Wednesday, July 27, 2011

Pretend You Can't Pretend

Pretend you can't pretend. What would that be like?

Today, we met plenty of everyday Spectrum challenges as we engaged in all sorts of attempts to prevent them. I took the children to see the house we are in the process of buying and we drove through the city that will become their new home town. Going to the house is another story altogether of problems with expectations, predictions and transitions. What I'm mulling over most tonight though was not how C.S. ran away and hid right as we introduced him to the homeowner, or how he flapped through the formal rooms obviously excited, or how he stomped his feet and wailed in the basement crying to go to his real home obviously confused and disappointed ... what stood out sharpest today was the ride back home as I listened to my children "pretending" in the back seat of the car.

We had stopped for an early dinner a bit of a break before the hour drive back to my father's house where we've been staying. My step mother drove, my father sat in the passenger seat and I was in the back with the children. We ate at Cracker Barrel. While there DeDe spent some birthday money to purchase a Webkinz and Nana got a smaller one for C.S. so he wouldn't be disappointed.

These two Webkinz kept them thankfully engaged and distracted the whole way home. They named and assigned genders to their toys. They imagined social situations for them. And then, both my children, instead of developing voices for these characters or simply engaging with one another, they instead told, they commanded each other what to pretend. It went something like this:

DeDe: Pretend Nala just got a huge trophy and is really excited.

C.S.: And pretend Leo got one too and it's gold.

DeDe: Pretend they are on a platform and they are showing it to a big crowd. And pretend yours gives the trophy to Nala.

C.S. Pretend they're going to race again in a big finale. And pretend Leo wins!

Etc., etc, etc. The command "Pretend..." preceded every sentence for half an hour!

Then I suggested they try a new way to pretend — that instead of commanding each other what to imagine, that they take this scenario and simply say what they think their Webkinz would say and how they would say it.

For example, Nala could say: "Look at this trophy! It's huge! I've never gotten one so big and beautiful. I'm so excited about today's win."

And Leo could respond by saying, "And I got one too for my race. I think this could be real gold. Do you think your's is gold too?"

They tried it out. I kept having to remind them not to say "pretend..." but to just start speaking in character. It took a bit, but they were getting the hang of it. For another 15-20 minutes they played under my direction of less direction. It was an extremely interesting lesson for all of us. Obviously these are challenges BOTH of them, and I, are facing.

Silver Lining: Pretending to pretend is not as easy as one might think. But with extended family there to take the helm, Mom can take the back seat and we can learn how to pretend. Almost anything can be taught, really.

Thursday, July 21, 2011

A Birthday and Symbiosis

We're celebrating DeDe's birthday today. Had a little party for her. Couldn't have chosen a better group of girls, younger brothers and amazing mothers to do it with either.

Other than a traditional party and dinner, my husband and I observe a somewhat intimate ritual in celebration of my daughter's birth — we tick through two days recalling what we were doing at that moment so many years ago when our first born arrived through me into this world. By nighttime, we'll mark some indistinct hour that DeDe was brought back to me. This year, I confessed to my daughter that after she was born, after I fed her and then the hospital me, I was so exhausted after 18 hours of hard, pitocin induced labor and 24 hours without sleep, that I sent her to the nursery instead of having her room in with me. I then described how I later woke at some unmemorable hour to the sound of a piercing wail resounding through the halls of the hospital that grew louder until a visibly shaken nurse entered my room with my crying infant daughter in her arms. But as she stepped into the room, suddenly my DeDe was perfectly content. The nurse apologized profusely. "She was crying, we couldn't get her to stop, honestly. She's been crying non-stop until now. And she was so loud. We wouldn't wake you but the other babies couldn't sleep." But DeDe just gazed at me, a portrait of innocence and perfectly at peace. Startled by the sudden change, the nurse commented before she left, "Well, she's got strong lungs and this little firecracker knows what she wants."

I kept her close the rest of the night and every day since.

Recalling this so soon after recent meltdowns, not only the children's but a surprising one of my own, I've been thinking about the strong bond I share with my family. It is pretty intense. I've always remarked that my children catch my moods — they really do, always have. But now I'm beginning to wander if I don't catch theirs, too. I've only now realized how ours is a busy two-way street.

We visited Stone Barns Agricultural Center this past weekend, too. (I had hoped to write about our visit, but ADD and PDD always have surprises and other lessons in store for me.) Part of our exciting tour of the farm was a visit by the bee hives. As our guide was explaining bee communities, she counseled us to think of them not as a group of individuals but of the hive as a single organism. In many ways, so too are me and my children.

