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.)

The Song that Changed Everything

The second stage of the grieving process is the Anger stage. Once Denial/Disbelief dissipated and reality sank in, I was filled with a combination of Anger, Depression, and Guilt. I find that the Five Stages of Grief don't always go in 'order'; Sure, first is the denial and disbelief. But you don't necessarily have anger next, then depression, then bargaining. I had a mixture of all three at once. But in my case there was no bargaining. I had done enough of that the first 9 years of my marriage. And I wasn't filled with vitriolic anger; as Jews we know that everything is ordained straight from HaShem. Yet, it's hard to swallow and it hurts. Badly.

My version of Anger was a simple, anguished sentence: WHY ME???? 

Those of you know me and my background story know what I went through those first 9 years. Those of you who don't, well, I'll clue you in. I didn't have children for 9 long years. I struggled with infertility, and it wasn't pretty. I had my share of ups and downs, grieving and loss and anger and all that. Then, finally, when Chaim was born, I still didn't feel whole. He was a preemie and I had to struggle through the whole preemie and therapy business. He was born by emergency c-section and never learned how to nurse. When he was 2 years old, we embarked on the infertility roller coaster once again, expecting it to take many years, and were shocked when our first round of treatment we got a positive result. Dovi  was born the summer right before Chaim turned 3, and I viewed this as my chance to really experience motherhood the way it should be. He was full term, nursed like a champ, and I had a normal, non c-section delivery. Life was finally "normal" and good!

Another appeal for the Dovi Education Fund

I just spoke to the school where I went with Dovi for an interview. They are very excited about him and would love to have him.

The catch? I need to come up with the entire tuition in advance. ahhhhhhh!

People, we are talking about almost six figures here. By July.

I will be able to raise some of it via other channels, but it's all just drops in the bucket.

So I am making another appeal to anyone out there who can spend even five dollars to the cause, for helping Dovi reach his potential - and his potential is huge.

Naturally I cannot name the school here, but trust me, once he is in, I will let you know the name and post videos of the school. It's the most incredible school for autism in the entire city.

So please, anyone who hasn't donated yet and can spare ANY amount of money to help Dovi, click below. THANK YOU SO MUCH.

Winter Doldrums

Some of you reading this blog are probably getting dizzy reading how insanely busy I am on a daily basis just with Dovi's needs. Life is always crazy around here. If it isn't one thing, it's another. But looking back on my old journal posts from 2 years ago I'm amazed at how I survived that first year after Dovi's diagnosis. Frankly, next year I'll probably shake my head and wonder how I survived this year. I guess Hashem gives you strength to survive whatever is happening at the moment; later on you feel weak-kneed and wonder just how you coped.

The winter of 2011 was chock full of ups and downs. It started with the infamous blizzard of 2010. New York was paralyzed for a good week. Like everyone else, I had my kids home all week. Unlike everyone else, having Dovi home for a week is a frightening prospect. I was lucky that kind, devoted Ellen actually came by TRAIN to work with Dovi, despite the blizzard. Her dedication to Dovi's cause was just unbelievable.

Ellen had one major downside, though - she was overly involved. I spoke to her three times a week, every time she had Dovi, so every time Dovi had a hard day, I ended up worried and anxious. When Dovi wasn't making progress, I was beside myself with grief. Ellen felt that she was working very much on her own; Naomi was out on maternity leave and she was working with absolutely no supervision. Unlike Bessie, who finally came back from her three-week honeymoon vacation, Ellen took her job very seriously. Bessie came twice a week for her two hours and left her work at work. Ellen lived and breathed Dovi and cared for him as much as I did. But unlike her, I had myriad other obligation and worries and I couldn't focus solely on the ABA portion of Dovi's multiply complicated schedule.

Therapy and Support for the Caregiver

Even prior to Dovi getting diagnosed with autism, I was struggling with a host of issues. I had a pretty bad Internet addiction, and was plagued by feelings of low self esteem and inadequacy. In a community where your value is measured by how good a homemaker you are, I was at the bottom of the totem pole.  During my struggle with infertility, all I ever wanted to be was a stay-at-home-mom, and I was shocked to find myself having little patience to my children and even less patience to housework. I felt overwhelmed by my workload and tasks, and the smallest thing felt huge and difficult for me. I also suffered from anxiety and and an obsessive tendency. In short, I was a basket case.

