Saturday, February 25, 2006

Now THAT was uncalled for...

In a town not too far from where our family lives, there is a fellow autism mom who recently published her first book. As a result, she is rapidly achieving celebrity status, and her name and the message she is trying to get out are now surfacing everywhere, as are various pieces of her writing. I've read her book as well as her previous writings (which I very much enjoyed), and I've heard her speak and, while she makes no secret of which side of the Great Divide she stands on, she's always come across as being respectful of other parent's choices, even if those choices are very different from the ones she made for her son.

Imagine my shocked surprise when I came across the following writing. While a good part of the article does focus on describing how SHE lost sight for a while of her child as a child and only saw him as a collection of problems that needed to be fixed, and while her intent probably was to caution other parents of autistic children to not fall into that same trap, that intent was completely torpedoed by how she choose to raise this issue.

She started this piece with a reference to that unfortunately 5-year old boy, Abubakar Tariq Nadama, and implied that this poor child's parents fell 'prey to the desire to push their [child] toward perfection, to develop every possible edge so that they might have it all.' And while that is a rather sensationalist and speculative view at best of what Abubakar's parents where trying to achieve - as we simply don't know what they were trying to achieve-, I am really upset by the factual inaccuracies in that first sentence of the article. Abubakar did NOT die as a result of a treatment intended to cure his autism. He died as the result of an incredibly stupid mistake made by his treating physician - a mistake for which I sincerely hope this physician will be held accountable. Just like any physician that makes a mistake of this magnitude, regardless of whether the patient was autistic or not, should be held accountable. Secondly, the treatment this child underwent, chelation, was not intended to cure his autism. It was intended to address his heavy metal poisoning. The writer of this article is an intelligent and articulate person - one can't help but wonder what her underlying intent was of starting her writing with such an inflammatory, and inaccurate, statement.

But then it gets even 'better'. In the second paragraph of this article, she describes her observations as to how some parents of neurotypical children in her town will go to great lengths to push their children to the maximum achievement, potentially to the point of destroying something in the child or the parent. She then compares this type of behavior to those parents of autistic children that will go to great lengths to cure their children. Well, regardless of whether there is a cure for autism or not - and that is something parents of autistic children will have to decide for themselves based upon ALL information that is out there and not just the limited information force-fed to the (ignorant?) masses by the CDC, the NIH and the AAP - those of us that so-called 'treat' our children do not do this to get that dream child we thought we were going to get, but to address our children's very real medical problems (like the ones I listed in yesterday's post). And we certainly do not treat these medical problems in a desperate attempt to get the child into that preppy Music School or Tennis Program. I find that 'suggestion' very offensive, and I wonder if anybody would dare to make a similar statement about a parent of a neurotypical child, where the parent is attempting to treat similar health problems with a similar drive.

In the remainder of the article, she gives a very brief account of the trials and tribulations her family went through with her son. I respect her for her openness and honesty, just as I respect the choices that she ended up making for her son. But that's all there is to it - it's HER account of HER experiences and the decisions SHE made for HER son. They hold little bearing on the choices that another parent of another autistic child needs to make. And while the article ends with a very valid plea, that 'the tragedy is not autism, nor is it children who don't achieve external signs of greatness; the tragedy is children who are not allowed the chance to be children', what greatly troubles me is the (unspoken?) implication that those of us that are not satisfied with merely managing the most difficult aspects of autism are not allowing our children the chance to be children. Au contraire - actively treating those conditions that quite frequently directly contribute to our children's most difficult autistic behaviors is ALL ABOUT allowing our children the chance to be children. But it may be that my definition and the writer's definition of what 'allowing our children the chance to be children' entails are fundamentally very different. And the writer is entitled to forming her own definitions based on her particular circumstances, just like I am entitled to forming mine based on my circumstances.

But I can't help but wonder what the writer was truly trying to accomplish with the statements and comparisons made in the first two paragraphs of the article. Were these really necessary? And yes, in light of the message she carries out in her public appearances, I had expected more respect for choices that are different from her own.

Friday, February 24, 2006

Are these symptoms co-morbidities or causes?

There has been quite some buzz in the bloggosphere around a post on the Evidence of Harm board, listing a bunch of, what has been euphemistically referred to as, ‘co-morbidities’ seen in a subgroup of autistic kiddos and whether or not these symptoms should be ignored so that their parents can ‘celebrate’ said kiddo’s ‘neurodiversity’.

I am not going to repeat the particular posting in its entirety, it’s been repeated and discussed at nauseam elsewhere. And the consensus appears to be on both sides of the ‘Great Divide’ that ignoring and not treating these physical symptoms listed is barbaric, if not criminal

I have however decided to repost the list of physical symptoms for two reasons.

One - to emphasize once again, that these symptoms are found in a not-insignificant part of the autistic pediatric population (can’t speak for the adult one). Whether or not autistic kiddos are more susceptible to these ‘co-morbidities’ is a discussion for another day.

Another interesting angle to explore (and this certainly reflects my opinion) is whether a cascade of these symptoms contributes to an altered neurological development which then can result in an ‘autism’-like presentation (aka these symptoms are not co-morbidities at all, but the actual cause or causes of a phenotype within the autism spectrum disorders – that is, autism is actually the ‘downstream’ implication of other disorders and not just something you are born with – like some people would very much like us to believe).

