Life lately.....

Wow!  It's been nearly two months since my last post.  School started and everything changed so this is just an update to what's happening on Normal Street.  Bernie is doing great in first grade.  He loves school and is included nearly all day in the regular classroom and seems to enjoy every minute of it.  He's only out for OT, Speech, Social Skills and the occasional meltdown.  He has one on one help nearly all day long and the communication between me and his ASD support teacher is ongoing on a daily basis-sometimes several times in a day via email.  I like how his teacher's classroom is all about Clifford (the big red dog) and nothing else.  The walls aren't plastered with crap and I think it cuts down on distractions.  Tomorrow I attend the meeting to fight for his one on one help hours and I don't plan to do much negotiating.  I think he needs every second of it.  He still has some issues transitioning from preferred activities....playing soccer to lining up when it's time to go, or erasing an answer that's wrong.  He's also participating in extra-curricular activities.  He has a recreation group for all first graders after school on Mondays, is starting a social skills group at a local psychologist's office, and will have his first yoga class through the NW PA Autism Society this week.  He loved the yoga class he attended this summer.  Plenty for a 7 year old!  Way more than I ever did as a kid at any age!  We're lucky these things are available and that we're able to do the running.  Last school year he had in-home after school help but this summer we decided it wasn't necessary so that's a step in the right direction.  His lazy eye got stronger from the OT Vision Therapy he did all summer so we're no longer doing that and he's happy to wear a patch at home.  All in all, the B's doing great.   We nearly lost him at Walmart the other night but that's another story.

Clark!  What a kid!  For the last two years he rode a bus a total of three hours a day to a full-time specialized pre-school with full-time one on one help and had after-school help at home.  All of that is different thanks to us attending the Son-Rise Program and finding courage.  He is now attending a part-time general special education pre-school right up the road.  He's home with me in the morning, and goes to school four afternoons a week.  This is PLENTY for Clark.  We are supposed to be getting five hours of after-school help but as of yet they haven't found anyone to take the hours.  They would be helpful around meal time, but they think meal time is strictly a parent's domain (some of his biggest issues and where we could use help the most are at mealtimes, but what can you do.....)  Honestly, it's been really nice to not have a revolving door of people in our house.  Meanwhile, I'm working on reopening the revolving door, but on my own terms.  I am working with him in the morning in the room we have set up in accordance with the SRP principles and have three people I'm training as SRP volunteers to work with him one on one.  We got the camera set up this weekend so we're ready to go for it.  The more the better with this one on one time.  Every minute of it truly results in a positive with him.  Since starting the program he is nearly pee-potty trained, he is calmer, he will sit in my lap for a longer time, and is recently tolerating his baby brother being near him.  We recently quit the OT sessions as he was becoming increasingly aggressive in the car on the way to appointments making it clear he didn't want to go....fine by me.  Two times a week all summer long did me in for awhile.  Both boys also completed the 8 week The Listening Program which they loved.  We're taking a break with that but will probably start it again during winter break.  In the next couple weeks I'm taking him to Pittsburgh for a couple appointments; one is with a neurologist to get going again more intensely with the bio-med interventions which now seems possible since he'll take supplements and eat gluten-free, and a speech evaluation at Children's Hospital.  I'm looking forward to probable additional speech dx's, but some solid terms would be good to know other than, "he's non-verbal".  He had dental surgery not long ago and I can only imagine he feels better in that regard.  I'm also in the process of adding an Autism Service Dog to the mix via a grant and dappling in ASD protocols with essential oils.  There are countless testimonials from therapists and parents using oils.  The sense of smell is directly linked to the Limbic part of the brain which is the center for emotions.  So many separate posts I could do here!

Always busy with my boys, and add to the mix Baby Grant, nearly 14 months old, vaccine-free and right on track.  He's loving his baby friends while at daycare in the mornings!  Thank you, God! 

