything from Amazon nor all the other affiliates because they arent making any sales from the blog. I'll still keep writing, because there is so much tale to tell, but I really need your help to make it worth my while....

If you haven't yet donated to the fund, and you have the means to - even if it's five dollars, please, please do. Dovi will thank you. And so will I. As a bonus, I send a five minute video clip I compiled of Dovi to all donors, so you can see whose life you will be affecting with your kindness.

Thank you so much.

Divine Providence Chronicles, Chapter 2: The Res Hab Counselor from Heaven (literally)

Pop the popcorn, my friends, for it's time for another astonishing story. Believe me, I've been savoring this one for a while. We're back to one of my simultaneously favorite and least favorite topics: RES HAB.

As I wrote in a recent post, we went through a Res Hab overhaul after we came back from the country. We had settled for Heidi and Judy. But things fell apart really quickly. Judy, who had started 12th grade, became head of student G.O. at her school and apologetically informed me that she could no longer be Dovi's Res Hab. I panicked, but her sister Rebecca eagerly filled her shoes. Great.

Heidi, who as I wrote was a little aloof but a good match for Dovi, decided after 2 weeks of working with him that she wanted to give it up. I was shocked but not suprised. Her reasoning, apparently, was that she wanted to work with a child who was more responsive, that she could actually make a difference. Shrug... She was good, but we would survive without her. The only question was - who would replace her?

Enter Nina, the girl who had called two weeks before. She was delighted to do it. She came to meet Dovi the first time and it was an absolute instant click. On her very first day she seemed to instinctively know what he wanted, was communicating with his signs - she was absolutely in love with him.

Ignore your teeth, they'll go away

Here's another confession. I have terrible teeth. Terrible. It wasn't like that until about 8 years ago. I would visit the dentist about once a year for a cleaning and few fillings and that was it. Until one fine day when a deep cavity turned out to need a root canal. I hadn't seen a dentist in 3 years because I didn't have dental coverage. By the time I finally had dental coverage and saw a dentist to address said root canal, I needed no less than six root canals. Fortunately, three of those could be saved, and I ended up with "only" three root canals and four fillings. Those three root canals + the posts and crowns + the other four fillings ended up being a months-long affair; I was at the dentist once a week for five or six months, finishing the very last crown mere weeks before Chaim was born.

Then, things were kind of quiet on the dental front until right before Dovi was born, when I had a toothache and discovered several more cavities. Since Dovi was born, I've been living at the dentist off-and-on, especially in the past two years. At this point, I have many broken teeth, several more crowns, and I'm still waiting on coverage for a root canal on another tooth. Tooth #28 to be exact.

Jump, Jump, Jump Real High, Jump Real High Together

I am going to 'fess up now and admit to a deep weakness that I have. I'm very impulsive. I also have little self control and a constant need for instant gratification. That's ADHD for you. It translates into every are of my life, and it also greatly affects how I deal with Dovi. On one hand, I'm driven and ambitious and constantly researching, networking, burning the wires finding out about new advances, resources, innovations, products, and such. The downside, though, is that when I find out that Dovi likes something, I immediately try to figure out how to get one for home use. Most of the time, these gizmos and gadget end up being dust collectors and money not well spent. Sometimes, I do hit the jackpot and our lives change drastically for the better - such as with the harness, or the bed tent, for example. One major instance of a road paved with good intentions but an ultimate waste of time and money was the Trampoline Craze.

As I mentioned, Dovi simply couldn't get enough of the trampoline in the bungalow colony. He was on it day and night. His social horizons expanded as well; he began to mimic what the other children were doing. It also taught him how to jump up with both feet. When we came home from the country and his vestibular needs could no longer be met with the wide open spaces, I began considering getting a trampoline for the house.

A New Year, A New Reality

It's become a struggle for me to keep up this blog. Google Adsense disabling my account for reasons I don't fathom was a big blow. Granted, I only made $50 a month, but at least I was getting paid somewhat. Oh well. Maybe if I'll start writing again and re-generate interest in the blog, donations to the Dovi Educational Fund will pick up again. If only I can stop playing Coasterville for long enough! I hate being addicted. ADHD stinks!

So, back to our  narrative. Where were we? Oh yeah. September 2011. We came home from the country. And all hell broke loose.

The same story repeats itself, year after year. We arrive home at night, exhausted, nauseous, with tons of boxes. We prepare the kids' beds, eat supper my mother so sweetly provides, put the kids to bed, and halfheartedly take a stab at a few boxes. The next morning, the house is a mess; we can't find anything. Finally, Chaim is dressed and ready for cheder. I shlep to cheder with both boys to register Chaim for the remaining week(s) of the summer. Then I shlep back home with Dovi and try to unpack.

