Tuesday, February 24, 2009

Sleep Deprivation in 3D

Once again, I am back on my 'sleepbox', ranting about that little thing that most take for granted and that many of us caregivers to those on the spectrum long to achieve...that 8 or 7, heck sometimes 6 hours is a blessing. Three words: Sleep Is Essential. It's even more important than all those other life sustaining activities. Lack of exercise kills you slowly; a bad diet is going to cause long term issues. OK, maybe if you stopped drinking, you'd die faster, but sleep is critical for for for, what's that word again...oh yea, THINKING. We tag teamed Livie this weekend, we alternated the early shift (4:30-7:45) then when Grace got up, the other would sleep. Fine and dandy if you don't need to get anything done. Monday morning came off without a hitch, she got up at a reasonable time. This morning though, I'm up with the fisherman at 4:15. No tears, no screaming...just a little girl looking to get up before the sun did.

The most frustrating part of all this is that we have not found a reason why. Go back to the days when your child was an infant. Imagine that feeling when your baby is getting up at night, and you're not sure what's wrong. Diaper's dry, no fever, not hungry, maybe teeth. maybe something's brewing. Sometimes it's just that they get in the 'groove' of getting up in the middle of the night. But in our case it's now different. First, this 'baby' is 6 years old and capable of great feats of destruction; she doesn't just sit in a crib and rattle the bars. Next, the baby will eventually grow out of this, there is a finite timeline of 2 years old three tops. Yea, you get a thirsty or scared child in you bed once a month, maybe once a week, but we run into spurts of 3 and 4 and 5,6 days in a row. Last, we worry that there is indeed something going on physically with her that we are missing. She has a notorious high pain tolerance; we've missed abscesses, double ear infections, you name it. So, it all adds up: Fear, frustration, forced insomnia = fried brains.
Then you have the feline Grace, who has taken up permanent residence in our bed. We're waiting on a mattress so that we will revamp their room. We'll have our revenge at that point. One of US will wind up taking residence in HER bed with her until we can get her acclimated to sleeping alone again. Yea yea, in the meantime, we're breaking the cardinal rule: make them sleep in their own bed. But they will bounce off each other if they are in the same room. One will wake the other, and all four of us would get no sleep. Linda and I are honestly getting used to having a foot in our face, or having her trying to literally push us to a corner of the bed so she can stretch vertically on the bed.
So midnight madness, make that, pre-dawn derange-ness still reigns supreme in the house. I'll start feeling the longer day around 5pm, and I'll have another cup of coffee and shake it off. I just hope this isn't the start of a major waking-streak. If so, I may wind up making even less sense than I usually do; I may even need to borrow some of Salvador Dali's face props from the painting above!

Monday, February 23, 2009


We had a little break from the norm. I had a little time this weekend away from the standard therapies in Lon Gilsland and found myself in the afternoon, afforded with some time. Time that I could just flippantly decide what to do. Not that there wasn't 1001 things I could and should be doing, but this was a day that I could do something frivolous for a change. First, I decided to take Livie out, because she had not had a weekend off either. Then, I thought, Gracie could also use getting out of the house. But, I freely admit my limitations and I would not attempt an excursion out with the two of them alone. I decided to bring Alyson along to be a second set of hands. Then Jason decided that he wanted to be included (much to the protestations of Aly). Finally, just before leaving, Dillan decided to join us.
OK, all five was not what I had signed up for, but that's the five cards I had drawn. We headed out for parts known on Route 36, a little known place called the Twin Lights of Navesink, the historic lighthouse overlooking Sandy Hook. Aly was looking for someplace indoors (translation: a mall or some place with games and rides), I was looking for a controllable place where all would be sufficiently awestruck to not run away or fight. The lighthouse fit the bill, although, I'm not sure Linda was happy about us climbing the stairs into the tower. We did a 'club sandwich' of sorts on the stairs with the girls; the two boys going first, Gracie next, Aly behind her, then Liv, then I followed up the rear to catch any falling debris. As expected, Grace shot up the spiral staircase rivaling the boys with her speed; Livie was tentative but consistent going up. The view was spectacular, but with my combination of acrophobia and kids-sqeezing-through-the-bars-or-jumping-down-the-stairs-Ofobia, I could not relax.
We did the obligatory 5 minutes at the top, then the real fear began; getting back down. The last set of stairs up to the top are very narrow, not much wider than say a good sized ladder for getting out of a pool. Again, of course, Gracie AKA SuperGracie had no fear nor trepidation going down; all she needed was three children to buttress her in case her head got ahead of her legs. Livie, is another story. As I went down the stairs backwards first and helped her down, I was reminded of the old joke about why Ginger Rogers was a better dancer than Fred Astaire: answer, she did all his moves backwards and in high heels. I didn't count the stairs, was it 60? 80? 1869 (# of Empire state Building steps)? It just seemed like it. I had Gracie's coat in the hand I was guiding Livie with and I was waiting for her to trip over it. I also had three kids saying "Where's dad and Livie?" No pressure.

We got out with no scrapes or screams (save Gracies expected protestations when we were leaving). We could not find our standard camera but we did have Aly's low budget camera, so we may have some record of the fact that I DID fly solo with all five kids not only to the lighthouse, but also a walk on the beach afterwards. There were only some minor skirmishes, half of which were due to my nervousness, so the gang was good to me...and to each other. Linda, although I didn't ask her, probably was unnerved by the eerie silence in the house...