Loogie Hacking: Part Two

This will have to be a quick post as they all have been, because time is as precious as always.  The hacking/throat-clearing thing has gone on since March.  Reflecting, there were a few things which may have spurred it but of course none of them are obvious causes.  At that time we took him off an anti-psychotic medication which can help with repetitive behaviors.  It didn't help with ANYTHING that was obvious or intended which for me was increased attention that would aid in speech development:  I just want this kid to talk!  Instead, it had a common side effect of increasing appetite which resulted in behaviors of digging in the refrigerator and garbage.  Also, at that time we went gluten-free and the season started changing.  Any of these things could be the culprit for the tic of throat-clearing.

So we let it drive us crazy for awhile then tried joining him mimicking the behavior and then trying to be internally okay with it and ignoring it.  None of these made it stop.  Eventually, I had his blood drawn to check strep titers to rule out PANDAS, a Tourette's kind of deal with throat-clearing being a common thread, and hit a dead end there.  On our car ride to the National Autism Conference a few weeks ago, it was 90+ degrees and we hit stop and go traffic over and over again, and the throat-clearing happened over and over again.  It was really irritating so every time he did it we told him to "STOP!" or "Don't do THAT!".  Every time we made this request you wouldn't hear it for a little while.  And then I had the realization that throat-clearing isn't like burping or sneezing or farting;  it's a choice!  Even IF you have mucus issues, you can simply SWALLOW!  Even if you have mucus issues, it's not something that would make you make this LOUD NOISE constantly throughout the day.  Who does that?!  So we were on to him when you wouldn't hear it after we asked him to quit.  We are super-consistent with this request and the behavior is MUCH LESS!  It happens a few times throughout the day instead of many times per minute.

He was starting to spit into his hand when he did it and I noticed the clear mucus in his hand.  So there IS something there, but I certainly don't want the spitting to happen or for it to go beyond that.  All the time, I hear about kids who can't communicate who spit....spit at their caretakers, spit and play with it, etc.  NO THANKS!

 I started giving him a homeopathic remedy for mucus and I'll just have to trust that that helps, but nonetheless the mucus is still there.  I notice him swallowing hard a lot.  Yesterday, we had an appointment at an ENT and the doctor said nothing jumped out at him as a problem and that everyone produces a half-quart of mucus daily!  He prescribed Precavid, an acid-blocker, generally given to people with acid reflux.  I did try Tums many moons back and I told him I was giving him digestive enzymes.  He just shook his head.  We talked about food allergies a bit and he said it was all experimental.  I seriously get tired of regular old doctors just giving a med to mask a problem and not paying much attention to the underlying issue.  Anyhow, that's where a homeopath would be useful.  That's where winning the Lotto would be useful as insurance doesn't pay for that.  So I get the prescription and start reading about it on-line, and I read that it has caused many behavior issues such as waking in the middle of the night and hyper-activity.  These are both issues we've been there done that with with Clark and we aren't going back.  I read about natural remedies and sure enough digestive enzymes are one that will help (if this is EVEN the issue!) so he's NOT getting the drug and I will keep on keepin' on with what we're doing with diet and behavior modification.  And so it goes..... 

Potty-training the big kid.....

Thank GOD Bernie is fully potty-trained.  It truly makes life much easier.  He still had accidents last summer pretty much until I started making him wash his own underwear out in the sink.  He's the kind of kid who hates having his hands dirty so I used that to my advantage.  Worked like a charm.  My kid who'll be five in a month is another story completely.  He LOVES having his hands dirty!  And he is a sensory seeker as far as smells go.  Thank GOD the days of fecal smearing are over, although I don't necessarily trust him on the issue.  Anyhow, he'll be five in a month and we aren't sending him to his full-time school program which he spent three hours on the bus traveling back and forth to every day, so we're giving it a go.

