A Revisiting of Old Tricks

October 11, 2010

I’ve fallen off track, again, but I’m not entirely to blame. Turns out pregnancy is terribly hard work. However, I’m feeling motivated to vent for a bit so here I sit preparing to give you my unsolicited thoughts on Type 1 Diabetes and pregnancy (which is me) and the potential of Autism development in the child.  Hold onto your undies…

So there’s not much out there. In fact, there’s been one study. One study that has looked at the connection between auto-immune disorders in mothers and the development of autism in those children after birth. At best it shows a vague link–worthy, they say of follow up studies, yet it doesn’t look like it was worthy enough to actually prompt any. Not to date anyway.

However, I came across another type 1 diabetic mom’s blog while looking for information on the study who was also pondering the connection. A woman who already had a child with mild autism. Had wondered if it had been due to her own auto-immune disorder. And somewhere in her writing I came across words I felt she had written just for me. This is the part I want to share.

My own son is very, very social. Warm. Considerate. And, sure, we have always believed part of it to be a result of early intervention, but he has always been attached. Since birth. Before intervention. It was the part of him that just never fit under the autism umbrella, and it was the part that always left us skeptical about the diagnosis.

However, we lived with him. Obviously. Day in and day out we spent at his side. Just as there was doubt in the diagnosis, there was also no doubt whatsoever. Confusing, yes. So here we were with warmth and love and acknowledgment and stimming and repetitive behaviors and, well, quarks. So doubt and no doubt. Good days and bad. The good days so good that there is and was no sign of autism at all–as if it had been cast out like the devil, and bad days that just left us feeling off. Like, oh yeah. There it is.

These last couple of days have not been bad at all. So I hope you don’t think that’s where I’m headed, but they haven’t exactly been autism-free. There’s kind of been this touch of it about him. Nothing overwhelming. Nothing a stranger would give more than a passing glance, but me, his mother, recognizes it from days of old. A hint of a visual stim–an old trick of his where he looks out the corner of his eye and shakes his head back and forth. But then he catches me watching him and breaks into a shy smile. And there’s this other thing he does with his tongue. Don’t know how to describe it or that I care to, but it’s the same kind of obsessive behavior. And just a touch of shadow-chasing, which he used to do for hours on end. Nothing that would demand attention from anyone who doesn’t know him, but from us, well we know these things. We lived with them.

It’s a kind of revisiting–something we just haven’t seen for a very long time. And we saw yesterday how it eats into his ability to pay attention. How he wants to be there in the present, but these things, these tricks…or I suppose, stims…kind of carry him away. And temporarily he gets lost in himself.

We’re not running off to start some new therapy. It’s not even like that. But it’s curious. Very. And then I think about that blog–and how that woman talks about how it’s a misconception that children with ASD or autism are not social. How they are very social, very attached to their caretakers. As was my son. And how their stims or repetitive behaviors are not a way to escape the social world but are ways by which they moderate it. Control it. Protect themselves. And I, again, feel like she’s speaking to me because I don’t feel like my kid is doing this thing in response to a social issue–but I still can’t ignore that he’s doing it.

So I’ve been thinking. And I am now thinking about school as a possible source of it. The sudden demands of an all-day curriculum–a day that only allows for one 15 minute recess and one 30 minute lunch break. About how my son is moderating…controlling his environment so that this structure doesn’t destroy him. Learning how to slip back into these stims so that he can disengage…and get lost in himself, if only temporarily.

Well he received a reward for “purrr-fect” behavior. And I imagine him over there rolling his tongue and flicking his eyes. Not bothering a soul. I KNOW it’s perfect behavior. It will not be the first time his stimming has been hailed by the critics. “He’s the best behaved child in here! Never bothers anybody!”

But it’s on my mind now. I’m on it. And I’ll try to talk about it with him, of course, which really might help, but I’ll also weasel my way into that classroom. As a volunteer. And spy. As a detective and problem-solver and know-it-all. They’re gonna love me.

I just sat down and started thinking about what I could write about this afternoon, scanning over a list of topics I’ve compiled over the last few months, and suddenly felt more removed from my child’s early days than I’ve ever felt before. As if these days were so long ago they’ve become nothing more than a compilation of words and pictures.

I don’t know if it’s the change of seasons with the late afternoon breeze shuffling the leaves about or if things, again, have been going well, but all of a sudden I only remember parenting as easy, child-raising as intuitive and smooth, and my own child as flawless. As an angel. As almost having raised himself. (He is a really very sweet boy, but really…)

I am just past 11 weeks pregnant, you see, so I do not think it’s coincidence all memories are so one-sided…As my sister once said, we are hard-wired to forget. We have to be. To be able to move on through life without fear. For if we remembered everything difficult, everything painful, everything disappointing or embarrassing, well, it would be difficult to find anything that felt safe to do. I, myself, wouldn’t leave the house.

I am so off-track today it’s not even cute. Enough dilly-dallying.

So I happened to flip to my last entry in my notebook, and although I didn’t read it all, I read enough to remember ranting about our child, his strong dislike of soccer, and our ongoing ASD woes. It was only last weekend–I don’t think we’re hard-wired to forget that quickly.

Anyway, there’s an update. And with that update, a helpful tip. Because I’m that kind of girl. Actually, it’s more for myself than anybody else because I’m presently trying to dig it all up again in preparation for round two (parenting strategies, that is…and preferrably the more successful ones).

So, first, the update is that this weekend my son scored a goal…not one that happened to nick his shoulder after leaving his teammate’s foot on its way to the goal…not one that happened to ricochet off his backside as he was running in the opposite direction (trust me…we’ve done those, and, yes, they all count)… but an intentional-knew-where-he-was-on-the-field-and-was-heading-in-the-right-direction-on-purpose kind of goal. That kind. The kind he meant to score. Then threw out his arms and sailed airplane-fashion from one end of the field to the other before stating he was, “done for the game.” (Which I respect, by the way–no shame in an early, glory-is-still-good retirement).

That was the extended version of the update. My apologies. But the reason I wanted to write about it, other than just pure, shameless pride, is that it was yet another good reminder. It was a reminder that when a good old head-on battle with something ASD-related (or childhood-related… or life-related, for that matter), only ends in bitter defeat, it does not mean the end of the show. It only means it’s time to rally and regroup and come up with our very best strategies to outsmart it.

So my son is fearful on the field. I get it. I respect it. However, I do not want it to own him. Unfortunately, there’s no way to teach bravery. Not just like that anyway. But I’m a smart enough cookie, and my husband, well, he’s married to a smart enough cookie, and together we should be able to overcome. Pick it apart. Do something. Find one tip of the thread and begin there–disregarding the tangled mess that begs our attention.

So what was our thread? One task, and one task only. The only way for him to earn his playstation. When you are on the field and the ball is coming in your direction, you go after it. Try to be the first one there. Get a foot on it. Not about scoring…not about maneuvering or fancy footwork…about finding a task that outweighs the burden of the fear. About filling the hole. Not just saying, “don’t be scared.” What ridiculous advice. But saying, “do this.” True ABA style. Don’t worry about another piece of it, just this. And he did it. All game long… until, in the last quarter, he did it again and took it all the way in.

Glorious.

It’s not about my child becoming a superstar. It’s about my child learning to overcome.  I want to know he can. I want him to know he can, and he learned that on Saturday.

And it’s about keeping in mind that brute force–“you need to stop being so afraid”–is not always the way to accomplish the task. It couldn’t be. It’s not the muscle men ruling the world….

random: ASD and the present

September 17, 2010

This has just been on my mind lately so what better reason to get it all out…

My son started kindergarten. So far it’s been a huge hit with only a few spare moments proving otherwise (like the morning of the first day when he expressed his concern with “I’m not going to kindergarten, and you can’t make me.” And this morning, randomly, when he expressed more concern with “I hate kindergarten, and I’m never going back!”–so not 100% a hit, no). Anyway, he’s doing just fine. In fact, the little bit of resistance he’s putting up makes it feel all the more normal.

