Bed Tents for Autistic Kids & Mini Houdinis, Part 3

I am editing this post on 3/6/2017.

Despite whatever content this post contains, I am finding that this post is first in search results because of the desperate search by parents of elopers for solutions for their autistic kids.

While the only thing that worked for Dovi was the Pedicraft bed, the Privacy Pop Bed Tent works for a lot of children who are not extra severe and aggressive.

Here is the amazon link:




And now back to the regular content of this post.

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Soooo eventually, it happened. Dovi managed to rip off a zipper from his 'indestructible' Pedicraft bed. We managed a temporary solution (moving the bed to the wall, putting in a bigger mattress) until the company we purchased it from can come and service it.

Meantime, last I checked this blog, it was getting almost exclusively search hits for bed tents for autistic kids. People are panicking all over; there are no easy solutions, especially since the company selling the Ready Set Bloom tents is temporarily not selling them because the latest shipment was faulty.

Between my recovery from the new baby and the multiple 3-day holidays we just went through, Dovi spent a lot of time at different respite providers the past 2 months. At one of the weekends he managed to break a pop up tent and rip up a Ready Set Bloom Tent. The kid is truly Mini Houdini.

We'll be seeing Dr Cartwright this week to revisit his medication. Risperdal just isnt cutting it. I dont know if we should add Intuniv or a stimulant. Guess we'll leave it up to the doctor.

He is doing very very well at School C - I couldnt be happier than he ended up there. The paras are full of warmth and love, the curriculum is great, and I'm part of a parent body of 11 other mothers in my neighborhood. Had he gone to School A, I would be weathering all sorts of snafus like transportation issues and administrative frustration on my own.

Our new Home Health Aide is a lifesaver. She is available whenever I need her and works extra hours whenever necessary. She loves Dovi and is so devoted to him. I thank G-d every day that things are finally calming down after 2 really difficult months.

The new baby, whom I'm calling Levi on this blog, is a source of joy and comfort, bli ayin hora.

Life is up and down constantly, a true roller coaster; easier days and harder days. My therapist is really helping me get through the tough times, and G-d always ends up being there for me even when I dont see it. I have so much to write. So many little stories to tell. One day.

But for now, let me help those of you who ended up here searching for a solution for your own mini Houdini. I will share with you the different tents his respite providers have:

I have so much to say. So much to write. But no time.
I can't wait to share the incredible series of events that led to Dovi going to summer camp, and how incredible summer camp was for him and for all of us.
I can't wait to blog about what it's like for a parent of a severely autistic child like Dovi, to make a decision to try for another baby, and what it's like to go through a pregnancy, birth, and postpartum period with a child like Dovi at home (or in camp as it was in our case).
And so forth.
But not yet.
Today I just want to talk about some of the recent purchases I made for Dovi.
Before I do, just two quick updates: The new school - School C - is PERFECT for him. He fits in there like a glove and he has an incredible teacher and paras. I'm so glad we made the decision when we did. I thank HaShem for that.
Also, I did not take Leticia back as Dovi's Home Health Aide after the summer. I had a lot of issues with her; we did not get along - major personality clash - and i realized that with a new baby I would need a lot more hours than she was willing to work. HaShem sent an amazing, amazing girl whom I'll call Charlene, who has been an absolute lifesaver for us, especially now with so many 3-day YomTovs. We would not have survived without her, seriously. She's a major help, willing to work hard, punctual and pleasant - a true Godsend.
Anyway, on to the purchases.

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.

It's a Trifecta!!!

On Sunday we went to visit Dovi at summer camp. He is so happy there, and well cared for, and it took him a minute to recognize us but he was thrilled! I came home all smiles, knowing he's in the best of hands, and ready for the next big adventure...
...which didn't take long in coming. The very next day, on Monday, I gave birth to a little boy! Chaim and Dovi now have a little brother. And with this announcement, many things will become clear to you readers: Why it had gotten so much more difficult to care for Dovi - I was physically incapacitated and mentally drained.... And that is why Dovi went to summer camp, and lots of other little things between the lines were as a result of being pregnant basically since I started this blog.
And which is why I will probably have no time to update the blog anymore, more or less.
But I had to share this wonderful news with you, my dear readers!
Oif Simchos!
(P.S. He was born a few hours after His Royal Highness Heir to the Throne Prince George Alexander Louis :) )

Summertime and the Livin Is a Bit Easier....

