Money...Meet Mouth

For 6 months plus, I have been watching the progress of the phenomenon known as iPad: specifically, the wonderful way that it has fit almost hand and glove into the lives of many autistic children. I have plotted and schemed ways to push school systems toward using them more; I have looked into ways to win one, get one donated, or otherwise find a way to reduce the cost of getting one for Livie. After months of trying to move the technological mountain to my family; we have finally broken down and ordered one for Livie.

For those under a virtual rock, Apple makes the iPad, basically just a little bigger than a GPS device (wait, if you are under a virtual rock, you don't know GPS either). OK, for those still in the ENIAC era: a screen the size of the TV's in the 1950's, but about 499.4 pounds lighter; and as thick as a pulp fiction paperback. Apple announced it's releasing the iPad2 a few weeks ago with a few more bells and whistles. The real exciting thing for us was that Apple put together an 'iPad...Year One' video for the presentation, to show where the iPad has been utilized. One of the stories within this 6 minute video, is the impact that iPads have had on autistic kids. Watch the whole thing if you like, but the autism part begins at around 3:45:

http://www.youtube.com/watch?v=HpiVeC1Z3yI

I'm hoping I'm right to say that I can't underestimate the power of having Leo and Shannon in that video that (as Shannon herself put it) :"made Steve Jobs’ keynote audience of tech-heads reach for their hankies" in response to the impact a simple tool had on the lives of the autistic community in such a short time. It means those techies will go back to their desks and begin thinking about programming apps for disabled people; their bosses will begin looking at new target markets like special needs schools. At the very least, it means one really big thing: APPLE noticed US! Having the cutting edge technology tool company notice you is something to cheer.

Meanwhile, back in my little corner of the technologically challenged world, I've finally gotten the green light to go ahead and order Livie an iPad. Spring is the time when money begins to flow, with bonuses and tax refunds aplenty. After months of talking the iPad up, Linda finally had taken notice when the speech therapist had told her about the iPhone Livie was playing with and that Livie was very excited about. I had been telling Linda about the fact that you could get cases for the iPads that would make the more durable, but the idea that Livie would actually LIKE using the iPad never clicked until she started playing with an iPhone.

So, I'm ordering finally ordering the iPad. Me being the frugal shopper (read: cheapskate) I saw the 'sale' price of 399 on the old one (iPad I) and jumped on it. Before I hit the 'buy' button, I started to think about it; Linda gave me feedback from the iPhone speech therapist, and I asked the resident 'expert' too, Dillan. The kid has surpassed me in the technology department, I'm getting old, or maybe he's just getting good. Anyway, the faster chip, the front and rear cameras, the smaller size, and best of all, the ultra-cool cover that converts into a stand or keyboard rest, really sold me that the extra 100$ was money well spent. This is one of the very few times I have been on the North side of the technology adoption curve! Although now I'm having buyers remorse because we have to wait 4-6 weeks before it arrives. With the Japan tragedies also contributing to potential delays, my little Scottish alter ego is berating me saying "See what ya git for adoptin' technology early?"

We have so many expectations for Livie on the iPad. At the very least, it's going to be a great (and expensive) toy or her. She has very few things that she likes to play with, most of which are cause and effect buttons, screens or musical instruments. The 'fingers on' manipulation of the iPad screen is a natural for her as well as for many autistic kids. She likes the computer, but lacks the hand eye spatial coordination to effectively use the mouse. My hope is that the excitement of having this larger sized 'iPhone' that she already loves, coupled with the myriad of fun (and cheap) apps, we can develop her use of the iPad into a basic communication tool. There are quite a few apps for communication, ranging from .99 simple cause and effect thingies, up to a full blown AAC (alternative Augmentative Communication) devices app that can turn the iPad into a tool that could potentially replaces devices costing thousands of dollars...all for $189.00!

So here we are, waiting for the end of April to see if our latest bet will yield great results. Truth be told, we've invested in the past 10 times more heavily on other things, with both time and money. What's weird this time though is that I am excited about something others can relate to, others on the OUTSIDE WORLD! When I talk about going from two to three times a week for a occupational therapist, or going to see a doctor about an issue, people can nod, but they can't relate to it in the same way. But, if I tell them about the iPad and what's going on with autistic kids, their eyes light up; they have something they can tell their friends and relatives about what the iPad can do! It just feels good to be part of a revolution and pushing the cutting edge.

Life Swapping

Didja ever meet one of those parents that just have to have their children do EVERYTHING? Be involved in ALL activities? Push them to get the GREAT grades? Try for the BEST schools? Don'tja just LOVE to hate them (Nah, just kidding!)? I remember a scene in the movies Baby Boom where Diane Keaton, the driven career woman from the 80's sitting in the park with her newly 'acquired' child, when she overhears some women. "He didn't get into Preschool Academy! If he doesn't get in the right preschool, he won't get into the right kindergarten, so he won't get into the right primary school, then no good prep schools, which will RUIN any chances to get into an Ivy League school."


Not that I've ever been that way with my kids, before or after autism. But I would love to trade places with them for one day. For me, it would be a somewhat relaxing day where all I need worry about are the standard horrors of everyday life. Car payments, getting kids to and from activities, sitting down for a quiet conversation and cuddle at the end of the day with my kids. For the other end of the 'parent swap' it would be a different story.


To wake up...let's say it's a good day, at 5:30. Not bad, pretty normal. Now you have to get your almost 5 year old ready for summer preschool. A little extra work from a 'normal' 5 year old since you have to do most of the dressing brushing and feeding for her, but still, not bad. Once you get one off, it's on to the 3 year old, same routine, same little bit of extra work, but still a cake walk.


The other three, I'll give them a free ride on, since they could be like any other 12, 10 and 7 year olds. Except that when it comes time for soccer, dance, baseball, or any other activity they'd like to do or you'd like them to do; because once the other two get out of school, it's time for therapy sessions. Going from occupational to speech to play therapy take most of the afternoon, not leaving much time for recreational activities. Oh I suppose you could network with other parents to shuffle them around, but you see, you don't run with the 'normal' crowd. Your crowd is more the ABA-don't-go-to-the-market-since-the-tantrum type crowd. They don't exactly have the time either for 'extracurricular' activities. Not that there's an money left for activities after spending a good portion of you salary on therapies. Home at last late in the afternoon, you feed up, wash up, clean up and get them off to bed.


I guess it don't sound THAT bad, except when you think about what your goals are. My restful day with my 'new' kids consists of worrying about pee wee soccer, planning outings, and the all important social groups for my children. My counterpart must worry about pee wee OT, feeding, clothing, and the all important working on the ability for them to communicate.

I suppose I am taking the pessimist's viewpoint of all this; that I should be counting my blessings and cherishing what I have; and I do. But sometimes I'd like to be able to share good news about my kids with the outside world that they do not look at with puzzlement and pity. I'd like to have a day out, heck, how 'bout a weekend with the family without worrying about how we'll manage. I'd like to have a conversation about my kids that doesn't involve some type of therapeutic jargon. I'd like to have laurels to rest on, the one's we get are much too small and fleeting. Just for a day, I'd like to have a life without therapy balls and PECS books and diapers and meltdowns and night wakings. A day with gluten and casein and conversations and running free in the park and pointing out the tiniest of flowers, the biggest of clouds and the vastness of the world.

