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.

Link to More PlayFoam

   

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.