The Turning Point

Tonight is the first night of Chanukah. As we lit the Chanukah candles, my thoughts were with Dovi. It has taken close to a year of work to push the guilt feelings aside and actually enjoy the moment. This night was filled with memories of a year ago, Dovi's last Chanukah at home with us. We had just received the news that Dovi was accepted at the residential school, and he would be moving out in approximately six weeks. Our emotions over Chanukah were mixed, to put it mildly. I think I spent the next six weeks with a perpetual lump in my throat.

I think today was a very appropriate day to sit down and reflect on that pivotal day when I moved into a new phase of my life - June 13, 2013, the day that Residential Placement inched its way slowly from the back burner to the middle burner.

Before I begin, I want to thank the devoted readers of this blog who have hung in until now. I apologize for taking such long stretches between writing chapters of this long-drawn out story. Between struggling to keep up with my Ebay/Poshmark "business," dealing with real life issues, and bracing myself for delving into the dark time that was 4 1/2 years ago, it takes a lot out of me to write these entries. So thank you for cooperation.

In any case, here's the pinnacle, the climax, the apex, what have you, of all the events leading up to the catclysmic moment when the world around me changed, forever. The moment when the niggling thought of 'one day we'll have to place Dovi but not yet' came into very sharp focus. It would take another 3 1/2 years until he would actually leave home,  but it was the defining moment when I realized that it was a definite reality.

The weeks leading up to the summer of 2013 were extremely difficult, to put it mildly. I was dealing with the effects of a third trimester of pregnancy at age almost-37. Everything hurt, and I had no energy. I was constantly busy with an overwhelming amount of research and advocacy and paperwork and scheduling caregivers. All kinds of crazy incidents happened then, such as the blow-up with Leticia, worrying about finding places for Dovi when I went into labor, getting his camp stuff set up, and most difficult of all - handling his newfound obsession for ripping paper.

The underlying reason for the vast majority of Dovi's destructive behavior has always been intense sensory seeking. Whether it's ripping open endless oatmeal packets, jumping in and out of the bathtub, spilling water and liquids, smearing ice cream on walls - it's all to get sensory input he desperately craves. Sometimes I was successful in redirecting his need for sensory input, after endless brainstorming and shopping and trial and error. Most of the time, I wasn't. Then Dovi discovered ripping paper. Apparently he was taught how to rip paper during Occupational Therapy at TABAC, and it delighted him to no end. Suddenly, no sheet of paper in any shape or form was ever safe. We had to hide all forms of paperwork, magazines, newspapers, and books. Fortunately I don't have any daughters whose homework would inevitably have gotten destroyed. But magazines were a big casualty. It was difficult to remember every single second of the day to hide all papers in the house. When I realized that this meshigoss wasn't going away anytime soon, I started supplying him with all manner of scrap paper to go to town with - old newspapers, a package of construction paper, ad booklets. We had our own built-in paper shredder. All that left the house blanketed in paper - it looked like Ground Zero. Leticia did not approve, of course.

Fabulous new tactile sensory toy I Discovered.

Two weeks ago, Binah Magazine ran  feature on Sensory Toys. A large part of the article was a result of an extensive interview I had with the writer; many of the toys were ones that I had profiled here on the blog. It was interesting to see how she put it together. There was one toy, however, that I had not heard of or thought of, and I immediately ordered one from amazon. It's really meant as a 'tummy time' mat for younger children. It turns out to be an amazing sensory experience for Dovi.


Dovi loves splashing in water. This mat provides him with a safe, dry way to punch and pound and squish at water. Unfortunately, on the first day he already bit into the plastic part which is inflated by air, and I am afraid Chaim emulated him by biting into the water part - in any case, it's already sprung a leak, and while I closed it with Duct tape, it's not a lasting solution, so I already ordered 2 more such toys off Amazon, one which I might donate to the mini day camp end-of-summer program Dovi is fortunate to be attending now between camp and school.

( by the way on the amazon page, for some reason, you'll see a doll featured. Dont fear, it's the water mat. Also, it's hard to figure out how to open the valve to fill it with water. You have to push the cup in and down slightly to access the small opening.

Best Tactile/Proprioceptive Sensory Toy EVER

Move over PlayDough, balloons, rice, sand.... Welcome GAZZ-IT / FLOAM.
It's cleaner, more fun (cuz it's stretchy), never dries out, doesnt leave such a mess, and best of all, Dovi doesnt eat it, or swallow it. And even adults enjoy the sensory experience of rolling and kneading this compound.
I bought the GAZZ IT locally (and you can find it at Dollar Tree), but on Amazon I found it as PlayFoam.
Fantastic for OT and sensory touch.


                                   

   

Kitchen gates, Refrigerator Locks, and Sensory Bins

As you've been reading in the past few posts, last winter I took many steps to ease the burden of caring for Dovi. We had res hab counselors, monthly weekend respite, ambulette transportation to school, volunteers on Shabbos... things were definitely calmer. But there is one major remaining issue that makes life around Dovi extremely difficult - unbearable even, at times. This past Shabbos was so bad in this respect, that my husband and I had a rare argument on Saturday night.

Dovi's high sensory needs and my inability to set and enforce limits in the wake of his soulful eyes and begging hands wreak havoc on the house. He has a constant need to throw things, pulverize things, smear things... a combination proprioceptive/tactile need. It's endless, constant, and superfire rapid. 

This past Shabbos, in the span of 1 1/2 hours he destroyed 2 bags of confectioners' sugar, a package of pancake mix, a bag of rice, several rumballs, and ground nuts. It takes him sixty seconds to rip into it, spread it all over the kitchen and dining room, and then head back for more. When he was done with the  powdered stuff, he took to the solids: multicolored straws, baking paper, rubber gloves, plastic spoons. By the time my husband came home from shul, it looked like an earthquake had hit in a grocery store.

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.

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.

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: