Monday, July 31, 2006

happy photos, absent video

We purchased a video camera when Jacob was 18 months old -- I was pregnant with Zoo Boy at the time and we just knew that we would want to be capturing both of our boys growing up. I had lots of 30-second snippets on my digital camera, and thought how great it would be to get larger chunks of my kids' lives on film for posterity.

However, it didn't really work out like I thought. While we DID bring the video camera out for special occassions (well, for at least a little while each time), we just didn't grab it very often during regular life. Because who wants to capture the bad moments your kid has? It seemed whenever I did pick up the camera to film, something would happen, Jacob would have a meltdown (and I didn't want THAT presevered forever!), or I would have to put down the camera to try to help him work through something. I felt a little guilty when, beginning work with our RDI consultant in the spring of 2005, she asked for some footage of him from before we started RDI (we started on our own for awhile before we hooked up with our consultant, so he was already looking pretty good by the time she met him). We dug around, but couldn't locate much of anything. We finally did come across a video of Jacob's 3rd birthday, and it became glaringly apparent why we didn't film much back then, even when there weren't emotional fireworks going off.

Imagine if you will an hour's worth of video footage, where the first half hour is comprised of him taking a card out of an envelope, opening it, closing it, putting it back in the envelope, and repeating. Stuff goes on around him while he does this (because the other kids there weren't going to just sit there watching him work the envelopefor an hour), and he's oblivious to it all. Finally I get him to actually open the gift the card came with. It was a pinwheel. The next half hour is Jacob spinning the pinwheel. We turned the camera off after that. Actually, I think my brother fell asleep while filming it....

Our photos are all of a smiling, happy boy. I DO remember him being happy quite a bit. I also remember the opposite quite a bit, but those photos got deleted from the card before they ever made it to the computer in most cases. There aren't many photos of him from the time of The Storm (there just wasn't a single happy moment for him that we felt the desire to capture). Before and after that there are plenty, but even that was in bits and spurts. A dozen at a time from a particularly happy moment.

I'm trying to decide if I regret not having filmed more, captured more of that classic Autistic behavior, documented more of those less-than-ideal moments, kept those disturbing images of faces twisted in dispair. Am I robbing my son of an accurate depiction of his youngest years? How will he feel when he's an adult and looks back on the photos I do have of him from this time? I guess only time will tell. They're gone now, those moments of extreme distress and deep despair and things that gave me nightmares. The challenges we're left with make for much less dramatic footage. The video camera is back on again fairly regularly, but I don't think any of our current footage is going to make it past a documentary director's cutting room floor. Posted by Picasa

Sunday, July 30, 2006

the gf/cf disaster

Something I've failed to mention so far in all of this is Jacob's problem with food. It's not that the kid doesn't like to eat, he just won't try anything new. He picked at food until he was about 18 months old, and at that point, what he'd already been willing to eat he started eating in enough quantity to sustain his life, and those things that he hadn't tried yet just never got tried.

So when I first read about how a lot of kids with Autism have problems eating gluten (wheat protein) and casein (dairy protein), the whole thing sounded really believable to me. These kids supposedly self-limit their diet to those things that contain gluten and casein. Jacob's mainstay was (still is!) cheese and crackers (more specifically, wispride cheddar cheese spread on red oval mini stoned wheat thins). Other favorites were english muffins with cream cheese and double cheeseburgers from McDonalds. (I will post seperately at some point about McDonalds, the savior of my child.) Hm gluten and dairy. The gluten in particular was supposed to cause an opiod-like substance in these kids that caused them to become addicted to it and crave it. And because the kids were sensitive to it, the substance crossed through their "leaky gut" and caused symptoms that appeared to be Autism.

I got excited. This made sense to me -- maybe this was MY kid. The websites and passionate e-group posts certainly led me to believe that this was an extremely common cause of Autism that most people don't even think about. Could it be, that just by eliminating these foods from Jacob's diet, we could make his Autism dissappear? Talk about building up hope! I dedicated the next month to devouring every bit of information I could get on the gf/cf diet. I made shopping lists, drove to specialty grocery stores an hour away for supplies, joined every e-group I could find, and gave away all of our gluten- and casein-containing foods, committing our entire family to go gf/cf (and don't think The Map Man wasn't thrilled about that! hee hee).

I was more than a little concerned at the fact that Jacob ate so few foods anyway (about a dozen), and most of them contained gluten or casein. Pretty much we were going to be left with apples, bananas, and corn chips as the only foods he could eat. I posted my concerns on the e-groups and got a rousing round of support, with advice on substitute foods. And everyone -- and I mean EVERYONE -- said that he would soon be off his addiction and willing to try new foods, so for the time being he'd be fine on apples, bananas and corn chips. When he was hungry enough, he would eat something else. He would try the substitutes. He would try new foods. No child is going to starve himself to death. HE WILL EAT.

(I also had a few emails warning me that ASD kids sometimes have problems with salicylites, which apples and bananas are high in, and some kids with gluten addictions will then become addicted to corn so the corn chips might have to be eliminated too. That just made me nuts, so I deleted those so I didn't have to look at them!)

So we did it. When he asked for something he was used to having, we offered him a substitute. When he agreed to try the substitute, he'd burst into tears, and then NEVER touch that food again (ever -- even after we abandoned the diet and tried to get him to eat the original). Pretty quickly we stopped trying substitutes because they obviously weren't working and were cutting his list of foods that he would eat in half. Telling him no to something he wanted was easier -- he was upset, but at least we were preserving a few items that he was willing to eat. So he started eating corn chips. The only thing he'd eat was corn chips. Two weeks later, he was still eating only corn chips. Every day I wrote posts of worry and woe on the e-groups, every day I received support and assurance that it was OK, it wouldn't hurt him, he WOULD eat. So I kept sticking it out, although inside I was dying a little every moment of every day.

Two weeks to the day I started withholding gluten and casein, Jacob collapsed. In a weak little voice he begged "white chips" (corn chips), as this was the only food he knew I'd let him have. That was it -- I immediately drove him to the nearest McDonald's and bought him a double cheeseburger. As I handed it to him, I expected him to devour it -- given that he was supposedly an addict that had been deprived of his "drug" for 2 weeks. He examined the burger the way he always does with his food, and ate it in polite little bites as usual.

So that was our attempt at gf/cf diet. Everyone tried to convince me that if I cut out gluten first and THEN casein or the other way around, it would have gone smoother. But there was really no way of doing that anyway, the foods he ate were a combination of both. I really don't think that Jacob has a problem with gluten or casein, so I see no reason to attempt it again. I guess it was worth a shot once. But I truly believe that he WOULD starve to death rather than try something new.

From that day forward, I vowed to stop worrying about his diet (a vow I didn't really keep, as a few months ago I had a rather severe worry about it, but I'm sure I'll talk more about that later). I let him eat what he wanted, gave him the opportunity to try new things but didn't push it with him. I was just happy that he was eating again and healthy! And he HAS added a few new things to his repertoir since then, and he's back up to about a dozen foods that he'll eat again. In the spring of 2005, he tried and discovered he likes Froot Loops, and now eats them for snack most afternoons. Soon thereafter, he discovered that he likes chocolate and will now eat hershey bars and m&ms. (OK, not exactly health food, but at least something different.) And he's become a big fan of yellow cake with just about any color frosting -- we've been hiding rice protein powder and ground flax seed in our cake mixes, so that's been a good addition. Oh, and just this spring, he discovered that he has an absolute passion for Marshmallow Peeps. So much so that we've been using them lately to produce some actual potty training successes, so that's very exciting.

