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Autism: One step forward, two steps back February 25, 2010

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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What was that saying from science class?

Something like “for every action there is an equal and opposite reaction”. Well, I think there’s some real truth in that…especially when applying it to kids with Autism.

Take my kid, for instance.

Every time he has a big break-through in language development, it’s accompanied by an equally big setback in behavior. Seriously, every time one positive gain is noticeable, so is the accompanying glaring setback.

Do you notice that in your kids?

It’s almost like the section of the brain that gets fired up and starts cranking out new language suddenly sucks up all of the brain’s total energy supply so that it can fuel the language burst. Like it steals the energy from the other parts, leaving the part of the brain that’s responsible for behavior depleted and gasping for air.

Leaving me with a little monster… who. won’t. stop. talking.

I’m not complaining about the talking. After all, I repeatedly promised … in countless late night secret bargains with God… that I’d never complain about how much Fabio talked or anything that might someday come out of his mouth  if God would just let him become verbal.  And I am so thankful.

But the frustration over dealing with behaviors resurfacing after you thought they were gone for good can be overwhelming. Why does nearly every milestone have to come with a price tag? Isn’t there ever a win-win?

So, with little choice in the matter, we wait it out. We wait for the balance in the brain to be restored and the energy to flow evenly. We wait for the language to take root and the behaviors to level off.

For we know that when this little maniac transforms back into his more manageable self, he will be one more step further along in his journey from a simple exchange to a conversation.

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Adventures with Mr. Gutter Mouth March 6, 2009

Posted by hopeauthority in Autism, Children, humor, Parenting.
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6 comments

I knew it would happen someday. 

The thing about talking …or swearing…in front of kids is that they soak it all up like a sponge. And don’t kid yourself about those cute little non-verbal autistic kids who seem to be in their own little worlds. Little sponges, I tell you.

Remember this one thing: Just because they aren’t talking, doesn’t mean they aren’t  listening. They understand more than you realize. And your day is coming. Mark my words. It’s coming sooner than you think.

So, the politely vague note comes home from the teacher’s aide (who is, like, 14 years old or something) and it says Fabio “had a ‘slip’ and they ignored it”. So, dope that I am, I am thinking my kid fell down and they left him there. Then it goes on and says something about writing neatly and a ‘slip’ again. WTF? So I politely write back that I don’t understand what they are saying, please clarify.

Apparently, unbeknownst to me, the code word for a curse/swear/bad word is a ‘slip’. Ohhhhhh….I get it now. So the details of the exchange were as follows:

Teacher’s aide: “Fabio, you need to rewrite this assignment. It is not neat enough.”

Fabio (begrudgingly rewriting it, replies): “Son of a bitch…”

Look, I’m a bad mom. I admit it. I laughed at the picture in my mind. Do I want him to go around cursing? Of course not. But I am not going to have a fit over an occasional ‘slip’. Especially when used in perfect context!

What did bug me was the note that came home with the details from this doe-eyed youth of a teacher’s aide. She had whited-out the following addition: “He did NOT learn that at school, for sure.” (Yes, I read the back of the page and could easily see what she meant to conceal!)

I’m not proud to report that I sent in a note today figuratively ripping her a new one over that comment. I told her it was out of line. I told her almost every parent and every kid, typical or not, curses on occasion. I told her that since she is not a parent much less a parent of a kid with autism, she most definately was out of line in judging me.

Then I added that I know he didn’t learn it at school because he learned it from me. I told her she could also hear an occasional “Goddamnit”, so she’d better brace herself for it.

I explained that during the SIX YEARS  I waited and worried for Fabio to find his voice, I promised myself that…if only he would speak… I would never tell him to be quiet. That even a bad word would be a good sound to my ears.

She called me first thing this morning to apologize for the misunderstanding, which I really appreciated. I believe she learned something important today about perspective. Something she can use in the remaining zillion years of her teaching career since she is just starting out. 

That and that you can still read whited-out text from the back of the page. Well… son of a bitch!

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Note to friends and followers: My 100th post is very close. In keeping with tradition, I am considering making it a post answering any questions…tasteful of course…that you may have about me. So if there’s anything you want to know that you don’t already, let me know.

A 12 Word Sentence…and no curses. January 11, 2009

Posted by hopeauthority in Autism, special needs.
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‘C’: “Hey Mom, can I have a big piece of that bread, please?”

Me (mouth agape, then recovering enough to leap from my chair, scoop him up and run toward his coveted loaf): “That was great asking honey! You can have the whole loaf if you want!”

Then, six big slices later, and as soon as I sat back down… He says: “Hey Mom, I’d love some big drink of cold juice. Please Mom.” So, I again leapt into action. Which incidentally, pretty much wraps up my aerobics for the day…

Since November, we’ve gone from an average of 2 or 3 words to convey a thought…to about 7 words in December…to 12 words today.

Of course, I want to believe its the excessively expensive HBOT that is responsible for this transformation. And I am aware that today’s lengthy utterances could just be a fluke. But it is  progress.