I wasn't going to post this since I'm loathe to use the blog in the present tense, but I think I owe my Dovi fans an update. Boruch HaShem, with massive twists of Divine providence, Dovi is in sleepaway camp!!!
One of the special needs camps we had been considering for him was not going to open for this summer, and at the last minute, it did. I was a little nervous before the camp session about his safety and the compatibility of him with the camp staff / program, but thank G-d, it's proven to be just what the doctor ordered. From the photograph they send me every week it is clear that he is thriving there and having the time of his life. he is being loved and taken amazingly care of and having a blast. It's scary to see how relaxed my family is without him around, which has caused all sorts of anguish and pain for me as I reconsider just how deeply his autism and hyperactivity affect my home and family. The house is spotlessly clean, Chaim and my husband are so calm, there is supper on the table every night, no counselors and aides traipsing in and out... it's a welcome respite from the strain and stress of the entire year. It's painful to think of what our lives would look like without Dovi's autism and hyperactivity, and it's frightening to think of how we'll be able to continue handling it as he gets older and bigger. HaShem will have to help, He's helped us til now.
But for now, I'm simply relaxing, taking care of myself, paying Chaim extra attention, and taking all kinds of steps within the home to make life with Dovi easier when he comes home. I took apart his clumsy bedroom furniture and instead put in a small bookcase and kiddie table, a timer for the light and a safety gate for the door. I want to introduce him to playing in his room so that the rest of the house stays cleaner and more organized and the mess gets confined to his room. I want to spend my spare time this summer looking at the Son Rise videos and trying to implement some of it when he comes home, G-d willing.
The photos of Dovi in camp are priceless, but I don't feel like posting them here. I'm so grateful to HaShem for making it work. I can't imagine what I would do with him all summer with so many fewer resources - no Sunday program, no Shabbos volunteers, fewer res hab counselors available, and the crazy heat outdoors. Dovi goes swimming every day, has big wide open empty spaces to run around in on the grass, and is getting top notch therapy and schooling even up there. I miss him like crazy - I cried myself to sleep the first few nights of him away - he's never been away for this long. But I know it's for his good, the good of his family, and he's loving it there and is loved and cared for by a devoted staff, which makes the separation easier. Visiting day is on Sunday and I can't wait to see him. I wonder if he'll recognize me!
Hope you're having a good summer yourself!!!

Strollers for the Older Autistic Child Revisited

Unfortunately our experience with the Special Tomato EIO stroller did not work out as we had hoped. The hood has broken, the stroller is dirty, it's very hard to fold/transport, and the biggest issue is that simply cannot seem to keep the harness tightened, therefore Dovi climbs out of the stroller instantly. It's a disaster. For now, we're back to the old trust Mclaren Techno XT, which at least is keeping him contained, but he is way too big for it and his legs reach the floor. We are now in the process of working with a Medicaid Equipment provider to get us a Mclaren Major Elite. It doesnt look wheelchairish, will fit him right, and is easy to fold. Hopefully I can get the scrip from the pediatrician asap an they can get to working with Medicaid o cover it. I will keep you posted...

It's Dovi's Party and I'll Cry if I Want To....

To my dear beloved special Dovi,

In all likelihood, you will probably never read this letter. It will take a miracle for you to ever learn to read. I have learned to stop expecting miracles. I am still waiting for you to call me “Mama.” It might never happen either.