Monday, February 09, 2009

The Price of the Stim

BA- Before Autism if you would have asked me the meanings and concepts behind dozens of phrases, I would have not had a clue. Among them was the idea of stimming. I guess it's not such a foreign idea to many of us on the NT side. The idea that you need to repeat things and do things to calm yourself down, to 'center' yourself, it's not such an alien idea. From spinning something mindlessly on your finger, to needing a cup of coffee and 1/2 hour in front of a TV to wind up or down, it's a pretty universal idea across the entire realm of human existence. Even the ideas of destructive stims: addictions; bad behaviors; I guess you could liken many of the world’s ‘vices’ to a negative ‘stim’.

Which brings me to my girls. Gracie’s stim behaviors I can almost relate as an OCD-type of behavior. Wanting certain thing certain ways; repeating sections of videos over and over and then echoing them back nearly as much. Nothing kills conversation more than hearing a 4 year old giving you the Baby Einstein sales schpiel from the end of the tape with all the same words and inflections. The only time her stims become truly negative is when they need to be repeated to the exclusion of all else and tantrums ensue if they are not ‘honored’. In short, Grace’s ‘stims’, if you can call them that, are not normally negatively impacting her or our life.

Livie, on the other hand, has a number of stims that can easily get out of hand and prove to be harmful to person and/or property. Let’s start with the oral fixations. We have really battled, over the past 4 years, over what’s going into her mouth and trying to find non-dangerous (read non-toxic; non disgusting; hopefully non offensive) alternatives to her chewing ‘stims’. We’ve had wipes replaced by gum; toys replaced by chewie tubes; socks replaced by…by…what was it, wipes? Anyway, the oral need to chew and grind always seems to wane and wax; lately we’ve been in full blown, chew everything in sight, mode. We need to get her back on some minerals we’ve been lacking lately and we think pica has begun to rear its ugly head, even with Gracie.

Now finally we get to the reason for this post, Livie’s all time favorite stim: kicking. This one goes back all the way to the beginning of her regression, pre 2 year old, when she first started kicking in front of the television. We thought it was neat, because when she first started this stim (before we know what a stim was), she would get excited at the start of a Dora tape and lay on the ground and kick her heals to the beat of the song. We laughed for a few weeks until it also was being done in anticipation of, to request additional viewings and eventually as just a need in general.

This kicking stim has gradually morphed into an all purpose communication tool, relaxation technique, sensory seeker, attention seeker and even sometimes, affection seeker. Having Livie come sit next to you and stick her feet in your face is indeed an honor, as you are privileged enough that she sees foot that you massage hers! If she is not liking your position or her lack of being the center of attention, she will give a bang on hopefully an inanimate object. On occasion, a living breathing being will be the object to kick. Most often she is very precise with her blows and they will be as a touch on the shoulder. I look at her feet almost like another set of arms and hands as they are quite exacting and almost gentle (it’s like the trunk of an elephant if you can grasp that concept). Nevertheless, we have had some scary kick moments with both human and feline when Livie becomes less than focused on what her feet are doing.

Ah, yes, feet not in control. Let’s see what Livie has done over the last 2 years or so. She has taken out all three doors on our entertainment center. She has rendered the remote on our living room TV unusable (she must have hit the infrared receiver on the TV itself. She has taken the sliding doors of her bedroom closet off their hinges and exposed the nails on the plasterboard walls next to her bed. She has destroyed the blinds in her room. And last but not least, the pièce de résistance, last week she put a hole in the wall of our bedroom. Linda had only clocked her in the room a couple of minutes; she had pounded on that wall for hours over the past two years. She must have hit it just right.

Like it or not, we have now labeled the kicking stim public enemy #1. It's not that we are stopping it at all costs; we just have stopped 'ignoring' it. She can't go back to our room until we can figure out how to repair the damage. Re-wallpapering our bedroom was not on the agenda.

Monday, February 02, 2009

Flu Season

OK, I may not be very coherent today, because I am part of the 37.5% of the household stricken with the flu. It's been a fairly weird couple of weeks. Two or three weeks ago, we started with a cold in the house. I think I've mentioned before that the CDC uses our household fro advanced early warning and tracking of various minor epidemics. The boys were both down for a day or two, then Gracie was down (I think Livie was in there too intermingled, but I'd have to pull a FOIA to be sure). But last week, the big F.L.U. hit. We thought Aly had been a straggler with the previous cold, but when she didn't get back up properly on Thursday, and Liv began showing signs of the same lethargy on Friday, we knew we had a communicable disease in our midst. Not nearly as bad as the pandemic of '07 mind you, but still chock full of coughs and miserable children.

Lin and I kinda took it as a blessing in disguise. We cancelled Livie's weekend therapies and set out to clean house. We rarely get the chance to tag team the house on a weekend anymore and we relished the chance to do some hardcore cleaning. We got through our bedroom on Saturday; I packed up all my CD's and by Saturday night, I was whipped. But it turned into something more by the time I went to bed. By Sunday, I was in no position to clean (horizontal) and Linda was in no mood (sleep deprived due to a late night with Livie) to make any attempts either.

So, I got a sick day Monday, and I am anticipating (like waiting for black hooded man with the sickle) for Linda to come down with it and split the household down the middle and send the house into panicked survival mode. If there's one thing worse than a house full of sick kids, it's a house full of healthy kids and sick adults!

We had the two girls to the doctor today and she has seen this one and it's the 7 day variety. She knows first hand because her flu vaccinated household has been through it. Aly's got a pass from school until Wednesday. We hope the other three kids might have had a white blood cell boost with the previous cold. As for me, I don't think I have the stamina to be here all week; I need to go to WORK and get some rest!