And he’s got friends. Friends who love him and ask after him when he’s not around. Who notice, and are disappointed, by his absence. (We should all be so lucky).

And he’s reading…his skills strengthening by the day. Independently learning and gaining speed–not something we’ve had to guide him through. I mean we’re there, yes. And we encourage, of course, but we haven’t had to directly teach it.

He is growing and maturing and slowly developing into this interesting creature who is curious and generous and sincere. And for all of this, I am proud beyond words.

However, still to this day that initial diagnosis of ASD continues to cast its shadow. Still to this day are we unsure of what maladaptive behaviors are simply remnants of the disorder and should be handled with care and a great deal of patience, and which are just strictly thatmaladaptive behaviors. Behaviors that should be eliminated or substituted with more emphasis, be it through punishment or other harsher lessons.

I’m not talking about beating my kid. I don’t have it in me–can barely even bring myself to let him down even if it means killing myself to avoid doing so. I live for him. Never want to see him hurt. But, that being said, there are these things he does that I feel represent overall strategies he will find himself using later on in life. Not just a mildly problematic behavior in the present, but the beginning of a characteristic or a quality….I’m not making sense. Let me try an example…

On the soccer field, my son bursts into tears when the ball or another player comes near. “I’m afraid,” he says. He bursts into tears when he can’t get his sock on. “I can’t!” he cries. He bursts into tears when he tries something new but can’t get it to work the first time… “I can’t!”, “I won’t!”, “It’s too hard!”

So I see this thing about him that I can’t put my finger on. Don’t understand the root of it, or more importantly, its potential. Is it all the tail end of the ASD blues? Social issues and fine motor issues and all of those things rearing their ugly heads in obscure moments? Because honestly, if I couldn’t get my fingers to do it, I would cry, too. If new faces, charging at me full speed, were truly as threatening as rabid dogs, then, yes, I would cry, too. Or…in an attempt to help my child, am I teaching him never to push? Am I teaching him that only quitting can alleviate the frustration of doing… and not that accomplishing is by far the most satisfying, despite the amount of effort and tears involved?

I reem my husband ever Saturday after the soccer game for his negativity. “Look how far we’ve come,” I say over and over. At two years old, we didn’t know if he would ever talk, have friends, attend school. But there is a whisper of frustration in the corner of my own mind–one that at times grows to a demanding volume… A frustration that comes from knowing if my child could just try, that he could do it. The frustration of knowing he can.

And then, somewhere in the background, is a less demanding doubt that says, “but what if he is trying?” What if it’s his BEST efforts that have gotten him here?

Then to push any more would just make me an animal. And I’ve got serious flaws, but I’m no animal.

And it goes on and on…..

Undivided attention. Yes, I think it might really exist. Difficult, needless to say, in this age of everything-at-your-fingertips electronics, but possible. (All this damn electronic communication, my dad once said, and no one ever actually talks!)

I had put this topic further down the list…meant to be brought up later in the story, but here it is…more a reminder to myself than anything else. And a necessary reminder because, since my son has started kindergarten and therefore has been removed from my house for 7 1/2 hours a day, I need to remember my time is his time once he gets home.

So the tip: make sure to set aside chunks of time every day that are only for your child. No competition. No interference. Just you and the kid.

And how should this look? Well, when you say, “Let’s play,” you mean “and only play.” Not “let’s play while I’m on hold, then you hold while I’m not.” And not “let’s play during the commercial…” or in between jokes with a friend…or while flipping through the newspaper or while juggling tasks in the kitchen… only “let’s you and I disappear and get crazy…… just us.”