Last summer we had the Behavioral Troops in and attempted an ABA intensive potty-training protocol.  It was developed by a couple of psychologists in the 70's to train an MR teenager with a smearing problem and it worked.  Another case I've heard of it working is a kid who used to be sweet but is now really aggressive and unhappy and spits in your face.  Who knows if the two have anything to do with each other, but he used to be sweet.  Now he's not, but he uses the toilet.  You can see the protocol here.  Three of us spent two ENTIRE days in the bathroom with no time out of the room for Clark.  He peed into the toilet for the first time during this time.  It was brutal though and he never indicated he had to go so we dropped it after two days.

We gave it another go over Christmas break.  We tried a different approach using a timer and trying to determine how long he could stay dry.  We started at an hour.....got down to five minutes.  That was also brutal.  He'd stay dry-we'd take him to go....nothing, put his pants on and he'd immediately pee.  It was exhausting with two other kids to tend to.  It was obvious at that point that he was controlling the situation and wasn't choosing to be ready so we gave it up.  We tried another approach by making him sit on it until he went every number of minutes.  One night he sat on the toilet for nearly four hours before we put a pull-up on him which he peed in immediately.  At this point with school starting back up, we decided it was HIS issue and let it go.  Sometime during the remainder of the school year, I asked the staff at school to take him every half hour and they would only comply to taking him once an hour.  This is NOT a kid who cares about peeing on a cheerio or getting a sticker or turning the water blue or getting a toy or a star on a chart.

So we did the Son-Rise Program and of course this question came up and the answer was very simple.  Mark a date on the calendar that you are going to be done with diapers (which thankfully we get free because of his diagnosis) and let the child know that he can use diapers until that point and then they're done.  Also, use their motivation to celebrate attempts and successes.  Okay, so I had to think about it.  The one thing that motivates this kid more than ANYTHING.....is candy.  So we are making it simple and setting the timer for every 45 minutes and he gets one candy (a M&M type from the food co-op) every time he tries.  He will never get candy in any other situation!  Sometimes he pees and sometimes he doesn't but he always gets the candy and we always celebrate the attempt.  The goal at this point isn't to be potty-trained but for him to initiate needing to go.  We've been doing it CONSISTENTLY for three days and he's still happy to try and today the timer went off and I told him to go potty and he went into the bathroom, pulled down his pants and sat and tried on his own.  I'm thrilled!  This is progress and that's all I ask for at this point.  I also believe putting the "yes environment" principles into place around the house has given him a much greater sense of control and happiness so perhaps he doesn't feel as strong a need to control this particular situation.  He's never poo'ed in the toilet yet, but initiating pee and eventually going on his own would be AWESOME.  Some severely Autistic kids wear diapers forever.  This timer should come in the mail in a couple days and will give him more of a visual which I think will be helpful.  I think if we're consistent with the time between trips to the toilet eventually he will start to stay dry especially if he can see the countdown.  He's already started staying dryer throughout the day and it's only day three.  Gotta do this thing! 

How to get started...

Besides just getting in the playroom and doing it, there are a few things we need to do to get the party started.  Most importantly plotting both kids on the Developmental Model.  My friend who attended over ten years ago said they didn't even have this tool then, but I'm so glad they do now as it will give us some concrete goals to work on.  The name of the game is joining them in their repetitive exclusive behaviors but when we get those green lights for interaction we add one thing.  We join, initiate, and inspire growth.  For example, Clark spends a lot of time playing with strings or blades of grass.  He's totally in his own world when he does this.  The house could be burning down around him and he might or might not look up and take notice.  So when he does this you find your own string or blade of grass and do the same thing he's doing.  This is called joining.  And it really helps sell it if you get into it, enjoy it like he does, or try to see what's so fascinating about it.  The more you feel it, the more likely you are to get some sort of response from him.  This is what you'd call a green light.  A glance, a smile, a touch....most likely Clark will take your string too, so you just have to be clever and pretend to have one or do the same action with something else.  Taking your string and continuing to not notice the person isn't a green light.  He's still being exclusive.  When you do get a green light, you try to inspire growth by adding one thing.  An example might be to make the string dance, and since our particular focus is language you might say, "dance" and ask him to do the same.  If he tries, you give exuberant praise!  The attitude of this program, the 3 E's-energy, excitement, and enthusiasm, is what's going to make or break it.