This Shabbos is a very special day. It is Totty’s and my seventeenth anniversary. Five years ago, on our twelfth anniversary, something incredibly special happened. I’ll never forget that moment as long as I live. After 9 months of pregnancy and 13 endless hours of labor, a writhing, screaming, gorgeous, pink, healthy 7 pound little boy was thrown onto a blue sheet that had been draped across my belly. I cried for five minutes straight. I couldn’t believe that after struggling with infertility for 9 years, and struggling to raise a head-strong preemie for almost 3 years, I was granted a second chance at making things right. A little brother for Chaim. It was incredible. Totty and I looked at each other and I commented, “How amazing is it that on our twenty-fifth anniversary we will celebrate this baby’s bar mitzvah?” The future was bright and exciting, the possibilities open and endless.

Little did we know.

Shoutout!

Shoutout to Dovi's Respite House counselors who showed up tonight and took him to the wedding of a third counselor. They gave him the time of his life, as he rarely goes to weddings. I can't wait to see the pictures! [waves]

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.


                                   

   

Has Anyone tried the Son-Rise program?

If any of you are an autism parent, I am curious if you have tried the Son Rise program?
I heard so much about it but cant imagine how I can implement it in practical terms. I don't have spare room in my house, and Dovi does not sit still. Plus, I hardly have any one-on-one time with him so I don't even have when to implement such a program. In addition, the training is costly and involves traveling. I wish there would be a way to train long-distance via Webinars or DVDs.
I'm curious if anyone has tried it - specifically if you have a really low functioning child like Dovi. Please let me know if you did. Thanks.

The Future of the Blog

I started this blog in October for a few reasons.

1. I had given up watching shows online and wanted to do something else to fill my time.
2. I knew I would need to raise funds for Dovi's schooling and thought a blog would be a good fundraising vehicle.
3. I was bursting to write about Dovi and didn't know where to begin.
4. I wanted to help other parents desperate for guidance and resources.

The blog has basically come full circle. I have told Dovi's story. All the ups, the downs, the positive experiences, the difficult ones. The story is, of course, far from over. Dovi is not even five years old yet. We don't know what his future holds, and it scares me often. There are days that pass quietly, with all his resources in place, and days where everything implodes and I simply don't cope. The fact that he is getting older, heavier, and more stubborn, and life with him will only get harder, not easier, is terrifying. Of course, we are not giving up hope that some day his behaviors will improve, his language will kick in, and life with Dovi will be easier - or at least tolerable - but for now, it is what it is. A life-changer. An ever-present monkeywrench. We love him for who he is, not for who he was or who he can be. Just for being precious, lovable, innocent - and the big challenge of our lives which may likely be the sole reason of our existence.

So let's analyze which of the four objectives of the blog have already been accomplished and which ones failed:

Recent toy purchases and other attempts at demystifying the Sensory Puzzle

Becoming the mother of a high-maintenance, high-energy, hyperactive autistic child has changed me forever. Some changes are positive, and some negative. It has definitely altered me as a person and redefined the roles my husband and I play in this family. Raising Dovi is an extremely stressful endeavor and sometimes I wonder if I'll buckle under the weight. When he is home, I am always on edge, trying to keep one step ahead of him. When he's away on Respite weekends, I miss him and feel guilty and feel very sad that we even have to send him to Respite weekends. But of course, I also breathe a little and destress from the constant heavy burden that keeping Dovi safe, healthy and happy entails.

Despite having so much help and so many resources in place, often the carefully woven net falls apart. Our two weekend respite providers both had no vacancies for the upcoming month and it left me scrambling to find additional help in the form of community volunteers and res hab girls. Then there was a snafu with his Sunday program; the two community programs both wanted the other one to take Dovi for next year, leaving me in tears and panic about the many long Sundays of the 2013-2014 year. Additionally I'm kind of stressed about filling the various holes that will crop up this summer with many of the girls going away for the summer or taking on summer jobs. So being Dovi's unpaid Service Coordinator and Advocate is one of the many hats I have to wear from time to time.