Because the truth is there are things that can be done in groups–cleaning and cooking (if you have cooking skills like that), phone calls and laundry, filing stuff and t.v…. but there are also things that are just not meant to be balanced–not available for multi-tasking. Like you wouldn’t multi-task while having a romantic evening with your spouse, cuddling and cooing and firing off a quick text to a colleage…(right, sweet husband o’mine?) And you wouldn’t multi-task while trying to meditate…or while ears-deep in a great book, and you shouldn’t multi-task while you’re playing with your kid. Because no matter who you are, you just can’t.

You can be another body in the room. You can be kind of a cheerleader, a robot maybe, spitting out “great job!” over and over, or “that’s awesome!” But you can’t play. Because real playing requires your wit, creativity, and your undivided attention… which does exist, should you decide what you are doing is worthy of it.

general tips: keep it simple

September 14, 2010

In the wake of learning of my son’s communication difficulty, my husband and I learned how to be better communicators ourselves. This was easier said than done because it turns out we both thought we were experts.  Little room for improvement. And good luck trying to teach an “expert” communicator how to communicate better. It’s like chewing on a chunk of brick.

Anyway, the tip: keep it simple. (That’s the nice version.) Shut your trap. (Not as nice, but dead on). However you look at it, you’ll want to stop yourself from talking incessantly (which I haven’t aced yet, no.)

Take giving directions, for instance. We parents have a tendency to think everyone is exactly where we are mentally. So when we go to rattle off what we think is a simple request, we go overboard. I listen to my own father try to tell my little sister what he wants done, and by the time he’s on the sixth step, I can’t remember what the first five were. I try to remind him to tone it down. One direction at a time. “Put this there.” Everything else can wait until that first step is complete. Because the reality is when we overload, there’s a great chance none of it gets done, and one thing, as skimpy as it sounds, is 100% improvement over that. Keep it simple. One direction at a time. It feels hard to do, but you’ll get there. Then you will begin to be annoyed with anyone who doesn’t show you the same respect. Like bosses, who have no upper limit.

Keep it simple. Now this one is less intuitive, but you might be ready. In order to keep it simple, try not speaking until you have full attention. And in dealing with those who struggle with eye contact, even spouses who can’t take their eyes away from Madden (yes, they count), try making them connect with their eyes before beginning. You might not feel like this belongs in the “keep it simple” category, but it really does. Because when we don’t have full attention or we haven’t made eye contact, we over-instruct. We over-function. We over-talk. And in this way we become background noise because our children learn to just tune us out. So instead of barking instructions at the back of your child’s head as they watch intently their favorite cartoon character, who demands nothing of them by the way, run all-crazy-like across the screen, try positioning yourself in front of them. Eye level. Kneeling if necessary. Make sure they know you’re alive before beginning. (However, please refrain from just blocking the t.v…. yes, this works, but my mother did this regularly, and something about it just reeks of lack of respect). Keep it simple. Make sure to have their full attention before asking them to do something they’re probably not going to do anyway, therefore eliminating one possible cause.

And last, keep it simple by carefully selecting word choice. Don’t say, “I need you to do your chores,” and then get all in a huff when they don’t do their chores when it turns out they have never heard the word chores. Know your child’s vocabulary, and be conscious to use words they are familiar with. Also, refrain from sarcasm… and be careful with double negatives… and be weary of always framing everything in a question…”You want to do your chores now?”. Of course, they don’t. Be clear. Keep it simple. And don’t try to pack in 6 very important stand-alone-points into the last paragraph of an already-disjointed post. So do not do what I do. Keep it simple.

So I’ve got my work cut out for me….. I already know.

So here’s a little more of our story so that the next few tips don’t seem random….or made up.

