My left name (and a rant about sleep)

He is so literal, concrete…literal. I was telling Z what his middle name is, and he asks, “What’s my left name?”
Sometimes I don’t know whether to laugh or crumble. It was funny to hear, but he was quite serious.
I run into this difference in perception frequently. When he’s being super cute and silly, I’ll make the mistake of saying, “My little monkey”.
He’ll become extremely disturbed and strange, weirded out, grab me and in a trembling, fearful voice say, “I’m not a monkey, I’m a boy.”

It’s seems like a little thing, but this inability to imagine things as other than they are is really problematic. Dress up is definitely out (except for tutus, but that another topic), Halloween is very tricky and although the lure of treats get us out of the house, I end up carrying my frightened child from door to door. Clowns, astronauts, aliens (even cute, friendly ones) are all terrifying. CGI cartoons are a problem too. I actually find them bizarre myself, but not terrifying like Z sees them. He’s very confused when watching Olivia or Calliou cartoons and they have fantasy segments in their stories.

He’s beginning to play with toys, but the function is always as it should be. A phone is a phone and a car a car. A banana is something you eat and if I try to pretend to use it as a phone he giggles nervously and then lunges to bat it out of my hand. I guess the part I have a hard time understanding is just how disturbing it is to him. I see it in his reaction, but somehow it always takes me by surprise. I feel like I should have a point to all this, but I’m just too tired tonight to do more than meander around the subject.

a rare nap on the couch

Speaking of sleep. A new OT I met with this week told me that 90% of the kids she sees who have sensory issues and eating problems, like Z does, also have serious trouble with sleep. Thank you for the validation! Why is it that doctors and behavioral therapists always want to make it a parenting problem. Oh, it’s because he’s still breast feeding, or it’s because he’s in our bed, or it’s because we haven’t done any sleep training. What a load of ignorant speculation. Anyone who has a child with disturbed sleep knows what I’m talking about. But the reality is, that sleep training is not an option, breast feeding and co-sleeping have nothing to do with the frequent waking or extended thrashing. Z wakes every hour or two all night long. Sometimes he’s agitated, sometimes he just flops around trying to get back to sleep, sometimes he’ll sit up for two hours talking. Night weaning changed nothing. Melatonin changed nothing, just made the nightmares more frequent and intense. Less light made it worse. Having him fall asleep in his own bed on his own, changed nothing. Earlier bedtime changed nothing. Later bedtime changed nothing. Homeopathic remedies changed things for one or two nights, but not more. There seems to be no pattern and no way of predicting how he’ll sleep. Most nights are bad, then we’ll have a freak night of only one or two wakings. Halleluyah! Except, I can’t sleep because I keep expecting him to wake shouting “Mommy!” any minute. So I resort to Benadryl, Advil, Melatonin, etc. in rotation so that I don’t get hooked on any of them.

OK, so why am I onto this topic right now? I mean, it’s been going on for 3 years and 4 months already. Well, next week we have an appointment with the CHOP Sleep Center. (Children’s Hospital of PA). Of course, they insisted that our first appointment must be with a behavior therapist. Why? Why does the OT know that 90% of children with Z’s issues have disturbed sleep, but the Sleep Center doesn’t? Or doesn’t acknowledge that. Why must we jump through this hoop? Do they really think that 90% of the parents of kids with these issues have parenting problems that create disturbed sleep? Are they nuts? I’m going to try to go in with an open mind, but I already have a hand out from the center on “Sleep Hygiene” and it’s the usual about bedtime routine, etc. What can I say. I have almost every sleep training book out there, from Weisbluth and Ferber (who by the way admit that for children with “persistent personalities”, these methods don’t work – don’t you love the term?) to the No Cry Sleep Solution, and every thing in between. None of it applies. The Nanny technique also will not work because for whatever neurological reason, my kid doesn’t have consolidated sleep and wakes with extreme anxiety every couple of hours all night, every night. I could go on and on about this. For example, the latest wrinkle — he wants to sleep sitting up. In fact he’s very adamant about it and the only way to get him to bed is to prop him up with pillows so that he’s close to sitting. Eventually he falls asleep and slips down, but when he wakes he then insists on having his head on my arm – or sit up again. Of course I’m not getting any sleep at that point.

OK, I have to stop now. It’s getting late and I need to catch my cat nap windows while I can.

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Figuring it out as I go… parenting a special needs child

Ceiling fans at Home Depot. Zimmi's version of going to Disney World.

I’m not a writer and I’m not an expert. I’m a mom of a three year old boy diagnosed with PDD-NOS. After much prompting from my sister, my friend and baby daddy, I’m going to try to record my travels with Zimmi. It’s a foggy road and I have more questions than answers.

I’ll begin with a recent anecdote. I took Zimmi to CA for ABM therapy (Anat Baniel Method). This therapy is worth it’s own post, but I just want to report a small moment during one of Zimmi’s
14 sessions.

Neil was giving Zimmi a lesson. In the room was a large poster of Einstein. Each day he was in that room, Zimmi would ask Neil about the poster.
On this particular day, the conversation went like this:

Zimmi: “Is that you?”
Neil: “No.”
Zimmi: “Is that your daddy?”
Neil: “No. Is that your daddy?”
Zimmi: “No.”
Neil: “Is that your grandpa?”
Zimmi: “No. Is that your grandpa?”
Neil: “No. Is that your mommy?”
Zimmi: “No.”
Zimmi: “Is that me?”

Well, that is the question isn’t it? On so many levels that is the big question. My heart gets caught in my throat as I write this. I have so much fear and so much hope for my son. He’s adorable, funny, smart, has “it” (the thing that makes almost everyone who meets him, like him), is happy, curious, did I say smart? Basically he’s an amazing child and at the same time, he’s so difficult to parent, his future is so uncertain.

Will he be a brilliant contributor to society or will he never be able to even live on his own? Am I providing what he needs to escape the murk and mire of ASD? I feel like I must become an expert at living with the unknown. We all do, but it’s in my face, my consciousness every day. I don’t have the luxury of basking in the illusion of ground. Instead I surf the swells and waves of an ever shifting, changing ocean of special needs parenting. Will he eat today? Will he sleep tonight? Will I? And most importantly, am I giving him what he needs? Can I be doing better? (Actually, I know the answer to that one – YES). So I welcome you to join me in my quest to do better, to figure out what my child needs in a world that does not have the answer…yet.