I'm just being impatient, I know. I'll get there, it won't be the same as I'd envisioned; but it will be better than I imagined...

Fathers Day Kobayashi Maru

For those who do not know the name of the ship Kobayashi Maru, without getting into the whole Star Trek lore, think of it as a no-win scenario. Linda faced hers last night. It is our tradition to let the other sleep in on special days like birthdays and Mothers/Fathers Day. Last night was Linda's test of character and she passed with flying colors.

I was out like a light last night and she heard (at 2:30)what she though was Liv's super low chant/stim (sounds like some kind of Buddahist mantra to achieve nirvana). When she entered the room, Liv was asleep but Grace was up like a shot, blankie and Nuk in hand and mouth. Sharing the bed with Grace is not really an option, she is much to fascinated and distracted being between the two of us, and winds up wandering the room, some type of bodily or property damage is inevitable. So Lin takes Grace out to the living room to Grace's little Dora futon, where as long as she has a hand on her head, no motion and darkness, Grace will return to sleep.

15 minutes into the living room exile, the real fun begins, with the REAL Buddah-mantra from Liv. Since there is no one in there to disturb, Linda and I psychic-ly agree to leave her in the bedroom to her early morning search for inner peace. The external peace however, is becoming problematic. The mantras now include the heal kicks into the wall which, during the daytime, are tolerable, but at night become a sort of dripping faucet to the 15th power (imagine construction on your house and you get the idea). I get up and bring her into my bedroom. Two minutes later, I get the offer from Linda for the better accommodations in the living room with a nearly asleep Grace while she gets the shift with Liv and the 45minutes-1 hour it will take her to be calmed down (including massages and maybe an occasional kick if Lin begins dosing off.

So I get the 'good night's' sleep, Linda gets the extra hour of sleeplessness. I was looking forward to sleeping until 9 this morning; but this is NOT how I wanted it to go down!

HAPPY FATHER'S DAY TO ALL YOU DADS OUT THERE!

Makin' the B B B B Sound With My Lips and Index Finger Again...

Just another standard weekend from hell...


Friday, up early, Grace sick. IEP in the morning, she's with us at the meet, concentration difficult with Dora recitation in the background...Speech therapist finally helped us by taking her for a walk while we talked about Liv's progress. Bright spot of the weekend as Liv's doing very well. Doctor in the afternoon for Grace, ear infection. I get the grammar school pickup in the 90 degree heat. Lin gets the after school shopping trip for the birthday party supplies for Saturday's party. Somewhat crazy evening.


Saturday morning, another sleepless night as Grace continues to hack through the night. Cancel the girls going to Saturday therapy. Gather together party accouterments for noontime party. Mother in Law arrives 15 minutes before we are to leave, with our two new 'houseguests'; two of her cats. Takes a combination of cold logic about being late and various threats to get kids away from new cats and out the door on time.


First part of swim party goes off without a hitch (of course, because they're occupied in a pool!). Make the mistake of overestimating eating time; 15 minutes before party is supposed to end, I have 15 nine year old boys hopped up on pizza, cake and caffeinated soda in a small hot room with nothing to do. Swear I had this nightmare before, having 3 times the amount of kids and no way to control them...


Saturday afternoon/evening: cat saga continues. New cats are hold up in the garage, old cat is afraid to go in (food and 'relief' located in garage). Birthday son suddenly has burning cash and a burning desire for something his cash matches: a Wii. He and Lin go out to just stroll into the local Toys R Us to buy one. Lin calls and informs me that strolling did not work; she's going to try several other different store chains to see if stroll works there. Meanwhile, old cat winds up relieving himself in a small cardboard box right in front of us. We discover blood in his urine, and have to find a new place for the Dora puzzle. We find a 7 day vet within 10 miles of us for tomorrow morning. Cancel planned visit to relatives for tomorrow.


Sunday morning, double whammy last night; Grace at 1 am, Liv up at 5. Lin got 1 am, I got 5. household consciousness occurs around 9 am (using term consciousness loosely). 10 am call to the vet yields a 1PM appointment. 10:10 AM call to Toys R Us yields laughter as the 50 Wii's which arrived Sunday morning were sold out within minutes. Online elicits virtual laughter (or greatly inflated prices). Cat goes to vet; gets minor cystitis diagnosis. I get a 'break' waiting 30 minutes for urine sample analysis as I and vet were lucky to get sample. Alternative involved an empty litter box, a syringe, a fridge and another trip to the office which was, shall we say, undesirable. Arrive back refreshed and exhilarated as kids have been cleaning room for use as temporary cat storage.

Sunday night, weekend of fun an frolic begin to ask for the tab to be paid. Laundry not done, kids not properly up on homework, dishes growing from neglect, supliments need mixing for the week, parents begin hallucinating from exhaustion. Forgot to watch everyone get killed on the Sopranos.

Monday Morning 3 AM: Woke up to stars in my eyes as Liv was in our bed and had inadvertently smacked my eye. Get up at 6:30 so that I can get out and go relax at work. Load dishwasher, get 5 bags of garbage outside, awaken children and RUN LIKE HELL!

Speaking for Those Who Cannot Speak

Or is it speaking for those who cannot articulate; or acting for those who cannot speak; or just plain raising a child? Which direction am I/should I go with regards to the betterment of my young autistic children?

Are we experimenting with biomed (obviously), ABA (possibly), speech, OT, physical therapies (could be)? We have this unprecedented opportunity with early diagnosis to figure out what is the best way for an autistic child to learn. Why shouldn't we try or why (better yet what or when) is it wrong to try? Aren't we trying to see what autistics need early in life, when they could most use a way to communicate, control their issues of concentration, help their functionality within this neurotypical world? I feel we are at square one with autism therapy/training and parents of young uns' are stuck holding the research bag.

It goes to my original shock of the neurodiverse attage of understanding without changing. Even the most fervent of the 'diverse' of the neurodiverse must agree that something should be done for a young autistic child, the issue is always what. What is invasive? I see a lot of talk around the objections to what is deemed as trying to make a child look and act more 'normal'; but for me, it's a blurry line between normalcy and improving a child's condition. My example is my 3 year old, Grace, is having trouble with transition. I think transition is not necessarily an autistic trait but it seems like the work to get Grace to transition easier is made more difficult by her ASD tendencies of wanting sameness and control over her world. Writing that I am again confronted by what is 'normal', what is pushing too hard, what is a tantrum of a three year old vs what is an outcropping of an autistic tendency.

It's back to 'difficult to get it'; how do we take these therapies, these studies, the politics, the day to day existence and desire to make things 'easy' and mold them into a cohesive attack (oops, thorry, used a military term) a cohesive strategy of giving my children what they need vs what is best for me? Kinda between a rock and a hard place, dancing the line between all of what the schools and science says should be done vs what an autistic adult may consider crossing the line into 'normalcy indoctrination'.