Suffice to say that these symptoms also occur, and some quite frequently, in the ‘neurotypical’ pediatric population, and if found in a neurotypical kiddo they are aggressively investigated by the traditional medical community and treated.

Two – Quite a few of us, when we take our autistic kiddo who presents with these symptoms to a specialist that operates within said traditional medical community, are told that these same symptoms are not a separate and treatable illness, but are part of our kiddo’s autism. And that is something I just don’t understand. Why is a certain symptom indicative of an illness in one pediatric population, but part of their ‘brain disorder’ in another? Remember, we all seemed to agree that ignoring these symptoms in an autistic kiddo would be barbaric? But that is exactly what a large part of the traditional medical community is doing!!

And this absurdity is exactly why I ended up pursuing ‘so-called biomedical or alternative treatments’ for Salamander. None of the ‘so-called legit’ specialists that I’ve taken this kiddo to was able (willing?) to look beyond the autism diagnosis and acknowledge that something else was going on here that could be/should be treated. And I am NOT alone in this experience.

So, if your kiddo, neurotypical or autistic, displays symptoms even remotely similar to any of those listed here, insist on a full medical work-up. Do not be surprised, however, if for your autistic kiddo these symptoms are all attributed to your child’s autism.

And then what’s a parent to do who is just not willing to accept this ‘cop out’?
RIIIIIGGGGHTT. [Sarcasm alert] We become ‘desperate parents with money to burn who wil do anything to make their kid normal’ by seeking our answers outside the narrow minded views of the traditional medical community.

Anyway, here’s the list. I am intimately familiar with more than half of the stuff on this list.
And really, who are the quacks here? The well educated pediatrician, the allergist, and the pediatric gastroenterologist, who all ignored the picture that the combination of my kiddo’s symptoms presented, or the DAN physicians who looked at the whole picture separate from his autistic presentation and were actually able to help Salamander?

Chronic burning diarrhea
Constipation with grapefruit-sized blockage
Intestinal diverticuli
Seizures (petit mal, grand mal, tonic, clonic)
75% under normal body weight
Lesions in lining intestinal mucosa
Esophineal esophagitis
Food texture sensivitiy and swallowing difficulty
Asthma and reactive airway disorder
Allergies to foods, fabrics, toys
Immune dysfunction
Chronic sinus infections
Chronic upper respiratory infections
Cycling viruses
PANDAS (strep)
Vitamin and mineral deficiencies
Yeast overgrowth
Kryptopyrrole overload
Phenol sensitivity
Liver and kidney stress
Precocious puberty
Thyroid malfunction
Brain lesions with demyelination

Current State of Affairs

Catchy Title eh? But as I am in a great big hurry, it'll have to do....

Salamander as of this past Wednesday morning is back in the 'green zone'. He has recovered from whatever threw his systems out of wack. Still not entirely sure exactly what happened, but I got some really good suggestions from several wonderful caring people, so we will go into the next episode better prepared and, hopefully, better equipped to ride out the storm. Fact is that he seems to have a 2-3 week period of 'everything going to pot' [pun very much intended] every 2 to 3 months or so. We'll be in for a good period for a while, but when the next episode strikes I need to do some serious investigating, as there's got to be a reason (or reasons) for why this keeps happening.

As Salamander is starting to feel better again, I continue to see all kinds of amazing gains. His pragmatic language skills continue to improve, his play skills are becoming a lot more age appropriate and in general he is 'loosening up' (in the broadest sense - physically and mentally). His interactions with Potatey are becoming a lot more like you would expect between two siblings with a relatively large age difference. Salamander is starting to establish position as the older brother who can teach his younger sibling many, many things (as opposed to the other way around, which was very much the case until about 2 months ago). His ability to read, understand what he is reading, and then generalize what he is reading to day-to-day life is taking off too. Overall he is much calmer, much more able to regulate his emotions, as well as able to recognize when his emotions start to overwhelm him. Overall, his true personality continues to emerge and other people now too are getting an opportunity to meet this truly amazing kiddo (that I have always known was 'in there' but had gotten too 'snowed under'). I am soo incredibly proud of this kiddo.

I eluded in an earlier post to the fact that DH is dealing with some wacky neurological stuff, and that most recently he had an episode while he was out in Puerto Rico. He's been off the road since that happened and has been seeing various medical professionals in an attempt to tease out what the H#LL is going on here. The first visit to the GP did little to shed light - all basic vital signs are just fine (DH could benefit from loosing about 10 - 15 lbs, but can't we all), blood work normal, ECG normal, neck X-ray normal. The first visit to the neurologist generated some 'interesting' feedback. Although it is a bit premature to share the neurologist's initial thoughts (as we are currently waiting for the results of a comprehensive MRI), I'll put them out here anyway. I can always amend later.
The neurologist's suspicion is that DH has a ruptured disk at the C3 level (aka in the neck region of the spine, right where the bottom of the skull and the neck meet). A ruptured disk can results in the actual bones starting to rest and rub over each other, which can then results in nerve pinching, nerve inflammation, etc., etc. If this is indeed the case, that could certainly explain a lot of the symptoms we've been seeing (not all though). The neurologist also expressed doubts, considering that DH has probably been walking around with this for a while, whether non-invasive treatments would do much good in this case (and I would tend to concur as DH has been wearing a neck support for the past week or so, but the symptoms haven't lessened - in fact we are starting to see more). Bottom line, if he has a ruptured disk and if this has progressed as far as the neurologist suspects it has, DH will need surgery. YIKES.
Thank goodness I have made acquaintance with some of the country's top neurosurgeons as part of my job, so once DH has received some more conclusive information, I will start making phone calls to 1) get second opinions, 2) if surgery is needed, make sure we get the best one for the particular problem.

