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If you’ve read enough of my blogs, you know the distaste I have for the way the local boys’ school has dealt with our sons. We’ve lost a lot of respect for the faculty, administration and the non-existent board of education whose duty is supposed to be protecting the students and guaranteeing that the product allows for each student to shine as an individual.
I guess it says something that not one of our three eldest sons have elected to continue their education with them past middle school. We aren’t a match made in heaven, and there is no point pretending they are able to meet our needs and vice versa.
A few weeks back a really beautiful thing occurred to our tenth grade Asperger son involving the school he currently attends, which brought back some painful memories by way of contrast.
While our lives were by no means “normal”, until this child hit fourth grade we were a model family as far as anyone else was concerned. Our home operated on the “what happens here (in Vegas) stays here” motto and no one was the wiser for it.
The wheels fell off as they always do for us, with a dramatic explosion of events. When he began fourth grade a change was apparent: He refused to do his Hebrew homework with me and pretty much stopped doing it altogether. He never had the easiest time decoding a new language and we supposed that his frustration hit a high water mark and he decided to just give up.
I had begun a job the year before with a new company and had taken a 35% decrease in salary. I was working my tail off to pick up sales especially with the Bar Mitzvah of our eldest coming up quickly – I needed more money and in a hurry.
I wasn’t home often, he was having more meltdowns at home that were intense and longer lasting, and given his growing dislike for Hebrew studies, he began to wander away from the classroom for extended periods of time. He caused no damage, never left the campus and was often found compressed in a crack between the lockers and the wall. But this was enough to touch off an avalanche of meetings.
As a former high school principal, I know many of the tricks administrators use to gently tell parents their child isn’t wanted here. The ace in the hole is the amorphous: “safety” issue. It goes something like this -
Seated around the table are dour faced parents nervously wringing their hands listening to an equally dour faced principal (or possibly two administrators at once so they can play the Good Cop/Bad Cop game). The principal begins by talking about all that is going “right.”
“He’s a lovely boy with so much potential” Blah, blah, blah and on it goes.
The nicer the words, the higher the other shoe is lifting so it can drop with a more resounding “thud.”
“But we are concerned for his safety and ours. You see, the school has to be worried about our liability and we cannot have students wandering off unsupervised.”
Brace yourself for the overly dramatic punch line
“We would be devastated if something happened to him on our watch and we were not able to prevent it.”
Oh sure you would. C.Y.T(ush) – that is what this is about.
” So we think it would be better that you keep him home with you until such time that you can assure us that he will remain with his class and be where he needs to be….always.”
One! Two! Three! We’ve been pinned. We’re out. He’s out. Done. Game over. You can’t beat this argument. The school is playing in “invincible mode” and we can’t win.
What else could we do? We took him home and lined up a dozen doctors to poke him and stick him until we could get them an “answer” they would be happy with. And how exactly do you get a nine year old to promise he will follow orders?
Here is the real kicker. He was out of school for NINE WEEKS. During this time he did not receive a single phone call. Not from his teachers, not from classmates and only one from the principal who threw him out when I finally called and suggested it might be a nice gesture to do so. Of course, my son hung up on him after a minute and the fellow never stopped by or tried again because: “what do you want from me? I tried and he wasn’t interested.”
All these memories flooded back when I witnessed the following incident.
A month ago it was Chanukah and as part of the way each school celebrates the holiday, Judaic teachers host parties in their homes for their classes. Our son had no intentions of going, he’s far more content to sit at home and duke it out with Hobgoblins on Runsecape than to “risk” the unknowns of such an event. There might be food he won’t eat (horrors!) and games he doesn’t like to play (Terror!).
Suddenly there is a knock at the door and in pours his entire class looking for him. I soundlessly point in the direction of the computer room not quite sure what is going on. A moment later they emerge with him in tow, pull a coat on his back and drag him out the door while singing holiday songs.
Who would’ve thought there could be so much pleasure watching him get “thrown out?”
LJ
Some days I wonder if NLD really stands for “Not Learning?…Thanks Dad!”
When your children are handsome, clean cut, really smart, funny and creative, it makes the disconnect between what you think they should be able to do, and what they actually do, all the more stunning. It is not a pleasant thing to say, but when your child is tied to a wheelchair with CP, there really is no temptation to shout: “stop dropping your food on the floor!”