The people looking at the neurodiverse movement have to see the symbiosis between the autistic parents (parents of autistics) and the autistic adults. Autistic adults need to look at the opportunity to assist the next generation with advice and guidance; the parents need to look at the opportunity to change the views of the schools and the system to a view of assisting the growth of this generation vs societies attempt to create NTND's.

Why does Hamlet's soliloquy seem to keep popping in my mind with regard to the decisions that I need (want, could) make for my children:

Thus conscience does make cowards of us all,
And thus the native hue of resolution Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry And lose the name of action.

We are in a position to do something (that clock is always ticking in the back of my mind,though I try not to listen). It is a great noise coming from all angles about what to do, all we really want is what's best for them. But is it action or inaction that we should be doing? Is it their balance or ours that we are seeking?

It's Not Easy to 'Get It'

I just watched a You Tube video by Christschool and I agree with everything said on it about how non autistics can be allies in the neurodiverse movement. But it got me to reflect on the journey that I have taken to get to that position. It's not an easy thing for a neurotypical parent of an autistic child to arrive at a place where they understand the neurodiverse movement; I won't say truly understand because, being on the outside looking in, you cannot truly appreciate the situation autistics are in, kinda like a white person trying to get in the shoes of a black person. We can empathize, but we can't really understand.

It's real easy to fall into despair when you first receive your child's diagnosis of autism. There's the 'you have terminal cancer' attitude you get from the doctor. The shock that your initial dreams for you child have been shattered. That your life has taken this bizarre left turn, and the road ahead is dark and foreboding. Unless you have disability in your immediate family, nothing can prepare you for this.

Getting through my denial portion of grief, I ran headlong into anger. I remember anger at my first brushes with people who actually saw autism as something more that just a nightmare that I had just been thrown into. "How can you actually want to keep THEM the way they ARE?" I said to my wife and posted several things to that effect on some boards. The idea of not wanting a cure for autism was repulsive to me. The people advocating this position were abhorrent and uncaring of my daughter's plight. Being told that I was similarly repugnant for looking so hard to 'cure' her of this 'disease' further confirmed my suspicions that their souls we headed for eternal damnation.

Then Amanda Baggs' Getting The Truth Out photo essay hit me square between the eyes. I followed the link off of a board and went through the first half of the slide show which ran along pretty close to my perceptions at the time. How horrible; what CAN we do to FIX her? The second half, and the sudden juxtaposition of advocator vs advocatee, caught me so off guard that there was a paradigm shift in my thoughts of what I was doing and why I was doing it. I admit that I did not get all the subtleties being put forth as far as advocacy, but I did get the point that there is more to my child's disorder that something that needed to be defeated.

I gradually went from exorcising the autistic beast from my child to discovering what I could do to help her and myself deal with the issues that would be there for the rest of our lives. By the time we discovered our youngest was probably on the spectrum as well, I had a different perspective on what it meant. I will not deny that thoughts of a 'normal' life are still not appealing; but I no longer view 'normal' normally anymore.

My moment of clarity in all this is that parents have to deal with this new and different life; to my children, this is the only life that they will ever know. There is no grieving process for them. I guess that's where there is a difference in advocacy between the autistic and the parent of an autistic. Parents have to deal with the loss and change; in that sense we have a certain core of selfishness, no matter how much we sacrifice for our kids. We're mourning what WE'VE lost, not what THEY'VE lost. Autistic children haven't lost anything, but they'll need parents' help to gain everything. The sooner I can shake off that life that has never nor will never occur, the sooner we can get to work.

Is the Internet Creating a New Form of Research Science?

I'm not ashamed to admit that I am impatient with the progress of research science, especially as it pertains to autism. Ever since I was drafted into this autism advocate army in 2004, and because of the way my daughter regressed into autism, I have thought there was something more to this disorder than just a natural genetic switch that got turned on at 16 months. This resulted in us making, at first, a near frenetic search for a cure. Today it has become a more measured and calculated trial of various biomedical therapies. In either case, our cohort, our confidant, our conscience and our co-conspirator has been the internet.

The instant sharing of information from the far corners of the world, a concept and only a promise less than 10 years ago, is now so commonplace it is taken for granted. Even language barriers are slowly being broken down with translation software. Before 2004 (BA...Before Autism), I was enamoured with the internet's potential; but I never would have thought about it in terms of tracking medical conditions or disorders. So now we can have so many eyes looking at so much medical data and information, it would seem to me the scientific equivalent of the NASDAQ of research potential. But, to me, we are only scratching the surface potential of the internet's use in research science.

Never has there been such an instantaneous sharing of information so close to the test subjects themselves. Before, the ability to research; the availability of information; and the sharing of information was the almost exclusive domain of scientists and researchers. The explosion of users and speed of the internet and the availability of information has transmuted this inequity over to the people most affected and highly motivated to find out about the disorder or disease that affects their lives. There are probably other disorders, but I feel that autism is at the knife's edge of this change, the reasons are clear in my mind. First, a near 100 fold increase of those classified on the spectrum in the last generation. Next, a near criminal lack of knowledge of most medical professionals to many aspects of the disorder. Lastly the recent ability to diagnose at a very early age; putting the onus on a highly motivated and highly internet savvy group---parents of young children.

Like it or not, there are literally dozens of boards now supporting all types of autism biomedical therapies. Parents, like my former self, flock to these sites soon after their diagnosis, largely because there is very little support coming from the 'traditional' medical community; you are basically given a pamphlet and a prayer from your doctor after diagnosis. Parents then jump on the internet and given false hopes of quick universal causes and cures; both expensive and unproven. But these boards are the layman's version of a research project. I would think that if a board is either not getting the point across or just flat out not working, the 'research project' would die. It does leave wide open the potential for those who have good PR but bad premises to push through an idea that has no real merit; a placebo-induced psychosis where anything would work. There are still many problems with misinformation; still too much scuttlebutt, opinion, out and out lies. Money is going to be made off of this disorder, much of it based on incomplete, inaccurate or unsubstantiated information. But at the core of these boards are people all in the same situation; looking for information, testing results, sharing information and motivated more than ANY research scientist ever would be.

But I think some underestimate the power and the depth of this new movement toward putting the responsibility of research on the people. They see it as an invasion of the rabble of ignorant people into the domain of statisticians, scientists and researchers. While they do have a very valid argument from a medical standpoint, there is also the counterargument that the realm of behavioral research has always had the distinct disadvantage of being unnatural from the word go. Putting a child in a strange situation, with standardized questions and stagnant expected responses cannot be completely reliable either. Still, many argue the need for statistical backing of causation and results on a disorder that has a notoriously subjective view of results and a wildly varying disorder base in the past 20 years. How can causation and results be defined if the disorder ITSELF is still being defined? But I digress. Parents can provide the missing link in these researchers' puzzle and allow them to get into a world they cannot create in a lab or office.

