History of the Son-Rise Program

I thought I'd share this information about the history of the Son-Rise Program from the Autism Treatment Center of America's website.   My husband and I are fortunate enough to attend the program in June.  We are excited to go!  If you were an adult in the 80's, perhaps you saw the movie, "Son-Rise:  The Miracle Continues" on NBC.  There is also a book written by the author with the same title.  You can find an Amazon link for it in my "Recommended" books list on the left.

Here's a link to the history of the program: http://www.autismtreatmentcenter.org/contents/about_son-rise/history_of_the_son-rise_program.php  

Officially vs. Reality

So I've given you a run-down on what Autism is officially, but as is said, "If you know one kid with Autism, you know one kid with Autism".  This is so true.  Both of my kids are completely different from one another, despite being, ya' know, brothers 25 months apart.  What is Autism like in our household?  A clown-car except everyone's got their own agenda.

Luckily, neither of my boys are self-harming or injurious, and they both like affection.  Bernie's kisses are like the ones he sees on TV and would sit in your lap for hours, and Clark will sit in your lap for a minute, but he loves to lay in bed with Mom and hug, rolling like a trapped alligator but I'll take it.  I totally attribute this to breastfeeding them for so long, and co-sleeping until the next one came along.  Of course, at times I wondered if these things caused Autism but I'll do myself a favor and think otherwise.  A lot of Auties can't stand to be touched.  Yeah, in addition to being an Autism mom I'm also like the mom on that lame Time magazine cover.  They are secure and they are very much loved and accepted for who they are.  Some kids are terribly self-harming but if you've seen an Autistic kid bang his head, you'll notice he'll do it with his forehead....this is not a place you can actually do much harm.  It's a way to communicate something.  A parent's natural reaction is BIG when this happens but if you don't react the behavior might stop.  Some kids will pick at their skin until it bleeds because they have sensory issues.  Thank god we don't have to deal with these things.  Like seizures, it would be very hard to watch your child hurt himself because of something they couldn't deal with in a different way.

We are so very lucky.  Our boys are generally happy, and only get upset when they can't communicate, but this comes out in whining or crying-just like a baby communicates....It makes me cringe when people refer to Autism as a behavioral diagnosis.  No, it's a social and communication dx.  Behaviors aren't random.  There's a reason for every move we make.  Some days Clark can whine, fuss and cry all day long.  Bernie can display a bit of a temper by screaming or slamming doors.  At one point, we'd give him time-outs and make him sit in a chair for the number of minutes that corresponds to his age in years...the timer wouldn't start until he quit fussing, but as he's getting older this isn't very practical anymore.  He needs self-calming strategies.  He's learned, at home and at school, to say, "I need a break" and then leaves the situation until he's calmed down.  We're also starting to teach him methods like deep breathing, and counting to ten.  He's signed up for a yoga class in August, so hopefully that will teach him some more ways to deal when he's overwhelmed.  With Clark, we just make the sign for "stop" and say "No whining!" and generally he stops, but you really have to keep on it.  It's always in a situation where he's not getting what he wants fast enough because he doesn't have the words to ask for it.  It's frustrating for him, but he needs to learn that communicating by other means gets him results faster than crying.  So we move slowly, act confused, tell him to stop whining.  We generally know what he wants so we encourage him to label the item.   It's taken a lot to get to this point with both of them.  It's getting less chaotic.

I'll start with the B.  He's so damn smart.  He's above his peers academically because he's always had a fascination with numbers and letters.  He can spell any word he sees and has been reading for over two years but can't really verbalize what/if he comprehends.  He memorizes movie dialogue and books and used to talk exclusively using lines in context.  I hate to say it but he's learned a lot from his favorite movies.  He knows different emotions and facial expressions because of Thomas the Train...each train has a different face and personality to match.  Many Autistic boys love Thomas for this very reason.  Sort of on that note, he's never spontaneously said he's cold or hot or hungry, etc.  We ask a lot of questions.  Too many and a habit we need to get out of.  Maybe he would express these things if we weren't so accommodating in this regard.  We'll have to start experimenting.  It's a natural thing to not want your kid to feel hot or cold or hungry.  He's turning seven this summer.  His language is a lot more functional now, but we're always working on it.  Conversation is the final step in speech development and he's getting there.  This is the reason we pushed for his regular education inclusion time to go from 15% of the day to 80%.  This is why eye contact is so very important.  Children much younger than him will have 30-40 conversation loops in an exchange.  For example:  kid:  why this?  mom:  because.... kid:  oh, cool.  That's one loop.  We're NO where near 30-40 loops, and we're actually working on him answering -wh questions.  If you ask him why he'll give a totally inappropriate answer that generally has nothing to do with what you're talking about.  We've got a long way to go.  We always have to encourage the eye contact and ultimately this will help us get there.  Much goes back and forth between the eyes without any words at all.  He may never talk like you and I do, but that's okay.  A little kid down the street asked me, "Why does he talk like that?"  Me:  "Like what?"  Kid:  "A hooligan."!!!  I asked him to explain what he meant and he didn't have a clue.  Too funny.  He also reverses pronouns so we take him literally and encourage him to say it properly and then react appropriately.  For example, if he wants an apple he would say, "Do you want an apple?" and we'd say, "No, I don't want an apple.  Do you want an apple?"  He'll answer, "Yes!" and then we'll make him say it correctly.  Nothing's easy, but it sure is interesting and a lot of times, downright entertaining.