Well, Potatey is Potatey. He rolls with the punches. He is having an absolute blast in pre-school (and rapidly worked his way up from being the new kiddo on the bottom of the pecking order to being firmly in the top 10). It is such a joy to watch this kiddo develop. His ability to use language is absolutely amazing and very advanced for his age. He is totally into singing and dancing now, and it cracks me up to hear this little voice come from the backseat of the car singing 'Early in the morning, down by the station.'. This child just radiates an enormous zest for life. He is happy (most of the time) and so obviously so very comfortable in his own skin and secure of his place in the world. This may seem like trivial drivvel, but things were never like that with Salamander at that age (Salamander at age three had very much begun the withdrawal process; looking back he must have been so overwhelmed, so confused by all these experiences he just could not process or understand. And compound that with the physical ailments that were plaguing him - no wonder the child was crabby, grumpy, moody, sad, depressed, etc).
We are rolling into the terrible 3's I think with Potatey - he is very quick now to make his displeasure known (but at least he expresses his discontent in words instead of throwing a tantrum of atomic proportions), and definitely has a mind of his own and hellbent on doing things on his own.

We are seeing more and more allergy flare-ups (food and environmental), which is concerning. And this is something I do need to get to the bottom off, fast.

Well, I got to wrap this up (yes, I know, I myself am conspicuously absent from this 'State of Affairs'). Hope to have more time later..

Wednesday, February 22, 2006

Ten Things...

I typically don't like to post any of this '10 things' or 'having a special needs child is a trip to Holland instead of Italy' type stuff, as most of them are pretty hookey and have little bearing in reality.

I am making an exception however for this '10 things' list from the Shafer Autism Report. I copied the list in its entirety, but have added my own personal emphasis in Italics and/or Bold.

Ten Things Every Autistic Child Wishes You Knew

Note: this is not to be confused with "10 Things The STUDENT with Autism Wishes You Knew" by Ellen Notbohm. This is a different list of things. It is focused wider on children, not just students. -Ed.

1. I am first and foremost a child. There is more to me than a oneword description like "autistic." I know you know this. Why would you not? So, do not be concerned about calling me autistic even if others say it is wrong. It makes no difference to me if you say I am an autistic child or a child with autism. What you do about me is far more important than what you say about me, anyway. Please pay attention to my real problems and not ones made up by some adults. I already have enough problems as it is. There is no need to make up ones to add on.

If I have autism, then I am disabled by it. Saying that famous or unusual people like Einstein, or Mozart, or Van Gogh were autistic says autism is not a disability. Those people were not disabled. I am. You do not help me by pretending or telling others that I am not disabled, even if that makes you feel better. I am dependent on the public's support. Telling people that I am not disabled, only "just different", threatens my care. Please take autism seriously so others will, too.

2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery storemay be hell for me:

My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!
My sense of smell may be highly sensitive. The fish at the meatcounter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia..I can't sort it all out. I am dangerously nauseated.

Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with"tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.

3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*..." Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4. I am a concrete thinker. This means I interpret language literally. For example, to me it could mean that I think about concrete. It could also mean that I am made of concrete. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me "It's raining very hard."

You may use the word "like" or "as" to help me learn to compare, but do not exaggerate. If something is described "as cold as ice", it should really be that cold. Pick words carefully. "High as a kite" is not the same "high" as in being drunk, yet the expression is used to compare the two. "I play the shoe horn" is not funny to me. It is confusing. It is difficult to understand expressions that play on the different meanings of the same word. Idioms, puns, nuances, double entendres, inference, metaphors, allusions, hyperbole or exaggeration, sarcasm and much of other people's humor are lost on me. I have a sense of humor. I find different things funny.

5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.

Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.

6. Because language is so difficult for me, I am visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. Speech and language therapists and behavior specialists knowledgeable about autism can provide a range of learning aids tailored for me. Contact my local school district or disability agency to help you find them.

7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough. The autism needs fixing, not me. Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.

8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.

I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"

9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. It is my situation and my autism that needs to be fixed, not me.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.

10. If you are a family member, please love me unconditionally. Banish thoughts like, "If he would just.." and "Why can't she..." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you - I am worth it.
And finally, three words: Patience. Patience. Patience. Understandmy autism is a disability. Autism the disability is not some wonderful gift. It cripples. It confuses me when you say my suffering is a good thing I should like. But autism is treatable and I may be able overcome being disabled. To find out more about treatment and recovery contact one of these two sources:

. Autism Research Institute
. Generation Rescue

Look past what you may see as limitations.

All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.

This "Ten Things. . ." list by the Schafer Autism Report is derivative of one created by Ellen Notbohm, "Ten Things Every Child With Autism Wishes You Knew", which has been rewritten for publication here. Readers are encouraged to copy and distribute this updated list. for details. -editor.

Thursday, February 16, 2006

Business as usual.....

Just a little story about what went on in my house last night. It will serve to illustrate what food can do to Salamander's brain chemistry. It will also serve as an example of the type of stuff that goes on in our house on a rather frequent basis that may or may not be related to his autism at all, but that certainly serves to make life more, uhm, interesting...

Don't know yet why what I describe below happened, am just relating the what.

Salamander continues to be in one of his 'I won't touch any animal protein' phases, and I can see him loose weight (mainly muscle mass, and he doesn't have that much weight to spare), so I am always looking for other protein foods that I can get into him (as explained in previous posts, we can't do cow, goat or sheep products, can't do soy or eggs or peanuts either). I've been trying to get him to eat beans for ages, with little luck.

To my surprise when suggested he try some Pinto Beans with dinner last night, he agreed. He ate about 6 or 7 beans (I know, not a whole lot, but better than nothing), and ate most of a salad we had made for him (fishing out every piece of chicken and putting it aside, of course).
Within 45 minutes from finishing dinner (and the only new thing he had that night were the Pinto Beans), his ears turn bright red. He is getting this glazed look in his eyes, and he cannot keep his head up - it keeps drooping down and falling on the table.

We are working on home work by that time. We started with some regular and irregular verbs. He was a bit slow, but was able to get through the assignment without too much help (just a little redirection from me every once and a while, and reminding him to keep his head off the table LOL).

Then we're on to math - and math is definitely his strongest subject. To my surprise, this poor child can't get any of his math problems solved. He can't seem to retrieve the most basic math facts from his brain (could not figure out that 1 + 4 is 5, even when I gave him a bunch of crayons to use as props), can't remember the borrowing and carry over rules, can't remember all the little math tricks I've taught him for when you need to do additions/subtractions that bring you over 10 or under 10) - and I know that he has this stuff down, as even about an hour before dinner, we had been doing some kitchen math without any problems.
So we struggle through math home work, and I can see Salamander literally go further and further 'off line' (staring at the wall, withdrawing in himself, not hearing what is going on around him).

Bed time - he has been upstairs in his bed for maybe 30 minutes when we hear this horrendous scream. He comes streaking out of his bedroom, runs down the stairs into the living room - all the while continuing to screech - like he's terrified. When he calms down enough, he explains that he saw 'floating white things' in his bed room, moving out of his room into his brother's bed room (the kiddo obviously had had a really bad nightmare, almost at the hallucination level). Thing is though he hasn't had nightmares like this in a LOOOOOOONG time (he used to have these pretty much every 2 -3 nights throughout the night before we cleaned up his diet - can you say 'Sleep optional'??).

He did go back to sleep eventually and slept through, but this morning he was really struggling ('as slow as a slug in molasses'). He even said to me 'Mom, my eyes are open, but my brain is still not awake'.

So now the quest has started on what the heck in Pinto Beans (phenols?, oxalates?, salicylates? purines?, sulphur?) that could have caused a reaction like this. Poor Salamander has a big math test today at school. Hope his brain has come back 'on-line' by then, as otherwise he (and his teachers) will be in for a rough time.

As a side note, you should see what happens to Potatey, who is very much NT, very easy going, very caring, very protective in his own, almost 3-year old, way of his big brother, when he eats corn on the cob - he becomes a PSYCHO!! He will kick me, slap me, pinch me, bite me, torture the cat, find whatever means he can to aggrevate his older brother - not like him at all - all within about 1 - 2 hours from eating.

Welcome to 'business as usual'

Wednesday, February 15, 2006

Now HOW about THAT...

Aaarrrrgh, another commute from hell, but alas, I digress.

I got a somewhat frantic call from Mrs. K yesterday at around 3.45 pm (Mrs. K is Salamander's primary teacher in the After School Program he attends 3 afternoons/week). I thought that something bad had happened, the way she sounded. She started the conversation by saying 'I'm so sorry... it's been so long since we've seen Salamander at the program...And we're having a Valentine's Day party.... And I didn't get a chance to tell you about it, and now what do I do..'

Ooookaaaay... My response 'That's OK Mrs K, I packed some extra snacks in Salamander's backpack this morning in anticipation of any parties. Does he still have any of those snacks left? Then he can have those..'

Turns out that Salamander had scarved most of the snacks down at Morning Snack Time at school (that was NOT what I had intended, teaches me to be more specific in my instructions to Salamander as to what he can have when and how much. DUH!!).

So I asked that Salamander be put on the phone so I could talk to him.

Me: "Hi honey. Heard you're having a party. Do you have any of your special snacks left?'
Salamander: "I have a couple of cookies left. I ate the rest for Snack this morning.'
Me: "Well, it doesn't sound like there is anything at the party that you can have. How about you eat your REAL snack now then?"
Salamander: "OK mom."
Me: "I know it's hard when your friends are eating something you can't have and there isn't anything special just for you. But you know what happens...'
Salamander interjects, sounding impatiently: "MOM, can I PLEEEAAASE go back to my Legos now?"

[translation - Woman, I KNOW what happens when I eat stuff I can't tolerate. I get sick. Period. It's no big deal. I'm fine. Just let me go back to doing what I was doing]

To me, the awesomeness of this whole conversation lies in the fact that this situation was such a non-issue for him. I should have known that, but I let myself be pulled into the temporary hysteria of 'Oh my GOD. There is a party and Salamander doesn't have a special snack. Is he going to feel left out?'.

Nope, au contraire. He has totally accepted the fact that his foods, snacks, drinks etc. are different. and it's cool with him.

Tuesday, February 14, 2006

A little ray of sunshine...

OK, things are ever so slowly starting to fall in place again...

I am so glad I decided to take Salamander off the Albuterol. Although it resulted in a few terrifying coughing fits on Saturday and Sunday night (of which one resulted into a mad scramble into the bathroom just before the poor child vomited up the equivalent of a bucket full of goob), he slept through the night last night, and woke up much more 'together' than he has been for more than a week. While he was slow to wake up, his overall mood was pleasant, and (a big sign that he is 'on his way back' ) he tolerated Potatey in his bedroom, even allowed Potatey to touch his stuff without this resulting into a 'no holds barred' screeching match. He came down for breakfast dressed, somewhat :). He was missing a t-shirt and socks, but hey, he did start the process on his own as opposed to me having to stuff him into his clothes - and believe me, getting an almost 8 year old dressed whose limbs behave like they are made out of wood is not an easy feat. He even reacted excitedly when I told him that I had tucked some extra snacks into his school backpack in case there was a Valentine's Day party at school (we've been in and out of school so much for the past 3 weeks that, if there have been any party announcements distributed, I'm sure they are still sitting in a school locker somewhere) and told me that I was 'the best momma in the world'. He was a little disappointed when he realized that I didn't pack enough snacks for him to share with the whole class (sorry kiddo, but these special cookies and chocolates I got so you could have a 'treat' too are just a bit too expensive to feed to the masses), but he bounced back very quickly from his disappointment without me having to do too much redirecting.

Potatey too was excited about the prospect of a party. I did get his party announcement, but, after taking a good hard look at the classroom sign-up list for food and drink contributions, decided to send in a large collection of foods and snacks specifically for Potatey (SIGH - you gotta be kidding me, purple or red juice, purple or red cookies and purple or red cupcakes?? While I understand about wanting to stay with the Valentine's color scheme, do the teachers even realize the kind of junk that they'll be feeding these precious little preschoolers??? And then they wonder by 3.30 pm this afternoon, why the kids are so unruly..). Potatey got to pick out a couple of popsicles (made out of fruit, no sugar and colorants added, thank you very much) and excitedly clutched the bag in his little hands on the car trip into daycare (where we put them in the school freezer).

So in all, two kiddos in a good place this morning.

DH had a first doctor's appointment yesterday afternoon, and while nothing earth shattering was discovered during that first visit (it was more of a general check-up), the process of ferreting out what is going on has started. And more importantly, DH is committed to seeing this through all the way, a commitment that wasn't there in the past. I can only theorize as to what created that mind shift, but I think he got a 'good' scare last week, especially when realizing the implications of having a next episode under less fortunate circumstances, and the impact this whole mess is having on the boys (and me).

So the air is a little less turbulent today.... Our lives will never be smooth sailing (and part of me, as ever, is waiting, waiting, for disaster to strike again), but for now I'll enjoy that little bit of sunshine I am getting....

Sunday, February 12, 2006

And then MY bucket spilleth over...

Salamander is doing much, much better, thanks to almost an hour of walking and tunneling through snow (12+ inches here and Mother Nature ain't done yet), and a couple of doses of Activated Charcoal. In fact, he improved so much that when he asked to go across the street to visit one of his friends and do an art project with her, I let him go without too much worry. And he ended up having a great time and doing an amazing Splash Paint project.

But then at around 6 pm, the dreaded call came. School is cancelled for tomorrow. While in other families this may be reason for great rejoicing, when you have two working parents, it's a different game altogether. Thank goodness DH will be off the road for a while, and is around to take care of Salamander for part of the day. But as he does have medical appointments to keep in the afternoon, I had to once again kick into high gear to orchestrate the necessary care. I wish I could stay home tomorrow to have an extended period of time for just me and Salamander, the poor kiddo has had a rough weekend and needs some extra TLC - but after last week's shenanigans, I can't afford to miss any more time at work.

And as I am going through my mental back-up care list to figure out who I can call for what part of the afternoon tomorrow, it all just became too much. I stood in my kitchen staring at my stove, not able to move, not able to speak. DH, being unusually receptive [but then again, seeing your wife stand in the kitchen, frozen, with this wild look in her eyes and two fists buried in her hair ready to tear it out by the roots is a hard signal to miss], realized that I was about to completely loose it in front of the boys, and shepherded me out of the kitchen while announcing to the boys that 'Mommy is going to take a nice, long, hot shower.' And I literally bolted up the stairs, hid myself in the bathroom and cried.