I think that researchers can and will tap into this resource of willing and able subjects to transform the gathering of data and use of it to previously unheard of levels. Sites like the IAN Network , are trying to do just this and may be at the forefront of this potential revolution. It's only going to be a minor stretch for both the researchers to relax their need for control a little, and a stretch for the parents to be more vigilant in their documentation and process, and we will have a potentially mind boggling new way of tracking disorders and trying out various therapies.

In the end, you really don’t have research science going on more than you have the near perfect availability of anecdotal information. Fodder for the research scientist to chew on and figure out what to look at next. Despite the placebo factors; the mass hypnosis potentials; the money to be made; and the virtual indistiguishablity of fact vs opinion; the internet has the potential to transform research science into a truly global entity from both a geographic and participatory perspective. Let's hope, for my daughters' sakes, that it will move as fast as I think it will...

Moms

On May 5th of last year my mother died. She left her legacy though: 7 kids and lots and lots of grandkids. One of my frequent questions to her when I was an adult was "How did you do it?". We've never gotten a straight answer from neither her nor dad, but I think I'm now learning why. Having 5 myself, including two on the autistic spectrum, my wife and I have learned that it ain't easy.

My mom was a whip. She could rattle off names, dates, to do's, whens, whys, whos and hows. The house I grew up in never seemed to be lacking, even if you had to be quick to get whatever was around to get! 18 hands could pick through a package of Oreos in a nanosecond! Laundry was always done (except, where did she hide the dirty stuff, I have a laundry room FULL of dirty clothes!). While my house was never the Brady Bunch, I felt we ran a not to distant second. But mom was always the hub; keeping the place running with the efficiency of well run small business. My dad just made the money and stayed out of the way of the dynamo!

We lost my mom to senile dementia after many years of a slow downhill march. I always will hate the fact that she had lost that ability to keep it all together in her head over all those years, only to have that talent and everything else that was precious to her slowly get picked away by this degenerative disease. She probably felt the same way about her mother, who lost HER faculties in much the same way as my mother. Genetics ties each to the next generation; I am convinced that genetics for autism and Alzheimer's will be found to be similar, or at least both will be found to have similar susceptibilities.

Anyway, I meant this post for my wife. While I'm not quite the laissez faire-type person my dad was when it comes to the day to day affairs of the house (thanks, woman's lib!), I still am marvelled by the similar fervor at which the house hums along. It's amazing what my wife Linda gets into a day. While I go through my paces at work, she gets 4 kids off to school, has 3 different home therapists to contend with; 3 different outside therapy locations. She has her own therapies she does with the girls; biomedical research; supplement 'mixings'; those 'little' incidentals like homework and meals (the girls are on a GF/CF diet as well). We share the duties of laundry and dishes; diapers and bedtimes. By the time I get home after being away for twelve-odd hours, the average response is "I'm whipped!". But still there are bills to pay; backpacks to pack; things to research; paperwork for schools, state, doctors. I'm usually in bed a half to an hour before her.

It's so absolutely impossible to get personal in this type of pressure cooker environment. We barely get those 5 minute conversations that last 3 hours in about what we need to talk about; there is almost no 'us' time. It's no wonder there is an 80% divorce rate among parents of autistics. Most couples don't get the 5 years of childless getting to know you; then wind up with an autistic child and no real 'communication base' to work from. Thank God we have a strong foundation!

I do indeed see now what my mother went through and what my wife is going through. And why, when we are asked in our old age, "how we did it", we will just smile (grimace), shake our heads and say "I don't know". I honestly don't know how we do it, and I certainly don't know how she does it.

Anyway, I have a card already, babe. But I wanted you to know that I marvel at all you do for all these kids (kids include me sometimes!). There is no one I'd rather be with, nor could possibly go through this with other than you, Lin. You're the best thing to happen to me, them, and all of us. Nobody does it half as good as you, baby your the best! Happy Mother's Day, Bill

Drafted or Volunteered

I must admit, I have never been much of a humanitarian. People with disabilities were never far from just a mild curiosity of a combination of pity and a little bit of awe. Awe in that, despite the challenges they face, they manage to get along just fine without me. I never expected that I would have my perceptions and my life turned completely around in a matter of two years.

Since my indoctrination of the world of autism, I had and still today do not consider the probability that my autistic children, my NT children and my wife and I will be met with some kind of discrimination. Aside from the obvious discrimination regarding education and the disinformation about the disorder in the medical community, I can honestly say that I have encountered little more that a somewhat piteous inquiring glance at myself and Liv in shopping areas that I might have given just a few short years ago.

I am not prepared for the day when my children might be denied extra educational concessions, whether Liv will be judged by her lack of linguistic skills and have her intellect overlooked or belittled. I am not prepared for anything but compassion from her schoolmates and her teachers. I am not prepared for the probability that Grace might be prejudged as a problem child and not a child with a challenge to overcome. I'm an idealist at heart and I can't prepare for things that I would now consider unfathomable. Someone or something is bound to burst my bubble though.

I expect that the next 10 years will be momentous for the autistic movement. We will have the DSM IV generation come of age, invade the school system, and despite my blogs somewhat to the contrary, will strain educational resources perhaps to the limit. But the strain will be more a shift of resources from that of maintaining existence of what was probably considered an unable individual, to that of an individual who is able to contribute to society. How far that goes is anybody's guess. Will we be able to have autistics achieve more than they have in the past because of better educational strategies, or will autistics be forever branded as anti-social outcasts that will not be able to achieve as much because of society's impressions? I guess that last sentence sums up my hopes and fears for my children.

To all of those fighting the disabilism fight, I have become a draftee. I hope that I can help in any way I can...

Are we Alone in the Universe

Maria Lujan (someday I'll learn how to to the 'acentos sobre'!) got me on a thought and I thought I'd try to expand on it. She put as part of a comment on 'Crisis of Opportunity' :

and I feel as alone as in the beginning, 3.5 years ago- except by very few
exceptions-, in the understanding of what is advocacy for my son

I guess what bothers me about the whole advocacy situation is that 'aloneness' you mention. We recognized the symptoms in Liv, told the doctor and the doctor sort of told us we should wait, it's some kind of phase. So we were alone until we finally found someone to agree there was something serious going on with our little girl. But after that we found ourselves alone again to try and figure out what to do, with little more than a pamphlet and a prayer.

I remember distinctly the day Linda called me up at work and said "Do you know NJ has some kind of program that will PAY for her therapies!" Gee, you'd think that would be one of the FIRST things they'd tell you! Before that, we were trying to figure out how we were going to scrape together $20,000 to $50,000 to finance the 30 hours a week of ABA that the pediatric neurologist recommended. Wow, did we feel al0ne before that!

Once you get the therapies, you are alone again to figure out what your child should get. Speech, OT, ABA. Geez just finding out what OT WAS was a challenge. For the most part, you still feel that there is a certain level of we and they between you and your caseworker, so your isolation does not end.

When Early Intervention ends and you're thrown to the mercies of your township, again, you are on one side: the ignorant, ill advised, ISOLATED parent. You're fighting for the mental life of your child and you have to make sure you don't say words like 'I want' (what don't they just make you say 'mother may I', make it like a game!). Unless you've done your homework and/or you've hired an advocate, there's not much on your side. It's very hard to know whether you succeeded or failed, because there's no one to benchmark from, no one in your exact circumstances.