Clarkie is more of a challenge because at nearly 5 he has no functional language, and very limited functional communication.  His receptive language is fairly good.  I assume he understands nearly EVERYTHING I say.  Whether or not he chooses to respond is another story.  If I ask him if he wants candy, he's ready in an instant  Because of the language deficit he has had many behavior issues but we are seeing less and less of them as he learns, and we learn.  He also has a lot of sensory-issues, and isn't potty-trained.  He has a lot of exclusive behavior, oftentimes referred to as ''stimming" or "-ism's".  He spends a lot of time in his own world, but since using what I know thus far about the SonRise methods without even attending the program, the time has lessened.  Exclusive behaviors are behaviors a child does that don't include anyone else.  Currently, Clark's stims are jumping, galloping, circling objects or people, shredding paper, and picking a blade of grass and playing with it.  These are things he does to escape to his own safe place, ruling everything else in the world out.  The Son-Rise program has a very unique way and it's basically the premise of their methods on how to deal with this.  I'll talk more about it in an upcoming post but the results I've seen from implementing it have been surprising and amazing.  He's progressing.  He'll now grab my hand and lead me to something he wants....not yet pointing to things,  but this and climbing were how Bernie began communicating.  A step up from crying and whining!  We're hearing a lot less of that too.  I love it!  I've been assured language will come for him, and it's just now starting to which is really exciting.  The person who told me this also told me he's so far behind now that he'll always be moderately intellectually disabled.  I'm not buying it, and on that note, why would we continue to do what we've been doing, therapy-wise, if that's the prognosis?  I think they call that the definition of insanity!  I'm not pressuring him with any expectations, but I have nothing but high hope for him.  Another really good thing for Clark especially is our newly fenced yard.  The kid could spend all day long outside, and this gives him control which equals happiness and confidence....for all of us.  We've worked hard lately on creating a "Yes" environment in our home instead of always having to say no.  We used to spend an exhausting amount of time saying "NO!!" and putting out fires.  Recently, he's started doing simple puzzles and playing appropriately with toys which is thrilling.  Way better than just destroying the house, and trying to drink cleaning fluids or eat dirt all day!  In just the last week, on three different occasions he's been scolded for destroying something (and very gently the third time because I started to see his lip quiver) and has gotten instantly visibly upset.  This is a great thing!  He's finally getting it!  He's letting me know I don't have to be loud for him to hear!  He's becoming more and more cognizant!  He also has started singing recognizable songs to himself (his version of the words), and pointing to things and identifying objects you ask him about.  I'll be damned if he doesn't know his ABC's.  He is such a beautiful child.  He's got the face of an angel.  Life is improving.  Everyone is happier.

I spent a lot of time being miserable and self-destructive and just not knowing what the hell to do with all of this, or if what we were doing was the right thing or not.  I finally feel like we're getting somewhere even though we've come a long way.  Still so much of a road to travel, but I feel like we're finally past the nitty-gritty dirt part full of potholes.  I'm excited for the ride now.  Who could ask for more than that out of life?  This is leading in nicely to what I'm excited to start sharing in my next posts, and the reason for starting this blog:  The Son-Rise Program.  Stay tuned and thanks for reading!         

Strep titer negative...please let the hacking loogie thing end as quickly as it started.

