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.)

Theraputty, Fidgets, and other Tactile Sensory Solutions

This is the final post in the series on sensory solutions. We have already covered Vestibular, Proprioceptive, and Oral. Now I will discuss solutions for the phenomenon of constantly touching everything.

In Dovi's case, his tactile sensory issue is really a combination of three things. A lot of it is in fact proprioceptive in nature - he needs to squeeze, smear, pulverize, and throw things. That's not exactly the same thing as Chaim's tactile sensory need which is just to touch stuff for no good reason. He once had his hands scotch-taped together as a consequence for destroying his Chumash (Bible) systematically during school session. A letter and a phone call to his Rebbe (teacher) helped greatly, and the next time he started fiddling around with his book again, his Rebbe gave him a piece of silver foil to fiddle with instead. Thankfully Chaim has mostly outgrown his fidgeting days; but my point is that Dovi's touching of stuff is different. His need to squeeze and smear is more of a proprioceptive need and not so much a tactile need. It's also a form of stimming; when I give him shaving cream or farina or rice he tends to throw it and smear it everywhere, which is simply part of his stimming repertoire as a person with autism.

Brief Hiatus

Readers, I have not abandoned the blog. or the other four blogs. I am bh in the middle of a family simcha (husband's baby sister got married on Wednesday), so my evenings are consumed with getting ready for sheva brochos and going to said sheva brachos, and my days are consumed with sleeping off the jet lag of the events. Therefore there's no time or energy for blogging. However IYH at some point next week all will hopefully return to normal. Dovi is going away for Shabbos for the first time in 9 weeks! He normally goes away every month, but last month he had just started Ritalin and was being aggressive and and anxious and I didn't want to risk him injuring anyone at the respite house and thus getting kicked out of the program. I am amazed that we managed 9 shabbosim without a break (although we do have lovely girls who take him out all the time when he's home). So anyway good Shabbos everyone and we'll be in touch next week!

Oral Sensory Solutions

Another one of Dovi's biggest sensory issues is oral sensory. At age 4 1/2, he still likes to mouth everything in sight. He is being coached and taught at school to decrease all that, but he is still pretty much at it. He will also eat and chew many things that are not edible such as leaves, sand, play doh, wiki sticks, soap, candles... It's often a challenge to figure out if he's chewing on something edible or whether we have to immediately part his teeth and make him spit out what he's eating. It took a long time for him to stop instantly eating sand when in sandboxes. If I do shaving cream/hair mousse for tactile sensory input, he always mouths some of it and I have to rinse his mouth and warn him again not to eat it. It doesnt' always help. He also loves to eat raw food like rice, farina, oats, spaghetti - anything that can be flung around or broken up.

In addition he is also very sensitive to things like toothaches. Unfortunately he does not tell us when he has a toothache and it's a guessing game. In a future post I will relate the ongoing saga with Dovi's teeth; for now I'll just briefly say that his behavior and mood is very related to having cavities or sensitive teeth - and we don't always figure out that this is driving him for many weeks.

Dovi also went through a phase of biting out of frustration. It was a very difficult phase, as he would bite me, the volunteers, the therapists, anyone who made demands of him or wouldnt give in to his demands. It's extremely frustrating to be unable to express oneself, especially when you're as bright as Dovi and have plans and needs which you can't explain to anyone and have demands made of you which you can't or refuse to meet. B"H that stage has passed for now, but it rears its ugly head every time Dovi makes some cognitive or developmental progress and he becomes more aware of his surroundings and his independence increases.

The Temple Grandin Movie Review

I know that my next two entries are supposed to be about Oral and Tactile Sensory Solutions. Trust me, we'll get there. But I need a break from the tedious searching, researching and linking for a day. I'm very tired. Tomorrow is yet another legal holiday, and Dovi is not old enough to attend the local Holiday Respite program (which starts at age 5). His Home Health Aide is off for 2 days, as is my cleaning lady -- and to top it all off, my sister-in-law is getting married on Wednesday night! What a hectic week. I'm pretty sure someone will take him out for 2 hours to give me a break; thankfully I've done enough inner work on myself not to get hysterical when a combination of factors such as these come together. I've endured far more stressful situations as Dovi's mother. I'm just throwing it out there.

So anyway, I'll move on to something a little more interesting and less tedious; after all, sensory solutions only interest those readers who actually need it; I do want this blog to be of interest to everyone reading.

2 years ago, at the chronological time of this narrative, I got a cryptic, interesting message from a friend online. "I have something for you. Remind me next time I run into you to give it to you." I was intrigued and confused; this particular person is someone I run into once in a while at the local stores and wondered what she wanted.

Weighted Vests, Weighted Blankets, and other Proprioceptive Sensory Solutions

Dovi's biggest sensory issue remains his difficulty "finding himself" in space. The running around, squishing things and throwing things are all stimming techniques he uses because of his need to feel where he is. Children with sensory processing disorder and autism often don't 'feel' things the way we do. They need deep pressure massages to feel stuff. That's why Dovi thinks he can jump off tables without getting "hurt". He doesn't feel pain quickly. When he hurts himself and cries, then I know that the has definitely hurt himself and didn't just get a phantom booboo. B"H he has stopped having sensory meltdowns, for the most part - except when he occasionally wakes at about midnight crying for reasons we can't figure out - but at the chronological age of this part of the story,  2 1/2 - we were trying to figure out how to calm him down from his poor, bitter crying jags where we simply could not figure out what was bothering him. I noticed during his sessions at EECs OT gym that he seemed to calm down a lot when weights were put on him, and it also slowed him down from his manic jumping, spinning, and running. So I set out to find a weighted vest and a weighted blanket, first and foremost.