After I calmed down a bit I did take that shower; for 30+ glorious minutes I just stood there, staring at the bathroom wall, letting the hot water run over my aching back. And by the time I came out, the boys had had their dinner, a wonderful neighbor was plowing out our driveway (our snowblower called it quits this afternoon) and DH had managed to arrange care for Salamander for the early part of the afternoon (so he doesn't have to take Salamander with him on his doctor's appointments). I had already developed a plan for the middle and late part of the afternoon, so once again the pieces of the puzzle were falling into place and things were starting to look up a bit. Now let's hope that Potatey's day care is open tomorrow...

As to DH's doctor's appointment tomorrow afternoon, I find myself oscillating between hope (that this will help us set our first steps on the road to an answer) and dread/cynicism (that, just like has happened so many times in the past with the boys, it'll be a waste of time and money as the practicioner will already have the prescription for Prozac or the like ready to go). All I can do is wait and see (not my strongest suit..).

God, how I wish I could just take a couple of days off from work, and find some time, even if only a couple of hours each day, that I can use to regain my emotional balance. But alas, no such thing as rest for the weary....

Thank God for 'heavy work'

Anybody with a sensory dysregulated child will know exactly what I mean by 'heavy work'...

Just as I was starting to pull my hair out and starting to wonder whether I would ever get a scrap of work done this afternoon, Potatey decided it was time for a nap and Salamander decided to he wanted to go outside to help DH clear out some snow.

It's now a little after 3 pm, Potatey is still napping, and Salamander's disposition is improving by leaps and bounds. Oh the joys of an intense Sensory Diet with lots and lots of Heavy Work.

[then of course I got stuck with a serious case of Writer's Block, so I am going to make myself a cup of coffee and then give it another go]

And the roller coaster continues ...

Well, I did get some work done yesterday.... I am going to get back on it in the next 15 minutes or so, and see how far I get by days' end.

We're in Blizzard conditions right now (little after 12 pm) and the boys are going stir crazy. DH and I resorted to using the TV as baby sitter for an hour or so (not proud of it, but after having spent since 8.30 am this morning breaking up scuffles about every 5 seconds and constantly having to redirect Salamander to not have these scuffles turn violent, we needed a break), and we plopped in the Madagascar DVD. So hopefully that'll keep the boys out of each others 'hair' for a bit.

I decided to take Salamander off the Albuterol last night. The stuff is just not agreeing with him, and especially after reading the product insert a little more carefully and seeing hyperactivity, palpitations, nervousness, agitation, and aggressive behavior listed (yes, yes, yes, yes and yes) as side effects and adverse events, the cost/benefit ratio is just not falling out favorably - we'll just have to ride out the reminants of the bronchial irritation. Unfortunately, that did result in him coughing a lot during the night, which then impaired the quality of his sleep, which then impacted his mood, which then reduced his ability to tolerate being cooped up in the house with other members of the family, etc., etc. So I don't know yet if I made the right decision. I gave him a bath in eucalyptus oil and that seems to help with the coughing. We'll see how the rest of the day goes. I will need to find a different bronchial dilator medication though - a dear friend recommended Xopenex...

DH and I commented to each other that Salamander is basically back to the level of 'having a really off weekend like we used to see before we started Project Chilld'. It's hard to explain exactly what we mean by that - but it describes a combination of moodiness, rigidness, hyper emotional behavior (crying at the drop of a hat), intolerant of others being in the same space, wanting everything his way, being contrary, constantly yelling 'No', ready to pounce on Potatey if the poor little guy even looks at one of Salamander's 'price possessions', the likes of which we really haven't seen since we started the auditory integration/occupational therapy program at Project Chilld. Suffice to say that Salamander realizes that something is 'off' and that it has been just as hard for him as it has been on all of us.

I am sure that once whatever wacky biochemical molecules are messing Salamander up clear his system, he'll bounce back. But it's been hard emotionally to see Salamander struggle like this, and I have had to fall back into my role of family referee (as unfortunately DH doesn't seem to be able to keep his cool and roll with the punches when Salamander is like this - I have three kids right now, LOL, and Potatey appears to be the most mature of them all).

Well, 'all is quiet on the Family Room front', so I am going to take advantage of this and get some work done...

P.S. I started reading Dr. Amy Yasko's book 'Genetic ByPass - Using Nutrition to Bypass Genetic Mutations [in the Methylation Cycles]' last night. Oy, heavy stuff. The book starts by describing relatively common mutations found in the DNA that control various enzymes in the Methylation Cycles. So far I have only been able to get through 2 Chapters (before my brain started to hurt LOL), but it looks like Salamander definitely carries mutations that control the activity of the COMT and CBS enzymes... SIGH, now if only I was independently wealthy, then I would order right now the necessary genetic testing (for Potatey too, as these mutations are inherited through the parental DNA) to really tease this out...

Saturday, February 11, 2006

And exactly whom was I kidding here???

By thinking I could actually get a scrap of work done from home???

First, we have a major Nor' Easter rolling in, and the associated barometric pressure changes are usually enough to get Salamander off balance.