Oh, yeah, potty training. I haven't talked about that yet either. I've still got SO much left to tell.... With any luck, by the time I finally get around to writing about it, he'll actually BE potty trained! (I can dream, right?) Posted by Picasa


As a big fan of Classical Homeopathy, having used it very successfully for a variety of problems with both my animals and my family, I naturally turned to Homeopathy the minute I suspected Autism. Actually, that's not true, I had already started working with an on-line Homeopath (located in India) before I even realized what the problem was. I began working with her during The Storm, when Jacob was in the midst of his misery. The consitutional remedy she started him on had an incredible effect, and was able to pull him out of the depths of despair almost instantly. Unfortunately, the effects did not stick with him through continued stress, so we had to mess around with the potency and method of administration for a couple of months before we saw lasting effects. I think the arrival of the puppy helped to stabilize his environment enough to allow the remedy to have it's full, lasting effect.

Homeopathy is a holistic alternative to Allopathy (modern medicine). Homeopathy uses diluted and potentized remedies made from natural substances. (The remedies are, in fact, so diluted that there are no actual molecules of the original substance remaining -- it is the energy from the substance that works on the patient.) Prescribing works on the "law of similars", so a substance that produces certain symptoms can be turned into a remedy to treat an illness/disorder that produces those symtpoms. Prescribing is very specific to the patient, and the patient's emotional state is taken into equal consideration with their physical condition.

Classical Homeopathy differs from Sequential Homeopathy (which seems to be the most popular type of Homeopathy for Autism treatment) because it looks for the one perfect-fit remedy that will return the child to their normal state (normal for them), as opposed to a series of set remedies to treat various ailment stages. Most health food stores carry lower potency single remedies, and also combination remedies (the use of which is yet another type of Homeopathy), that can be helpful for first-aid type treatment. For constitutional treatment and treatment of chronic conditions, higher potency remedies can be purchase at on-line Homeopathic pharmacies and directly from some Homeopaths -- these higher potencies should only be used under the supervision of a professional Homeopath.

Jacob's remedy is in the form of small pellets that he lets dissolve in his mouth. Homeopathic remedies also come in liquid (tincture) form and in fast-dissolving tablets.

We give Jacob a dose of his constitutional remedy whenever he has a series of meltdowns for no apparent reason or a string of extreme emotional reactions to things that he should be able to handle (or, as we refer to it, when he's acting crazy). Initially, we were giving him a dose several times a week, then it was every couple weeks or so, then about once a month. At this point we go months between needing to re-dose him. He has learned to ask for it (he calls it "medicine") when he feels like he needs it.

We also use Homeopathic remedies when our kids (or oursleves) are sick. Jacob has never had any "regular" medicine of any sort (well, he did have one dose of Tylenol once as an infant, which he immediately vomitted up), and has never been to a Pediatrician for illness. We believe that keeping him away from western medicines has helped him to develop a strong immune system -- it certainly seems to be working, he is very rarely sick, and when he is, he has incredible self-healing ability.

Unfortunately, we stopped using the Homeopath that was so helpful for Jacob. She did not support our decision to pursue a diagnosis of Autism -- she said that it didn't matter what the reason for his problems were, all that mattered was that we used the right remedy. I don't want to underplay the benefits he's received from Homeopathy -- emotionally it has been extremely helpful, and it has really helped to keep him on even ground with regards to that. But I just don't see it as being able to help at all to remediate the core deficits of Autism. And here's why: the "normal" state for Jacob's physical body to be in IS with an autistic brain. I feel that we have to physically change the structure of his brain to bring about changes. And I don't see how Homeopathy can help with that.

Our Homeopath did not agree with us, and we parted ways. But she was a great help to us during our worst time, and succesfully treated both Jacob's extreme emotional problems, and my own feelings of inadequacy and doubt in myself at the same time by finding the right remedy for me as well. We'll always be grateful to her for that. Posted by Picasa

the big "D"

My time line of events is starting to break down. Seems to me that in order for some of our history to make sense, some of the stuff that follows needs to come first. Otherwise it's just a boring autobiographical film that occassionally has a few good points that would have made more sense if some good editor came by and chopped it up and rearranged it a bit. In any case, I'll allow my brain to edit my own memory and try to clump the pieces into legible (hopefully interesting) passages.

For now I want to talk about Jacob's official Diagnosis. We didn't get this until January of 2004, and a lot of stuff happened with us the summer and fall of 2003 that impacted our journey. But I'll get back to that when it makes sense to. A lot of that time we spent discussing whether or not we even WANTED a diagnosis. I mean, did it really matter? We knew what was going on with Jacob, we didn't feel the need for him to be examined with a fine tooth comb by degree-holding physicians, most of whom employed methods of treatment that appalled us, just to be smacked with a bright red "A" for Autism on his shirt.

Our family was one motivating factor. Nobody wanted to talk about this without a stamp of approval from an MD. Preferably an MD with a lot of other letters behind their name and lots of offical-looking pieces of stamped paper on their office walls. The Map Man's side of the family knew something was up, but didn't dare (and never did until we volunteered the info!) ask what it was. My family was just plain in denial that anything was happening. Both sides think I'm a little "out there" anyway, so aren't exactly likely to take anything I say too seriously unless it's backed up by good, solid, conventional support.

We also were having trouble getting therapists to talk to us. The first question out of anyone's mouth was "what's his diagnosis?" Why did that matter so much? Couldn't an OT or an SLP just do their own evaluation and tell me how THEY could help my individual son without someone else telling them what was clinically wrong with him? Everyone suggested calling them back after we got a diagnosis, usually with a few references as to where we could go to get one.

But ultimately it was an attempt to save our own sanity that goaded us into doing something about it. After being told repeatedly by just about everyone that "all kids are different" and having our Pediatrician do everything but laugh in our faces at our concerns, we were starting to feel like everyone thought we were looking for problems where there weren't any. What was glaringly apparent to us somehow seemed to be missed on everyone else in the world. So to make sure we weren't just in need of some serious psychological support, we sought a diagnosis for Jacob.

Now, you would think trying to have a kid evaluated for Autism -- AUTISM for gads sake! -- would be met with a bit of urgency. Hadn't I just read pretty much everywere how VITAL "early intervention" was? How if you didn't do something right away, your child would be doomed for the rest of their lives? (Even in those early days, we didn't buy it, but that's the sort of frenzy everyone seemed to want to whip us up into.) Yet, all of the places that I had been refered to for Autism evaluation had waiting lists of insane lengths -- 18 months was the best offer -- 3 years was the most ridiculous. My boy had just turned 3, I certainly wasn't willing to wait another lifetime for him before he even qualified for any services! Everyone kept refering me to the "Birth to 3"program but, hello, he was 3 already, they wouldn't even take my phone calls. Insanity! We even, in desperation, called the school district (a pretty huge leap for us, considering that I had every intention of homeschooling my kids and would have prefered that the school district didn't even know we existed). I got the distinct impression that they, too, were procrastination experts, so decided if we were going to get this thing done, we were going to have to take the bull by the horns.