Undeniable progress.

It’s not like I am in the habit of counting his words. It’s just that it really is noticeable when the length of a typical sentence jumps like that… so noticeable that you actually stop in your tracks while your brain replays the sentence and counts off the number of words used… as if in some kind of word-check mode. 

This has been a long time coming. In the early years, one of my biggest worries was that he’d never speak. His therapist was always careful not to promise me anything in that regard, despite my repeated attempts at reassurance. It drove me crazy back then, but one day…about two years into his speech therapy…she told me she was comfortable in saying that he would speak. That it was a delay. A long one, but a delay nonetheless. And she was right. (Thanks Kathy!)

So to all those parents still waiting for words…or waiting for sounds..or waiting for echolalia to be replaced by regular speech, I want you to know that in many cases, it will eventually happen. It seems like it never will come when the therapists are working so hard just to get the letter sounds “A is Ah. B is Buh…” But they really need to establish those building blocks first.  And it’s hard to keep the faith as the years keep rolling by. And it’s hard to keep waiting for that first spontaneous “I love you.”

I promised myself in the early days …when all those parents of typical children would try to cheer me up by saying I’d be telling him to “be quiet” soon…that I’d never tell him to “Be quiet”. And I won’t…

Not even when he curses…

But I do hope he doesn’t start stringing those phrases together like some kind of George Carlin routine…

HBOT Update after 20 Dives January 4, 2009

Posted by hopeauthority in Autism, Health.
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Well, we finished the 20th hyperbaric oxygen therapy treatment, or “dive”, last week.

That brings us to the half way point of the expected 40 dives…which our doctor tells us is the “standard” amount of dives most patients undergo. Give or take, of course. God forbid we ever get a definitive answer when it comes to the expected outcome of an autism treatment.

Before we begin the next set of 10 dives this week, I figured I’d post an update on how ‘C’ is doing with all of this diving.

I do see continued improvement, most especially in language. His verbals are exploding, though more often than not he is still using scripted language from TV or video he’s seen.

However, now he is also repeating phrases used in his classroom. That’s been an eye-opener. And tomorrow when he finally returns to school, I have no doubt that ‘C’ will clearly… and in perfect context… use a nifty phrase he picked up from me over this excrutiatingly long freakin vacation: “Son of a bitch…” 

Hey, at least he’s talking, right? And I know it’s wrong not to correct him, but it is just about the cutest, funniest thing to hear come out of his little mouth especially since he uses it in context. Little cutie will be in the other room quietly and diligently lining up some assembly of  85 little cars with the focus of a neurosurgeon when I’ll hear one of the toys fall over, followed by his exasperated “Son of a bitch…” All kids do this kind of thing when they’re little. It’s typical!  Besides, I promised myself years ago that when and if ‘C’ ever talked, I’d never, ever tell him to be quiet.

So, in addition to the non-stop talking, Mr. Gutter-Mouth is moving just a bit closer to conversation. By that, I mean that I can ask or say something to him once and he will often respond immediately and appropriately without me repeating or prompting. Or he will initiate the exchange. It’s not much more than a brief exchange yet, but it’s still great.

It’s hard to tell whether his challenging behavior lately is due to the HBOT, or yeast flare-up (doubtful), or just being bored to death with this long break from his routine (likely). He seemed to have some minor stomach bug over the break which has resolved itself to the satisfaction of this poop detective. He is very defiant and very OCD lately. And that drives me mad.  

‘C’ has a history of regressing in behavior whenever he is undergoing big gains in speech or some other area of brain development. It’s as if the part of the brain that controls behavior “dims” and lends its energy instead to the other part of the brain which is firing up some new skills. I’ve been told by others that they see this in their kids too. Then when things level out, ‘C’ retains his gains, and his behavior improves. Until the next time…

So it’s back in the tank on Tuesday. We’ll keep you updated as we go. Hope to get the next 10 dives in before the Superbowl. If we don’t go bankrupt by then, of course…

Reflections on HBOT…after First 10 ‘Dives’ December 8, 2008

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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Tonight, we are scheduled to resume the next set of 10 HBOT dives. The first 10 were squeezed in between Election Day and the Monday before Thanksgiving. The next 10 should be done before New Year’s Eve.

We took 2 weeks off to regroup and battle an intestinal yeast overgrowth… which I undertand is a common side effect of Hyperbaric OxygenTherapy. We slayed this dragon using activated charcoal in the evening, and continued our strict adherence to the specific carbohydrate diet, and made sure we never missed a probiotic dose.

No one warned us about this side effect, but I had read about it somewhere a long time ago and it was floating around in the back of my mind. So I recognized the signs when they came screaming at me! Not that that made it any easier to deal with, mind you.