I look into my sons eyes as I repeat the instructions as I have done the day before and the day before and even before that, and I wonder:
Maybe today is the day you will connect yesterday’s “Get dressed, brush your teeth, put on your shoes, come to the table….no, put your baby sister down and take care of yourself first…” with what I am saying .
Maybe tonight when I call him to the table for supper, and he arrives thirty minutes late and flies into a funk because the food is all gone, maybe tonight is the night he will finally learn that he needs to come when called.
Maybe this time around when the book report is assigned, maybe this is the time he will do it on time and not get upset with us when I take away all his games and privileges twenty-four hours before it is due.
I look into those deep brown eyes of his and, like the Looking Glass, I want to fall right into them; to reach into his brain and tie dendrite to dendrite to ensure connections are being made. I so much want to just love him and laugh at the silliness of the whole scene. I want to validate his uniqueness and be accepting of his totality, including his absurd disconnectedness.
But now we are rushed and everyone is late because he is still arguing about some long ago point that the rest of us have moved past, and the tension is rising and the threats are flying and now there is yelling and Iwant to just say STOP! Remember, this boy doesn’t GET IT…but all understanding is lost in the craziness of nine lives converging on a single moment.
He stomps off in a huff of anger, his siblings are shouting at him and slamming doors, my nerves are frazzled and frayed and my stomach is knotted with guilt. It is almost as if his NLD condition is contagious; now nobody in the house is GETTING IT.
WILL EVERYONE PLEASE STOP THIS INSANITY!!! HELP!!
Whoa…. Hang on a minute…. Time to take a breath….Okay, I’m better.
The good thing about NLD is that, most often, he doesn’t remember these blow-ups. Red Dawn at Morning actually makes for Sailor’s Delight come the Night. Its so weird; almost like he’s got something in his throat that needs coughing up.
Whoops. I would love to continue this post, but I need to go remind him its time to eat (-sigh -).
It’s your turn to share: What is a technique you have found helpful for creating a routine that keeps everyone on task?
LJ
One of the defining characteristics of our Asperger son is his food anxiety. There is a lot to write about this topic, but for this post let me provide a fairly thorough listing of what he eats, and how it must be prepared. The challenges are obvious. Yehuda eats:
1. Candy – most any kind (not helpful)
2. Chocolate Chip Cookies and Muffins. Mom loads them up with weird sounding things like Lignins and Wheat Germ to add nutritional value. Muffins MUST be wrapped in paper towel (NOT paper napkins), and heated up in the microwave for 25 seconds.
3. Cholent – Meat, potatoes, beans and barley stew served on Shabbat. BUT will not eat meat, potatoes, beans or barley separate or in another dish. No steak, burgers, franks, chicken, etc.
4. Microwave Popcorn made by Ki Tov (Lite – only, NO butter flavored) to which he adds a handful of salt (unless we catch him first)
5. French Fries – McCain brand, REGULAR CUT ONLY, NOT Steak Cut or 5 Minute Fries (emphasis added by Yehuda)
6. Chocolate Balance Bars – However, he will only eat these in private.
And that’s it.
It’s not too hard to figure out why we almost never take family vacations. Let’s see…can’t eat in restaurants, need microwave and fridge, etc. That eliminates most of the affordable options like camping and Motel Six. Oh, and spending the night at a friends house or summer camp? Totally out of the picture.
Yesterday Yehuda was hankering for his beloved french fries. He waited patiently all day for me to come home and take him out to Shoppers to pick up a bag. For some bizarre reason, not a single supermarket stocks up on this one type of fry. Either that or there are plenty of other Asperger kids who hog them for themselves. So it came as little surprise that, once again, we would go home empty handed.
And then Yehuda did something out of character. He agreed to try a substitute brand. No explanation given, just a shrug and an “I suppose.”
Ten minutes later the excitement in the kitchen was building as Yehuda lovingly flattened out the piece of aluminum foil that holds his fries on their journey through the toaster oven (add that to the list of items we need to bring on vacation – where do we put the clothes and water noodles?). He did this with such care that I asked him if he is planning on making a tombstone rubbing, which got me a sly grin.