So here's the Developmental Model.  Basically, you need to plot your child on this model and work through the social stages.  There are five stages and once you've completed all the goals for each stage you move on to the next.  Once you've completed all five stages you probably won't qualify as Autistic anymore because you'll have all the social skills of a socially successful person.  Autism is a social challenge after all.  The four main social components of the Model are eye contact and non-verbal communication, communication including vocabulary and sentence length, interactive attention span, and flexibility.  You know, all those things normal children do naturally without the need to be taught.  Check out the link to read about all of this in more detail.  It all makes quite wonderful sense, and I'm thinking my kids will be way better equipped socially than both Brad and I were at a young age, if we can make the goals.  All of the other things that present themselves as challenges to individuals with Autism, like self-help, gross and fine motor skills, and cognitive skills are truly secondary to these social functions.  Yes, I said cognitive!  Really, how important is it if my child is on par cognitively if he can't look a person in the eye or talk to someone?  Like one of our teachers last week said, people come to this country not knowing anything; language, customs, etc., and make their way because they have the social skills.  Once these things are in place your motivation for the other fundamentals will most likely fall into place automatically or you will be self-motivated to acquire them.

So, we have to find out where both boys are on the Model so we can see the specific goals we need to work on.  This outlook and awesome, user-friendly tool provided quite the eye-opener for us regarding Bernie specifically.  We were not quite sure how to do this whole thing with him besides just using the attitude, etc. and were under the impression that he is doing so well.  Well, he is really, but the model has given us specifics to work on with him.  Once we hit all these marks, he'll be good to go for life.  Clark is going to be much more labor intensive.

The other things we need to do to get started are recruit volunteers, or namely make a flyer and get a plan in action.  We learned a lot about it last week and feel confident we can do it.  I'll talk more about that later, but the prospect of creating a new family is exciting.  We also have to buy and install a camera in the playroom to provide feedback on sessions.  Feedback is crucial.  This is all very exciting and will be a lot of hard-work, but it's the kind of hard-work that could not be more rewarding.  No paycheck required.  Love appreciated.   

The Son-Rise Program Start-Up.....

As my dear friend who suggested I attend this program stated, there really aren't words to describe the experience and what I walked away with from it, but I'll share some general thoughts.  Amazing!!!  I'm okay if my children never change and always have Autism.  However, I know in my heart and soul that they will grow....through love and acceptance.  Like any parent, you just want your children to achieve their potential, strive for the best, and be happy.  I can think this way too.  There is no "your child will always be this way" mentality that I was having crammed down my throat months ago.  I will never accept that.  Change is possible, scientifically and otherwise, for everyone at any age.  The brain is not a solid, fixed matter.  Autism isn't static.  Life isn't static.  It's ever-evolving for all of us.  And yes, we are thinking recovery here. 

And I'm not alone.  It was very emotional and surreal to be surrounded by a hundred plus people from 21 different countries who deal with the EXACT same things.  We've gotten increasingly used to feeling alone so it's a comfort to know we are not.  I am extremely grateful Brad was also able to attend the program.  I can't imagine him not sharing the experience.  It was crucial for us both to attend.  While we learned many many specific techniques that are proven to work, the bottom line is love.  Nothing can grow without it.  We all just want to be happy in this life, and you can't be happy without love.  It's that easy.  I am already planning on attending subsequent programs they offer.  I will have to do some fundraising, but maybe the most important lesson I learned is that absolutely NOTHING is impossible.  Hard work and the right attitude will take you wherever you want to go.         

What will I do with an NT kid? And Teen-Age Wasteland.