Approaching three years old… that’s about where we were. 15 hours a week of ABA (applied behavioral analysis therapy) + three hours a week of speech + one hour a week of OT (occupational therapy). While other kids were spending their mornings out front of their houses with buckets and shovels and cheap plastic toys, our boy was being seen by a variety of therapists in heavy rotation. It was structured play. Very controlled. He was being taught how to play. And he loved those ladies with their bubbles and light-up toys and smiles as big as the morning sun. On warm days they took him down to the park or down by the water, either location serving as a natural reinforcement. Made him work hard for his rewards and even then faded them out. More work, fewer rewards. I think there were times the work was grueling, but in a sense, he hungered for it. It was his ticket to  the world, and somehow he understood this.

Now I’m sitting here racking my brain… trying to remember what exactly they were working on at the time. Or generally, at least. I know there was a lot of focus on the spitting…All of his therapists busy compiling tables of data describing his spitting activity, his peaks almost always occurring during down-periods between activities or upon being asked to do something difficult. During periods when he was not being engaged and during periods of challenging requests. This was priceless information, and for years we have continued to use these cycles to troubleshoot and to identify emotions he couldn’t yet communicate.

His therapists also worked on increasing his vocabulary, which was so scant in those days. Worked on pronunciation, incorporating mouth and tongue exercises to increase strength. Worked on following one-step directions. “Do this,” they’d say, never using the actual verb until he showed he could comply with simple imitation. Over and over again. Cheers and reinforcing toys and tickling upon completion. And they worked on eye contact, we all did, because he didn’t use any.

There were some other stims, too, that were fairly prevalent. Banging. That was a big one. Staring at lights. For as long as my tired arms could hold him in the reclined position he preferred. Sliding doors, oh…the sliding doors…A trip to Target, and we had to figure in an extra 20 minutes to hang out and watch them slide open and shut. Therapists encouraging us to figure all of this into our time calculations, this time for stims, so that we could use it in a positive manner. So that we wouldn’t just end up in a fight, a hurried struggle to get him past it.

In this way we learned how to use the stims as part of a reward. To incorporate them into our day as a kind of built-in veg-out period. My husband would stim on his video game. I’d stim on my music. My son, the master, would bang and spit. We’d all get in some stim-time before hitting the hard work again.

As difficult as the schedule was at times, as draining and even confining, it was working. We were making some head way. We were witnessing the effects of early intervention, of the kind of preparation and pre-training that needed to occur before any real learning could begin. And it was all good except that we had run out of money. Tapped out. It was time for us to put an end to the ABA, uproot, and move the family back home to mom’s house. My son was nearly three.

It was an interesting transition. Fairly fast and fairly organized. We moved right into our basement one room + bathroom set up without so much as a hitch. We did. My son was a little more rattled, and it was the first time it occurred to me how hard these things were for him. How we were able to talk away, voicing concerns and joys and dismay at our leisure. Seeking comfort in each exchange. But how my son, surely with as many thoughts and questions and gripes, had no way to express it. How all of those words were bottled up inside his little head, and how the only thing he was left with was his choice of behavior. His only way of showing pleasure or disapproval. So the boy stimmed. Stimmed like there had never been any intervention, like there had never been any ABA, and we could only be patient and let him get settled. We just had to let it pass.

That period has always been a good reminder to me that relapse does not necessarily imply a degraded current status. Does not have to mean “has gotten worse“. It’s a set back, and it’s usually a clue to a bigger issue. Since then we have kept an eye out for “off” behaviors during turbulent periods. They are not always self-stimulatory behaviors…distress shows itself in a multitude of forms. But when we’re keeping our mouths shut and our eyes open, they’re there to be found in one form or another.

Just a thought….in our experience, it’s rarely been accurate to say his autism is worse or better from one day to the next. It is more accurate to say that it’s merely packed away, stored until the next time he needs it. To cope. To adjust. To express. On the “good” days, it’s packed away. On the “bad” ones, it’s been called upon. With this thinking, we can continue to learn from it and can continue to grow…

Wow, this is deep. I need to lighten up a little.

The Tip: No matter what it is…. Always assume understanding and knowledge is zero, and start from the beginning. Teach only the first part then introduce the second part only upon mastery. Teach it in pieces.