So when you add something like an autistic child to the mix, my life was a tinderbox just waiting to explode. It didn't take more than a few weeks for me to realize that I needed help. Serious help. I was not coping with the added stressors of ferrying Dovi back and forth to his multiple therapy sessions and the mountains of paperwork, networking and resources to follow up on. The harder life become, the more I gravitated to my computer for distraction and solace.

But finding the right source for 'help' was not easy. I knew of just one clinic of social workers who took my HMO, and they had endlessly long waiting lists. Then Dovi and I were practically incarcerated in our home, so I couldn't even entertain the thought of seeing a therapist every week if I couldn't leave the house.

From EI to CPSE

By mid-January we had finally settled into a comfortable routine. Get Chaim on his bus, get Dovi's food together, walk him to the basement (on Bessie's days; take him down the stairs to Ellen on her days), do my errands/housework, get Dovi dropped back off at noon, wait for the speech therapist, take him to OT or wait for the volunteer to take him to OT, come back and do the rest of my housework, wait for Chaim's bus, ad infinitum. It was all shattered when Becca called to inform me that she was starting the CPSE process.

What? So soon? He was barely 2 and a half!

Becca reminded me that we were trying to get Dovi into the TABAC center before his 3rd birthday - at 2 and 9 months - and therefore we had to start the evaluation process already, so that we could have our meeting with the Board of Ed in March and get Dovi into TABAC for April.

And so, we began the evaluation process again. Once again, evaluators traipsed in and out of my house, five of them in all, reminding me once again of all the things Dovi didn't do and couldn't do, and all the things he shouldn't be doing anymore but was still doing. It painted a dismal picture of the progress he was not making. It was gut-wrenching all over again.

Update on the Dovi Educational Fund

Thanks to your generosity, the Dovi educational fund is now at $295.00 which is incredible. Thanks so much to all who gave, even $5.00 makes a difference.

Of course, $295.00 is but a drop in the bucket; tuition is around $8,500 a month!!!!!! But we still have time until July to help me get to the sum of that first month of tuition. The earnings from this blog and my other writing gigs will help; and that is also giving me a push to start writing more for actual publication instead of the puny pennies the blog brings.

Keep contributing, ladies... every penny helps. Thank you so much.


Click here to donate.

High Chairs, Booster Seats, and Mealtime Solutions

When Dovi was a baby, he sat in the Graco Evenflo high chair he had inherited from big brother Chaim. I loved the thing; it had two holes on the tray where we could put in toys from the Exersaucer line which kept him busy during mealtimes and playtimes. Eventually the high chair became a space annoyance and Chaim was big enough to sit on a regular kitchen chair, so Dovi inherited Chaim's Fisher Price Booster seat. I loved the booster seat. When I had first bought it for Chaim, it came with a play tray  that had a battery operated "book" with sounds and activities on it. Unfortunately that play tray spent way too much time on the porch and got wet from many years of rains and no longer worked. So now we were just left with the booster seat and a plain blue plastic tray. But it served the purpose well.

That is, until Dovi entered the "food flinging" stage. Now the tray was way too small to contain his food choices which were endless, varied, and picky. He developed an annoying and dangerous habit of pushing himself towards the table to grab and fling stuff; he would move the ENTIRE CHAIR that the booster seat was strapped to. Sometimes he pitched himself backwards out of anger and was in danger of tipping the whole thing over. It was clear we needed a safer solution.

Crib and Bed Tents

I wrote the post below on December 4. Since then, the amount of search words that lead casual, new readers to this blog by searching for 'crib and bed tents' and the 'ready set bloom tent' has exploded. I get at least 2-5 hits a day just from that searchword alone. Therefore, I want the new reader to know that there is a part II to this post; we finally have the perfect bed, which we obtained through a Medicaid dealer. When you are done reading this post, please go over to the 2nd post on crib and bed tents I wrote, by clicking here. I know firsthand the frustration of finding a good bed tent for a crib or a twin bed; since the TotsInMind crib tent was recalled, there is nothing really out there besides the Ready Set Bloom tent, or a plain old camping tent like we bought on amazon. The Pedicraft bed has changed our lives. 

Good luck to all.