Just about that time, a nice child development grad student from the local university sent me a letter asking for our participation in her PhD research looking at the effect of parental interaction on a child's spoken language skills. I called her immediately and scheduled an appointment the following week. She arrived with her box of tricks and Jacob and I played for a while and then she did some language testing with him while I looked on. When she was done, she folded up her test book and, looking grave, gently told me that she would be unable to use Jacob and I in her study, as she believed that he was not a typically developing child. She reccommended that we see our Pediatrician right away, and gave me a list of things to mention to him that would hopefully set the wheels in motion in the right direction for us. The Map Man and I did a happy dance after she left, thinking NOW we were on to something! And look, we're probably not completely insane! An almost-PhD said so!

So we made an appointment with our Pediatrician. He walked into the room with a chip on his shoulder, as was pretty much the norm for him and I since he constantly insisted we should vaccinate my kids for everything under the sun, and I constantly wouldn't let him. (The only reason we were still with him was because no other Pediatrician in the area wanted a non-vaccinating family as clients.) With my first question, he shot me one of his standard "you are the world's most paranoid parents" responses, and I folded up my list of questions and apologized for wasting his time, and left his office forever.

That night at home we searched our HMOs database of phsyicians looking for the closest Developmental Pediatrician. Surprisingly, we found one just an hour from us, and I was delighted when I called the next day to find that she was accepting new patients. When I asked about a wait list for testing for Autism, the receptionist apologized that her firt opening wasn't for 6 weeks. SIX WEEKS!!!! Another happy dance of joy in our house that night!

The actual diagnosis was of course anti-climactic. She told us what we already knew, Jacob got his ASD diagnosis, and reccommended a laundry list of therapies including not less than 40 hours of ABA weekly, with a heavy dose of Language Therapy and OT with a Sensory Integration Specialist. She wrote a letter to our school system and convinced us that the only way to get anybody to pay for anything was to go the school route. We cringed, but sent the letter. And that's a whole 'nother chapter of our story. Posted by Picasa

therapy soup

One of the most challenging aspects of choosing the path we should take on the road to Autism Remediation was weeding through the million and one (or so it seemed) treatment options available. There was no way I could read about everything available all at once, so I took it one step at a time, starting with what I already knew and was comfortable with (Homeopathy), while reading and learning about diet modifications (because that made sense to me and was reportedly enormously helpful for a lot of families). While starting down those roads (which I'll post about seperately, soon), I read about the two most popular (in this area) therapies for Autism Intervention -- ABA and Son-Rise.

ABA was everywhere or so it seemed. I read glowing reports about it on parent's websites and blogs. So I went into reading about it with a very open, optomistic mind. It didn't take long for that to vanish. Everything I read sounded vaguely familiar, and about a week after I started my reading, it dawned on me why -- it was almost identical to how I train dogs! You give them a signal to do a task, you reward them for making an effort then show them how to do it correctly, you repeat until they get it right, making the prerequisites for the rewards higher as you go along, until you have the behavior you want on cue. Makes for very nice, obedient little dogs. Great dog training method! But I didn't want an obedient SON. I want a free-thinking son, with his own ideas and the ability to question what he is told and search for the truth, to think outside the box, to express creativity and be able to function seemlessly in a dynamic world. I just could not see how ABA could offer that hope. Even the name was off-putting to me -- BEHAVIOR modification. I didn't want to modify Jacob's behavior. I wanted to rewire his brain. If his brain functioned more typically, then he would behave more typically. Didn't that make more sense?

I looked at Son-Rise next, which may have had some merit, but I was so put off by the religious undertones (and sometimes overt overtones) that I didn't make it far with my reading. As far as I'm concerned, everyone has a right to believe whatever they want to believe, but they don't have the right to force it down my throat, and I felt that choking feeling when I read the Son-Rise information (and even more so when I read stories of parent's individual experiences with it).

So I was a little less open-minded when I picked up Stanley Greenspan's bookabout his Floortime method. I was pleasantly surprised to find that he did not talk about behavior modification (hooray!), and nothing in his book reminded me of dog training. But it seemed to swing too far to the other extreme. In some ways it was similar to what we had already discovered -- if we wanted to be a part of Jacob's world, we needed to get down on his level and join in on his activities. But it just didn't seem like enough. We were already DOING the sorts of things he suggested, and I didn't see how that could possibly cause the sorts of dramatic change in his neural pathways that we needed to truly remediate Autism. Certainly it was a better approach for us than ABA, but just not enough.

I was discouraged, and decided to focus my efforts on trying to find therapists for Sensory Integration and Language, since both seemed to be a bigger problem than Autism deficits at that point in time. I also discovered Cranio-Sacral Therapy along the way (which I'll also talk about in a seperate post).

We toyed with getting a DAN! doctor, a thought that we occasionally toy with still, but it was just a matter of using our resources on what we thought would benefit Jacob most. As an unvaccinated child, who had been autistic from birth, we found it unlikely that it was a mercury problem causing Jacob's autism. Add in the fact that there is known Autism in my family anyway (not that I knew before I had Jacob! But it sure came out after his diangosis!), and the fact that both The Map Man and I are fairly certain that he (The Map Man) is on the Autism Spectrum himself, it seems pretty likely to us that we're talking about genetics rather than environmental factors in our particular case. So we shyed away from the biomedical approach.

It was almost another year before I found out about RDI (long after I stopped trying to find a remediation program -- a family member told me about it, as she had just started using it with her Autistic son). I'm not sure how I missed it in my original searchings -- maybe I just got disgusted and gave up on Autism Therapies before I would have naturally come across it. But from the moment I started reading about it, I was jumping up and down and yelling "YES! THIS IS IT!!!!" I was right.

But first, more about the other things we tried, and how we came to get Jacob's official diagnosis. Posted by Picasa

to treat or not to treat

At the time, it never occured to me NOT to address Jacob's Autism. The poor guy was just SO not comfortable with himself, the thought of leaving him to flounder and figure it all out on his own never entered my mind. But recently I've been made aware of a group of parents who have decided to just "accept" their children's Autism as a part of who they are and not to treat it. While I'm in complete disagreement with this stance, I respect a parent's right to make their own decisions for their own child. But while we're on the topic, I figured I'd explain why I think it's important to try to remediate Autism:

My child's brain is not functioning the way it was intended to. The human brain was designed to develop following certain pathways, and his brain's development has taken a detour. The result has nothing to do with his personality and individuality -- it is an improperly functioning brain. I see my job as parent to help get that brain back on the right path so that he can fully realize all of his own individuality. Heck, one of the big deficits of Autism is an impairment in Self-Awareness. I want him to have his own likes and dislikes and understand what they are! I want him to have a sense of who he is, as he's an amazingly wonderful person with so much uniqueness -- none of which is a part of Autism. Making him less Autistic will not change who he is or make him less of a person, it will allow him to truly become who he inherently is.

I feel the same way about this as I would if he were born with an arm that did not function properly. If there was a way to help him learn to use that arm the way it was intended, I would move heaven and earth to help him do it.

I accept my son. I do not accept that he has to learn to live with Autism for the rest of his life. He is NOT Autism. He has a roadblock that I can help him remove, and by jove, I'm gonna remove it.