I love my husband. And I give that man a ton of credit for having to take “parenting tips” from me on a regular basis and not having lost his mind or given me a piece of it. He is a good person, and in that, he is a wonderful parent. Not because he doesn’t make mistakes, obviously we all do, but because he is a willing learner.

Take this morning. I’ve asked him to try to be more involved in some non-sports/non-Star Wars aspects of my son’s life. He, being a man, is obviously task and goal-oriented. (Is that sexist? Or dead on?) I was thinking more along the lines of color with him, he translated it as teach him. Wonderful. I’ll take what I can get. So my husband sits down with a pair of socks and a pair of laced shoes, and says, “Put them on.”

My son is six. Maybe he should know how to do this, but he doesn’t. In fact, the socks alone have been a major challenge since we can remember. ASD will do this, you know, put a damper on self-independence and such. Fine motor stuff. My son’s little fingers just can’t manipulate the things, and he gets frustrated the first time they roll up. So I sat with them. Tried to act as translator.

We managed to get the socks on, not without some tears, but on, and then we took on the shoes. In a series of approximately 42 steps, my husband demonstrated how to untie, loosen laces, make an opening, adjust the tongue, put in the foot, begin to pull laces in perfect order to achieve the right amount of snug, tighten by pulling, and finally, lace. My son was almost half watching up until he got to the “loosen laces” part. After that, he was all threats and whining and blank stares. This is what prompted this post. And thank God, because my well of parenting tips had all but dried up. (Mental note: in case of drought, hang with husband).

Anyway, this is how I saw it. I don’t know if you ever had to take some kind of computer course as a requirement for a degree… not because you LOVE computers or the ability to perform a variety of tricks using some program that you only ever saw beneficial for something far more simple, but because you were told you had to. So there you are, sitting in class, as the instructor takes you through a series of approximately 42 steps of how to perform a very difficult and time-intensive and possibly unnecessary task (think 6 year olds…if they have a parent who will still do it, then the task remains unnecessary). Anyway, step 1, you’re feeling good. You know you can do that. By step 6 it’s getting pretty hairy. However, you still trust your ability to use common sense in order to repeat it all. By step 12, you can’t remember what happened between steps 2 and 11. By step 29, you can’t be sure of where you are. By step 40, you only know for sure you absolutely hate computers and you might have the biggest jerk for an instructor in all of creation.

Well, it’s what I saw happen, and it was a great, great reminder to teach it in pieces. We had no business showing him how to make an “x” in order to begin the process of tying, in fact, we almost had no business even bothering with making him untie. He is still rocky with getting his socks on. That is what we need to master before anything else. Once it’s looking pretty promising, we can probably get to the untying again. Untying and opening. I made my husband promise we would stop there. It is a manageable task, will only take but a minute once he’s comfortable with it, but for now, it’s a brand new skill and therefore very taxing. Anything beyond the first step, and the only thing we’re reinforcing is a contempt for trying anything new and challenging. And for his parents, who clearly hate him.

In the world of teaching, it’s called Zone of Proximal Development. It’s introducing small increments of a new skill at a time, instructing until completion, and then only introducing the very next part. Making sure they can walk before you ask them to run. In the world of child-rearing, it’s called having patience. And even those of us who fall a little short naturally can come to learn it. Turns out patience is like muscle, even the frailest can put it on.

Until the next post…..

Okay. So I’m kind of almost full-swing into these “General Tips” posts, and I feel a quick explanation of where they come from (or a list of credentials if I had any) is in order…

Yes, these are parenting tips. No, I do not think I am the authority. However, some of the things we’ve done around here have worked wonders, and I would like to share–actually to trade if another living human being happened to visit this blog–the stuff that has turned out to be successful. And, although I still know I am not the authority, I would like to add that my son, diagnosed with Autism Spectrum Disorder four years ago, appears to have shed the diagnosis. Or, at the very least, is man-handling it. So we’ve done something right. I’m not sure what but definitely something.