Let's take a break from this isolation talk and say a big THANK GOD for the internet. All these blogs and discussion boards made us realize that despite our apparent isolation, we had literally hundreds if not thousands who were there, are there or will be where we were in the near future. I'm convinced I would have gone off the deep end without this outlet (and inlet) called the internet community.

Despite all that virtual support we are still in this advocacy battle on our own for the most part. I don't know about you, but I feel uncomfortable talking to parents within my district about services. I feel it's like talking to coworkers about salary, it's almost taboo.

I almost feel like even within the household we are alone in our advocacy. Linda and I are so busy doing our things for Liv, Grace and the other three that we sometimes don't get to talk about goals, details of therapies and fears of what can happen.

Each person is their own island it is said, I guess dealing with autism puts that island further out in the ocean...or the universe.

Refugee, Part 2 (The Promised Land)

We had made up our minds that the area we had lived in for almost 12 years was not going to be a right fit for Livie. Now came the epiphany that we had about 4 months to find a new house, prepare and sell our old house, pack and move!

We made about a half dozen weekend excursions to Monmouth from before Memorial day until just after the 4th of July. After a dozen or two views, we kinda settled on a slightly smaller house in favor or a fantastic location, on a cul-de-sac with a family with four kids across the way! Even better, 4 of the 5 schools our kids would be attending were less than 1/2 mile from the house; that compared to 15-45 minute bus rides at the old house. I suffer the greatest with the commute, anywhere from 55 minutes if there is absolutely no traffic, upwards from 1.5 hours all the way up to the current record of 3.5 hours when a major artery is closed.

Meanwhile, we interviewed a couple of real estate agents. The first one, I wish I could have recorded! Your typical upper-middle age real estate with an aversion to germs. We found this out when she came to the door and I announced to her that we had a cold going through the house. Actually, it was Strep, I think. Me with my best Eddie, from the National Lampoon Vacation series saying "Yea, she's got a lip fungus they haven't quite identified yet." Her hands shot up like a surgeon who had just sterilized, she would touch NOTHING! She walked around the house like this sterile surgeon, not touching a single surface, she made ME open all the doors! I think she went through a half bottle of Purel. Clearly she wasn't a match for our 'infestation'.

The next lady was quite nice, smaller agency, but she seemed like she could sell. Before we signed though, Linda remembered a fleeting comment one of our ABA therapists had made. She had loved our new addition (my new addition, I LOVED my new addition ) and had said "let me know if you ever want to sell." As those who go through early intervention with therapists coming into your house, you get to know each others' lives pretty well, and we weren't sure if her and her husband were ready for the financial burden of a house yet. Long story short, we asked and she lept at the chance. What friggin' luck! Selling our house with no agent, no commission, sight, all-too-often seen!

OK easy part done now comes the NIGHTMARE! A house full of stuff accumulated over 10+ years. We are NOT organized, we hadn't intended to move not 3 months ago. We had recently expanded the house and commensurately the junk had grown (clutter is organic and expands as does other things in our household as I have previously explained). We had begun to clean up in anticipation of trying to sell, but now it was a full scale emergency.

We rented a self store, filled that up in a heartbeat, got a 20 foot dumpster, had to jump on that the night before to get more stuff in. Remember, through this Late July through August, Linda STILL has and infant, a pretty hectic 20 hour a week ABA habit, and three other kids to boot! I'm taking days off when I can, but I'm saving most of my time for the big move. We hired movers and had them help us pack. Registering for school, getting closings ready, major project going live on Jan 1 for me at work. Our lives were this cyclone of MADNESS!

The day of the actual move was the zenith of the craziness. More like, it was the spot on the roller coater where you finally hit bottom and you are just deciding that this was about twice as fast as you wanted to go...but there ain't no going back now. The movers were late and kinda underestimated the time needed to pack up the vans and get down there (I'm STILL packing stuff while their moving boxes etc out). Luckily we did not have to have the place completely
The caravan gets down to the new home around dusk. I can remember making snap decisions about where things should go, no tools to remove doors, something about not being able to move our fridge into the kitchen, vague memories about being talked into having the vast majority of the boxes loaded into the two car garage (note, the garage is STILL half full with boxes nearly TWO years later!). I just wanted it done, and the movers out of my new house and new life.
We survived that day, night and most of the ones since. Liv did have some pretty major regressions over the months before, during and after the move. The other kids have learned to adjust. Aly, in particular is slow to warm up to people and make friends. She had a few friends in Sussex Co; now she had to start all over again. When her one friend here moved away recently, both she and we were heartbroken. Dillan and Jason now have four boys to play with in the family across the street, another just a fence jump away. I envy the endless summers they are having and will enjoy in the future; they have the run of the cul de sac, a football sized playground from our backyard across the cul de sac into their backyard.

Well, there it is. I cannot do it justice, the absolute insanity of that summer; but here we are with twice as much as we could ever dreamed of as far a services for Liv compared to our old house. For that, I'll never regret the move...

Refugee, Part 1 (Oppression that drove us from our 'country')

I was inspired by the Mother'sVox post AUTISM MIGRATIONS to recount my exodus from the oppressive, conservative-minded viewpoints of the northernmost part of the NJ to the more centerist leanings (more leftist in its taxation and spending of revenues) of of my new home in Monmouth County NJ. I gauged it out, and it looks like I can have a blockbuster and a sequel. There's just too much to cover on one post.

It was the best of times, it was the worst of times. We had a house that we adored and a 40 minute commute I loved. It was 'God's Country' up in the northwest corner of the state. We had been working for the past 10 months with early intervention for our daughter who had been diagnosed autistic just under a year ago. We had a very good team for Livie; but it was to be swept away at the age of 3.

Our first meeting with the township social worker was not exactly reassuring. He had reluctantly confided in us that this was his first transition from an early intervention into a preschool setting for an autistic child. Great, maybe we mold this township into a model of autistic services (no, really, I wasn't being sarcastic at the TIME!). We had done our homework finding various districts who we agreed with their processes. We were mostly looking for the Verbal Behavior method of ABA and had about 5 schools within a 45 minute radius that we wanted to look at and another 5 we had as a backup to appease the budget gods in the town before we backed them into a corner and forced into our way of thinking.

We gave the social worker the list, all ten. He said he would contact them and see if we can arrange a look-see at them. He got back to us about a week later with a much MUCH shorter list. This one was not accepting any new ones, that one we couldn't get etc etc. We were down to 4...ALL from our 'backup' list. We dutifully went through three of those and had one that had basically 'play therapy and one that focused on the Miller method. Neither was even close to what we were looking/hoping for (preference was for a Carbone-type ABA).

The one we finally chose was the Miller location. It was a 35-45 minute bus ride for Liv, but the people seemed genuine, the parental support seemed OK and the program somewhat promising. We signed on the dotted line.