If that makes me a "cureist" (which seems to be the blanket term for anyone who actually dares to try to intervene with the Autism process, despite the fact that many of us don't think it's possible to actually cure Autism), so be it. Call me whatever you want. I just want what any parent wants for any child -- that my child has the same opportunities to choose what he wants to do with his life. And the ability to choose it. Posted by Picasa

Saturday, July 29, 2006

jumping ahead -- RDI

Before I start slogging through all of the treatment options that we explored, some of which we tried, some that we discarded before even reading too much about them, I wanted to jump ahead a year and say that we found what we think is THE answer to Autism Remediation. RDI (Relationship Development Intervention) was what we ultimately decided on for Jacob. We are currently almost 2 years into our RDI program, and the progress has been amazing. You can find a link to the Connections Center webpage, which is the RDI Homepage, under my links section to the right of these posts, or just go to . I will have SO much more to say about RDI as we move along, but given that a year passed between when we realized Jacob had Autism and when we discovered RDI, I didn't want to keep anyone who happened to be reading this hoping to find the answer for their own child in suspense any longer than neccessary, as it could be weeks before RDI comes up in the history of our journey.

Now, back to our regularly scheduled rehashing of the past.... Posted by Picasa

what Autism is NOT

Kids with Autism often have one or more co-occuring conditions. These are not a part of Autism itself, but they are often significant problems (sometimes even more significant than the autism itself), and they can interfere with Autism remediation efforts. Some of these co-occuring conditions are Sensory Processing Disorders, Food (or other) Allergies, "Leaky Gut" (food intolerances), Apraxia/Dyspraxia, Hyperlexia (although some people believe that Hyperlexia itself may be on the Autism Spectrum), Dyslexia, Hypotonia, Mental Retardation, Central Processing Disorder, Hearing Impairment, Visual Impairment, ADD/ADHD. Those are only the ones I can think of off the top of my head -- there are many others, I am sure. These co-occuring conditions are not Autism, but they need to be addressed. Some are curable, some can be improved/remediated, some are controllable, some are maneagable, and some are permanent impairments.

While some people with Autism have higher than average IQs or "savant" like special abilities, most do not. (As in the typical population, most have an average IQ range.) Furthermore, a high IQ is not a predictor of a good outcome. In fact, studies have shown the opposite to be true -- children with average IQ tend to make better progress with Autism Remediation programs and wind up with a better quality of life than do children with above or below average IQs.

Kids with Autism are not just "shy", "quiet", or "quirky" -- they have a serious neurological condition. Their brains are not functioning the way the human brain was intended to function.

Kids with Autism are not "happy in their own world". They are struggling every minute of every day to try to belong in the real world. Most of the "problem behaviors" that are seen in kids with Autism are a direct result of this struggle.

Autism is not caused by mothers not being good enough mothers, by parents not being strict enough with their kids, or by children not being around enough other children.

Autism is not cured by putting kids in with groups of kids to be socialized (and in most cases that sort of thing is quite detrimental).

Autism is not a life sentence. In most cases, it can not be cured. But it CAN be remediated. Posted by Picasa

what Autism is

Before Autism affected us, my impression was that Autism was an unresponsive kid rocking in a corner with no hope of a normal life outside of some type of miracle. Wow, what a naive, uneducated person I was!

From my understanding of the most current research, here's what we know (or at least what I believe we know) about Autism:

First, there's some controversy about what to call it. The PC term seems to be Autism Spectrum Disorder (ASD). Before that term became popular, everything seemed to get lumped under a general Pervasive Developmental Disorder category (PDD). In both cases, some folks like to break it down further into exact diagnosis categories -- Asperger's Syndrome, PDD-NOS, High Functioning Autism, Kanner's Autism, etc. Personally, I just prefer the term Autism, because there are deficits that are common to all the categories, so challenges that we all face together regardless of our kids' specific diagnosis. Autism is simple to say, simple to remember, and gets to the point -- this is a significant thing that greatly impacts our child's life.

Autism is the result of connectivity problems in the brain (caused by some sort of neurological compromise that occurs prior to 18 months of age, not neccessarily any one particular reason as there seems to be many different causes). It seems that there are too many "local" connections and not enough "long distance" connections, so while the brain communicates in it's own areas, it has problem communicating between areas. And because neurons, which make up these connections, develop as the child develops, once development starts going off in a different direction, the connections aren't apt to just fix themsleves, they are apt to just keep developing in the new direction. (The good news is that they DO keep developing, throughout life, so if you can force that development back onto the right path and keep them there, you can grow the connections in the right direction too. But I'm getting WAYYY ahead of myself and will talk plenty about that sort of thing when I start talking about remediation.)

There are lots of different severities and "affectedness" of Autism, which may be linked to how early the child has whatever neurological event that caused development to start going astray. (Some kids are Autistic at birth, some develop Autism as they progress thru their infancy and toddlerhood.) That's why it's refered to as a "Spectrum Disorder". Some people like to break it down into "high functioning" and "low functioning", but research has shown that the severity of the Autism has no bearing on the projected outcome for that child. So I think categorizing it like that is only useful for people who want to believe that there are other kids worse off than theirs. Or the reverse, folks that want to think they've got a bigger struggle than everyone else. I personally believe that we've all got a lot of work to do, and that there are more similarities between our kids than there are differences. But that's hard for a lot of people to see, especially when at one end of the spectrum you've got a highly verbal child spouting off math facts while at the other end you've got a kid without any spoken words banging his head into a wall. It's not until you really understand what Autism is that you see that these two kids have a lot more in common than it appears.

Research also defines the "core deficits" (those deficits that all people with Autism have) for us. These deficits are all lumped under the "umbrella" term of "Intersubjectivity" -- in other words, the entire relationship dynamic between two people, how they relate and interact with each other, and how that affects the way they each percieve and interact with the environment. Here are the resulting core deficits as they are currently identified:

1. Appraisal -- the ability to identify and seek out the important information in any given situation. People with Autism tend to use the same appraisal in every situation rather than varying it as appropriate to the situation.

2. Episodic Memory -- a person's autobiographical memory where they connect their emotional memory, their semantic memory (pieces of data), and their subjective experience. This is how people learn from past experiences, how they build confidence and competence. People with Autism tend to have good semantic memory, but the inability to connect the pieces to emotional memory and subjective experience to make it useful to them in this way.

3. Experience Sharing -- the sharing of mental representations for the primary purpose of communicating and connecting with other humans. People with Autism often lack the motivation to communicate with others due to their deficits in this area. This includes body language and other non-verbal communication as well as spoken language.

4. Creative Thinking -- the ability to integrate information from different sources and situations and formulate best-fit solutions to real-life problems. People with Autism tend to think in black and white (right and wrong) rather than in shades of gray. Their thinking is not flexible enough to make the small adjustments needed in everyday functioning in the real world.

5. Self Awareness -- the understanding of who we are, what our preferences are, and how our emotions and actions impact others. Posted by Picasa

Friday, July 28, 2006

ding, ding, ding, we have a winner!

So it wasn't just Sensory Integration Dysfunction (though that was surely a part of it). It wasn't Asperger's Syndrome. It was Autism. Plain old Autism. Real Autism.

I allowed myself exactly that one night to panic and mourn. When I got up the next morning, I was all business. Ok, so Jacob has Autism. Time to get to work and figure out what to do about it.

