Help Raise Awareness of Neurofibromatosis!

NF1 can cause a multitude of physical anomalies and maladies. This genetic disorder also causes behavior and developmental problems that mimic autism and adhd. While Ella charms adults, many kids have a hard time "getting" her and she is just beginning to understand this. Watch her sing her heart out and share the video to let her know she is loved for exactly who she is! Visit www.facebook.com/HopeforElla to stay up to date on all that HopeforElla is doing to make the world a better place.

WORDS

Autism. Mainstream. Inclusive. Non-inclusive. Integrated. High-functioning. Verbal. Non-verbal. ABA. RDI. IEP.

Words, all just words, and lately I find people increasingly focusing on the words of diagnoses and I'm frustrated. These words put so many ASD kids in a box that isn't easy to escape, through no fault of their own and the best of intentions of the community at large. Awareness is crucial but unfortunately with such large numbers of kids being diagnosed, with much of the awareness comes stereotyping and generalizing. There is no clear standard as to what works with autistic children and adults. People will argue about which therapy works best and colleges and universities teach future educators specific therapies as the be-all/end-all. STOP!

Don't box them in, get to know them. Pay attention to what she's saying but where her eyes are following. Notice his hand-flapping but see the fear in the furrow of his brows. See the jumping but embrace the joy in the smile on her face. The world sounds and feels so different to him and while he reacts differently then "typical" people, don't presume he isn't thinking like Socrates. Take the time to know them and patiently help the thoughts cross from mind to expression of words. 

Patience. Try it, you'll be pleasantly surprised with your world.

Meltdown Mayhem

Today was a day of the cosmos reminding me that youngest is autistic. Okay, honestly every day there are reminders; they are just part of every day and I guess we don't think much of them anymore, and those "things" are all parts of him and if I haven't said it lately, I wouldn't change a thing (hand flapping, bounce-hop-walking, pacing, turning circles, scripted and repetitive speech, habits, aversions, phobias, etc, etc, and etc).

I knew a meltdown was coming. Amid the joy and celebration of Z overcoming so many learning difficulties and becoming a Bar Mitzvah, small and translucent but steady storm clouds were building. He controlled himself so well and kept himself composed and polite through the ceremony and party, through the further celebrations in the days following, through his actual birthday, and through a weekend of changes and new things; yet the autism characteristics were increasing—especially the scripted speech. Z got a great new Lego set, one of the really big Star Wars sets, and set out to start building late Saturday night and continued as soon as possible on Sunday, completing it in record time by this morning (Monday). While we (and many of you lol) know that he builds the most amazing Lego creations straight from his mind, for this set he stayed with the directions the entire time; this was probably only the 4th or 5th set he has put together with the directions and by himself, and this was definitely the largest by far. As early afternoon approached, so did the meltdown. One part of the ship kept falling off and would not stay put. He kept bringing the Legos out into the living room then back into his room then back again out into dining room, then yelling—no, roaring at his sister when she reminded him “no Legos out here.” He went back into his room and was yelling, so I went in to see what was wrong and to remind him to change his shirt. He yelled and growled and screamed and I told him if he acted like that I could not help, to which he replied “YOU DON’T UNDERSTAND!!” Almost comical in that it was such a teenager thing to say, except it was far from a teenager reason. Also just a little comical was his comment “and, no, I AM NOT GOING TO TAKE A BREAK FROM IT,” as I guess he knew he needed to take a break from it and that he knew what I was going to suggest. I left and he headed back into the dining with his ship.

He was working so hard but that piece would not stay put. It was not making sense to him because if he followed the directions it should stay! Soon he was crying, and while he initially let me comfort him, the frustration and meltdown took over. He “roared” louder, yelled at all of us (it does not help that he is the baby, so the girls were stifling giggles because they can’t take him seriously when he’s angry….) I reminded him he was certainly allowed to be angry but reminded him at this level he needed to be in his room and on his bed so he could pound/hit/kick his pillows or mattress, and to leave the ship where it was. He grabbed it and ran to his room and attempted to lock his door—mom was quicker and I had my hand on the doorknob, insisting he give me the ship, and that if he didn’t give it to me other things would need to be taken away. Remaining calm was the only option. He finally gave in, gave me the ship, and stayed in his room until the timer rang. Later he completed the ship and all was again well in his world. These are the only times I will admit to feeling some sadness. When his disabilities crash head first into and through his abilities, I’m saddened for those moments of struggles he has faced and will face. 

For my youngest on his Bar Mitzvah

(These are the words I spoke to and for Z at his Bar Mitzvah)

“The world is so full of a number of things, I'm sure we should all be as happy as kings!” Robert Louis Stevenson

Z, while I know you have gotten tired of that particular poem for lots of reasons, I had to start with it because I started my speech to Mallory with something that annoyed her, too.

Robert Louis Stevenson is Z’s favorite poet. While “The Swing” is Z’s favorite poem, the one I read here is, to me, the epitome of just who Z is: a child who thinks everyone should just be happy, and if they aren't then he will find some way, somehow to remedy that situation. Z will take any difficult situation and find a positive no matter how bleak it might seem to anyone else. 

Z arrived into our world on October 9th, 2000 on the solemn holiday of Yom Kippur. He was quiet and solemn as if right from the beginning he felt a deep affinity for Judaism, which has grown into a love and appreciation that many don’t feel until well into adulthood—if ever. I remember at our very first High Holidays at our synagogue, we had been talking with Cantor L, and she put her arm around Z and said to me, “this one is special, isn't he—he is an old soul in this little body.” When he started preparing with Rabbi for his Bar Mitzvah, he was overwhelmed with such deep awe because he understood how important becoming a Jewish adult is AND was overwhelmed with joy at becoming an *official* member of the congregation. While he is a typical kid about not wanting to go to services many, MANY times, once there Zachary always finds deep meaning, whether through a prayer or feeling accomplished from helping in the kitchen. As many of you know Z loves helping out around the temple, and one of the greatest pieces of news he got recently was being told by the family service leader that he wants Z helping him at next year’s High Holiday family services.

On to Legos. Need I say more?? 

Z was building “contraptions” when he was barely a toddler! Not quite 2 years old, he wound, twisted, and threaded a bunch of yarn and string around and through his crib, the rocking chair, and his closet door. When the rocking chair moved, the closet door opened! That was only the beginning…I can’t  count how many times all of us stumbled or tripped over one of his webs. He quickly incorporated household objects—like the time he used yarn, the treadmill, the coffee table, a paperclip and his Elmo slipper to make a roller coaster road for his little Ernie stuffed animal! 

Speaking of stuffed animals, have you met Goggy? Need I say more?

As the baby of 4 he certainly gets lots of attention—but of course, he also sometimes flew under the radar and learned just how to use that to his advantage. Schoolwork can be frustrating for Zachary; information doesn't always process as he intends it to, or as others need it to be processed. The most amazing thing is, though, that for those patient enough to stop and wait—the thoughts he expresses are usually mind bogglingly correct and stop us in our tracks trying to figure out how the heck he figured it out! Many times his words melt our hearts and many others’ hearts. He has a way of being charming but with such sincerity you can’t help but love him. I am his rock, yet he is a rock for so many. Joy and laughter and love emanate as physical senses from his soul. 

Thank you to our synagogue family. You have truly become part of our family; all of us feel a sense of home when we walk through the doors of this wonderful synagogue. This was the perfect congregation of which to be a part when life through us some curves, and it is absolutely the best place to be to celebrate this wonderful milestone.