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.
Sometimes my sixth sense is sharper than other times. I figure out things and get it done and voila, it works. For a short time, maybe. Or for longer.
Two weeks ago I started getting very nervous about Dovi's fixation with the dining room table and chairs. Up to the table he'd jump, swing the chandelier, and down on the chair he'd jump. Jump, jump. He couldn't get enough.
And suddenly, something clicked. When I went to pick him up from school recently for an appointment, he was so excited to see me, he jumped onto the small 36" trampoline I had donated to TABAC when he had started (courtesy of a neighbor who didnt need it anymore), took 2 quick, excited jumps, and ran back into his room.
I realized that Dovi simply needs to burn off his energy, excitement, and need to jump. The same neighbor now has another identical trampoline sitting on her porch which she is not using, so I borrowed it for a few days.
I was absolutely astounded; Dovi stopped jumping onto the dining room table. He made a beeline for the dining room and the trampoline, gave 2 jumps, and was happy to move on to the next thing. He also started using the trampoline as a little play area and a place to happily spread/smear playdough. That's when I realized I had to get my own trampoline again - and not the big, 55" affair with the net that he never wanted to go on. He needs a small, compact one in the corner of the dining room that he can jump on and off at random times.
So off I went to a local toystore where I had seen the Pure Fun trampoline on display. I bought the 36" round one; it took a week or so for it to get assembled. At first I tried doing it myself but the exertion was way too much for me. I finally returned it to the store and they set it up for me. It's an absolute HIT. Since it's put together with bungee cords instead of springs, there is more 'give' in the center, and Dovi can jump higher. At first I didnt put on the handle, and then I realized that it's necessary - and it makes the jumping experience all the more fun.
While I bought the round one, the square one might might be a better option for smaller houses/spaces than the round one (which fits nicely into my dining room). Here are some links :
Dovi's newest form of entertainment is spilling a packet of shredded cheese on the trampoline, jumping up and down on it so it flies through the air, then sitting down and eating up the cheese. It makes me laugh every time - and at least he's getting some protein into him.
We just finished the 2 day YomTov of Shvuos, followed pretty much immediately by Shabbos. With Dovi home so much (and I did have plenty of help lined up), I panicked worriedly, wondering how I would occupy him for so many hours (plus there was no school the day before Shvuos) when I cannot put on a DVD, fix any of his toys when a battery falls out, or blow bubbles. I find Shabbos and Yom Tov very difficult with Dovi; while he loves playing with toys, his attention span is short and his energy level is high. After an hour or two of chasing him around, cleaning up his messes, giving in to his endless requests, and taking out toy after toy in the hope that it will keep him occupied for just a few minutes, I am exhausted. So before Shvuos I went out and splurged on lots and lots of different new toys to keep him occupied. Some were hits and some were misses, and his SSI money for this month has really dwindled :-D (but thankfully I get toy reimbursement from his Medicaid Services Coordinator). Here are some of the most recent purchases and its uses.
As mentioned in earlier posts, Dovi has insatiable tactile and proprioceptive needs. I have learned recently from a counselor at one of his weekend programs how well he responds to deep pressure and how much it calms him. So I have resumed the simple process of placing him on the bed and giving him massages and pressure using a pillow or just my hands. He responds very well to it. Lately Dovi has started coming over to his family, caregivers and even random strangers like the driver of his morning van and the visiting nurse for hugs and squeezes. his disarming, charming smile (with many missing teeth) make you melt and give him the hug.
With his hands, though, Dovi is always squeezing and smearing. I keep replenishing his supply of playdoh; but often it's not so practical to give him playdoh, since he 1) licks it or 2) smears it into the walls and glass breakfront. Noticing that he enjoys taking uninflated and semi inflated balloons and rolling it between his hands in lieu of playdoh, I bought him the Straws and Connectors toy. It's a hit! He rolls a bunch of straws together between his hands, and if he bites on it, it's just something to gnaw on and it wont break. I keep the connectors out of his reach, as theyre a choking hazard, and that turned out to be a great toy for Chaim; we can build huge things out of the straws and connectors, including a little hideaway playhouse for him.
Here's a very simple, cheap solution I found for Dovi's need to shred paper and other things: Bath Poufs! I buy them cheaply at my local drugstore or housewares store and he really goes to town with them. THere's lots of sweepup and cleanup to do afterwards, but it's way better than crying over a ripped important official document that I have to piece together afterwards...
Recently, Dovi has started enjoying big picture books, as he has started to recognize pictures and match them to objects, thanks to the hard work of his TABAC therapists. I am having trouble finding good, large board books with simple, uncomplicated, uncluttered pictures. Can any of you recommend anything?
For now, I bought him the Melissa & Doug sound puzzles, which he really enjoys playing with.
One of the challenges that spring and summer brings with it when it comes to Dovi, is his insatiable appetite for anything frozen. He ransacks the freezer all day, chain-eating ices. If he gets hold of ices in the morning, he goes to school pretty hyper and it makes life difficult. It's hard for me to say no to him; I say no for 20 minutes and finally give in. I've tried making my own pops from water and apple juice but it gets drippy and then the little sticks disappear. I found this nifty thing in my local housewares store and am very excited to try them out this Shabbos. They look similar to the 'breakable' ices that leave less of a mess when theyre left somewhere unnoticed. I filled it up with water and a little bit of Vitamin Zero for color and flavor. I hope it works out.
Here's another semi-dovi-related purchase I made. Dovi is Mr. MessMaker and his brother Chaim isn't much better. Often I find myself bending over a million times a day to pick up things they threw down or left strewn over the floor. My back is starting to protest. After asking my facebook crew what to do, someone sent me this link and my life hasnt been the same since! This gadget is AWESOME!! I almost havent had to bend over since then, or climb onto chairs to retrieve things from high shelf. a mechaya!!!
I'm going to leave you for now with all of the above delicious links to savor and ponder. If you end up actually buying or using anything from this post, please let me know; and if you have any similar ideas or suggestions please do speak up!