EDITING TO ADD ON 8/2/17:

When checking out my amazon clicks, I noticed that someone purchased the following item after reading this post. While I can't vouch for its efficacy or safety, this seems to be the only crib tent not recalled. It's pricey, but hopefully it lasts a lot longer than the $70 one I kept replacing.



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One of my most frequent google searches in the past two years has been CRIB or BED TENTS FOR AUTISTIC KIDS. I've tried every solution under the sun to keep Dovi in bed and out of trouble. Some of these google searches were actually pretty valuable. And now it's my turn to return the favor to other desperate google searchers who are at their wits ends with their little Houdinis.

With Dovi, it all began in December of 2010 when he was all of 2 years and 5 months old. One cold evening as I was sitting and relaxing in front of my computer, I heard the pitter patter of little feet running out from the bedroom to the dining room. WHAT??? I couldn't believe this. Chaim had never mastered the art of climbing out of the crib, even when he had moved from a crib to a toddler bed at age 4. Apparently, Chaim had moved his toddler bed closer to Dovi's crib, which then gave Dovi a foothold when climbing out of his crib... and he was determined to utilize it. Within days, he learned how to climb out even without the toddler bed as a foothold. Thus began our little Houdini's forays from his crib into the big, wide, exciting world of escapism.


At the time we lived in a "railroad style" apartment; the kids' bedroom opened up from our bedroom. So when he escaped from his crib in the middle of the night, he ended up in our bedroom. And escape he did - every night. We put him back into his crib again and again, for about two weeks. We finally realized there had to be some sort of solution. The first thing we did was research crib tents. Apparently there was only one, made by Tots In Mind. The crib tent has been recalled and the company shut down; but at the time, it was widely accepted and widely used. The crib tent was our sanity-saver; it was the only way to keep Dovi contained so that we could all sleep well at night. Dovi even liked it; he felt comfortable and safe and surrounded and the mesh provided him with some excellent tactile sensory input.

Unfortunately, the crib tent is very shoddily made and we ended up going through dozens of them. The first one actually lasted almost four months, until the zipper pull came off, and the company sent us a second one. The next one lasted less than a week; Chaim tore some kind of hole in it right in the middle of Pesach and we bought a new one right away. The third one lasted until after the summer, when Dovi kept using the tent as a jumping bag; we were upstate in the Catskills and his crib was next to a bunkbed. He liked to climb up the stairs to the bunkbed and then climb on top of the tent and sit on it. Before long it was bent out of shape and unsafe; we threw it out and bought tent #5.

I don't even know how many tents we went through the second year; we probably bought a new one every month or two. At that point Dovi decided he did not want to stay in his crib, period, and would launch his entire body out of the crib so that the tent would get bent over, but he couldn't escape. The tents were no match for his body weight and they got bent out of shape or torn every month. We knew we had to find another solution, but what?

My online friends kept coming up with suggestions, some of which were impractical or too difficult to implement. One suggestion was to empty the entire room of furniture and have him sleep on a mattress in the middle of the floor, with the door turned into a dutch door with the bottom half locked. That wouldn't work for many reasons; there was a large trampoline in the room that I couldnt dismantle myself and had tried to sell unsuccessfully for months, as well as a huge chest of drawers I couldnt move myself either and didn't really have where to move to. I also couldn't just turn the door into whatever I wanted since I live in a rental. The crib tent was being recalled and I didn't even have where to buy them anymore since almost no stores were stocking them. We had to find another solution.

Thus began my search for AUTISTIC BED TENTS... which yielded quite a few interesting results.

The first one was the Nickel Bed Tent from My Ready Set Bloom. It looked amazing and perfect for a twin bed; exactly the kind of thing Dovi would love when it was time to transition to a regular bed.

There were some other excellent beds on the market like the Noah's Bed and the Safety Sleeper, which are standalone beds that cost about $5000!!!! I tried to get it covered through my Medicaid Services Coordinator but was turned down by Medicaid because "children should not be restrained" - and they suggested instead that we have an alarm system if Dovi left the room in the middle of the night. Whoa! How on earth would that help us get any sleep? Once Dovi wakes up in the middle of the night, he stays up. He would not go back into his bed. And it wasn't even safe - suppose we didn't hear the alarm for some reason? And how would he ever go to sleep at night if there isn't some way to safely contain him?