We got out of the IEP with decision in hand, we were somewhat celebrating, my mother-in-law was watching the kids, we went out to lunch. We had navigated the IEP process and we had Liv enrolled in a school. We talked positively about the outcome through lunch, mostly the ins and outs of the meeting itself. We left the restaurant and headed down the highway toward home. I had an overwhelming sense of impending, not doom, but mediocrity. I finally said "We settled, didn't we.... remember all the things we wanted? Remember the schools and the ideas we REALLY wanted? Remember the schools that we were going to look at 'just for comparison'? Well, those were the schools we were CHOOSING from."

"Where can we go though?" Linda said in desperate realization.

We had paperwork upon paperwork on autism, and we were accumulating a large 'Favorites' folders of things to read on the internet whenever we had the chance. One of the things we had was a COSAC of NJ list of recommended schools. Great little piece of info telling what method each school system followed. Linda was browsing through this list and asked me how far down Monmouth County was. I cringed, most of my experiences with Monmouth were in the southern half and my commute would have been a minimum of an hour and a half. "They follow CARBONE in this town!" she sad excitedly. So, I looked up the town, just to appease her, she knew the outer limits of commute time would have been an hour (no traffic). Luckily, it was in the northern part of the county, just under an hour commute with a tailwind, if no traffic, and if no state troopers!

We began looking to fit this very large square peg into the small round 'holes' of houses in the neighborhoods serviced by this school.

OK, good breaking point. Stay tuned for Exodus II- The Search for Services coming to a blog near you ....

Autism night at TGI Fridays in NJ

I'm moving this one back to the top so that all you Jersey folks might try and get a good meal next Tuesday (TGIF may never be the same again ;))

***UPDATE*** Fortunately for TGIF, we were not able to attend, I got stuck trying to get around all the flooded Passaic River bridges in Paterson. HERE'S a link to TGI Friday's comments section so you can all tell how happy you were to here this was done in NJ and maybe they can do it nationwide next year!!!

This one came from our old therapist who is trying to disseminate this information for an obviously strong, and in her way, courageous young woman. I will use my very limited audience to help spread the word. I haven't a clue why this did, but it made me well up that this young woman saw this opportunity to help those families affected by autism in a very small and personal way, hope to see you there (the TGIF in our area will never survive the 7 of us going there, but we may just try):

To Whom It May Concern:

Could you please make copies and distribute this letter and flyer to all the families in your school. Also, if people could spread the word to their friends and family who have children on the autistic spectrum that would be excellent!

My name is Alexandra Abend and I have an 8 year-old brother with autism. I am a Junior in high school at Kent Place School in Summit, New Jersey. I was elected 1 out of 44 girls in the entire country to participate in a women's leadership conference hosted by Mount Holyoke College called Take the Lead. At this conference we were each asked to come up with a social action project topic. My action project topic is making families affected with autism feel comfortable and able to enjoy a relaxed family dinner at T.G.I.Fridays. I have already spoken with all the general managers in New Jersey for T.G.I.Fridays and they are all on board for the project. It is called Autism Family Night; it is taking place on April 17, 2007, it is only taking place in New Jersey this year. The families can go to any T.G.I.Friday's near them on April 17, 2007 with the flyer in order to make their meal more enjoyable.

This is important to me because my youngest brother was diagnosed with autism six and a half years ago and I have been extremely involved with autism and other special needs ever since (five years ago my father and I started a Sports Clinics for children with special needs and we have been running it ever since).

This project sometimes sounds confusing because people ask, “What's the project?” So, to make it clear, all I am doing is designating a day during Autism Awareness Month (April 17, 2007) for families affected with autism to come together and enjoy a relaxed family dinner without feeling stigmatized or uptight. In an effort to make the night more enjoyable for the families, I have given all the Friday's in New Jersey information to disseminate to their staff, which explains autism and some associated symptoms. This project is very special to me, and in order for it to work I need your help in distributing this flyer.

If you have any questions you can contact me at abenda08@kentplace.org, or if you receive any questions about the event you or those people can contact me at that email address also.

Thank you for your help and support.

Alex Abend

BTW, I have a PDF FILE of the flyer she mentions (yea, it's on COSAC's site finally).

Health Crisis or Crisis of Opportunity?

I started writing this as a reply to Harold Doherty's blog on the impending health crisis brought on by the increased diagnosis of autism and the lack of urgency in both the US and Canada for the generation about to impact the coffers of both countries as they turn to adults. I decided to see if I could expand it into a cohesive coherent post (fat chance, but here it goes anyway!)

I fear that Ms Dachel is more concerned with trying to prove the mercury/autism link than trying to help those affected by autism. She's trying to 'save' those poor souls about to be impacted by a lifelong illness and if she could just garner enough support, a 'cure' could be found. In short, she favors finding causations over treatments. While her goal is admirable, you don't just 'find' world peace or a single cause or 'cure' for autism.

We do indeed need to find better ways to circumvent, to mitigate, to eliminate symptoms of autism. The inability to communicate, the self injurious behaviors, the sometimes violent outbursts, the inability to concentrate, the lack of life preserving fear are some of the things that need to be worked on to improve the condition for autistics and their caregivers. But isn't it more an educational and societal crisis with some medical undertones than it is an health epidemic of mythic proportions as Ms Dachel likes to portray?

I would also like to put forth that those autistics writing essays may be some of our best advocates. The ones that can show society that these people are not just mere throw away, institutional-bound burdens on society. If we can get past the communication issues; the self injurious and violent behaviors; the ticks and stims, we do have potential productive members of society. Even if these autistics are the exceptions rather than the rule, don't they serve as benchmarks to show what CAN be achieved?

Part of my problem with this whole impending 'crisis' attitude as if pertains to the aging out of these 1 in 150 is that we honestly don't KNOW how many more children are seriously impacted. Do we truly have a large upcoming adult population of autistics that will need services or do we just have a handle on classifying a group of people that were just there to begin with? Do we have a brand new entire group of non verbal autistics coming up that will overwhelm the system with tsunami-like power? Or do we have better classifications of those formerly labeled as mentally retarded who now have an opportunity to be better helped because of the new classifications?

I honestly don't know what the next 10 years will bring. I'm pretty sure it will be somewhere between the budget shattering catastrophe that is being predicted by Ms Dachel, and the Y2K dud of a firecracker being foretold by some on the autistic advocate side. We simply don't know what positive impacts early interventions will have; everyone can agree that widespread early intervention and early diagnosis for that matter have only been around for less than 10 years. Most of this new 'autistic generation' aren't even teenagers yet. We simply don't know the impact of having many kids 'reclassified' as autistic instead of generically mentally retarded will be. Will the better understanding yield better results? We simply don't know how many quirky kids were missed in the past who were really the Aspergers we classify them as today.

Granted, there are enough challenges facing us over the next 10 years with regards to autism to fill a stadium. We do need better strategies for therapies for each 'color' of the spectrum. What we don't need, however is someone telling everyone the sky is falling or is about to fall. We need people like yourself, Mr Doherty, to get up there and show Parliament what you know and what needs to be done for these groups. I have no doubt that you have, you do, and you will continue to advocate in the future. We have their ear (somewhat anyway). Let's not shout in it, let's talk it through with them and work to mitigate this autistic Y2K bug on the distant horizon.