He opened the bag and I watched his shoulders sag and heard a plaintive groan.
“What’s wrong?” I asked
“They’re small!” He replied.
“Small?”
“Yes! Look Abba at the package! The picture makes them look big and tasty, but look at this!” His voice is trembling with emotion.
I look inside the bag and, sure enough, they are shoestring fries.
“Let’s sue the company for misrepresentation!” Yehuda shouts as he stomps out of the kitchen leaving me to twist-tie the bag and shove it back in the freezer.
“Yehuda, maybe this is a good time to work on being flexible? After all, they may taste fine.”
Yehuda launches into a soliloquy decrying all things new and explains how he can TELL they WONT taste good. He even offers that he can judge by how foods SMELL that they are going to be unpleasant (He might have a point there).
Here we go again.
Two pediatricians have told us that he is healthy and not to make a real stink about what he eats. Once we took Yehuda to a psychologist who was sure he could “knock some sense into him” - uh oh. That was a clue we were headed for disaster. Six months and $800 later Yehuda triumphantly bested the Dr. and smiled as we drove away from his office, never to return.
Asperger children are not the only ones with picky eating habits although in our case, there is some anxiety issue at work and not just a matter of preferences.
Its your turn to share: What solutions are there for us to help him broaden his taste buds? There are some who have suggested taking away all his foods and “starving him till he comes to his senses.” Kind of like a “Scared Straight” tactic. Is that immoral? Does that even work?
LJ
Great basketball teams are those who are able to score big points in transition. In the blink on an eye, players make dramatic shifts in positioning and momentum and try to throw the other team out of sync and cause errors in judgment. As the errors compound, frustration builds and yields more mistakes. Two tomahawk slam-dunks later, you can literally see the spirit go out of the defeated players as their egos are battered into submission.
Its not a perfect analogy, but in many ways this is a lot what mornings are like in our home. When you have children on the NLD spectrum as we do, the morning wake-up and get out of the house routine is anything but. From bedroom to classroom there are dozens of transitions that need to be mastered and executed flawlessly.
1. Get out of bed 2. Go to bathroom 3. Freshen up 4. Return to bedroom 5.Take off pajamas 6. Put pajamas back on bed 7. Select clothing to wear (and remember to change undergarments!) 8. Put on clothing 9. Leave bedroom 10. Come down to kitchen 11. Select breakfast food 12. Eat breakfast…..etc.
A non-NLD child is able to string these together and develop a set pattern. Our twelve-year old has not been able to get on track after more than five years of day in, day out scheduling. His morning often looks like this:
1. Get out of bed 2. Go downstairs and bother someone 3. Stomp back upstairs to use bathroom 4. Come back downstairs (still in pajamas…the clock is ticking!) 5. Complains that he doesn’t know what to eat for breakfast 6. Is led back upstairs and directed to take off pajamas and put on clothing 7. Comes downstairs in pajamas to play with favorite toy (tick – tock) 8. Is marched upstairs to change clothing 9. Comes downstairs and can’t remember where sneakers are 10. Carpool arrives and he hasn’t eaten breakfast yet 11. Goes to basement to play with toy (honk honk!) 12. Is hauled upstairs, book bag dumped on shoulder, muffin stuffed in hand and walked out of the door….WHEW.
And the best part is – we get to do this all over again tomorrow. Every day is Groundhog Day - so put your little booties on, cause its cold outside!
If we had one child, it would be challenging enough. Now try doing this with five others to dress, feed, sign homework, pack lunches and still get to work by 9 AM.
The worst part of handling these transitions is watching the frustration build in the child and everyone around them. Back to our basketball team for a moment: At least there are players on the bench who can sub in and put their fresh legs to use to try to turn this thing around. An NLD child drains EVERYONE in the house. It is nothing short of amazing to maintain calm and send each child on their way with a kiss and a smile.
There are probably hundreds of things we can do to make our mornings less stressful. One very helpful tool we’ve gotten good as is to maintain a calm and steady voice. Just like an animal smells when you are scared, the kids all pick up when mommy and daddy are tense and that can derail everyone from their routines.
Let me hear from you: What is your morning “routine” like? What do you find works well? How do you divide your attention between the children to keep the action moving with minimal delays?
Have a less stressful day!
LJ
