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.

The Vital Importance of Getting Support and Networking

I mentioned somewhere early on, how impossibly difficult it was to find one other autism mom to talk to. I simply did not know of one autism mom in my neighborhood. Not one.

When I asked my service coordinator to hook me up with someone - ANYONE - she had no one.

It didn't make sense. It just couldn't be that I was the first mother in my neighborhood to deal with a child with autism. After all, TABAC was in existence for a few years already. So where was everyone???

During my long years of struggling with infertility, support was plentiful and easily available. I joined  a support organization within a year or so of my marriage and the support was incredible. Throughout all my struggles there were dozens of listening ears available, shabbatons, support groups, events with speakers - you name it.

How in the world was there no organization for parents of chidren with autism?

There were so many organizations that offered services like Res Hab, Respite, Summer Camp, etc. Why didn't I see anything about connecting mothers with each other?

Divine Providence Chronicles: When The Problem Became the Solution

If you remember, during one of the blizzards 2 years ago I had an eye-opening life-changing moment in which Dovi stopped being my millstone, burden, and everything that was wrong with my life and became G-d's gift to my family. Well, not quite. I still continued complaining my kishkes out until my 2nd eye-opening, life-changing moment that occurred a year later in mid-January of 2011. (Boy, I can't wait to write that post. If you think the song was powerful, wait til you read this!) My life was still unbearably difficult and I was still going through severe emotional ups and downs. But one major thing had changed: I was slowly letting G-d back into my life. And I was noticing His presence; I was feeling His Guiding Hand and His celestial Hug in the most unexpected situations.

To that end I have to tell you an absolutely stunning incident that occurred right around then, a month or two after The Song That Changed Me.

Let me give you a mini crash course on how the Special Ed system works in New York. When a child ages out of Early Intervention the next step is to get evaluations and submit them to the Committee for Preschool Special Education, or CPSE. New York is divided into a bunch of different school districts, and each district has one or two district administrators who are the ones to decide whether the child in question is eligible for the services the parent is requesting.

The ongoing saga of the basement, center, etc.

Truthfully, I'm really sad today. A good friend of mine, who I know since my A T.I.M.E. days in the early 2000s, passed away suddenly this morning. We are all in shock; no one saw this coming, she wasn't particularly sick (aside from several long-term issues) and she apparently didn't wake up. She leaves behind a beautiful, long-awaited daughter, a devoted husband and hundreds of shattered, shocked friends. May Hashem comfort her family.

***

Nevertheless I do want to pick up the narrative of the Dovi story, being that tomorrow he'll probably be home (Jan 1st) and I have an appointment on Wednesday and before you know it, this blog will start stagnating. All the sensory solutions posts interrupted the flow of the blog and I want pick up the thread of the story where I last left off.

In the most recent entry where I tell Dovi's story,  Ellen his SEIT was reporting that he was crying a lot and was unhappy. In addition, Ellen herself was out for a large chunk of the day, coming back at 3 pm to work with him, which is not his optimal time to perform.  She also was urging me to look into placing him into an ABA Center, which is a better setup than working alone in a basement. It was a very confusing month for me.

Once Ellen was finally done with her medical situation and was back to working normally with Dovi, he settled down a bit - but not all the way. A new problem cropped up.

Mrs. White, the wonderful neighbor who was so graciously letting us use her basement every day for the ABA sessions, was getting very annoyed by the arrangement - because Dovi was crying. A LOT. Ellen was starting to feel her resentment and was extremely uncomfortable continuing the sessions there. Bessie didn't feel it as much as Ellen, but Ellen was getting adamant about not continuing to work in the basement.

What on earth was I supposed to do???

~DOVI FUND UPDATE~

I interrupt the trajectory of the Dovi narrative by bringing you this important bulletin.

Ladies and Ladies (I don't think any Gents read this), the Dovi fund, thanks to your amazing generosity is ~~~DRUMROLL PLEASE~~~ at $700!!!

That is pretty impressive, considering it's all made of kind donations from you, strangers and friends. I have gotten a few checks in the mail too, and some of the amounts made my jaw drop. You readers are just one of a kind.

Combined with my earnings from my Binah writings, the blog, unloading ebay junk, etc., we've probably just about passed the $3000 mark.

It's these donations - whether it's $10, $25, $50 or even more, that keep me going and give me impetus to keep the blog going too. $3000 is nothing to sneeze at - but we need to raise about 30 times that amount!!!

So keep the donations flowing, ladies. I have no words to thank you. I can't wait to start posting progress reports next winter when we will, with G-d's help and your kind support, start seeing big, big strides when he starts attending the $$$$$ incredible $$$$$ school.

(The donate button is at the bottom of this entry.)