Just A Boy

I met a father and mother with an autistic pre-teen in the doctors office. We spent a little time talking to the parents and the one thing that struck me was the mother saying, that he understands EVERYTHING. He was non-verbal but looking at him and his mannerisms and his eyes, I could tell right away that he was there inside. He had great difficulty getting himself 'out', to say something, to react and interact with the environment we have for him. I told him as he was going in "See ya, do your best". I really did not know what to say, I had no magical words of encouragement to make him understand that he could maybe get passed all this.

I'm sorry all of you that find the the good in these situations; believe me, I find the same joy there as well. But this child NEEDS something. I'd like to say 'cure' but I know that is not the PC thing to say. But his autism is paralyzing him; MANY children are being paralyzed by the symptoms of autism. I'm not so sure that "hey, we're happy, everything's going great here, thanks" is the attitude to portray to everyone. I know, the 'life's horrible for the parents' angle is no good here either, but what about for the child? How can we extricate him from his prison? What if, God forbid, his parents are not as in tuned, financially stable or patient as the parents I met. Can society find and help these kids?

I dunno, I know I should not feel pity, but I did. I felt sorry for his situation, that he may never find his niche in life. Just like the NT may not find the right profession, the right soul-mate, the right education to achieve all they can be; it is 100X more difficult for an autistic person, especially one as profoundly affected as this child. I'm glad he had seemingly caring parents and he will gain every opportunity they can give him, I just fear for him because I think I know what he could be capable of and what his chances of actually achieving that capability are.
Sorry to be on a downer just before the Resurrection, I just hope he can find that miracle that will bring him new life...do your best...

What Do You Say?

Linda was in the local Toys R Us the other day (along with supermarkets, these stores give her 'Frequent Shopper Supreme Express Concierge Service' due to the six figures of extra revenue she brings into the stores each week) and again was on the line, when the cashier began engaging Grace. "Oh how cute, a pretty princess! Isn't she the prettiest little princess!". Linda tells me this woman has cute-sily verbally accosted Grace several times in the past and this day was no exception. When it came to payment time, Linda noticed one of those scanning donation flyers for Autism Speaks and decided to give. "Oh it's a worthy cause, a very good cause" the cashier said (Imagine the voice of Fran Drescher and you got the idea-r!). Linda says "Yea, I know it's a good cause. My 4 year old has autism and Gracie here is PDD."

Suddenly the air rushed out of the conversation and the women became silent and visibly flustered. So much so that she packed but forgot to ring up two DVD's she was buying (we took this as HER donation for autism). No more princess, no more cutesy comments.

Linda came home and said she was disturbed by the incident. I said "Well, what kind of response were you expecting from her? 'Gee, I'm so so sorry?' ' Wow she doesn't LOOK autistic.'?" In the woman's mind, she was put in the same position as saying "How's your husband?" to someone who just got divorced, lost him to cancer, or is going through some other unexpected trauma. You're stuck for words. "You're better off without him"; "He's out of pain?"; "You know, they're progressing so fast on that" Those lines could get you in deeper trouble than the "How's your husband" line that started it.

It got me to thinking, what response should Linda have given HER? With Autism Awareness Month on the doorstep, we all have a duty to raise consciousness about who our kids are and what we have to do to get them ready for the world. I was trying to think of a one liner, a quick superficial type comment that could resonate with the woman long after Linda left and would hopefully still be ringing the next time her or another parent with an autistic child came in the store. Something like "Yea, some autistic kids might throw tantrums because of the florescent lights, Gracie just tends to repeat entire Dora episodes and is not good with conversations with strangers, but hey, what kid LIKES to talk to strangers!" A little too long but close.

So, I'd like anyone's suggestion for trite, quick and impactful statements to use in the month of April; it may not get us free DVD's but it WILL help get the word out...

Conscientious Objective

War has been declared against those who are technologically challenged. We are bent on removing all indications of computer illiteracy. All children of parents afflicted with this disease deserve your pity and support. Many of these parents have been brought back from the brink of certain lifelessness and can be taught to behave like all of us online...

We must understand and accept those with bi-polar disorder. These bouts or euphoria and depression are not a problem to be fixed, but a way of being to be understood. We should allow them to decide for themselves if they wish to change.

Neither of these two statements make real sense, but in essence that’s what ‘battle’ lines are being drawn between the neurodiverse and many other groups advocating an all out war on autism. I'm really not trying to get into a discussion about what analogies can be drawn between bipolar and autism, I was just trying to make an extreme comparison to some non-life threatening (bipolar can be, I think) neurological disorder.

Wars are society’s way of mobilization, I know it’s not right, but what other metaphor do we use? War analogies provide rallying cries, stir feelings, promote conviction and imply a grand effort. But I guess what’s at the core of the discussion is the connotation that war brings. It’s the fact that the terms are too strong and negative to be used.: War, Battle, Combat and, what’s really at the core of this discussion, the word ‘HATE’.

But there is a war of sorts being fought for services, for awareness, for tolerance, for better diagnosis. I guess that's where the difference is, we are fighting FOR someone and not necessarily AGAINST anything except maybe fear, ignorance and prejudice-- against society’s perception of autism.

I guess you could rally around a relief effort banner; it’s the only other time we have mobilization. But like the tsunami, a relief implies some kind of disaster; and the same way you can imply a war against autism you can mis-attribute the disaster to those people on the spectrum rather than the condition of services, diagnosis, and insurance coverage.

We clearly have to step away from the 'autism is the enemy' type of speech, as well as the autism-as-trainwreck language. Autism, regardless of your views on causations, is a lifelong way of being for autistics and we can see how the language is received by those on the spectrum. I used to try the ‘hate the disease, love the child’ creedo, but that would imply that :
A: it is a disease and:
B: you can separate it from the child.
I can accept neither statement at this point. It is a disease only in that something is preventing her from communicating to the best of her ability. I can separate it only in that I can see past what’s blocking her from me.

This brings us to the ‘passive’ side of the discussion. While every step of the way, I want my girls to feel that they are sliced bread cubed (mathematically not culinar-ily), I feel I owe it to them to push every avenue I can. I want them to know that we have tried every reasonable approach. That something as trivial as money was not an obstacle; that time was not a consideration. “TO DO WHAT?”--- you and me and my girls figuratively ask? I want to improve their communication, their concentration, their mood, in short, I want to improve their chances in life.

My wife and I come from similar backgrounds; where praise was sparse, excellence was assumed and more was expected. Blame it on my roots…we’re pushing the girls the same way we push the other three. Not towards normalcy; just toward their excellence.