And of course, I can't, for Dovi is everywhere and into everything. I can't begin to make heads or tails of the overwhelming job of unpacking the boxes and putting everything back into their places when I also have to keep an eye on Dovi, keep him occupied, and keep him out of trouble - and from destroying the house. By the time night falls, I'm in tears.

Don't worry, I'll Be Back

My apologies for neglecting the blog, Now that I am no longer getting paid by Google Adsense, I lost a lot of the drive to keep the blog going. But there is still so much story left to tell, and I'm still very dependent on your kind $$$$$ donations to keep building up Dovi's Educational and Legal funds, so I hope to resume next week. That is, if I can stop playing Coasterville for long enough to actually write! :)

have a good Shabbos, everyone.

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Risperdal and Autism?

We went to see Dr. Cartwright again today. He's such an incredible gentleman, and such a wonderful doctor! He pulled out the big guns with Dovi.... the stimulants make him aggressive and overly sensory. The Clonidine family of drugs makes him depressed and sleepy. So he pulled out the big guns... Risperdal.

GAH!!!

Anyone else here have a kid on Risperdal? any side effects to look out for besides weight gain? Funnily, half an hour after I gave it to him tonight, he began to cry miserably and nothing would calm him down. It may have been coincidental; I hope so. I have no energy to the whole 'getting used to meds' phase again. The school isn't happy when he's on meds, and by the time he comes home, it's not effective anymore... so there's almost no point.

In any case, I'd like to hear from anyone who has used Risperdal on a child, especially on a child with autism.

THANKS!

Medicaid Waiver slots available in Brooklyn

Medicaid Waiver slots are hard to come by. When I tried to get it for Dovi, I was told there are no Res Hab hours available. It took me almost six months to get it all set up and approved. I found this message posted on a message board for Jewish mothers:

Hi, we are an agency in Brooklyn, and still have some slots available, so I'm re-posting to see if anyone needs. Please share this with anyone you think needs this: 


Medicaid waiver slots in Brooklyn available immediately . For information please call 718-252-3365 x 105. 



2) Services for Special Needs Children 


Attention Parents of Special Needs Children 
If you need to know what special programs are available for your child and how to access them, 
If you’re you finding it difficult to apply for Medicaid Waiver, 
If you need to know what services are provided under the Medicaid Waiver program, 
If you need direction in finding the appropriate individualized supports and services, 
There are experienced professionals with updated information who can guide you through this difficult process.

call 347-401-1527 or email perachimprograms@gmail.com

If the above can be of help to anyone, I'm only glad to help.

Summertime and the Livin' Ain't Easy -- Take 2

Life with Dovi is a constant learning process. I keep learning things about him I didn't know, and things about myself I didn't know. I keep finding out just how much I can take, and just how little I truly manage. I learn about my strengths, and also about my limitations.

I knew that going to the country for three weeks without any pre-set help for Dovi was going to be hard. But I had absolutely no inkling just how draining and exhausting it would be; how I would fall apart after only two weeks and have no idea how I would survive another week. But I did. And I still don't know how.

Those of you who have a really, really active toddler can maybe imagine what it's like. Imagine being in charge of that really, really active toddler (who does not nap) 24 hours a day, 5 days a week, with no break. And still keeping the house together and having laundry done and food on the table.

I knew all about Dovi's hyperactivity first hand, of course. I had just finished a grueling year of EI, in which I was always shuttling Dovi from place to place. We had just gotten over moving apartments and all that it entails. But I had so gotten used to having Dovi out of the house from 9:30 am til 6 pm every day, that I was sure that managing him for 3 weeks would be doable.

HA.

Backpack Harness, Child Locator, and other Outdoor Safety Solutions for "Runners"

When Dovi was about 2 1/2 years old I realized we had a big problem on our hands.

It simply wasn't safe to go out with him without a stroller.

He was apt to bolt at any second. I could hold his hand as tightly as possible; he always managed to wrench himself out of my grip and just run. He had no safety awareness whatsoever and easily ran into the busy road.

During the week it wasn't such a problem, as he was always in a stroller. On Shabbos, in the winter it wasn't such a problem either, as it was too cold to go out. But as winter turned into spring, and I started taking him to the park on Shabbos mornings and on long walks in the afternoon to visit my parents and such, I began feeling very scared and unsafe to go out with him.

Problem, indeed.

What a difference a year makes

Summer has always been a "big time" for me. I was born in the summer. I got married in the summer. Both kids were born in the summer. Some summers were amazing, and some were downright terrible - like the summer I had my first miscarriage. Or the summer my doctor gave up on me. (Foolish doctor.) Or the summer I was expecting Chaim and having panic attacks all summer (I was convinced it was another miscarriage waiting to happen.) Summer of 2010 was an extremely difficult one, with Dovi's new diagnosis and all the therapists camping out at my bungalow. By extreme contrast, Summer of 2011 will forever remain imprinted in my memory as the summer the wheel began to turn back upward.