I’m sure you will recognize many of these tips, as they are, in fact, well-known. Possibly even employed entirely by more, well, better parents. I only throw them up there like their my own creation because I stumbled upon most of them on my own. Learned to incorporate them out of necessity. After hours of research and troubleshooting and what-not. (You say reinventing the wheel, I say customizing.) So although I rarely ask for credit when it comes to the success of my child, occasionally, especially in regard to these “tips”, I’d like a smidgen. For discovering them and implementing them. Despite how many “good” parents knew to do them from the beginning.

And now you’ll hate me for saying this because you will wonder why I bothered with all of that jumble, for this tip, I get no credit. It isn’t something I learned on my own. To the contrary. It was a tip “handed down” to me from my son’s first OT (occupational therapist). Actually, beat me with it, is more accurate. Over the head. Time and time again. (Rarely am I a hard-headed person, but with this, I was an idiot. Stubborn, however, only because I wanted to make my son happy, and I wanted some things in his life to come easy. I thought I could make him happy by not doing this one…So truly a crime born of the best intentions).

Now, if you’re still there, the actual tip: Make your child use words in order to get what they want.

Bam.

You’re judging me already, I know it. You’re saying to yourself, of COURSE you do. Who gives their kids stuff without making them ask? Well, the truth is, a lot of people, myself included. I don’t know if you know this about humans but we often do bad things because we think they’re good. Take me, for example. I think I know my son well. I think I already know what he wants (which is usually Goldfish, therefore taking away any credit I might receive for being impressively tuned in). When he cries, I bring fish. I am a well-trained dog. So sometimes, I wouldn’t make him talk because I was already trying to fix the problem. I was too busy making him happy. Sometimes I was just being super-mom (this is actually, first of all, rare, and second of all, not an accurate use of “super”). I was bringing him stuff before even he knew he wanted it. Over-achiever style. (As a matter of fact, there were a couple of years there I explained my child’s lack of use of the word hungry as a result of him never ever having actually felt it. Not proud.) And there were also those times, again, not proud, that I just didn’t have the time.

However, if a child doesn’t have to ask for it, they won’t. Maybe ever. Or at least as long as it continues to be delivered. So although it might not seem of the utmost importance when you have other, more pressing concerns, it really is. Make them say it. Fish? You want more fish? Say ‘muh…muh…muh…more’. (It looks cheesy in print, I know, but try it).

So go grab your child’s favorite crunchy treat. Give them one at a time and wait. Or some bubbles. When they put out their hands for more, prompt them to use their words. If they can only mumble the initial sound, then that’s their ticket. Once they’ve nailed it, make them try the whole word. If they already know the word for it, but you want them to add, “I want,” make them. Hold out until they do.

Make language tempting by showing them the most important function–to get. Because long before they will care to use language to express their love and appreciation of all you do for them, they will want to know how to get more. Use what you got.

ASD and the early days

August 21, 2010

This post is not a tip. I would like it to be as I have lots of them ready, but I think if this blog will ever be helpful to anyone there has to be some context. And the re-telling of our story helps me remember how these little tips and strategies came to be a part of our own gig.

So. Our boy was nearly two years old and freshly diagnosed with autism spectrum disorder. I think that’s where I left off. Wordless. Action-packed. Those were our days. Our son, donned in an over-sized crinkling diaper, straight-leg-marched from here to there banging plastic bats and single-syllable-singing at an impressive volume. He was wonderful, absolutely wonderful, but we were going to need some help.

Thanks to the neighbor’s friend (at our sit-down-over-coffee arrangement), I had begun to get organized. Equipped with a list of organizations and books and other resources, my husband immediately started making calls.

First we called our Early Intervention Program (Child Find). They were nice and helpful and even more organized than we were. They set up evaluations so that we could get services going immediately. We did as we were told.