We were stumped.

But last summer when we went to the Catskills I decided to try the Ready Set Bloom tent. Since there was a spare bed in the bungalow I decided to test Dovi's reaction to being in a big bed, and if it would work, we'd buy a big bed for the house as well. It was absolutely perfect. Dovi couldn't bleieve all the space he had, and the tent was roomy and cozy. Dovi couldnt stand up in the bed like he was able to with the crib, but he had plenty of room to sit and play. It was safe, nicely made, and at $160, almost triple the price of the crib tent but manageable.

The joy was short-lived. Dovi managed to destroy this tent within the month. He liked to jump on top of it, and the poles became extremely bent out of shape. We ordered a second tent, and waited quite a while, but it was on backorder. When it finally arrived, it didn't last for more than 2 weeks - Dovi destroyed this one, too. We realized that this was becoming too an expensive habit to support - $160 every time! - and the company was out of replacement rods. We were stuck!

One weekend when Dovi went away for weekend respite I discovered that they had a novel idea for kids who had outgrown the crib but needed the additional safety of a tent: A regular camping tent! They put mattresses down on the floor inside a camping tent. I got very excited and decided to try the same thing. After a LOT of research on amazon I finally settled for this one:

We saw right away that we had a problem. Only a crib mattress fit inside, and there was too much empty space. His regular bed mattress did not fit. Dovi didn't like it and refused to sleep in it.

So he continued sleeping in the Ready Set Bloom badly mangled tent.

Until Hurricane Sandy came to town, and Dovi went to town with his painting skills. The bed tent was trashed. We were absolutely lost. Since my husband was off from work, we pushed and shoved together until we forced his twin sized mattress into the tent. We reinforced the tent-and-mattress with a safety bar, pushed the bed towards the wall, left the bottom trundle bed halfways out for extra safety, and held our breaths.

Dovi loved it.

It seemed we had finally found our solution.

Except that  camping tents are extremely, extremely flimsy. The wooden poles were bent, broken and splintered within days. Nary two weeks had passed when the tent was completely unusable. We were back to square one!!!

So I ordered another tent. This time I made sure NOT to get a one- or two- person 6 foot by 5 foot tent; Dovi's twin mattress is exactly 6 feet by 5 feet, but since the tent slopes on all sides, it's hard to shove it in. I sat and researched and compared prices extensively and settled on this one:

Dovi likes this tent a lot because of one of the main reasons I bought it: It's completely 'see through'. Instead of all the other bed tents I've tried before which only have a little mesh for ventilation, this is entirely mesh and he can see out of his bed. I don't enjoy 'locking him up' and definitely don't want him to feel claustrophobic. The tent is very tall and he can sit and feel like he's sitting on his bed without any surroundings.

The problem with this tent is that it's HUUUUUGE. His mattress fit in wonderfully easily, but there is too much extra fabric on all sides. We bunched them up into his bed frame on the sides and it fits in nicely, but it's still not ideal and I cannot vouch for its long-term safety. Plus, the poles are already starting to give a little. We need a permanent solution.

Enter the Pedicraft Bed. It looks perfect for what we need, and this is stocked by Medicaid medical supply houses, unlike the other 2 beds. My next step is getting a letter of need from the pediatrician, which I have not gotten around to due to recent events which have consumed my every spare moment. But that is my next step. For now, Dovi is happy in the newest tent, although I know it won't last very long.

Finding the perfect safe enclosure for a special needs child, especially a hyperactive one who cannot be trusted to stay safely in bed, is a challenge which can take over their parents' lives. But we are lucky to live in a day and age when there are so many solutions, both homemade and official ones. I do feel sorry for the parents whose special children are still in cribs, since the Tots In Mind tent recall and shutdown has left them without options.

When I was searching desperately high and low for bed tent options a year ago I came across this blog. This mom eventually settled for the Safety Sleeper; it looks like an oversized pack n play but looks like an excellent bed. This blog is what planted the first seeds in my mind for my own autism blog; as the blogger wrote, "And this whole bed tent / special needs bed / safe sleep for children with disabilities has remained the number one way that people find my blog. It is a huge need in the disability community." One of the first posts I ever wanted to write was about the bed tents. And even though we haven't yet found a permanent solution, maybe one of the links I posted here will be helpful to one mother, somewhere.