We came home from that weekend in the country all refreshed and ready to tackle a very busy, very exciting summer. First came Dovi's move to a full-time program. FINALLY!!!! After suffering and struggling and tearing my hair out and enduring the grueling year of home-based E.I., Dovi was FINALLY going into TABAC. Yay!!!!! All those sweet, sweet promises, all those dreams of him progressing in leaps and bounds, all those hours of *freedom* - it was finally here.

:-(

Google Adsense has terminated my account, a week before I was gonna get my first, exciting, $100 check. For no reason. No explanation given. Was the blog getting too many clicks? I will never know. I'm sad. I was blogging primarily to make $$$. I have much bigger and better things to do with my time than write for free. All 3 weekly magazines are after me to write for them and I don't - and I probably should. And I should probably step up my ebaying. I don't know, what else can I do from home that doesn't involve selling or working on a clock?

I'm upset.

I will still continue this blog because it is doing a lot for me, and for others, and I'm still raising money somewhat with the donate button (hint, hint). But I'm sad; I feel like I'm being punished by the high school principal without explanation. Oh well - I was only making about $50 a month. The money will come in from elsewhere.

Does anyone know of a similar program like adsense - a pay-per-click / impressions type of program? I know there are. Please let me know if you do.

A Funny Thing Happened in Fallsburg

One of the difficulties in writing this blog is that despite this being in 'chronological order', I sometimes skip ahead and back, since the posts are sometimes separate topics. So although I already wrote about Dovi's upsherin, I'm going to step back to a week or two before his upsherin to tell you a really fascinating little story.

Although we were staying home for the summer so that Dovi could start attending the ABA center - and of course, due to our exciting upcoming move - we did try to make some vacation plans. We had our minds open to finding a place for the last 2 weeks of August, since the ABA center was closed then, as well as for the first long July weekend, as both Dovi and Chaim had a couple of days off.

We first tried a summer camp that was offering bungalows for the first weekend, but that didn't work out. At the very last minute, on Thursday morning, we called a different place, which sounded even better than the first place.

Dovi lived it up in the hotel/motel. He loved the grass, the fresh air, the pool, the swings - the whole works. This kid thrives in suburbia. He makes more social progress in the summer in the great outdoors than he does all year long. As you will see later, when I will write about our August vacation, his next big social breakthrough came during those admittedly very difficult weeks (I was basically solely in charge of him and it was murderously difficult).

Mazel Tov! It's a 3 yr old! Thoughts on Birthdays and Missed Milestones

When I initially started writing this blog, I wanted it to be religion-neutral and appeal to a broad spectrum of readers, especially other autism moms. I’ve seen other friends do it and manage to keep their lives anonymous and attract thousands of readers. But as it turned out it was nearly impossible, as this is a very ‘personal’ kind of blog and my lifestyle creeps into every post more or less. You’ll notice I’m keeping the names of the people involved in my life extremely culture-neutral but not “out there”. However, I still think that no matter your affiliation or denomination, if you’re dealing with special needs you can relate to this blog, cultural background notwithstanding.

I prefaced this post with the preceding paragraph because I’m about to talk about something that’s relatable across the board even though I’m discussing one specific milestone: that of a Jewish boy turning 3. If you’re not Jewish yourself, or you don’t do the ‘first haircut and trip to cheder (Jewish preschool)’ custom, you can still relate to this post, because reaching birthdays while missing milestones is a big bittersweet, lump-in-your-throat tears-in-your-eyes hurdle for any special needs parent.

(I will just provide a small glossary for unfamiliar terms. Upsherin = the haircutting ceremony. Kappel = the headcovering. Payos = the sidecurls. Hopefully this is enough context to understand the entire post.)

Res Hab: A Mixed Blessing

As Dovi's ADHD became more pronounced, life became harder and harder. I could no longer go anywhere with him - he immediately bolted from his stroller and ran off to who-knows-where. Taking him shopping became a nightmare. I remember one Sunday at the local butcher/take out; I was waiting in line for so long, that Dovi kept escaping the stroller and I kept strapping him in. The stroller overturned every time he jumped out, since it was laden down with packages, and I had to leave the stroller like that and chase after Dovi down the street. I put him into the stroller with maybe some more force than necessary, out of sheer frustration, and a gentleman in the store looked at me askance. I burst into tears and explained that he had special needs, and all I wanted to do was pay for my food and get out of there! I could simply no longer go out shopping on Sundays; but Sunday was my food replenishing day and I was stuck.

In May I got the long awaited phone call from Jenna, my Medicaid Services Coordinator; my request for res hab (known today as Community Hab, but I will continue calling it Res Hab, which is short for Residential Habitation) was approved by the Department of People with Developmental Disabilities. I would be active as of June 1, and could start looking for counselors.

