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Saturday, November 24, 2012

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.

Friday, November 23, 2012

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.

Thursday, November 22, 2012

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.

Wednesday, November 21, 2012

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.

Tuesday, November 20, 2012

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







Monday, November 19, 2012

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.


Sunday, November 18, 2012

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.

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