So can we use the war analogies? I think not. Too many battles are raging in real life with real people fighting and dying. War analogies have been used too many times to stamp out monsters like polio, small pox; to fight cancer, leukemia, muscular dystrophy. Leave the war analogies to the killers and maimers. Let autism fight the fight of passive resistance; but nobody’s gonna stamp out my girls in my lifetime…

Meanwhile…I think I’ll teach my dad how to blog…

We've Forgotten What's Normal

I have three of those T-shirts that Linda had the kids make for father’s days past; you know, the ones with the hand prints of your kids that say "Best Dad, Hands Down"? I have one from mid 1999 with one set of handprints; one later with 3 sets of prints: then one with 5 sets. Linda and I were married in '88 and we had 5 years of childless bliss; then we had Aly and had 5 years of a single child (childfull bliss, not quite, but still fun). Then, in the course of 5 years we had 4 more.

In the first 10 years, we had given ourselves plenty of time to adjust to new phases of life; these last 5 years, life has barely given us time to breathe. Someday I detail it out, but today, I want to focus on trying to find out which way is up, and to see if anyone else is suffering from this 'normalcy vertigo'.

These last three years, we have been transformed from a large, 'normal' family, to one dealing full time with special needs children. We've learned more than we've ever expected (or wanted) to know about ANY disorder. We have readjusted our outlook on the future. We have re-geographied ourselves. We have had to reassess what we considered 'normal'.

The 'What to Expect...' toddler/ preschooler books are now in the landfill (maybe I’ll write “What to Expect, the Autism Years”). Potty training, formerly fretted over at 2 or 2 1/2 , is now almost a far-fetched fantasy. Imaginary play that was, in the past, a source of amusement and endless game playing is now a mere memory and something relegated for the 'older' 3. Some many things taken granted for the first 3 times are now things we must scratch and claw for.

Despite, or maybe because of, the mayhem, I have found myself hyper aware of every advancement they make, perhaps 10 times more than I relished accomplishments of our first. Talking, reacting, imitating, defending their ‘turf’- once milestones that were whipped by at 70 mph are now watched with dumbfounded deliberate exuberance, like teenage boys passing a hitch hiking girl in a short skirt. I somewhat feel like a cured cancer patient who gets a new view of life; he may have half a lung, but he has a whole new perspective on the world.

I feel torn, because I feel bad for the older three. They had several years of normalcy before being thrown around in this storm. But they are young, strong and resilient. They do take it hard sometimes, but from the autism perspective, they take it in stride and are regulars at the monthly sibling support group at Livie’s school. They miss out on so much though; so many lost opportunities because we are tied both financially and physically to caring and development of Grace and Liv.

It’s like having two families; maybe something like merging two divorced families together. “We did things like this in the past but now things have to be done this way because of the ‘other’ family”. Except, like a dog with 3 legs, we know nothing else; we hobble along as if it was never an issue. We/they take it for granted that outings must be planned for far in advance; that disappointment over missing things because of time constraints is sometimes the norm.

I could go on and on with the details. Maybe I can do a “Child of the Month” and detail out their unique ways of dealing with this autistic life. But anyway, as you probably have already said to yourself “What is ‘normal’ anyway”? With extended families, weird relatives, divorce, gay marriage and adoption, single parent households, grandparents/relatives raising children, there IS no such thing. We had felt we were out of the ordinary because Linda and I have maintained our marriage for almost 20 years; now we’re not normal for another reason: 2 autistic kids. I guess I wouldn’t want it any other way…

Freethinker

I had to write a note about Liv's recent independent forays into the world of cognition.

Last week, she made a leap in her PECs program, Picture Exchange Communication System for those who do not know (including me, I had to look it up!). She had been working off of picture from the cover. But last week at school, she found her cover empty, so she proceeded to open her book and go through the pages until she found what she wanted and pulled off the picture she wanted! Her teachers were shocked because no one had been working on this with her. To make sure it was not a fluke, they tried it twice more and both times she picked out some different things she wanted. She also repeated it at home this weekend!

OK, one thing is...one thing, but another thing is ANOTHER THING! Today, she came in from riding a bike with Aly and the therapist. She was thirsty and when no one was quick on the draw, there was a cup and a small bottle of juice on the dining room table, so...she just poured herself a glass! Again, nothing she was working on; this is no where close to what she normally does. Her fine motor has been getting better over the past month, but this was unexpected!

It's obvious to us she is paying attention, she's just picking this stuff up from watching us, her teachers and, oh yea, her little sister. Both Grace and Liv have been playing with some kid percussion instruments lately. The teachers say and we agree that we have to push her a little more, she's really beginning to progress and maybe she's just bored and needs new challenges.

Sorry to fill a post bragging, but you have to sit back and admire the view when you hit high ground!

Bill

Prescription for Success?

Linda made a comment this morning that somewhat shocked me: "For the last few months, Liv has been off of all prescription medications she'd been on since 2004"! We have fought to loosen bowels then fought to solidify them; fought with reflux, vomiting, inflammation as well as pain and supposed allergies. She's been on Xantac, Singulair, Miralax, then Sulfasalizine, Pentasa, Prilosec (note: correct spellings on pharmaceutically-invented names has never been my forte nor priority). We have run the gamut to try and help her with her gastrointestinal issues

Today, she has had far fewer night wakings, better moods, quicker cognitive processing time. Most of her bowel movements have been regular; if temporarily blocked, instead of a 'prescription', we are instead using slightly larger doses of magnesium than her normal daily dose and she is clearing up.

Yea, I could attribute all of this improvement to growing out of the 'gut' phase; yea yea 'no epidemiological study has found a connection togatroinblahblahblah'. As always, my problem with epidemiological studies of autism is using the whole of the group to study and dispute specific issues. If entire set A is not caused by or have symptoms of thing B then the broad relationship is disproven, but the specific issue for specific subsets remain. Kinda like trying to find out what causes cancer by looking at the whole 'cancer' group. Autism is complex (IMHO, of course) and no simple solution nor symptoms exist. It could also be that the stress of being non-communicative is causing some GI issues. Anything except what we are doing could be the thing that could be helping her.

In other words, my belief in the vitamins/minerals helping her GI issues (according to some people) I am the same as a baseball player with a hitting streak with very dirty and smelly socks because I have not changed them for fear of breaking the luck. Problem I see is that much of what we are doing is not irrational bead-counting, it's common sense nutrition. It's more like the extra batting practice or a new stance in the batters box, more science than superstition. Ooooh, baseball's coming soon! Not a fan per se; more a fan of the IDEA of baseball, a la Field of Dreams, the Natural or Bull Durham.

I won't get into conspiracy theories that state that big pharma will bury 'home remedies' in order to push their own, study-backed, and infinitely more profitable versions of 'cures'. Nor will I rail further on the hypocrisy of for-profit companies controlling what and how 'cures' are brought forth and are judged more on how much they will make than how much they will help. Sorry... I got into it and railed...

I guess the difference in our maturity in this quest to help Liv is just that. We are no longer trying or doing things to 'cure' her of autism. We are doing things to help her mood, to better concentrate, to make her feel more comfortable so she can help herself.

Trying existing pharmacologicals, natural or otherwise, to solve problems either not covered by specific prescriptions/therapies or inadequately covered by them. That's how I would define our involvement in biomedical interventions at this point. I'm surprised how many of those you would not suspect, are really closet 'biomed' parents as well.