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.
navigating the stormy seas
"his shoes and socks"
ano ang autistic
autism dovi blog
autismparentinghelp.blogspot.com
dealing with autistic children
life with an autistic child
www.autism-parenting.com

autism autism symptoms checklist aitistic
	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.

EIOD. IFSP. EEC VS TABAC. PDD-NOS. ABA. CAN I HAVE ANOTHER HELPING OF ALPHABET SOUP PLEASE?

Enough with the philosophical musings. Time to pick up the thread of the narrative. I left you all hanging, waiting for the meeting with the E.I. Officer.

Once Naomi decided that Dovi was a good fit for the ABA program, the next question became: How soon would they be able to start, once I got my IFSP (individualized Family Service Plan). It turned out to be way more complicated than I had expected.

Because it was so late in the school year, Naomi was extremely occupied with end-of-the-year paperwork and meetings and setting up the kids for the summer. She didnt have any therapists available for me until the start of summer sessions, which was July 1st. When she heard we were going up to the Catskills for the summer, she was dismayed. We would be away from June 16 - August 15; summer sessions were from July 2 until August 10. This meant that Dovi would only begin his ABA program in mid-September. This was way too long to wait!

She couldn't understand why I was contemplating going away for the summer when so much time was at stake. But I had already given a deposit on our bungalow, and I wasn't going to turn everyone's lives upside down more than it already was. This wasn't fair to Chaim, to my husband, to myself, and even to Dovi. Every year I looked forward all year to spending the summer upstate, away from the hot, concrete city. The kids thrived in nature, played with sand, and spent time in the swimming pool. Staying in the city was too depressing to consider. But here I was being made to feel guilty by the very people who were supposed to help me!

AUTISM IS NOT AS 'FASCINATING' AS YOU MIGHT THINK

Some people have a natural affinity towards special needs individuals. They seem to gravitate towards them, and spend many of their waking hours doing chesed (good deeds) for special needs families, interacting with the disabled naturally, and are well-known within the special needs circles. Over the past year or two I've gotten to know several such families and I am constantly overawed by the sacrifices they make and the unconditional devotion and acceptance they portray.

I was never that type. I was not a starer or a curious questioner of disabled individuals; I treated them with respect and interest. I never felt uncomfortable around people with special needs, but I wasn't particularly involved with them.

Growing up, I knew of two types of congenital disabilities: Cerebral Palsy and Down Syndrome. Of course, there was mental retardation too, but when I was a kid, 'retarded' was a term often used as a slang word for 'crazy', 'unbelievable', 'ridiculous', kind of similar to the slang word 'sick' that is used today. "Retardo" was a derogatory name that kids would called each other. Autism wasn't on my radar.

BOOKS NOT TO READ ON AUTISM; (Alternate Title: IS ANYONE OUT THERE???)

There we go, with dual titles. I don't really like it. But this will be my very first post testing my Amazon Affiliate program, and hey, I do want someone googling "Books on autism" to maybe find me on page 20 of their search results. Ha.

So where were we? Oh yeah. After my initial interview with Naomi Whyne, I came home elated, excited, and raring to go. She had warned me that ABA was brutal at the beginning and there is a lot of crying and resistance from the child, but they have seen so many incredible success stories with children as locked-in-their-world as Dovi, and she felt he would do well in the program. All we had to do was wait for the meeting with Early Intervention.

Madame Service Coordinator, too, was impressed with what she had seen and thought it would be a good fit for Dovi. Before I made a decision, though, she had a book she wanted me to read. The title of the book was The Boy Who Loved Windows. Eager to get some clarity to shed light on what was happening to Dovi, I bought a copy on Amazon.

MY CHILD WAS DIAGNOSED WITH AUTISM. WHAT DO I DO NEXT???

Note, dear reader, that the title of this post is purely for the benefit of the google-searcher. My real title would more likely be, "THE BOTTOM HAS DROPPED OUT FROM UNDER MY FEET AND THE WORLD AS I KNOW IT HAS ENDED AND MY LIFE IS OVER AND WHAT DO I DO NOW????" But of course, no one will put that into Google Search.

Hey, you never know.

So back to that terrible, horrible, awful, unspeakable, horrific, you get the point, Sunday morning in late April when Some Lady Ph.D. told me to my face, "Your child has PDD-NOS. I recommend hours of ABA therapy," and breezed out of my life, leaving me alone to nurse my wounds, glare at little hapless Dovi with daggers of red hot resentment for ruining my life, and the first four stages of mourning to get past.

What did I do next?