The day I will know that my blog was a success is when my search stats will show me that someone found me by searching for bed tent solutions.

ETA: Dovi slept in the Pedicraft bed for over 4 years until he moved to a residential school. By the time he left the bed was in pretty bad shape - the company that sold me the bed didn't do a great job servicing it, and then they closed down. We managed to skate by.

For those of you who are still looking for an affordable solution for a bed tent, if your child is not super active like Dovi was, by consensus from a wonderful respite provider who had Dovi a lot these four years, her favorite tent is the pop up privacy tent. I have never used it myself, and I'm pretty sure Dovi would destroy it in a jiffy. But just putting it out there to shorten your endless searching.

The Revolving Gym and the Social Network

Time to pick up the thread of our narrative again. We left off last time with beginning our trips to Support By Design .

Those trips were not easy on me at all. Dovi's therapy schedule had to be rearranged. I had to be done with my housework by 1:30. Dovi did not behave in the car and often climbed out of his car seat. Half the time he fell asleep on the Brooklyn Bridge. I arrived home after each session exhausted and nauseous.

But the sessions themselves were amazing!!

Dovi's Occupational therapist was the darling Terry, who had way more energy than I would have expected. The gym had everything -  many different kinds of swings, a ball pit, everything an OT gym needs. Terry would get into the ball pit with Dovi and did all kind of exercises with him which he loved. She did fine motor activities with him and worked on his eye contact. Dovi loved every minute of it. But the commute wrecked me.

Sensory Processing Disorder and Barefoot Toddlers

I wrote this post on Sunday, but waited a few days for Hanna Andersson to approve me as an affiliate. After a few days I finally called them and went through a whole wild goose chase until I got to the right person and I got approved. I was so excited about this post because it is my first *real* Affiliate post and it's a pity it took this long to go up; in the meantime I had my school interview and raising money for Dovi's schooling took front and center so I pushed off posting this. But I'm still excited about this post and I hope it can help mothers of other kids who abhor shoes.

When ASD was born, he wasnt alone; he was born along with his triplet sisters, SPD and ADHD. And no, I'm not referring here to Asher Sam David and his sisters Sarah Patty Diane and Audrey Deena Helen Danielle. I'm referring to Autism Spectrum disorders and the twins Sensory Processing Disorder and Attention Deficity Hyperactivity Disorder. The three generally go hand in hand. They are very often joined by a Seizure Disorder, which luckily -knockonwood- is not the case here.

But Dovi's got SPD and ADHD BAD.

The ADHD reared its ugly head a little later; at this point in the narrative Dovi was still relatively well behaved, about as well behaved as a typical 2 1/2 year old. But the Sensory Processing Disorder is what preceded the autism; he was stimming as early as 17 months old. Grunting noises, checking out his fingers, eyeballs, ears, you name it. He was a sensory seeker instead of a sensory avoider. Rubbing himself on floors, needing to squeeze and touch things all the time, and so forth. I didn't know about any of this though, nor what it all meant.

PLEASE DONATE TO THE DOVI EDUCATION FUND

It is embarrassing for me to write this post but I don't have much of a choice.

Readers, I went with Dovi today for a school interview for the coming school year of 2013-2014.

I am speechless, blown away, and in tears.

THAT SCHOOL IS INCREDIBLE. AMAZING. BREATHTAKING. EXTRAORDINARY.

WHAT I'VE BEEN UP TO

From my blogger dashboard I see that my faithful readers are coming back again and again for new content and are disappointed that there isn't new material. So where have I been?

Don't think I've abandoned this blog. I haven't. As a matter of fact, I wrote an amazing, exciting entry where I finally review helpful sensory products. The problem is, I applied to the affiliate program of one of the products and have been waiting. And waiting. And waiting. The company is not writing back. And it's frustrating, because I know my readers will go and buy the product, and I'd like a cut of it. Yes, I'm selfish. Ha.

So I'm waiting to hear from the company. If I still won't hear from them by tonight I'll post it as is; it's a shame to let time slide by without new content.

I've also been busy with other things; I've been tinkering around with the layout of this blog and it's a lot of fun. Note the new tabs all the way on top of the page; I love the new streamlined look; hopefully it'll make navigating this site easier for newbies. I must thank my friends Hindy G. and Chaya B. for their selfless assistance and ideas.