Another of the many hats I had to don in the past two years is the one of Detective. With a nonverbal child who displays bizarre behaviors, life is always a guessing game. Why is he behaving this way? Why is he crying? What does he want now? Whenever Dovi is on a new medication, it's a guessing game to figure out if his behavioral changes are medication related, autism-related, or somthing-else-related. Meeting his sensory needs is also a constant guessing game. Dovi is a whirlwind of motion at all times; he'll jump onto tables and couches and counters, spill stuff and smear it everywhere. You need the energy of a teenager to keep up with him, a lot more than that of a tired 30-something mother.

This is one topic you probably do not want to read about.

The topic I am going to discuss now is very unappealing, unappetizing, and downright disgusting. It is, however, a very necessary topic for parents of autistic children, and of other intellectual disabilities and intense sensory issues. It's something I had to contend with for a while until I finally found the solution and I am eager to share it with others. If you are not dealing with this yourself, you might just want to skip it over, for as I said, it's unappealing, unappetizing, and downright disgusting.

When Dovi was first diagnosed and I was talking about it with some of my fellow special needs moms, I kept hearing how lucky I was that Dovi did not engage in the biggest nightmare for autism parents: Fecal Smearing. Dovi had no interest in the contents of his diaper, and although he occasionally did make a mess of things if he happened to poop on the floor or bathtub, it wasn't a regular habit and I didn't worry about it.

Until the day came when it became a fairly regular habit.

Strollers for the growing special needs / autistic child

I started this blog in October 2012. Based on where we are in telling Dovi's story, we've almost come full circle. I have only 3 or so months of material before we hit October - and nothing of note has happened since then, aside from what I've thrown out between the lines. I'm also reluctant and leery to keep this blog open as a present journal; my focus here was to help out other parents of special needs children, specifically autistic ones like Dovi, with our resources and ideas and product reviews. So while I'm not closing the blog soon nor stopping to write, I am definitely winding down with material left to tell.

But there are still two major purchases I made this year (besides for the incredible Pedicraft bed) that I would like to talk about, and after that, I will reexamine the future of the blog.

For now, I'll pick up the thread of the narrative in August of last year.

An Update on Dovi's School

Today I went with Dovi to School C for some intake evals. I have to say that I did a 180 on my impressions of the school. Somehow, seeing how happy Dovi was in the loving, warm environment, and how much everyone already adored him, melted my heart. The clinicians were able to engage him, and they all really knew what they were talking about. It was good that I took along Dovi's TABAC therapist who was able to talk to the educational/behavior director about Dovi's specifics and progress. I left a lot happier with our decision. School A is a distant memory; I think Dovi will fit right in there and will thrive nicely, with G-d's help.

It will still cost us, but only about a quarter of School A. Hopefully we'll be able to swing it financially (they're a lot more laid back about the money and don't hunt you down like School A does).

I'm happier than I've been in a long time; I'm so glad the tension-filled decision has been made a month ago and that I feel so much better about it.

Summertime, and the Livin' Ain't Easy, Take 3

You may be wondering if I have a photographic memory, churning up these posts about past years and months down to the last detail. But in truth, I spend hours combing my Facebook archives for my old status updates in order to formulate the entries on this blog. Of course, I also remember these events in vivid detail, but I do need to reread my old posts to firm them up. Whenever I do this, I am stunned just at how much I managed to undertake, implement, execute, and survive. Where did I take strength to do all this? I marvel. I don't know. Seriously.

Reading just how much energy, effort, and sheer action I had to put in during the seven weeks we spent at "Kiamesha Hills" leaves me breathless and exhausted, and I'm sitting down while reading this. I honestly do not know how on earth I undertook such a daunting, strenuous, overwhelming task as this. And I am just as honestly admitting that I probably do not have what it takes to do it again. I'm afraid that by and large our 'country days' are probably over, unless Dovi ends up being able to go to summer camp, or staying with a respite family in the city for a couple of weeks. Doing what I did last summer - being there full time with Dovi without our usual roster of respite helpers - is not something I think I can do again.

It was that hard.

