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?