The saga continues (plus: Uncle Moishy on Amazon!)

Once Dovi began getting ABA at the basement, my life changed for the better. It was incredible. I couldn't believe that I actually had the mornings available to do stuff. Sure, there were some downsides too; suddenly I had to have Dovi dressed, ready, and out the door at 9:30 a.m., and I had to have breakfast, lunch and snacks all packed up too - but I was able to live. There was no more screaming in the house, no more scrambling to get the place spotless for 2 fastidiously tidy therapists.  Best of all, I was able to run errands, take naps, and do housework in the mornings.

And Dovi loved the new setup too. Ellen, the new therapist, was amazing. The combination of her enthusiasm and love, the large empty space, and the lack of hovering mother around meant that for the first time in months, he was finally making progress.

Life was easier, but it was still incredibly hectic. After picking up Dovi from ABA at 12;30, he still had Speech and Occupational Therapy in my house,and I was always rushing, rushing, rushing somewhere. But it was definitely better than the disaster home ABA had been.

Dovi loved going to the basement. He literally ran. I liked to sit and watch Ellen in action sometimes; it was amazing to see the progress. She zeroed in rather quickly on his sensory issues and other quirks. Before long she had taught him to walk independently to the little table, do his work,and she rewarded him with big hugs, social praise, and swinging him in the air, after which time he was allowed to go over to his play corner for a few minutes of free play. It was amazing.

An angel named Rose and a community of Kindness

The wait is finally over, dear readers, and it's time to tell the tale of an angel named Rose..

Let me introduce you to my saving angel, Rose. She is so quiet and invisible that I often forget about her and I only remember her existence when things get really bad and I urgently need an advocate between myself and TABAC (which bh has not been necessary since June.)

Rose is actually the daughter of my community's Rebbe.  She's two years my junior and I know her well from summer camp and community events. A dignified, brilliant mother of a large family (KE"H), she is the quiet force behind the scenes for hundreds of parents in the community who deal with children with mild and major special needs. She's the go-to person between the schools, the therapy centers and the parents. Often a mother feels so overwhelmed and confused when first discovering that her child needs therapy intervention and doesn't communicate effectively with the principal or the therapy center. That's when she steps in. She listens, empathizes, and comes up with solutions.

When Chaim's preschool teacher had first told me to seek therapy for him, I was taken aback. I called up the main school office and was directed to a person-in-charge, who helped me compose a letter to the Board of Ed requesting an evaluation - and then she told me to call Rose so we could determine together what was wrong with Chaim and what he might need.  At the time I was a little put off by her, because she hinted that Chaim might be on the spectrum due to some of the symptoms I was describing. But she directed me to the behavior specialist at TABAC, who came down - as a favor - to observe Chaim at school, who told me his issues were really not that bad - and then the specialist promptly suggested that Chaim come to the ABA center to get all his therapy back-to-back.

No thanks.

IN WHICH I DRAW OUT THE SUSPENSE EVEN FURTHER

Oy. I'm so tired. It's been a nutso week. I'll discuss the Ritalin later, or another time, but things were better today. But anyway, I left you hanging for so long about that life changing phone call by that mysterious Rose so I'll just pick up the thread of the narrative and write until my stamina peters out, which is how I've been operating until now.

But I have to backtrack and fill you in on a few little details prior to Rose's phone call.

So Dovi wasn't doing very well with the therapy, and neither was I. He had six different therapists: Hannah, Bessie, Debbie, Vivian, Malia, and Lynn. There was no communication between them, no one to coordinate what the goals were. (So much for Naomi making a condition for switching over to her agency for Service Coordination; Becca was doing a good job being my "social worker", but there was no coordinator for Dovi's actual goals.) Additionally, they all had different ideas and approaches and requests. Vivian wanted me to try to get a swing, Debbie asked if I could get a little table and chair so she culd work with him better, Malia wanted me to buy bubbles, I forget what Lynn wanted. They were also a little lost on how to work with Dovi since he wasn't responding much to the therapy. So I bought a cute little notebook, pasted a picture of Dovi on the cover and wrote "Dovi's Progress", and the therapists began communicating... sort of.

PLEASE SHARE WITH ME YOUR RITALIN EXPERIENCE

So yesterday was Day 1 of Dovi's Ritalin trial. I snuck it into his farina at about 9 a.m. and it went down well.

His teachers reported as follows:

"Dovi worked well for the first 45 minutes of our session. Then around 10:45 he seemed very unhappy and in pain. I took him out in the stroller and he calmed down.  The rest of our session he jumped around and was no calmer than usual."

His afternoon teacher wrote:

"Today Dovi ate matzah, lettuce, and cereal and milk. He was a little wild today, however he did the programs well. G-d wanted Dovi should go on a walk, because the fire alarm went off, and on a walk we went..."

So there was no change on the first day, except for the unhappiness in the morning. Since one of the possible side effects is headaches, I resolved to give Dovi Motrin in the morning. I was also careful to look out for his sleeping, since Ritalin can cause insomnia. To my surprise he fell asleep at his normal time and had a restful night's sleep. He was also pretty calm in the morning. He didnt want farina today so I had to sneak it in his juice, but the medication stayed stuck in the plastic cup and I had to put it on his tongue like koolaid. I also gave him Motrin.

Testing testing to see if posting to Blogger via text works.

Ritalin and Signing

I hate jumping tenses in my narrative, thus I'm loathe to share some of the momentous happenings of today. I'll therefore mention two huge accomplishments of today and elaborate on neither, just leave you to think about them.

1. Dovi was seen today by a fantastic, top-notch, extremely-difficult-to-get-into child psychiatrist who specializes in autism. It was quite the experience and I'm still blown away. Tomorrow I start Dovi on a trial period of Ritalin. I'm holding my breath.

2. Dovi consistently signed for 'drink' today. Consistently. He's being taught signs but has been mixing them up, or signing only when prompted. This was completely spontaneous and unprompted. For the first time in 2 1/2 years I actually felt like my child was communicating with me. Asking me for something. Out of his own volition. Connecting with me the way a child connects with his mother.

I don't even know which of the two excited me more.

Time to celebrate. With Abe's of Canada Sugarfree, lactose free Vanilla Caramel ice cream maybe.

HOME-BASED ABA IS WORSE THAN CHINESE WATER TORTURE

We last left you off in the latest installment of our serial story (which should be aptly titled "Never A Dull Moment") with our arrival back home from what can be loosely termed "summer vacation", although it had been anything but. I immediately fell onto an endless treadmill of stuff. My husband's second-to-youngest sister was getting married a week later and I did not yet have a dress to wear for the occasion.

So off we the very next morning, boxes still unpacked, to register Chaim for day camp for the one remaining week of the summer (we had come home early due to the selfsame wedding) and then to the underthings store and to the fancy dress store. Thankfully I snagged a pretty black suit - that's what the ladies wear nowadays to weddings around here - and the boxes got unpacked,the house got cleaned up,and I braced myself for the crazy schedule to come.

It didn't happen all at once. Within the first week Dovi slowly started 'related services' in the form of two new speech therapists, Malia and Debbie (Vivian would be coming home from the Catskills a week later) and Lynn the occupational therapist. Dovi cried with all of them. Debbie was "ABA trained" and tried to implement ABA-style methods, which Dovi, of course, hated. Malia, a sweet, 'regular' speech therapist, was at a total loss on how to reach Dovi. Fortunately she had some exciting toys with her, such as the gears toy Vivian used, and Dovi cried the least when she came, viewing it as play time. Lynn immediately zeroed in on Dovi's varied sensory issues and we devised techniques together to get him calm and cooperative. We created a swing out of bedsheets and swung him vigorously together before every session. She initiated a "brushing" program to give him deep sensory input on his skin, and she often created a tent out of  bedsheets and dining room chairs, creating a quiet, soothing, enclosed environment for him to work in. The first month he cried straight through his sessions, but gradually he got used to her techniques and found them soothing and began cooperating with her.

DOVI'S FAVORITE MORNING HOT CEREAL RECIPE

Dovi is a terrible eater. I don't recall who coined the term, but I refer to his issue as "Food Swings." He'll LOVE eggs for six months and then have nothing to do with it for a year. He had a love-hate relationship with chicken; right now it's in the love stage. He has another love -hate relationship with yogurt; at the moment it's at the smear-everywhere-except-to-my-mouth stage. He loves snacks - the more savory and spicy the better. He loves barbeque or garlic or falafel flavored anything. Breakfast is a real challenge; I'll painstakingly prepare 80 different kinds of food for him and he'll just fling it all on the floor. Toast, cornflakes, granola, lettuce and peppers... they're all hit-and-miss, depending on his mood.