Then we began our search for an ABA (Applied Behavioral Analysis) organization. This turned out to be more difficult than we had anticipated. Most had no availabilities. Some wanted so, so, so much more than we could afford (they seemed to be like the private schools of ABA). Some weren’t exactly local. My husband continued to put in calls tirelessly, collecting prices and contact information as he went.

Finally we found one. Got a meeting set up to discuss our son’s needs, strengths and problem areas. We began discussing the intensity of the program…how many hours a week it would require. He was very small still, and they were suggesting 15 hours a week to begin with. Any more, they said, and it would be too much. They had his age to take into consideration.

Well, thank God 15 hours a week would suffice. It was going to run us approximately $2500/month. Not to be covered by insurance. A developmental disorder, as it is, not an organic one, and therefore, no one’s responsibility. Not covered.

Now I will not argue the impact of the program. To do so would be a crime. It definitely helped my son develop some early skills that I don’t know how we would’ve been able to teach him. In fact, the only gripe I do have was the cost and the situation with insurance. At those rates, we were tapped out within 9 months. We were unable to continue it. And because the program had proven to be so successful, and so amazingly tuned to his specific needs, I was an utter mess when we decided to end it. Cried. Like we were about to pull the plug. But we were already at our limit, and their new 25 hours a week at $3500/month recommendation was way out of our range.

So that’s how we spent the early days. Shuttling between evaluations and therapy sessions and listening to him scream bloody murder during his 3-hour ABA sessions. It felt unfair, you know, to have to put a child so young up against all of this. It was all very hard work for him, and we often marveled at his stamina. But it was our life, and there was still an enormous amount of joy in it. Not complaining at all. Only reporting.

Kids typically do well when they’re given acceptable options. Usually. In fact, all people usually do well when given options. However, when our choices are endless, rarely do we make our way to the best ones. So here’s the tip: avoid, as much as possible, “don’t-ing” your kid without a clear explanation of what the offense is, but more importantly, without providing alternatives.

So here’s my take…

Imagine walking into the DMV with one very, very important form that you must get completed. This form is like gold. You only need one signature, and you are able to finish your application to study dance abroad in Tahiti… in a small corner of the island where no kids are allowed…. Just one signature, and you are a free bird.

You wait your two and a half hours, which all but fly by, and then you see your number flashing above an empty window. Bingo. As you get settled there in front of the, of course, warm and pleasant DMV representative, you slide the form between her hands.

“I only need to get this—” you begin.

“No.” She slides it back then hits the button that makes a new number flash in your window.

Just like that. Just no. Nothing about why because you would like to know why, but more importantly, nothing about what you can do. What to do next.

We all like to know what we can do. Without this knowledge we are like timid foreigners in a busy city, all bug-eyed and jittery. And we owe it to our children to provide that same comfort.

So here are some scenarios… Your child has toy stripped from him at playground. He levels the kid and takes it back. You yell (first mistake), “Don’t do that!” Child ignores you and continues to level people throughout the rest of his life.

Empty space. You’ve left your child in a void. You quasi-stated the rule, though without clearly identifying the offense, but you also failed to give alternatives. You’ve taken something away but then failed to replace it with anything better. Alternative: you pull your kid aside and say, “We don’t hit. If he takes your toy you can say ‘that’s mine’ or you can ask for help.” Or whatever you think is acceptable.

One more scenario. Child says upon seeing healthy breakfast, “I am junk-food-man. Healthy food kill me. I want cookies.” (true story). You yell, “no!” and push food in front of him and then proceed to spend the rest of the morning trying to sort out the damage done during the ensuing fight…   Or you try, “I’m sorry, junk-food-man, but we don’t eat cookies for breakfast. Your choices are you can eat this here without a fight, which will actually help boost your immune powers AND win you your life-saving power-up cookie after lunch, or you can eat this here with a fight, get no cookie after lunch, and therefore die a slow and agonizing death…”

Okay. So I’m still fine-tuning this approach. Next I’ll write on the importance of not using sarcasm when trying to communicate something important with your child. Or something else that I will then proceed not to do in my own home.