NT:  Neuro-typical.  Baby Grant is nearly 10 months old and has hit all his milestones early or on-time.  It's really weird.  If he starts talking soon that's going to be really weird!  Like a little alien baby.  Obviously, it isn't what I'm used to, but I'll most certainly take it.  Some babies don't show signs until much later, but as far as anyone who comes into contact with him, the kid is alright!  Yeah, I'm making a lot of Who references...I think it's subconscious as that's all Brad and I listened to on our last trip east.  I always think of that trip when I hear them.  Anyhow, his chances statistically are high to be on the spectrum and when he turns one I will probably have Early Intervention come out to assess him for peace of mind.  Please, God, don't let me have to do all this therapy stuff again.  It's a lot to take.

So why is he okay?  My theory and hey, that's all that counts, right?! is he's not as loaded with environmental toxins.  Yes, my family seems to have a predisposition for auto-immune issues, and both Daddy and I have some Silicon Valley Theory tendencies, but from what I've learned with my first two, the four-year hiatus between kids were spent cleaning up the sludge in our lifestyle.

He's not vaxxed.  I didn't have any ultra-sounds with him.  My diet was clean while pregnant.  I was medication-free.  I didn't have any dental work done...stirring up the mercury.  I didn't put any chemicals onto or in my body.  I took a vitamin and other supplements including drinking wheat grass juice.  He never sees a chemical on his skin.  Namely, I did all the right things.  My diet was heavy on double cheeseburgers and fries with the other two, etc., etc., etc.   My temples aren't shorn, but I'm not orthodox.  It's a work in progress for sure. 

I love watching documentaries on Netflix and there are a lot of great ones touching on all the sludge in our environment.  Recently, we watched Chemerical and I thought it was interesting that housewives have a MUCH higher rate of different cancers than women who work outside the home.  Exposure to all the chemicals in our homes are thought to be the culprit.  Per reader request I'm going to share a few recipes of stuff we use.  I'm a big fan of coconut oil, baking soda and vinegar.  You can pretty much do anything with these three things.

I get my coconut oil from Tropical Traditions.  It rules and is hand-processed from coconuts grown and picked by small family farms in the Philippines.  The expeller-pressed kind doesn't smell or taste coconutty.  I like the Gold-Label kind in my coffee, etc.  That's a whole other post.  They also have great customer service.  Baking soda from Bob's Red Mills is good.  The A&H kind is chemically processed.  I usually let my kombucha brew so long it turns into vinegar but Bragg's ACV is primo.  Recipes:

Deodorant:  dab on coconut oil, pat on baking soda.
Shampoo:  baking soda w/water.  rub in.  rinse out with vinegar.
Hand-Soap:  olive oil, Dr. Bronner's, water, peppermint essential oil drops if you'd like.
Hair-gel:  natural gelatin and water.  mix.
Toothpaste:  3 T coconut oil, 3 T baking soda, 20-30 drops peppermint oil.
Liquid Cleaner:  vinegar and water.
Laundry Soap:   DIY Laundry Soap 20 cents a gallon | The Urban Farming Guys
Fabric Softener:  dryer balls
Sunscreen:  coconut oil
Pest Repellent: peppermint oil
Lotion/Moisturizer:  coconut oil

You get the idea.  Pure and Easy (another Who song).  Another bonus is if my kid eats any of it, and he will, it's okay.  You can find lots and lots of these sorts of recipes on Pinterest, and conveniently bookmark them.  I like my cupboards bare.  Less chaos and clutter means there's more room in my head for stuff that matters.  Won't Get Fooled Again!  Here's another great website to check out the toxic load of your favorite products.  It's truly frightening!    Skin Deep® Cosmetics Database | Environmental Working Group   

Day 2: Session 2

I might get a little obsessive here!  Your choice to read; my blog!!  Brad took the B and G to the library so we had some time.  I'm so glad to have things set up for the most part in the room and get a few chances to do this before our program next week.  I will have specific questions!  So this time I put the puzzles on the high shelf and locked the door.  Forgot to put the blanket out the door though!  So that's what he started in on first.  He likes both of us to be under....and then out.  When we're under he gets really excited and bounces a bit and tries to hug me....shuts his eyes tight.  I continued with the "dark/light!!!" business....Did I mention it's about 90 degrees in that room?!  Speaking of air (fan in the window), we really need to get the frost on the windows!  Like I said, we have the stuff but.....stuff like that is a bit intimidating.  It's a stick-on film and it cost $30....If I ruin it because my fine-motor skills fail me I'll be ticked!  Anyhow, he did more looking out the window this time without the puzzles as a ready distraction.  I pointed to the puzzles on the shelf and he's pretty good approximating the word "puzzle" but didn't.  He started trying to open the door.  I knew he'd try to start that routine again, so I brought in a book.  When he tried the door, I opened the book and said, "open!!".  He said, "shut!" so I shut the book and said the same.  We did this a couple times and then he gave up on the door and wasn't interested in the book either.  I put the book back on the shelf.  He started a new series of repetitious actions.  He stood on the little chair and then would stand on the little table.  I truly think he was waiting for me to tell him to get down or say no, but as I mentioned before the room is a no-"no" zone so I wanted to see where it would lead.  I said, "Clark up!" and then he would get down, and I'd say "Clark down!" and then he'd flop on the futon and push me down and I'd say "Mom down!".  He'd then start the whole thing over.  He does a decent job approximating "up"....It sounds more like, "dut" but per the SRP attitude you accept it and get excited about it until it's more natural and spontaneous and then you ask for more.  As he stood on the table, I thought I'd switch it up because in between a few of the routines he'd gallop which is a stim for him.  So I'd gallop with him.  I noticed he was watching himself do this passing the mirror.  And then he'd stop and fall into the sideways stare.....And then he'd start the climbing up again.  He grabbed my hair to pull me so I grabbed his...he laughed.  He grabbed my shirt too and I did the same to him.  He figured out this wasn't going to work so I said, "Mama up!" and jumped up.  He wanted me to climb onto the table too.  Wasn't happening!  He'd go into the sideways stare while standing on the table so I'd say "Clark up!!" and then added, "Mama up!" and jump up and grab him and twirl him around...he'd laugh, and then drop him on the futon and say, "Clark down!".....At this point, when he was on the table and anticipating me jumping up to grab him I made him say "Mama up!!"  He did it perfectly several times! Not spontaneously yet, but I'm thrilled.  A few times of this and he tried to open the door again.  He went downstairs on his own without whining.  No whining at all today as a matter of fact.  I think the interaction was a lot for him!  God, I'm looking forward to this fall when I have several hours a day and more know-how to really work.  I can see us making huge progress. 

Day 2: Learning for both!

Clark is really motivated to be in the playroom with me.  Dad, not so much yet.  That's why there's a lock on the inside of the door though.  He'll get there.  It breaks my heart when he grabs my hand to go to the room and I can't because I've got something else I need to tend to at the time.  So the times I can are increasingly precious!  We had a chance this morning for about an hour.  I wore shoes so he wouldn't stim off my feet.  I said "shoe" and he repeated it.  I need to leave the blanket for his bed out of the equation, but used it to our advantage saying "dark!" when he pulled it over our heads, and "light!" when he took it off.  He approximated the words but they weren't terribly clear.  Nice trying!!  I also need more full-size fitted sheets as we only have one and after rolling around on it and off and on again, it's in the laundry.  I will go to a local thrift shop today to see if I can find a handful of plain-colored ones as I think we'll be changing them daily.  We also need to get the frost on the windows as he spent a lot of time looking out.  I will probably also start using the lock on the inside of the door and include a toy in the room with which he can transfer the "open/shut" game he likes to do with the door.  As well, Bernie bombarded us and wanted to hug with Mom.  Clark was done and left the room at that point.  I hate to shut out one kid to work with another, but Dad was here to love on the B, and I'm sure to give the B special attention when the session is over.  So all in all, a good lesson for both.  I learned more of what I need to have in place, and he learned the true meaning of "dark" and "light".  His eye contact is just incredible when we're hugging on the bed....like loverly staring into each others eyes.  It's the best!  It's so important he know he's not alone in this world.