Then compound that with the fact that Albuterol tends to seriously mess up Salamander's brain chemistry (I totally forgot, it's been over a year since we've had to use Albuterol to deal with bronchial spasms) - he is short tempered, wants everything right now this minute, throws a foot stomping meltdown every time his needs are not met immediately, and cannot bear to have any other human being (except Mom) within a 2 mile radius. Plus his receptive language is significantly impaired today, and he is not able to maintain eye contact (is looking at people and things from the corner of his eye - he hasn't done that in at least 4 months).

So far I've had to diffuse 5 tantrums, break up 4 fisty cuffs between Salamander and Potatey, and have had exactly 4 minutes of solid actual work time. And it is not even 11.30 am yet, and Salamander has only been up for 3 hours (of which 45 minutes were spent at the breakfast table eating his breakfast one itty bitty little bite at a time, needing to be reminded to actually eat about every 1 or 2 minutes as he was spacing out big time).

The whole gang just went up to the attic to get some much needed rumpus time, but so far I've already heard 3 'from the top of your lungs' screeching sessions between Salamander and Potatey. I am NOT going up to referee. DH is with them, he'll have to figure it out (and come to understand that being with the two of them when Salamander is like this involves more than sitting on the floor waiting for situations to get out of hand, and then being reactive. You gotta watch, pre-empt and redirect, because once Salamander hits mental overload it's too late (and admittingly his mental buffer is very, very small and easily overloaded today).

I totally understand that DH is probably not feeling too great today, and although I would love to just throw in the towel on this work project and get up to the attic to actively help Salamander work through whatever has disregulated him today, I need to do what I can to get this project done (and actually keep my job).

I just can't win.....


Friday, February 10, 2006

Just when you think....

that you have been slapped around by the Great Spirit in the Sky enough for one week?? Just wait, you ain't seen nothing yet ....

You know how in my blog intro I promise you 'the Good, the Bad and the Ugly'?? Well, you've had glimpses of The Good (just look at those little faces), you've read a bit about The Bad, and now most definitely, it is time for THE UGLY.

This past Sunday, I finally started to feel halfway human again. And of course after I spent about an hour or so bragging to my parents about how well (relatively speaking, as they know what it used to be like) the boys, especially Salamander, had been doing (yes, we had the emotional upheavals last week as Salamander was resuming Listening Therapy/Occupational Therapy through Project CHILLD, and while it is always hard to see some negative issues come back temporarily that you thought had disappeared, overall Salamander has been doing well), that perverse Great Spirit or All-Knowing-Being 'upstairs' decided that it was time to teach me another lesson..

So over the course of Sunday afternoon, Salamander's general state of being started to detoriate somewhat. The alarm bells should have gone off in my head - he had gone back to his periodic 'I'm am NOT eating anything that moo'ed, baah'ed, clucked or gobbled in a past life' (aka total animal protein avoidance mode) about a week prior with the associated weight loss, and that is usually a signal for 'things to come'. Then over the course of the weekend, he had gotten constipated, and constipation usually will put him in a funk. So Mommy decided to help Mother Nature along a little bit.

I don't really know (yet) what the H#LL happened - whether I was a bit too aggressive in helping Mother Nature along, or whether coincidentally (although I don't believe in coincidence anymore with anything that is going on with Salamander..) he went into a major detox/metabolic crisis, but things got ugly. Un Sunday eve, Salamander did 'go' - three times within as many hours (unusual for him), and very large amounts too (and I'll leave it at that), so the poor kiddo was definitely plugged up.

I had however not anticipated the events that were to take place the next morning. When I walked into Salamander's room on Monday morning to get him up and ready for school, I was greeted by a child with 101F Fever, who looked like a Vampire in Training (stark white face, red swollen eyes, bright red puffy lips, spaced out look in the eyes). So obviously he wasn't going to go anywhere that day. So I did my usual mad scramble for when I need to stay home from work with a sick child, and took it from there. Salamander spent most of the day feeling completely miserable (he kind of hung in a chair, didn't want to talk, didn't want to play, all he wanted to do was watch TV), and his fever just wouldn't come down (I don't like to suppress fevers, unless we go over 103 F). Even an Epsom Salt bath didn't really help him. And over the course of the day, his eyes and face became more swollen. I took some pictures, just so I can show his docs what he looked like, as I am worried about what happened here, and none of my usual 'tricks' seemed to help him much this time.

We seem to go through a cycle like this every 2 - 3 months or so, and I just don't know whether we're dealing with detox (a good thing) or some type of metabolic crisis (not good). I've had concerns regarding Salamander and the potential for a metabolic/mitrochondrial disorder for a long time, and considering this latest event, I need to get more serious about ferreting out what is going on (some of his labs are definitely fluky, but not fluky 'enough' to yell metabolic or mitochondrial disorder - he does have a lot of the 'soft signs' though). What happens is that during his 'good' phases, I put any investigations on the backburner (only so many hours in the day...) and I kinda forget about my concerns, and then WHAMMO, we're in the next episode. I did call the test laboratories where we do most of Salamander's testing to get a few extra test kits, as I want to be prepared to collect samples of whatever I can collect when the next episode hits (as this WILL happen again..).