Silver Lining: My children don't go it alone. And, I wouldn't want them to.

Tuesday, July 19, 2011

It Hit

"I'm melting!"

C.S. had a huge meltdown the other night, the type of which we haven't seen in years. But he's not the only one. I had mine too, this morning. Who wouldn't. After the CT closing was delayed for the second time in a week, after tending to a sick son and a trip to the dentist for my cracked tooth, after we passed on the house we had hoped to purchase after inspections revealed more problems than we expected (and we expected a lot)...after all that...I added one thing too many. I know what put me over the edge, but it was something I was still determined to do because of its long term benefits. Of course that simply meant that my reaction was delayed until my determination was not so strong nor my defenses fortified. And so ... Mama had a melt down in the car in the middle of a traffic jam on the way to camp.

Silver Lining: Hey, I was prepared for it. I knew it was coming. I took a cue from C.S.'s strategies. Count something. Count the cars. Count stripes. Even if counting dashes in the center line seems silly, count down to calm. The means to a better end. And then turn around, literally, everything needs to head in a new direction. We retreated. How I wish I had ruby slippers to transform me "home" and out of the vortex. But if without slippers, I can drive there too. And so we didn't go to camp this morning, but we did what we all could do.

Tuesday, July 12, 2011

Short vs Long Test results

Change that — the rash IS strep. The quickie test was negative, but the overnight test came back positive. And unfortunately overnight became over-the-weekend. His daily intake of pills now includes penicillian.

We're in chaos here — packing has evolved into stacking and stacking into official moving. Due to a steep and narrow driveway, we can only receive one POD at a time and so, that means we'll have to load one ourselves. The movers will take the other. It is HARD work especially with kids underfoot. Thankfully, my mother-in-law came to help out, HOW we need family at times like these. I am so grateful that she came to help out — and being closer to family is one of our major reasons for moving.

Friends are helping out too — we have dinner invitations for 2 nights this week. And to help our transition go more smoothly, our neighbors offered their whole house to us. This will help tremendously with the upcoming transition. At least I think it is a good plan: rather than lose the house, their summer and their Dad all in one day, I will stay in this state after the PODs pull out. I'll spend a week focusing on the kids and summer fun (something we haven't been doing this week at ALL). We'll celebrate DeDe's birthday with her friends. They'll go to Apple Camp (a great freebie I'm hoping will be ideal for both kids but especially my PDD-boy). We'll swim for a day at the beach. And then, we'll drive to Grandaddy and Nana's in NC.

My husband will have to stay behind to work at the soon-to-be former job through the end of the month. And then, we'll be together again by mid-August.

Silver Lining: I've tried hard to manage this move with autism in mind. We've hit a few snags; sickness, rescheduling — but so far, it seems best laid plans are holding the children up pretty well. That's the quick test though isn't it. We'll see how it turn out in the long term — but I have every confidence that being closer to family and back in an area I consider my home turf, this move should turn out to be hugely positive lifestyle adjustment.

Thursday, July 7, 2011

Pack Rash

Yesterday, C.S. konked out cold at 11:30 a.m. for what became a 3+ hour nap. I must have checked on him twenty times and then, kept on packing, wrapping and packing. The quiet, the uninterrupted productivity, the strange boredom of three quiet hours with no running script babbling in the background, no child pacing around the house, through the doors that constantly need closing, was unnerving — something was definitely wrong.

At bath time, I discovered that a rash had blossomed all over his torso, upper arms and upper legs. He hadn't eaten anything out of the ordinary. He wasn't itchy. There was no fever. With a rash so wide spread over his entire body, it seemed the best solution would be to give him Benedryl. I had given him cold medicine once before, as an infant. Then, he did not fall peacefully asleep, but became agitated like I had never seen. Even though I rely heavily upon Benedryl myself, I've avoided almost all medications like this for him ever since.

The nurse at our practice is wonderful. She was very reassuring. She cautioned that it could be strep, but that it might be a virus and recommended that we see the doctor first thing in the morning. Fortunately this morning's test proved negative for strep. If it's anything, I'd say the cause is most certainly stress.

Silver Lining: It wasn't serious, he got three hour nap and I got a great deal of packing done. And today, even though I lost valuable time going to the doctor's office, a friend came by, whisked my kids away to her house, left them with her daughter as baby sitter and returned to pack 5 boxes of fragiles for me while I got some work done for a client. Wow. A friend who recognizes and responds to your need is a friend indeed!