YAY!!!!!!!!

and

YOY.

Bed Tent Saga Part Two

It's storytelling time again. Time again for another story of Divine Providence and just all around incredible Heavenly Love. Oh, and also, it's the Bed Tent Saga part 2 and hopefully the last part forever.

Many many many many years ago, before I had children, I ran a web site. Actually, a few web sites. A bunch of yahoo groups. One was for Jewish Music fans. One was for Miami Boys Choir fans. One was for lovers of Judaica novels. As you can see, the writing bug bit me the moment I was born. I was a blogger even back then. But anyway. I digress.

The very second person to sign up for one of these groups - I'll leave it deliberately vague to protect their privacy - was a really nice single guy. He was very active in the group and helped bring it off the ground. The group was very close knit then, and we were very excited when he got engaged. We met him and his kallah at a concert, and we even went to his wedding. It was a pretty cute time in my life... we met all kinds of interesting people back then.

Fast forward many many years. The groups disbanded. I lost touch with him and his wife. Then 2 years ago Dovi got diagnosed. I joind an online group for special needs parents. And there, in the group, to my shock, was this sweet lady we had met years ago. She was dealing with a special needs child too.

So we hooked up again, after many years. She had some connections and ideas for me and was supremely helpful. (That's how it works in this 'biz' - NETWORKING!)

It's that time of the month again... Donation Begging Time :(

I hate to do this. I really do. I feel like a class A Shnorrer (beggar).

But readers, the donations to the Dovi Educational Fund have ground to a halt.

I haven't sold a single item on amazon, and I haven't had time to put up stuff on ebay.

My google adsense earnings this month are very low too.

I'm getting kinda anxious! All the channels of chump change to add to Dovi's fund seem to have petered out. Pretty soon I will have to retain the lawyer so I can fight my way to get Dovi's schooling reimbursed and I don't even have enough to pay HALF of her retainer, never mind a dime for the actual tuition.

So I'm down on my knees, begging.

If you haven't yet made a donation to Dovi's fund, and you can afford to do so, please do. Even $5.00 helps.

You can't even imagine how much I will appreciate this. There are no words to express.

I hate writing posts like these, but sometimes they're simply necessary. :(

We Gotta Get Outta Here!!!

In the middle of March, just as Pesach cleaning was getting underway, I started hearing mysterious, ominous scratching coming from the walls just behind my couch. It could only be one thing...

MICKEY HAD RETURNED!

Or Minnie. Or their offspring.

UGGHHHHH!!!

My evenings became a nightmare. I would pound on the wall behind me to silence the mice. I was jumping out of my skin, terrified that any second I would see that disgusting creature flitting by silently like a shadow.

Our apartment had a vermin problem from day 1. We paid a lot of money every few years to mouseproof, only to have the mice show up somewhere else. We usually found the holes in the kitchen, behind the fridge. If you remember, we had a mouse sighting just four months earlier and we had spent money on an exterminator. So what on earth was going on?

What causes autism?

I have no idea.

Neither do any of the doctors, therapists, and professionals Dovi and I have seen over the years.
I will tell you his entire medical history though and wonder which of these things contributed.

1) Dovi is a result of assisted reproduction.

I will not reveal exactly what infertility treatment we did to conceive him. But for a long time I suspected that there is a connection between the two, because a shocking amount of my fellow IF survivors have children on the spectrum. None of the doctors I asked have been able to corroborate my theory. No link has been found between the two.

2) I had a TON of ultrasounds during the pregnancy.

Because of my preterm delivery with Chaim, I had an ultrasound every 2 weeks with Dovi, and used a home doppler several times a week for my own peace of mind. But again - no doctor has ever linked the two.

Stage 3: Bargaining... or Guilt

The 3rd stage of grief is officially "bargaining". I wasn't interested in doing any bargaining; I had done enough of that during my years of infertility. Instead I felt tremendous amount of guilt for not keeping my end of the bargains. It took a very long time to realize that I was not being punished by HaShem, and that Dovi's situation had been predetermined a long, long time ago.

Or so I still hope. You never know.

Like many mothers of newly diagnosed autistic children, I was filled with guilt and was absolutely convinced it was all my fault.

Before I had children, my nights were long and lonely. I was addicted to the computer; I barely moved from the minute I came home from work til I fell asleep in the wee hours of the morning. I became hooked on a certain comedy show which had elements of infertility in it.  I made a 'bargain' - a deal - with HaShem - that once I became a mother I would no longer go online.


But as all you computer addicts know, it's much easier said than done. You can't just go offline like that. My entire life was on the computer. My friends were all on the computer. It was my whole identity. There was just no shutting it off.