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).