The Storm before the Calm

Kicking off the week before our trip with per usual; chaos.  We leave Saturday and it will take the whole week to get ready.  The boys have no less than six therapy appointments between the two of them.  I have a foot doctor appointment.  We're hoping Brad can get into the ENT so he can HEAR something.  That would be a BONUS!  And hoping Clark can either be seen by the pediatrician or just get a prescription for an anti-biotic.  I saw him last week to discuss the strep titer results and one of his anti-body levels for strep was sky high!  Basically meaning he's had strep before...The technical aspects of the whole deal were confusing but basically I'm to call back if I see any more tic-like or repetitive behaviors, as well as any sick-like stuff.  He's developed a cough on top of the hacking.  So, I was instructed to not pursue medication as it stands, but with the new cough I think I'd like to try a mild penicillin and see what happens.  He'll most likely ask us to come in for a strep test.

The usual packing of stuff:  I tend to be a  light packer and the fact that where we're staying has a washer and dryer should be helpful.  The biggest thing will be the food!  With the boys being gluten-free and us being adamant about them only eating good things; we've got a lot of cooking to do!  

Tomorrow, Clark's summer TSS starts so I've written a list of a few things I'd like her to work on with him over the summer.  She is a natural and very committed so I'm looking forward to his progress with her.  Tomorrow evening the babysitters we are taking along with us are coming over to stay with all three while Brad and I run a few errands.  This will be the first time they'll be with the boys alone so I hope they feel comfortable with the "big job" the following week.  Now that I think about it, it will be the first time in ten months we've been alone together without any kids.  This brood requires two babysitters and who can afford that?  We're SO lucky to have secured such great people willing to travel and tend to them while Brad and I are in sessions learning Monday through Friday.  One is a new high school graduate and the other just finished college.  They know each other from Sunday School.  The high school grad. is Bernie's school OT's daughter.  We feel super-confident about our boys being with them and really just hope all have FUN!  The resort where we're staying is a ski place in the winter, but there will be plenty of summer-time fun:  pools, playground, mini-golf, etc.  My in-laws were very generous to donate two time-share condos for everyone so the babysitters will have their own space.  I think that's going to be crucial for them to rejuvenate for the next day.

Almost all of the other program participants will be staying on campus at the Autism Treatment Center of America for a relaxing stress-free kidless week and using the evenings and downtime to connect with other parents.  I sure hope we find some time to make these connections as they can be invaluable after you leave as a support system.  We'll be meeting people from all over the globe; Nepal, Australia, Great Britain, South America, etc. etc.  I thought it was important for both Brad and I to attend though, and I couldn't fathom leaving my baby boy especially.  It will be a good family trip, but now I'm hoping I don't have to use my lunch time with the breast pump.  

      