First thing I did, of course, was get on good ol' google and googled back up all those Autism Spectrum Disorder sites that I had previously scanned and just picked out the Asperger's info from. Sure enough, there it was in black and white (and all sorts of colors) -- kids that were JUST like Jacob (well, with variations of course, but the stories were strikingly similar). I had been in the right place, I just was looking in the wrong direction. I found it surprisingly soothing to read story after story of families struggling with the same issues. I felt an instant bond with those mothers, an instant affinity with the families, and an instant attachment to those kids.

And I put my head down and started to learn all I could about Autism. Posted by Picasa

one bad night

As I was surfing the internet reading every bit of information I could get my hands on about Asperger's Syndrome, I came across a link to a screening test for Autism. You answered 20 or so questions and it gave you a rating of "typical" "probable mild autism" "probable moderate autism" or "probable severe autism". The test was designed for 18-24 month old children, but I decided to fill it out anyway, even though Jacob was coming up on his 3rd birthday. I answered all the questions and pushed the button for the results to be tabulated. While I was waiting, one of the questions kept running through my mind, in a panicky, oh my god, sort of way. The question was about pronoun reversal. Pronoun reversal. Prounoun REVERSAL. Jacob had NEVER used a pronoun. I was feeling sick to my stomach. The answer to the quiz clicked onto the screen -- "probable moderate autism".

I called The Map Man over. He convinced me not to panic, though I was finding it hard to breath. He suggested that it's just an internet test, it doesn't neccessarily mean anything. I flipped off the monitor and we went back to a project building dog kennels. Still running through my head was the question about pronoun reversal. I asked The Map Man "have you ever heard Jacob use a pronoun?" We were both watching him out of the corner of our eyes, as he contentedly opened a door to a kennel, stepped inside, shut the door, opened the door, stepped outside, shut the door, and repeated continously as we worked. The Map Man took a long time to answer, but said no, he'd never heard him use one.

After the kennel building was done and The Map Man and kids were asleep, I returned to the computer. I hunted down several other on-line Autism screening tools and took the tests. They all returned the same result -- probable moderate autism. I flicked off the computer and went to bed, pulled the covers over my head, and tried to disappear. Posted by Picasa

following the clues

So it was time to begin our search for answers as to what was "wrong" with Jacob. I know not everyone will like the word "wrong", and my Mom still to this day insists there was never anything wrong with him. But there was so much that just wasn't RIGHT. So I think it's as good a word as any.

I had been posting about my various frustrations over the past month and a half on a parenting e-group I was a part of, and finally I just asked if anyone had any idea what was going on with him. I recieved a few replies, a couple with dead-end suggestions, but one that pointed me in the direction of "The Out-of-Sync Child" by Carol Stock Kranowitz, MA. I immediately ordered the book from Amazon, and read it in one sitting. I could see Jacob all over those pages, and everything she said about a child with Sensory Integration Dysfunction (relabled Sensory Processing Disorder in recent years) certainly seemed to apply to Jacob. I was excited that at least I had a direction to look in, and I felt that SID was at least part of the answer. It explained his fear of water, his dislike of being touched by others, his aversion to sudden noises, and many other minor items that added up to him seeming very uncomfortable with himself.

But there was so much about Jacob that wasn't covered in those pages. No mention of repetative behavior, video scripting, inability to grasp abstract concepts, his problem understanding directions from us. No mention of preoccupation with letters and numbers, the ability to draw recognizable pictures from memory at just 2 yrs of age, the lack of a development of imaginative play. So I kept searching.

Not long after discovering SID, I was visiting a friend with a same-aged child. I was completely floored by this boy's ability to come up with intricate imaginary stories and games, the fact that his parents spoke to him in full sentences and he understood. AND replied in full sentences. Previously I just believed the boy to be some sort of genius. I now feared that the boy was just your average, typical 2 1/2 yr old. What did that mean about Jacob?

While visiting that friend, I share with her my worries about Jacob. I told her about SID and how I thought that answered some of the problems. She asked me what the difference between SID and Asperger's Syndrome was. I started answering her, knowing that I read about the difference between the two in the book, but then realized that I didn't really know what Apserger's Syndrome was. So I left it with a lame "There's a difference, I'm just not sure what".

But when I got home, I did a google search on Apserger's Syndrome and started reading everything I could find. For the first time, I was reading stories of kids that, while not just like Jacob, were similar enough to make the hair stand up on my arms. But the literature was confusing -- some said it was no big deal, some said it was mild Autism, some said it was just quirkiness, some said it required the same treatment as any other form of Autism. Most were very encouraging about good outcomes even without treatment and pointed towards Bill Gates and other famous brilliant people. Some were discouraging and spoke of lifelong impairment in social abilities and clinical depression. I found my way to the Oasis site, which was so helpful that I ordered their book, and joined a couple of AS internet lists.

And I started reading about Autism Spectrum Disorders in general, though I pretty much disregarded anything I came across that wasn't specifically about Asperger's. I felt that we were closer to an answer than we ever had been. So I kept on reading.... Posted by Picasa

puppy love

Well, who wouldn't fall in love with a face like that?

This pup is what ended The Storm after 6 weeks of raging, and restored a semblence of peace and happiness to our home. As I'd said, I was at my wit's end. I happened to meet this pup, in need of a home, and something told me he was the answer to our current situation. Mind you, I NEVER reccommend for anyone with a new baby to get a puppy, it's just too much work on top of something that is already SO much work. But we needed something to shake up our household. So I brought the puppy home.

Zoo Boy and I were in the front yard with the pup when The Map Man and Jacob came home from an outing. I still remember the look on Jacob's face when he stepped out of the car. With a huge smile (the first in over a month) on his face, he joyfully cried "PUPPY!!" and ran over to meet his new buddy. It was love at first sight, and that pup has gone on to grow into the best child's companion I can imagine. He's perfect -- when the kids want to play with him, he's right there for him and they can do ANYTHING to him, yet when the kids don't want him pestering them, he's off lying in a corner and doesn't bug them. (We have other dogs, all of whom are really pushy about getting attention from the kids and sometimes overwhelm them.) He's extremely protective of them, which gives me great peace of mind that when they are in the yard with him, NOONE is going to bother them. On his own, Jacob taught his pup to sit, lie down, stay, and fetch. Guess he picked up a few tricks from watching me with the other dogs.

From the day the pup came home, Jacob's attitude took a 180 degree turn. Suddenly my happy boy was back, at least part of the time. He still had major meltdowns whenever Zoo Boy cried or for any one of a million other reasons, he was still big-time moody, and still would run screaming for his play room to slam the door and block the world out.

But the skies were clearing. It was time to get busy finding out what was going on with our boy. Posted by Picasa

The Storm

There's just no other way to describe it. It was like a massive hurricane blew in, swirling my happy toddler's personality away overnight and replacing it with a brooding, moody, explosive child. And yet, the storm was always lying beneath the surface, hidden by good management and avoidance of situations that would cause it to surface. We got peeks at the whirlwind in Jacob's depths, but they were like quick cloudbursts that moved through our lives, wreaking a bit of havoc for a short time, and then all returning to normal. Zoo Boy's arrival unleased the winds and set loose the raw forces of Jacob's inner soul. It took months to put back the pieces after The Storm.

The initial fury lasted about a month. There were aftershocks for months afterwards too, but the impact of the actual Storm is what caused the most damage to our relationship with Jacob and to the structure of our family.