Finally, late on Monday night, I ran out to the CVS to get activated charcoal (yes, I know, I should have added THAT to my toolkit a long time ago) and I must say that within 35 minutes of administering the first dose, Salamander was 'on his way back' and he continued to improve with each subsequent dose.

He had a good night of sleep, but still ran a 100 F fever on Tuesday morning when he woke up, so I kept him home from school that day as well. He continued to improve throughout the day (still looked pretty awful), but over the course of Tuesday, he developed a cough that became progressively worse into the evening (was his immune system 'down' and therefore he caught a bug? Fluky, crazy histamine response? Haven't figured it all out yet...). I put him back on Albuteral to help with the cough (no drainage from sinuses though - just a really dry, nervous, agitated type of cough). He continued to improve over the course of Wednesday, but the cough is still there. The Albuteral is helping a bit, so we'll just have to ride this one out.

Needless to say, I had missed quite a bit of work and ended up, once again, way behind on my projects. On Wednesday, I ended up having to leave early as well to take Salamander to his next Listening Therapy/OT appointment, but overall I felt that I was slowly regaining some sense of 'control' and was actually looking forward to being able to spend a whole day at work on Thursday (to make some solid progress on one of my projects and to clean-up the mess that I had left for my poor co-workers and my incredibly patient boss to deal with).

Such naivete....

At around 5.15. pm, I received a call on my cell phone (while I was working with Salamander during the Listening Therapy session) from a lady with a Spanish accent, who informed me that DH had had another one of his migraines followed by neurological impairments episodes and that he had been carted off to a hospital somewhere in Puerto Rico. I won't get into all the gory details here, but suffice to say that this is the 4th such episode in about 7 or 8 months and that it is now more than time to get serious about investigating what is causing this. So I had a 'chat' with DH in which I strongly 'encouraged' him to finally have all of this checked out (you get my drift here...).
Fact is that I am stretched awfully thin already with managing the increasingly complex situations for the boys, and I just cannot take on management of yet another complex medical case (and stay somewhat sane in the process. Hey, quiet down there in the peanut gallery).

DH made it back home yesterday morning, and I must say, he has stepped up to the plate and got the ball rolling. I have no idea yet where this particular 'quest for a medical answer' is going to lead us, I have my suspicions which I won't voice just yet. We'll just have to see what, if any, medical answers there are and then take it from there. Needless to say that I think this is way more serious than 'just a migraine'.

So my Thursday work schedule got pretty messed up too. A work buddy of mine even asked me (after I had spilled my guts) 1) why I did even bother to come to work (wellll ya' know, I do kinda really need this job..), and 2) how come I still had a sense of humor after all this shit (well, I am to damn numb to cry, I can't run screaming for the hills, and falling apart is not exactly an option either, so there you go..). I will have to work most of the weekend, just to catch up a bit (which I will do from home, no way I am leaving DH without adult supervision at this point). Sigh.

I will admit that I had some really, really, really bad moments on Wednesday night (especially as my mind was going down the 'what if DH has this next episode while he is driving or when medical help is not readily available). Thank God that I have a perverse sense of humor that will kick in full gear under the most intense of circumstances (I'm the kind of person who'd be cracking jokes about the guillotine as my head is about to lopped off..) and Thank God that I have found an awesome group of cyberspace buddies that I can contact to scream, rave and rant at (Thanks gals for being there for me, I am convinced it kept me from having to take a one-way trip to the Nut House).

Thank God It's Friday. I have a shitload of stuff to get done (work and personal wise), but I'll make my list tomorrow morning and just work my way down and see how far I get. I really need time next week to get prepared for my and the boys' entry into a clinical study that is being conducted by Dr. Jacqueline McCandless to study the benefits of TransDermal Low Dose Naltrexone in're-setting' screwed up immune systems (will try to blog more about that too, within limits of course); it involves the completion of reams of paperwork (of course), as well as blood work (that'll be fun!!), but I also have this large work project that I MUST get done. Business as usual!!

But can you say ... cough.. TRAINWRECK?????

Friday, February 03, 2006

My two Pressssciousssss

Well, daddy sits on the couch like this....

Am I not the saddest little boy you ever saw????

Country booooy... Take me hooome

Look Mom!!! No teeth!!

Just too worn out...

Haven't written much lately.... Well, that's not correct. I have written quite a bit actually, but none of it is entirely :) suitable for publication...

It's been a rough week. I'm tired, frustrated, moody, angry, disappointed, confused, exhausted, probably major league PMS-ing. I haven't slept well in over a week and in the morning I can't seem to drag my sorry ass out of bed. Depressed? Who knows. SAD? Again, who knows. The fact that it's been raining for most of the week certainly isn't helping (and what's up with these moronic Boston drivers anyway? Did y'all collectively forget how to drive after the first rain drop falls??? Sjeesh - my commute ain't no picnic to start with, but man, it's been a 1.5 hour fucking Russian Roulette ordeal every single morning and eve for at least 2 weeks now. If you're not comfortable driving in the rain or snow, just stay the fuck out of my way, so i can get to where I need to go).

Well, as you can tell, I'm in quite a mood. I am going to stop before I really let loose. I think I'll post some more pictures of the boys...