Unfortunately, they are far from cheap. Currently at TABAC he also wears an excellent deep pressure weighted vest that provides him with the sensory input he needs to sit calmly in his chair and do work. I'm not sure where they purchased it or what it's called. The one I purchased was from Abilitations.com and cost about $80. Unfortunately, I searched their site now and don't see anything for a manageable price there.

Swings and other Vestibular Sensory Solutions

I'm going to admit it from the outset. I am not an expert on OT issues and Sensory issues and such. I can only write about our personal experience with Dovi and his issues. So forgive me if I end up talking gibberish or even say something incorrect. If you're an OT or other professional with knowledge in this area - or even if you're a SN mom with experience in this area - please don't hesitate to speak up, correct me, and/or give your input. Thanks.

Now back to Dovi's constant need for motion.

Dovi likes to run back and forth large, empty spaces. I'm not exactly sure what drives the little demon inside of him to spin, spin, spin and run, run, run. I don't know if it's the inner ear imbalance, if he's running away from himself, if he wants to "find" himself in space, or if it's just something he likes to do for fun or boredom.

Carly Fleischmann (whose book you can buy here - admittedly, I havent read it yet, although it's on my planned reading list) - mentioned that she would rock back and forth to get rid of the 'demons' inside of her. For what it's worth, check out this clip from youtube by a person with autism spectrum disorder, on what it's like to have a sensory overload:

Introduction to Sensory Processing Disorder Aids and Solutions

Once Dovi's first SSI check arrived, I went on a big shopping spree and bought him all sorts of sensory equipment. Some of them were hit-and-miss, others were a hit. Instead of bunching them all into one post, I will divide all my purchases into separate posts, one for each of the sensory issues that Dovi deals with. These posts and products will obviously not be in chronological order, as I bought stuff - and am still trying out stuff - all the time, and I'd rather make it easier for casual readers and serious searchers to find the post and product they're looking for instead of scattered around the blog in chronological order.

I will also review products that I did not necessarily buy myself but heard about or saw,

With this introduction out of the way, here are the senses of the sensory system:

Auditory
Visual
Tactile
Proprioceptive
Vestibular
Olfactory
Oral

The "Five Senses" are really: Sight, Sound, Touch, Taste and Smell. Dovi doesn't seem to have any extra special issues with sights, sounds, tastes and smells - Yes, he gets overwhelmed and overstimulated by too much light and too much sound and he'll retreat to his own world when that happens. He squints at lights when he feels too overstimulated or upset, and he'll cover his ears when he's getting dizzy from the activity (although that can be more vestibular as well). He has a finicky tastes but I never bought anything to deal with that so I don't have any posts to show what we bought for that.

Making use of resources: SSI and Medicaid Waiver

One of the first things that crossed my mind once I knew I was dealing with a serious, long-term disability was I'd better make use of all the resources available if I want to survive this. And the first two resources I could think of were SSI and Medicaid Waiver.

SSI is Supplemental Security Disability Income. One of my uncles has a disability and gets SSI. I never thought I would be receiving it for an immediate family member. It made me sad, but at the same time I was thrilled that there were actually real resource to help me.

When Dovi started dealing with all of his sensory issues it was clear to me that I needed a lot of supplies. I wanted a swing, a pressure vest, a weighted blanket, chewy tubes, a vibrating teether - the works. All of this cost quite a lot of money. I wasn't ready to just put it onto a credit card; I really could have used funding for all of this.

First I tried to apply through Early Intervention's equipment program for a swing. Becca tried to help me, but after months of waiting I got a flat out no. So it was time for Plan B: Apply for SSI. I postponed it and postponed it as I was so busy with Dovi's needs and couldn't find the time to sit and sit at the Social Security office. Plus, I hate government offices of any kind and avoid them like the plague. So to actually have to sit there and be interviewed/probed by a  government official gave me the heebie jeebies.

Chanukah musings

Chanukah is over - and I'm glad it is. It was an emotionally wrenching Yom Tov.

Every year, before I had children, Chanukah was one of the hardest holidays for me. I would attend the family Chanukah parties and watch everyone showing off their babies, getting gifts for their kids, while I sat there stoically, trying to partake in conversations I knew nothing about, trying to ignore the maternity clothing and birth stories and whatnot around me.

After ten such torturous Chanukahs I finally became one of 'them'. I had my own baby to bring with me and was able to be part of the world at large. I finally belonged, and it felt awesome. I enjoyed five such blissful Chanukahs. Unfortunately, more often than not, my parents and in-laws both chose to make their parties on Motzei Shabbos, which meant splitting my time between both, which I hate. It means not enjoying either party; escaping from my in-laws' party just before the fun and games start, and arriving at my parents' when all the good food is already consumed. This has been the situation for the 3 or 4 of the past 7 Chanukahs. One Chanukah a blizzard started on that night, and I had foolishly left the house without boots, a scarf or gloves, and without a plastic cover for Dovi's stroller. I arrived at my mother's house with sopping wet stockings, my hands nearly frostbitten, tears rolling down my cheeks, Dovi screaming at the top of his lungs from the cold. I commented that now I know what the Death March must have felt like... (not really though.)