When people called to ask how things were going for us, my usual response was that it was about 90% pure joy and 10% unadulterated hell. But for Jacob I'm guessing the figures were reversed. And actually, that's probably being overly optomistic -- I'm not sure he even felt 1% joy during that first month. He was absolutely miserable, a fact he was not afraid to let us know. What we thought were meltdowns before were mere whinings compared to the expression of distress The Storm brought. While I absolutely loved being a new mother again, I was horrified with both the change in Jacob's attitude, and my feelings about it. I found him annoying for the first time in his life, and actually found myself becoming increasingly intolerant of having him around. My attitude certainly didn't help anything. The Map Man was more sympathetic to Jacob's plight and made a good effort of keeping him away from me as much as possible. They slept in our bed while Zoo Boy and I slept on the couch. When Jacob woke up wanting to nurse, we'd change spots and I'd crawl into bed with Jacob until Zoo Boy wanted to nurse again, when we'd switch back. Jacob started shutting himself in the play room to get away from us. His obsession with books took on a whole new status for him, and he used that and drawing on his magnadoodle as a way to escape us. Any effort to get him to be more present in our lives was greeted with a screaming, yelling cyclone, ending inevitably with him running to the playroom and slamming the door shut, from which he refused to emerge for up to several hours. (This behavior continued for over a year after The Storm.)

Taking both boys anywhere was impossible, as when I had both of them in the car at the same time, they would both scream mercilessly. I took to driving with the stereo blasting as loud as I could stand just to block the sound of them out if we HAD to go somewhere. But mostly I just avoided it. I would save as much as I could for the weekends so that The Map Man could take Jacob to do the things he needed to do, and I could take Zoo Boy to do the things I needed. I felt myself growing more distant from the son I had been so close with, and I was distressed about it. And even more distressing was the fact that it was a relief to me when he wasn't home.

It was so bad for that first month that I didn't even have the energy to try to determine what the problem was. Every ounce of time and patience was spent just trying to get through the day. I was at my wits' end and was starting to think about getting some sort of professional help, both for the family and for myself.

But just when I began to fear that I couldn't take any more, The Storm stopped as abruptly as it had started. And for the simplest reason I could think of. I brought home a puppy. Posted by Picasa

what was it?

The most common question I get when I tell our story is "What was it about Zoo Boy in the first hour after birth that made you think that Jacob was so different?" I've tried a million ways of explaining this, but everything seems to fall a little short of anyone actually being able to understand. I'm not sure it's possible TO understand unless you actually live through the experience. But let me assure you, there was a HUGE difference, even at that early age.

An hour or so after Zoo Boy was born, the nurse came in to do some measurements and clean him up a bit. This was all done on a warming table next to our bed. As he lay there, he seemed perfectly delighted about everything -- the attention from the nurse, the warm light above him, the cozy mat he way laying on. As she was working on him, The Map Man's parents came in for their first peek. When the nurse left, they hovered above him and he lay there happily naked, RELATING with them on his little newborn level. My parents came in a short time later with the same experience. He just seemed so, I dunno, comfortable in his skin. Content with life. A real part of the world he was born into, like he was a missing piece that found it's way into the puzzle of life. It just wasn't like that for Jacob, who seemed totally overwhelmed and puzzled by his world from the moment he came into it.

Zoo Boy studied the world and people around him because he was curious about it and knew he was a part of it. Jacob stared in a seeming mix of disbelief and concern. Zoo Boy looked at your face as if he wanted to know you; Jacob peered intently thru it, like he was trying to look inside your brain and figure out just what the heck you were and why you were in his space.

So a mere hour after Zoo Boy's birth, The Map Man and I looked at each other and said "ummm.....". Finally we understood what other parents had been talking about. Finally we knew what having a typical baby was like. No wonder we just didn't "get it" when other parents of babies tried sharing their stories with us! And that left us wondering -- what the heck had we been experiencing for the past 2 1/3 years?

And so the search for answers began. Posted by Picasa

enter Zoo Boy

So Zoo Boy was born. My parents stayed at home with Jacob while The Map Man and I did the whole early morning c-section hospital thingy. After we got wheeled back to our room from Recovery, he drove home to get Jacob. My parents drove back to see me and meet their new grandson. Eventually I saw Jacob's head peek in the door of our room -- and that was it for the next several hours. He took one look at me, the room, the baby, and ran back down the hall to the elevators. The Map Man entertained him by letting him ride the elevators and explore the cafeteria until more family showed up -- my brother and sister and their families -- cousins weren't allowed in my room, which, tho a bummer for them, worked out great for Jacob -- he hung in the family waiting room in a party like astmosphere with his cousins for the entire day, batting at balloons and entertaining everyone with his counting behavior.

By mid-afternoon, he was really in need of nursing. So he finally was convinced to make his way back down the hall to our room. I knew he was coming, so I'd handed Zoo Boy off to my mother, and Jacob crawled in bed with me and nursed himself down to a nap. After that, he was happy to stay in the room with us, and we all had dinner together (our new family of 4 plus my parents), and although he didn't look at the baby at all, at least he hung in there with us all without any drama. After dinner, The Map Man and Jacob took off for home, my Dad took off for his home, and Mom, Zoo Boy, and I settled in for a comfortable first night.

The next day, Jacob came readily into the room (looking to nurse), and started stealing peeks at the baby. He sat with both me and The Map Man while we held Zoo Boy. He wouldn't get closer than an arm's length to him, and he skittered across the room if he made any noise, but fortunately for Jacob, he was blessed with a very content little brother who really didn't cry much. What an ENORMOUS difference for us from our experience with Jacob!

By the 3rd day, Jacob was willing to nurse with Zoo Boy in the bed with me, and was willing to pose for our first family portrait (above). It would still be days before he would try touching his new brother, but he was taking more quick peeks at him throughout the day. By the time we went home the next morning, he didn't seem too bothered about the fact that Zoo Boy came with us. We all breathed a sigh of relief, figuring we had dodged a potentially large problem. Yeah, right. Posted by Picasa

the calm before the storm

Jacob enjoys being carried in his Baby Back-Tie carrier by a very pregnant mommy. Posted by Picasa

Thursday, July 27, 2006

two years in

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See how much nicer this is with a photo actually IN the post?

Ok, so we're up to Jacob's 2nd birthday (this photo is his 2 year portrait). We continued with Gymboree classes and playground visits and his insistance on only working on one piece of equiptment a day actually served him very well physically -- he caught up to where he should be with his obvious gross motor skills.

Jacob was basically a happy child. As long as things were going his way (which, due to our schedule that took into account every possible upsetting factor for him, was the usual case), life was good and he was enjoying it. We were vaguely worried about the impending birth of his baby brother. We were unsure how the baby's crying would affect him (since he really seemed bothered by loud noises, especially unexpected ones that he wasn't prepared for). I bought him a wooden dollhouse with many intricate pieces that I knew would keep him occupied for hours on end, hoping that would buy me time to deal with a newborn's needs, and set it aside until after the birth. We moved our spare full sized bed next to our queen in our bedroom to create a larger sleeping space, so that he wouldn't have to share his spot in our family bed with his brother. We were constantly amused by everyone asking us what he thought about getting a new brother -- silly people, how would a 2 year old understand that sort of thing? (Not realizing it was only OUR 2 year old that couldn't understand something like that, or really anything conceptual and not right in front of him.) We arranged for my mother to stay in the hospital with me and the new baby (they wouldn't let me co-sleep with him unless there was another adult in the room) while The Map Man handled Jacob duty at home and transported him for visits.