Tuesday, July 5, 2011

Hairy Eyeball

Made a loooong list of errands to do with the kids today and in my best attempt to help them through this moving tsunami that will eventually carry us to North Carolina, I drew pictures and big check boxes beside each action item and let them tick off To Dos to Dones as we pushed along. After picking up a carload of packing materials and boxes (and waiting patiently in the understaffed U-Haul store) we ended up having to drive a half hour farther than originally planned to drop something off at my husband's office that he had forgotten. Being that far down I-95, I squeezed in another detour for work. Realizing I was now pushing it on a hot day, I then treated the kids to lunch at a nice café where we met not only a friend but also the family that camped beside us recently on our vacation. It was exciting — in other words, despite friends and mango sorbet, we were still precariously close to sensory overload and it was showing.

And then I saw her. Sitting in a corner bench, a weathered woman was intently focusing beady eyes on me, trying her scowling best to pierce my attention and deliver her sharpest look of displeasure and judgement. I ignored her of course. Dissatisfied but hardly deterred, she delivered a sugary compliment to a compliant little golden haired girl sitting beside her telling this child how well behaved she was as she flashed dramatically contrasting glares — as if I might have failed to notice the difference in the way she regarded this child from the way she had mine.

I was so seriously tempted to address Hairy Eyeball right then and there. I might walk up and say, "Hey, Hairy Eyeball, yes, I see you. And I just wanted to say that you really should do something about that wrinkled skin of yours. It is nearly sagging off your face. Don't you know that young faces are so much more popular and pleasant to look at, I don't know why you let yourself grow old — and if you think that judgement is unfair, then maybe you might reconsider scowling about my son, because that's what high-functioning autism looks like." But I didn't.

Silver Lining: My friends were kind, understanding and welcoming. One even offered to take the children for me. And that's what matters. I have plenty of reasons to smile and not scowl, at anyone, even the old Hairy Eyeball. And honestly, it is the friends standing between me and her that truly do make all the difference.

Monday, July 4, 2011

Pursuit of Happiness

Happy Birthday America! Independence is on my brain. As well as the need to write a few thank-yous to friends who brought hostess gifts or going away presents to our farewell party yesterday. I've written most of those, quickly, as emails or on Facebook walls (how my mother would cringe) ... but there are a few I've yet to write and thats how these two thoughts, independence/dependence and gratitude, come together.

Today, I get to write a very different sort of post about my son's experience at school. It is more like those I read so long ago at MOM-NOS — about how a wonderful and caring team of specialists came together, if not completely understanding my son's needs, dedicated to discover how best to meet them so that he might attend school while also enjoying life, liberty and the pursuit of happiness.

On the last day of school, I watched DeDe graduate and then, Ms. Glee, (my son's go-to when he needs "happy talk" to dispel his anxiety and frustrations) had gathered together a booklet of kind farewell messages from the entire team which she then presented to him and to me along with framed photos from a recent field day and more. It was an adorable keepsake. But truly what she gave me was an even greater gift, the feeling that they sincerely cared about him, that they could see through his struggles and appreciate this charming little guy and maybe miss him. I felt that, at least for the span of a school year, we had been in it together, helping C.S. navigate this world, teaching him to comprehend or at least translate social situations, manage his emotions, access his remarkable strengths and generally speaking, pursue happiness. I will not forget that we depended heavily upon these women to gain the necessary skills to enjoy life, independently. Thank you.

Red, White and Blue lining: I hope that you too are enjoying life, liberty and the pursuit of happiness!

Saturday, July 2, 2011


We're moving. And although my husband and I have spent months slowly and patiently preparing, explaining and generally selling the children on the whole idea — and we have succeeded because they are looking forward to the "adventure" — no one could escape the rising tide. With a closing date just 2 weeks away, we are all feeling very much underwater and at risk of drowning beneath everything that needs to happen.

But, while I've been expecting C.S. to go under first, DeDe suffers from anxiety, too. And last night, it was DeDe who was seriously floundering under all the pressure. And so I had renewed incentive to make a calendar, a visual organizer of sorts for the move, a suggestion I found at this most helpful link

DeDe was very excited about it. She helped me draw some of the pictures and she colored them all in. This simple visual organizer helped her make just a little more sense of all that was going on and most certainly turned her mood around. C.S. seemed to like it for about two seconds, but the game he was playing on his iPad was much more interesting at the moment.

Silver Lining: There are so many resources available on the internet to help us parents these days! It will be hard, but we won't drown — other parents have thrown out safety rings all along the way.

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