An ABA therapist who knows my son well commented yesterday that the few people she knew who used a soft HBOT chamber had bad behaviors from it and stopped the treatment. The parent of the one child she knew who had used a hard HBOT chamber (which is the type ‘C’ is using) said her son is talking up a storm now. That got me thinking…

I certainly hope that those other parents didn’t give up on the therapy, thinking it was causing a permanent behavioral regression…when it may simply have been an undiagnosed yeast overgrowth…which is somewhat easily correctable. We’ve battle yeast with powerful prescription meds like Lamisil and Flagyl, and this time we went holistic with the charcoal.

So I’m posting this to remind people that if you or someone you know is doing HBOT, please consider preventative measures to ward off yeast overgrowth…or at least investigate whether any undesirable behaviors that seem to be caused by the HBOT may actually be from yeast instead.

So, to summarize the experience of the first ten dives, I’d say that there was a definate down side of very bad, regressive behaviors which we hadn’t seen in almost 3 years…coincidentally the last time he had a yeast issue. Lots of lining up and stimmy behavior, short-tempered, biting himself when angered, minor sleep disturbances, more tantrums at school when demands were placed or transitions expected.

It was really upsetting to see this and we initially felt like we made a big mistake doing the HBOT. When you are in the middle of a downward spiral like that, its hard to have faith that its going to level off and be okay.

But…as fast as the regression came on…it left. For two weeks that felt like a month, he was often Mr. Hyde. Then, suddenly he was Dr. Jeckyll again. To stay. Well, not really, but you know what I mean…

The positives far outweighed the negatives. The bad behavior is gone and in its wake we’ve been left with a more connected, attentive angel boy. The eye contact is much better, the choices he makes at school are consistently much better. Very little tantruming or need for redirection at school. His play is more creative and appropriate. 

The most noticeable benefit is that the average length of his utterances has increased from about 2 words to about 7 words. (“Open window” is now “Can you open the window please, Mom?”) And he is speaking all the time now…at least in the home setting. He is starting to read. He is also spelling words out loud for the heck of it…like in the tub, spelling M-U-S-I-C and L-I-T-T-L-E, which are words too advanced for his level in school. He finally spontaneously told each one of us that he loved us, on separate occasions.

And its too early to get to excited, but he didn’t watch Noggin for one minute this weekend…the whole weekend. He started playing Wii sports!

I swear… if he asks to watch CNN instead of Dora tonight while we’re laying trapped in the big glass HBOT tube…I am going to go berzerk!

So, I am trying to be cautiously optimistic as we continue with the HBOT. I hope we won’t suffer through another bad regression with the yeast flaring up again. I hope the gains we’ve seen so far will be permanent and that he will continue to improve. I wish I knew someone else who went through this and could tell me I was doing the right thing…

At least it’s the season of miracles.

I’ll keep you all informed as we go forward on this exciting journey. Please pray for ‘C’.

I Stand Corrected! December 5, 2008

Posted by hopeauthority in Autism, Children, humor, Parenting, special needs.
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I never saw this coming…

This week has been particularly busy for me. I had 3 closings. I can’t remember the last time I had 3 closings in one week. I’m lucky to have 3 closings in a month with the current real estate market. But I digress…

So, my mother-in-law got ‘C’ and his sister off their buses today. That breaks my normal routine of whisking ‘C’ into the house after school and opening up his communication notebook to see what the teacher has to say about how his day went.

Well, I get home and he’s playing in the den.  I go into his rolling duffel bag to get the book and spy a small, new toy in the bottom of his bag. It is immediately obvious to me that he was a good boy, since the toy is from a hard-earned trip to the class treasure chest.

‘C’ is just now emerging from a rough patch of about 2 weeks, due to a yeast flare-up from his HBOT. He’s gone from Mr. Hyde to Dr. Jeckyl. It’s like someone flipped a switch.

So, I am thrilled by the toy and want to share my pride. I go into the den with the toy in hand…

“Honey, I am so proud of you! You were a good boy at school today and earned a trip to the treasure chest! I love the lizard you picked”, I exclaimed as I held up the little green reptile.

‘C’ gets up off the floor and heads toward me with a big smile, and reaching out his little hand for the prize, simply states “It’s a chameleon, Mom.”

What????!!!!!!

I don’t know what floored me more: the fact that he corrected me, or that he knows what a chameleon is!

PS:  Tonight, for the first time ever, he spontaneously told his sister that he loved her.

Sweet Dreams, everyone!

“I Love You, Mom”…Finally! November 17, 2008

Posted by hopeauthority in Autism, Children, Parenting, special needs, Uncategorized.
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It took 6 years, 8 months and 2 days. But the day finally came. And it was so worth the wait.

‘C’ finally said, “I love you, Mom.”

Without any prompting, coaxing, or set-up. Not in response to my saying I love him. Completely spontaneously and out of the blue. 

I’d imagined this moment for years. I figured it’d happen almost predictably, while snuggling up somewhere together. But, instead, it came as a jubilant outburst of affection right in the middle of the foyer. Followed by a running leap that could topple a professional linebacker. But not me. I had found the strength of 10 grinches linebackers…plus 2.

It was all that I imagined it’d be…and more. Some things are truly worth the wait.