The storm clouds were gathering, but for the moment it was still sunny.

So our lives went on as usual, and we were an obliviously happy family of three. Until the spring of 2003, when Zoo Boy arrived and the rug was pulled out from under Jacob.

17 months old

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And here he is at 17 months, which would have been included in my 4th post, "movin' right along". That gets me up to date with photos that should have been with posts but weren't due to some sort of glitchy thing with the photo adder thingy. Sorry for so much technical jargain there, hope I didn't lose anyone! And hooray for picasa giving me another option so I can stop obsessing over posting photos and get back to blogging!

4 months old

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And here's a photo of Jacob at 4 months of age. Cute, no? Would have included this with my 3rd entry, "another memory....", if I could have figured out how to get it there.

birth photo

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OK, so I finally figured out how to post photos via picasa -- just can't figure out how to get them into the post I want them with. Sigh. Oh well, things will look better from here on out! Here's the photo I would have liked to post with my 2nd entry, "in the beginning....", with The Map Man holding a newborn Jacob in our bed on the day we came home.

Wednesday, July 26, 2006

movin' right along

The photo thingy still appears to be non-functional. I promise I'll come back and post photos when it's possible to do so! Would be terribly boring to just have all these words without any cute faces to look at, wouldn't it?

So, on to year 2. Jacob's first birthday came and went, with him eating his very first piece of cake like a pro, without a single crumb going astray. Which was nice, given that he was very upset by anything messy. His second year was more difficult than his first. Bigger discoveries in an expanding world for him made for bigger upsets and more obvious difficulties. Yet still we didn't suspect a thing -- he was hitting his milestones in a timely enough fashion that it jived with the Pediatrician's little checklist, and any question we had about ANYTHING seemed to be dismissed with a condescending chuckle and a wave of the hand.

Several things of interest to note about this year:

He was growing increasingly uncomfortable with people looking at him. Any direct eye contact from another person was met with Jacob burying his head into my shoulder and freezing in position like a deer caught in the headlights. With us we felt that he had fairly decent eye contact, but anyone other than his parents and a few select favored adults were met as though he couldn't even bear to look at them.

At 17 months I took him to see a Homeopath (who, ironically, specializes in Autism). I can't put my finger on a reason as to WHY I took him, I just felt like it was a good idea (I am a huge believer in Homeopathy, a topic I am sure to write more on as we progress with this story). Even though Jacob couldn't do anything but the freeze-while-attached-to-my-breast act, and I don't think the Homeopath ever even saw Jacob's face, he declared him to be the healthiest child he'd ever seen and not in need of any specific care. He sent us on our way with a general remedy, a pat on the head, and a bill for his services. (Special note: Jacob did later recieve great benefit from a Homeopath, so they aren't all completely useless!)

At 18 months Jacob began speaking in long, perfectly pronounced sentences. Prior to this he had done the usual amount of babbling (or so I assume, I honestly am not sure what "usual" is!), and had a few clear words with meaning (dog, mommy, daddy, hi, cookie). But he seemed to wake up one night speaking in paragraphs. However, this was strictly in scripted sentences. Video scripts, to be precise. Full episodes of Kipper (with a British accent, of course). Recitations of entire scenes from Blues Clues. For months we had live Finding Nemo theater, complete with hummed theme music. He was a regular one-man show, and we joked about charging admission and opening a dinner theater. Yet, oddly enough, nobody seemed to think this was out of the ordinary. At least, nobody told US that it was out of the ordinary. Everyone marveled at what a wonderful memory he had. He had absolutely no conversational ability, but nobody seemed concerned about that. The Pediatrician only wanted to know if he knew at least 25 different words and spoke in sentences at least 3 words long. Um, yeah.

Around that same time, Jacob began obsessing over letters and numbers. He already knew his shapes and colors by heart, having caused his aunt's heart to skip a beat or two when he properly identified a pentagon by name. He knew the alphabet, upper and lower cases, by sight before his 2nd birthday. He also could spell his name, along with certain other simple words like cat, dog, and cow. He could recite numbers beyond 100, and as far as we could tell, could count actual objects just as far. All this admittedly freaked us out a bit, as we did nothing to actually work on this with him, he just sort of picked it up somehow.

What we later learned is called "Perseverative Behavior" (or perseverations) became obvious. This means that he would do the same thing over and over and over ad naseum. One particularly memorable, yet very typical, example of this -- one of our old cats became gravely ill and Jacob and I spent the better part of an afternoon at the vet's office having tests run, trying out emergency treatments, and eventually making the decision to humanely end the cat's discomfort. Needless to say, it was an emotionally packed visit, in a small room with nothing to occupy a child's interest. Yet Jacob, about 20 mos at the time, contentedly stood by a row of chairs opening the door to the empty cat carrier, placing a brochure for pet tags inside, closing the door, opening the door, removing the brochure, closing the door, and repeating. For 2 1/2 hours.

With the perseverations came new challenges. Shopping with him on foot became impossible -- he would decide to attach and detach a display hook for hours, having an emormous meltdown if I tried to remove him, carrying him kicking and screaming from stores, attracting a whole lot of looks, both the sympathetic type, and the "can't you control that child" type. I started avoiding stores that did not provide carts, and in those stores that did, I first ran to find something inexpensive that I didn't mind buying for him to play with while I shopped (because he wouldn't be "done" with it by the time I was done shopping, and taking it away from him would cause the end of the world as we knew it). I learned to buy multiples of his favorite items, for fear that we might lose that one beloved item someplace and cause the earth to stop turning for him.

At some point before his 2nd birthday it suddenly occured to us that he didn't know how to climb. Anything. Even low lying obstacles. So we instantly enrolled him in Gymboree classes and started taking him around to the smaller local parks and playgrounds. Gymboree was a great experience, as long as we dedicated the better part of the morning to it, as there were toys in the waiting room that had to played with for a certain amount of time both before and after class. During class, he would choose one of the many potential play surfaces to obsess over, and would do it over and over for the entire class. But the class design was pretty loose anyway, and the teachers very tolerant of kids doing their own thing at their own pace, so the only remaining obstacle was the rest of the parents' patience if their kid actually wanted to use whatever it was that Jacob chose that day. And he DID learn to climb, and at an age that the Pediatrician obviously found acceptable.

The parks and playgrounds became a testing ground for the limits of my patience. I'm pretty much a borderline hyperactive on-the-go, overscheduled-and-love-it, bite-off-more-than-you-can-chew-then-take-another-bite sort of person. Jacob's approach to the playgrounds was more like a pace that would bore a snail. First he would stand just on the outskirts of the play area and study every possible place to sit. After 10 or 15 minutes, he would decide on the best vantage point from which to study the rest of the playground, and plant himself there for the next hour or so, not really looking at anything in particular, more just soaking in the atmosphere and becoming one with the playscape. Just about the time I thought I would start pulling out my hair, he'd stand up and choose the item he wanted to perseverate on that day -- maybe a ladder to climb up and down the first step of a thousand or so times, or a steering wheel to turn 3 times to the right, then back to the left 4 times, then once more to the right, before walking away a step, returning, and repeating a hundred times, more or less. After a couple hours of that, he sometimes would leave the playground willingly. Sometimes it was more kicking and screaming and yelling and crying (and not all the tears were his....). I marveled at those amazing families that appeared and dissappeared during our playground stay -- mom: "ok, kids, just a couple of minutes" kids: "ok mom!" and then down a few slides, across the monkey bars, and then the truly magicaly moment, where mom called out "alright, time to go" and the kids skipped along after her to the car. HOW does she DO that?!?!?! It was much more mysterious to me than any Agatha Christie novel had ever been!