PROGRAM NOTE: RE: COMMENTS

I realized I've not been getting comments so I lifted the restrictions against commenting only as a registered user. Anonymous people can now comment. However, I will be monitoring the comments so no spam can get through. So feel free to start commenting again if you're a real person posting a relevant, non spam comment. Thanks!

Hashem is Here, Hashem is there, HaShem is truly Everywhere

Continued from the previous entry:

The first phone call on that morning, a week after I had surrendered it all up to HaShem, was from Zehava. Back from Israel from her 2 week trip, she was fully on board to help me find therapists for Dovi for the summer. All was not yet lost. She would still speak to all the other branches of TABAC and try to figure something out for me. I breathed a bit easier. So all was not lost after all.

The second phone call was even more exciting. One of the phone calls I had gotten from my ad from the Hamodia had been an unremarkable, non descript, slightly nasal sounding  message with a local phone number. "My name is Rachel [garbled], I'm a SEIT, please call me at  _____." I returned her call and got an answering machine and promptely forgot about it, assuming it was someone who thought it was a city job. To my surprise, almost a week later, Rachel called me back. She lived in Israel and was planning to be in the Catskills in the summer. She had a bilingual masters degree and was employed with TABAC - she had worked in the main headquarters until she had moved to Israel. She had a lot of experience with low functioning, non verbal kids like Dovi. One of her older sisters also worked at the main headquarters and her other sister was almost getting her masters and would start working after the summer. Her younger sister did Res Hab and was available in the summer.

WHAT????

It sounded like a dream, too good to be true.

Summertime Livin' Take 3

I hope you're all having a wonderful Pesach.

Things worked out really nicely around here, Boruch HaShem. I had been extremely worried how I would manage to bring in Pesach, and how Dovi would behave during the seder. In the end, he wasnt feeling well for about a week, so he was well behaved enough for me to do all my Pesach prep and he slept through the sedarim. He's on the mend now, Boruch HaShem. I had a nervewracking few days when he was supposed to have been well already but was still very drowsy and sleeping for way too many hours. I finally figured out that the increase in his meds, which coincided with his week-long virus, was not good for him and with his doctor's instructions we scaled back until we will see him again after Yom Tov. Today we went to a farm where Dovi delighted in touching the sheep - and then tried to climb into the pen! We had to strap him back into the stroller, real quick....

Before I continue on to the next topic, which is another incredible Divine Providence story, I'd to close out the Home Health Aide series. The third aide sent by the agency, Leticia, turned out to be a good fit. She is extremely devoted to Dovi, who loves her back. Unfortunately, she doesn't really like doing housework, so we did lose our 'clean house' that we were used to during Danuta's time. She is also late a lot, and spends a lot of time on her Iphone. But on the plus side, she does a great job feeding Dovi and giving him baths and getting him into pajamas. While we sometimes have minor issues or arguments, we get along pretty well and she is really not a bother; our family can go about our business while she's here, and she doesn't ask for anything. It's great to have someone in the house during busy times like Yom Tov when there is no school. One of the best things that came out of Leticia's presence is that Chaim learned a perfect English around her. All in all, she's a lifesaver; we feel her absence keenly on Sundays (she only works Monday to Friday) and on the few legal holidays that she actually takes off, like Thanksgiving and Xmas. I am grateful every day for the existence of homecare for children with disabilities and that it's relatively simple to set up. If anyone reading this lives in New York and has a child with a  disability and a pediatrician that will gladly work with you to request homecare, message me for the phone number of the agency we use.

Anyway, moving on....

Have a wonderful Pesach everyone!

Just wanted to wish you all a wonderful and peaceful Yom Tov. Also, I'm sorry to let you know that I will have to change the settings on the blog, due to a massive influx of spam comments. You will no longer be able to comment anonymously but will need some kind of ID to comment. I'm sorry if that impacts anyone, but I have no choice; I get dozens of spam comments daily and have to put a stop to it. Thanks for understanding.

Have a fabulous Pesach everyone!