This seems like a perfect spot following my last post on what Autism is officially to talk about co-ocurring issues with the diagnosis.  It's classified as a mental condition but I totally agree with the fact that it all stems from medical issues, whether it's genetics or auto-immune related.  About a month ago, Clarkie was half-sick for about a week; low-grade fever, and tired.  Not quite a cold, but sort of.  Anyhow, he slept it off, and about a week later started this grating hacking a loogie sound.  You know the one;  usually heard from old men who no longer give a shit.  Ahhhh!  It continues!  It's very loud and at times he does it over and over again.  I'm actually starting to be less bothered by it which is a good thing, but damn, I hope it goes away.  When it does, most likely something else will take its place.  That seems to be how it goes with him.  He did it the other day in a store and a lady laughed.  It's especially noticeable in public situations.  I generally do a good job not caring what other people think....but it's SO loud!!!  Anyhow, I started thinking about it and poking around on the internet at Tourette's...generally thought of as people shouting out the eff word in inappropriate situations.  Tourette's is officially diagnosed if a tic lasts at least a year.  Throat clearing is the most common tic there is!  Then on a forum parents were discussing how their child has done this for YEARS!  Oh, God!  Kept looking (what else can I do in the evenings while Daddy's watching Transformers?) and came across a doctor who treats Autism as well as PANDAS.  I'd never heard of this before.  It stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.  It's a tic related thing with the most common tic being throat clearing!  Thought I was on to something, so had his blood drawn for a strep titer.  Doctor called today and no strep.  Damn, I thought all of this could end with an anti-biotic.  No such luck.  I tried Tums thinking maybe it was heartburn.  Tried making him drink water after he does it....doesn't dissuade him.  Autie parents are always trying to be cognizant of triggers for behaviors...Nothin' I can see.  It's random.  Sometimes he does it a lot.  Sometimes not at all...for awhile.  I don't react.  I don't even think he knows he's doing it.  He's certainly not trying to push my buttons or be annoying but....I guess it's just going to have to play out.  Most likely, as soon as I really get used to it, it'll stop.  I hope.  As soon as I quit hoping maybe....being conscious of it; Autistic kids seem to have a radar for other people's deepest thoughts.  I'm getting there.

Anyhow, Autism isn't just a mental thing.  There are numerous medical issues our kids can have.  Co-occurring medical things are:  "seizures (25%), subclinical seizures (60-80%), low muscle tone (about 30%), sensory sensitivities (about 30%), gastrointestinal problems (chronic constipation, diarrhea, acid reflux, abdominal pain in about 50%), and sleep problems (about 50%)."  This list isn't conclusive.  Dental issues are common.  We've dealt with those too.  Reasons for all of these issues can be found on-line if you're interested.  Between the two of them our kids have all of these issues except seizures, thank God.  I've read seizures can start at any age but in many cases don't until a child is older.  This would be especially hard to watch and deal with and I hope it never happens.

About three years ago we took them to a neurologist in Pittsburgh who is unofficially a DAN doctor....Defeat Autism Now.  His big thing was the mercury in our ecosystem.  He showed us a map of Autism rates in the US, and the highest rates coincided with the areas that burn the most coal, which emits mercury.  Where we live in NW Pennsylvania, New Jersey, and California via China.  Interesting.  The B was conceived about a month after moving here from Michigan though.  They take a bio-medical approach ranging from supplements to hyper-baric oxygen chambers to chelation to neuro-feedback.  We were sent to the lab at the Children's Hospital and they each had about 15 really big vials of blood taken.  It was expensive as our (very good) health insurance didn't cover the testing, and pretty traumatizing for the B.  We said we'd never do it again.  We haven't, and he gave us a pretty standard (for Autistic kids) protocol of supplements.  Testing results said their immune systems were like raging fires while for most of us it's simply burning.  This is a common thing with those with auto-immune issues.  The body starts attacking itself.  We tried it but they were nearly impossible to get into them.  One of the hallmarks of Autistic kids is being incredibly picky eaters.  I've heard of kids eating only one kind of cookie.....for years.  Ours are both picky but getting better.  Clark's meals are healthy but tend to be generally tan or white in color (common).  Only pork-chops (pasture-raised, hormone, etc. free), fried eggs (also healthy ones), raw milk, etc.  They both eat about ten things.  It's like a diner up in here at meal time.  Yeah, yeah, I know, hold out...don't give in, etc. but the options we give them are all healthy....and frankly, it's just another of numerous battles to fight.  I can't fight all the time, and they're getting better. Bernie eats carrot sticks as of a couple weeks ago!  Eventually, we seemed to be wasting a LOT of money dumping supplements down the drain, etc. so we stopped.  For the past year or so, we've gone gluten-free, dye-free, all organic, and started back up with the supplements; the ones the DAN doctor recommended as well as some others I've read about.  They're currently taking MB12, Omega-3, Zinc, Vitamin C, a "greens" vite, a multi, pro-biotic, magnesium and a couple others I'd have to get out of my chair to recall.  Specific reasons for all of them, but that's another post (I'll never do).  All of them are quality (and pricey)...so many of the supplements out there are just junk.  Bernie refuses to drink milk but Clark will drink raw milk, and that's healing and not a problem with the casein intolerance many Autie's have.  It's my firm belief for everyone that you are what you eat, and it seems it's getting a bit easier to get the supplements in them, and the more quality of a diet they eat, the healthier they are physically and mentally.  To boot, I've lost about sixty pounds and seem to have an incredibly healthy, on-track infant.  Clark's communication has increased a lot as well as his eye contact and functional play.  Bernie's behavior is atrocious whenever he has gluten now....I struggle with allowing him to have it at birthday parties and the like.  I give in so he doesn't have to bring his own cake, and then we pay for it for the next two days.

We're keeping on keeping on with all of this.  Autism is treatable.  A lot of people find this train of thought and action offensive; that their child is not broken and why fix what's not broken.  I just want to do whatever's in my power to have the healthiest family possible.  I'm the healthiest I've ever been since cutting out all the crap....not only food, but personal-care products and cleaning supplies.  Always learning and trying to do better.  Besides the actual parenting, it's my bag.  By the way, coconut oil and baking soda is the best deodorant EVER.

More info. and the quote above is from:  http://www.phxautism.org/understanding-autism/autism-and-co-ocurring-conditions/   

  

The Spectrum-So many colors and a lot of shades of gray.

I've been asked questions like "What is Autism?" but more often, "Where do they fall on the spectrum?".  The latter was the first thing I asked after being told the B was Autistic.  The answer was, "He's too young to tell."  Since then, I've never asked the question again because it doesn't matter, or at least other people's opinion on the subject doesn't matter to me.  The dx is not a static thing.  My kid's amaze and surprise me and grow everyday.  My kid's are who they are, and I can make my own inferences from the criteria for the disorder in the DSM-IV.  People have generally heard of both these terms, and unless it's a part of your personal or professional life, that may be about all you know to ask.  You probably have ideas of what it is from things you've read or seen in movies or on television.  Contrary to (popular) belief, all those with Autism aren't like Rainman with some extraordinary savant skill.  That's quite rare.  In reality, around 80% of those diagnosed also have an Intellectual Disability or Cognitive Impairment diagnosis as well.  It's separate officially from the Autism diagnosis, but is pretty much a result of it.  It's hard to learn anything when you can't communicate and prefer your own world to the one we're supposed to reside in.  I like this umbrella because it pretty much gives a succinct overview.  Although, the DSM-V is coming out next year with changes to the diagnoses on the spectrum, here are the specifics of Autism specifically according to the fourth edition:   http://www.autreat.com/dsm4-autism.html    .

By the way, despite the changes, which I believe are nearly set in stone, both my kids still qualify as straight-up Autists..  The revisions are going to affect those on the higher end of the spectrum diagnosed with Asperger's, which is a shame because these children desperately need all the help they can get too.  Here's a link about the changes being made to the whole manual:  http://www.dsm5.org/Pages/Default.aspx.  ASD's are listed under "Neurodevelopmental  Disorders".

Consternations, Realizations, and Love Songs

Nearly seven years ago, as new parents, everything was great and new and a learning experience, as it is for all new parents.  We coined him "Angel Boy" as he was the easiest baby ever.  Since then, I've heard a lot of parents of kids with Autism say this....."He slept all the time.  He never cried." etc., etc.  That was our B.  It wasn't until he was well over a year old when my grandmother's questions of, "Is he saying anything yet?  Is he walking yet?" began to get annoying.  And since, I've learned to never end a question about someone's child with "yet".....It's just annoying, and makes them feel badly if their child hasn't...yet.  No, he wasn't doing any of those things yet.  He hit all of his milestones late.  I chalked it up to him being born nearly six weeks early, and us not knowing how to engage him properly as newbs.  Finally, at around 18 months old, when he still wasn't walking or talking, my grandma mentioned the word "autism".  As a mother of four, and an incredibly perceptive person, despite her 8th grade education, I always listen to her.  We let it float around for a few more months and when the functional words still didn't come, we made an appointment at the Autism Center at the Children's Hospital of Pittsburgh.  Despite his being able to count to 100, identify all shapes and clearly name them, and say his alphabet, the diagnosis was easy for them to discern.  It wasn't terribly shocking but took a long time to soak in.  I remember asking the Early Intervention therapists again and again, "Is he really Autistic?"....The answer was always yes.  I didn't know much about it, and the learning began.