We had some agonizingly awful moments, when some major meltdown over apparently nothing (or something so minor that it's significance failed to impress me) left me standing there with a blank look on my face, powerless to even attempt any sort of repair. But for the most part, I spent the year learning how to manage Jacob's life so that those moments happened less and less. By the time he turned 2, I had a pretty good routine worked out where we avoided crowds, only went into public when fully contained and entertained, and spent a lot of time sitting on my butt at playgrounds waiting for him to indicate his ability to move on.

I figured I had this whole Mommy thing pretty much under control.

another memory from the first year

Hm, the photo adder thingy (I'm so techologically advanced, check out the fancy terminology!) isn't working. I'll try adding photos to my posts later, if I can figure it out. It's probably something I'm doing (though I DID manage to post one photo yesterday and one today, so maybe not?).

I remembered something else from that first year of motherhood. I was sitting in my parent's living room, holding my 10 mos old neice on my lap (which means Jacob was about 4 mos, which sounds right, as I know he wasn't sitting up on his own yet). I remember being amazed at how calm and comfortable her daughter seemed to be sitting with me, and I asked my sister "when do they stop crying for no reason?" My sister looked at me like I had 3 heads and said "What do you mean, they never cry for no reason." I remember feeling a little stunned at that response, but then dismissed it, assuming that her kids must have been unusally content children. That's the really funny part about the first couple of years -- every time her daughter or a friend's same-aged son did something that was totally amazing to me, I always figured they were just ridiculously advanced, rather than wondering why Jacob wasn't doing the same things. Funny how you don't even want to consider something that's staring you right in the face....

In the beginning...

The Map Man and I will be celebrating our 18th wedding anniversary next month. We were together for almost 5 years before we got married. That's nearly 23 years of togetherness. Yet we didn't feel ready to add kids to our household mix of humans and animals until we were pretty far along in our life journey together. But at some point, the topic came up, and we dove headfirst into trying to conceive, pregnancy, childbirth classes, and finally actual parenthood.

I had a serious case of post-partum euhporia -- I couldn't believe how much I loved that little bundle of new pink skin with intense blue eyes. I reveled in the wonders of breastfeeding, bonding, and "nesting". I felt as though a whole new me was born along with the baby.

We spent the first year together as a family in blissful ignorance that anything was less than absolutely the way it should be. As first-time older parents with zero baby experience, it never occured to us that babies don't typically stare at lightbulbs for hours on end, occasionally don't mind being put down for a second or two, or don't scream for 4-5 hours every evening. Babies are fussy, they are supposed to cry, right? They are all individuals, every baby is different. I was blown away by how different other babies I saw, including with close family members, behave compared to Jacob, but I chalked that up to our "odd" parenting style. We called it "instinctual parenting" before we realized there were a whole lot of other parents out there doing the same thing, and that there was actually a name -- Attachment Parenting -- for this parenting style. We had both been raised quite traditionally, so our familes thought we were a little "out there" with all this extended breast-feeding and co-sleeping and constantly carrying the baby around in a sling stuff. Surely that must result in a baby that behaved a bit differently.

There were other clues -- when Jacob was 5 months old, we went to a baby reunion for an internet pregnancy support group we were a part of. Jacob could not tolerate being around the other babies, and I spent a few uncomfortable days trying to keep away from the very people we'd traveled to see. The other parents described him as "intense" and "pensive". It was a side that I hadn't seen of him at home with our usual routine, and I chalked it up to having a few "off" days.

By the time Jacob was sitting up on his own, he was stacking blocks and cups about 6 high. He of course had trouble coordinating his movements to do this (seeing as 6 month olds aren't supposed to be doing that sort of thing!), but when I asked a group of parents about this, they all just said to take the blocks away until he's able to stack them. I didn't, I let him work through his intense frustration, and by the time he was a year old he was stacking them as high as he could reach.

Once he was sitting up, he was a very easy baby to keep happy -- just hand him any sort of toy at all, and he would play with that one toy for hours. Everyone commented on what a blessing that was for us, and how great it was that he was so easily able to entertain himself. They didn't see what happened if we tried to take that toy away from him, and eventually we stopped trying, once he had something, we just let him have it for hours until something else finally captured his interest and he moved on. They (and we) didn't notice that while he was happy staring at the toys, he had no interest in looking at or interacting with the people around him.

I took him to Storytime every week at a bookstore near my sister's house, where she took her kids (including his cousin who is 6 months older than him). He sat in my lap staring intently at the book being read, or being nursed in the back row. At 8 months I started taking him to Kindermusik classes. That didn't go as well -- the transitions between activities were too quick for him and we usually left the building with him screaming at some point during the class (on those occassions where I could actually get him IN the building -- sometimes he just refused to go in). Still, it never occured to us that this was out of the range of expected behavior for this age, and with the encouragement of the teacher, we persisted in showing up for however much of the class he would tolerate each week. Most of the time, when his schedule was kept steady and he was given enough time to explore whatever object had his attention, he was a content, cheerful baby. Even an easy baby. And the fact that he didn't walk until after his first birthday (still within the range of typical!) made taking him places easier -- he was happy to hang out in the sling with me, didn't have a need to be exploring his environment.

How lucky we were to have such an amazing baby! (And at least we were right about that part!!)

Tuesday, July 25, 2006

hello, world

This is my first attempt at blogging. After sitting here staring at the screen for the past 10 minutes (after several hours of blundering around on the blogspot site to start with), I'm still not sure how I'm going to start. I have so much I want to type, but it all can't come out my fingers at once.

The epic journey I want to share starts almost 6 years ago, with the much-anticipated birth of our first son, Jacob. The Map Man and I had been married for 12 years, a little bit late in starting a family I suppose, but that made it all the sweeter. But the story didn't really get interesting until nearly 2 1/2 years later, upon the arrival of our second son. Within an hour of his birth, we looked at each other and said "so, what's wrong with Jacob?" After months of stumbling around looking for answers, we finally found it where we least suspected it -- Autism.

I want to capture all my thoughts and feelings and rationalizations and fears from that time forward. Hopefully I'm not starting so late that the emotions, the confusion, and the worry have faded. We are on a really good road now, with every bit of hope for Jacob's future as we had the moment he was first laid in our arms. But from there to here has been quite a journey, we've all undergone a massive transformation, and that adventure is only just beginning. And I need a place to put it all down, try to make sense of it for myself, and refer back to later to say "look how far we've come". All of it -- the joys and tears, the hopes and fears (uh oh, sounding like a bad country ballad....), the moments of clarity and the flickers of insanity.

And if anyone finds it interesting to read along the way, or even (if possible!) learns something about themselves or their child(ren), all the better for it. But really this is for me. And for Jacob.