A year or so ago I discovered that he has several nearly-never-fail foods, which he'll gladly eat anytime, whether it's for breakfast, lunch, or dinner, unless he's in a real "mood" or is full from a recent big meal.

French fries is one of them. Pizza wraps is another. Frozen peas, anytime. The crowning glory? Hot farina. YUM.

My husband often brings home a steaming container of farina from our local cafe, on mornings when he's off from work or has spare time. When that's not feasible, I cook it myself. It's tricky though; it often comes out lumpy, overcooked, undercooked, too salty, too sweet, whatever. It's tough.

On a lighter note...

I was just looking through the stats to see what google searches brought people to this blog. The results were pretty interesting.

autismparentinghelp.blogspot.
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	I hope everyone who came here via searches has found what they were looking for. Thank you for looking for me and keep looking!

AUTISM PARENTING IS A FULL TIME JOB

This is ridiculous. I started this blog filled with idealism and motivation, brimming with incredible material to write and discuss. I tinkered with the blog setup and different affiliate programs and links and whatnot. I spent tons of time - time I don't have - networking across the blogosphere with other Autism Mom blogs, with very disappointing returns. The project I was so excited about, which started off with a bang, feels like it fizzled out too soon. I'm not thrilled.

Because on top of my inability to spread the good word about this fantastic new blog, I found myself suddenly with no time to write new posts. And if there's no new content, a blog is worth about as much as last year's snow.

Being an autism parent is a full time job. Aside from dealing with the usual stuff - the mess, the stress, and the distress - there is just so much work to do. Here's just a partial list of what I've been busy with all week:

WHAT DO VETERAN'S DAY, HALLOWEEN, AND THANKSGIVING DAY HAVE IN COMMON? They're all mentioned in this post.

I haven’t updated in a while and I apologize. I’ve been extremely busy. Monday was Veteran’s Day, which meant Dovi was home, and although I was fortunate to have volunteers take him out, it was a shorter day than usual. In addition, it was my turn to cook dinner for  a relative who is not well, which meant the kitchen was a disaster zone. Yesterday both boys missed their buses, and for some reason I was plum exhausted all day and could barely function. My netbook has been frustratingly slow and freezing up way too often. All together it’s a recipe for disaster. Errr, I mean, for not updating the blog. My brain is percolating with ideas and bursting at the seams with articles waiting to be written; but life hasn’t stopped and I’m still racing on the treadmill.

When I finally sit down in front of the screen to write, I feel a little lost. The sheer amount of things left to say is overwhelming. I originally planned to keep this blog in chronological narrative form, but I realized that it will take me months – nay, years! to catch up to the present. So much happened every single day in the past 2+ years, that by the time I’m done writing about all that, another year will have passed and I’ll have more to catch up on!

Additionally, I think it’s a bit unfair to just keep harping on the past – a past where I was bitter and resentful and depressed and thought I would never reach the precious point of Acceptance – without talking a little bit about the present and focusing a bit on the positive.

SUMMERTIME, AND THE LIVIN' AIN'T EASY.... or: WHAT THEY DON'T TELL YOU ABOUT ABA THERAPY

Do you remember a time when your really, really wanted something really badly, pinning all your hopes and dreams on it, awaiting that incredible something with massive anticipation, and when you finally got it, it was a major disappointment? Or worse yet, it was horrible, awful, terrible, and you just wished you could give it back but couldn't?

That is exactly what happened when Dovi finally started therapy.

The first therapist to show up was a Speech Therapist, named Vivian. She was gentle and kind and loving, but Dovi just cried and cried throughout the sessions. He refused to sit in one spot and felt overwhelmed by the simplest task, the slightest touch. He did not know what the therapist wanted from him and did not respond to any of her commands. He cried and cried.

And so did I.

It's really difficult to listen to your child cry and be unable to -- or not permitted to -- intervene and make it all go away. My brain knew that this was for Dovi's good and the crying did not mean he was in distress. But my heart was aching and I couldn't take it.