Clark came along just before the B's dx, and he was a totally different baby.  His nicknames were, "Cluck" and "the Raptor".  He was a squawker and really made the B seem like an angel boy.  He also hit all his milestones late, and again we weren't terribly worried about Autism with him.  What are the chances of two?  I now know that the chances of two are much greater than the chance of just one.  With every child, the chances are higher and higher.  One of B's therapists suggested we have him checked out, and sure enough another diagnosis.  No amazing memory skills with Clarkie, and at nearly five years old, he's still essentially non-verbal.  We began learning a lot from the wonderful people who came to our house from Early Intervention....their time was never enough though.  We started wrap-around services at the age of three for both of them when they weren't eligible for Early Intervention anymore, and we continue to do that to this day.  We have to fight for the hours we get and have a revolving door of therapists in our home.  In most states, these services aren't available, so it's like kismet that we happen to have settled here for Daddy's job, teaching college animation.

Our third boy is nearly ten months old, and is progressing quickly and as he should, but I'm always watching him and analyzing his every move.  It's what any mom does, but I'm not taking anything for granted.  If we start to have any concerns, we are way better equipped to get the ball rolling with him.   

Gearing Up and Background...

As I said in my first post, this blog is as much and probably more so for me....I used to keep a journal in high school and write down every inane thought that crossed my mind (big bonfire a couple years ago), and then came along the internet and finally Facebook with it's dashboard for quips and quotes and inane thoughts and Mae Westism's, but none of those venues are really useful for what I want to do here. Track and keep track, and share. Far away from family and most friends, and oftentimes the inner recesses of my brain while wiping up this mess and running to this appointment and that....here it is. And man, it's amazing how agonizing it is to work those muscles putting it on paper with pen after exclusively typing. Anytime, I am forced to write anything, my hand reminds me. My upcoming posts will share a bit of history from the beginning of this journey up to what has led us to this point....hang tight.

Everywhere you go..

I had a fabulous time taking Bernie to the race track last night. We were both excited although he was fighting a nap the whole way there. As soon as he saw it from the highway he perked up and was good to go. I knew he'd love it but wasn't sure how he'd do in a stand full of people....and with the noise. A week earlier I picked up some noise-muffling headphones and was quite pleased to see hordes of other people wearing the same exact ones....Us parents of these amazing children know and are delighted time and again that our kids are different (like when the little brat at the park yesterday morning shouted, "MOVE! Get out of my way!" My B would never say that.), but we don't always want to appear that way in public.

So we made our way to a spot that wasn't too high up and wasn't yet filled with people and settled in without any concerns, on my part, of dealing with a squirmy nine month old or a squirmy higher-maintenance Autistic 4 year old. This is why they weren't invited. And honestly, I don't think Bernie would've been ready for the experience at the age of four either.

Cars started heating up, making the rounds. The B started in on his "Cars" and "Cars 2" dialogue....with himself. I pointed out the tow trucks in the middle which he naturally likened to Mater. The stands started filling up around us, and a cute family of 5 took the bench right in front of us. It took about two minutes for me to realize the oldest child was quite Autistic. He started with a gentle slap of the bench....and then another, and another, and another. And then the hitting of his ears and slapping of his face, and finally the incessant "sit DOWN!" from the mother. The parents took turns leaving to smoke, and would always return at a steadfast pace as is typical of us parents....no dilly-dallying allowed....you're needed! To their advantage, the middle child was a girl and also seemed to be needed and had her hands filled with her older and younger brothers. They didn't last as long as we did, but then again, I certainly didn't expect them to either. We stayed until the B finally answered "Yes" to repeated questioning of wanting to go home. At that point, rain was falling and it was questionable whether the intermission was going to end...and after 10 p.m.. Neither the crowds or noise bothered him in the least. He was snoring in the car five minutes into the ride.

If 1 out of 88 boys are Autistic, you're going to see it virtually over and over again in any crowd.

Here I go again at another blog attempt.  This time I'm not focusing on toxins that are slowly killing us (a topic near to my heart surely), but something nearest and dearest to my heart:  my boys.  Namely, my boys with Autism  They are pushing 5 and 7 years old and have both been diagnosed since around the age of two.  I have a third boy too, but things are right on track with him at the moment, and we have nothing but high hopes....for all of them.  Those hopes are the sentiment specifically for the premise of  the blog.  We are all leaving in two weeks, babysitters in tow, to attend the week-long Son-Rise start-up program at the Autism Treatment Center of America.  I've found other personal blogs of parents using the approach we'll take on so very useful, and I'm sure they're musings/trackings/progress and set-backs are useful to look back on for them as well.  So here it is....hang tight while I learn to make the essence more appealing with links and pictures and stuff....I'll get there.