Day 1: Interesting

Wow!  So a bonus of Daddy being a college professor is he's home full-time for the summer.  And he likes to ride bike.  Grant's finally big enough to sit in a seat behind him and Bernie's still small enough to fit in the trailer, so off they went.  This morning we got the shelf and mirror up in Clark's SRP playroom.  I've been itching to get started officially so we had the chance!  The room is crucial to the method.  It's to be a complete "yes" environment where there is nothing off limits to the child.  You shouldn't have to use the word "no" at all.  Success on that note!  It should be distraction free; no extraneous items, nothing on the walls to stim on.  Essentially the adult should be the most interesting thing in the room.  Success!  There should be a shelf high up and out of reach of the child that holds things the child is interested in and motivated by.  He should be able to see the items too.  The goal is for him to request these things by pointing, which he's never done, or using words.  Success!  The mirror is to increase self-awareness.  Success!  If there are windows, they should be frosted so the child can't see out at distractions.  We have the material but haven't gotten this done yet.  Yes, he spent some time looking out the window.  There should be a little table and chair for him to sit at, and you sit on the other side on the floor so you are at eye level.  Done!  A two-way window/mirror and/or a video camera are useful for feedback.  We haven't thought much about these things yet.  One thing I'm not sure about is whether or not you include items they stim on, in particular for Clark, his mini-trampoline.  In order to "join" him in this stim you would want to have a large exercise ball to sit on so you could bounce with him.  In a previous post where I shared the methodology of the program, "joining" is what makes the SRP unique.  A child will stim or "-ism" to avoid interaction.  The SRP teaches you to join your child in this behavior to make yourself a part of their exclusive world.  Whenever I've done this his eye contact is amazing!  Once they've accepted you entering their environment you try to add components and encourage interaction  We removed his official bed from the room (which made a LOT of noise when jumping-above my sleeping head) and added a futon mattress straight on the floor.  No worries of hurting himself or breaking a bed and little bounce.  With the bed in there some nights he would jump for two hours before settling down to sleep.  The futon has curbed this immensely.

So we're pretty much set up with the environment for little cost.  That's exciting!  Some people have to build a special room or reconstruct their home.  Our biggest expense was the shatter-proof mirror.  Since it's his bedroom I wanted something safe.  The first session was interesting to say the least!  I pulled the futon in front of the mirror and he checked that out for a bit.  Not looking at himself but just touching it and the edges and mounting hardware.  I took a toy off the shelf...a shape sorter where you put the shapes on wooden pegs and started playing with it...he finished it up!  One of his favorite things to do is lay in bed with me and hug on me and pull the covers all snug around us.  He likes to flip around and hold my feet.  Yes, the kid has always had a foot fetish.  Do I get rid of the blanket?  Do I wear shoes?  Every time I sat up, he'd push me back down.  I easily fell.  Great!  Interaction!  Cause and Effect!  After a long while of playing this game, he became a bit aggressive with the hugging and tried scratching my arm.  I lightly did the same to his arm.  He pulled my hair a bit.  I did the same to him.  This made him LAUGH!!!  He poked at my eyes!  I would say, "eyes" and he'd approximate the word back.  He'd put his fingers up my nose.  I'd do the same to him.  He didn't enjoy that so that behavior quickly stopped.  I'd ask him to touch his nose and eyes, and he'd do it.  Suddenly he started a series of repetitive actions.  He'd open the door, shut it and then push me down on the futon, fall next to me and hug, and then get up and do it all over again.  He'd open the door and I'd say, "OPEN!!".  He'd shut the door and I'd say, "SHUT!!!".  He'd push me down; I'd fall back.  Eventually, I realized at this point I should be saying, "DOWN!!".  We'd hug (with AWESOME eye contact during the hugs).  He'd get up.  I'd sit up and he would open the door again.  After a dozen times of this routine (an -ism surely), I'd pause before saying "SHUT!!!".  He said the word alone at least three different times!!  This is huge for Clark!  The SRP says to get super-excited when this happens, and wow!  That was very easy for me to do!  I was thrilled!  So a couple more times of the routine while doing the hugging part, I'd say, "OPEN!!".  He got up and opened the door!  Again, wow!  So we did this for the session.  It was pretty damn cool!

Daddy and Brothers got home and I asked him if he wanted to eat lunch and we went downstairs without whining.  Most of the time these sorts of transitions result in whining or crying.  And very little whining for the rest of the day!  He led me back upstairs into the room a couple times throughout the day, so we played a bit more.  He loved it!

Here's a link of play-room toy suggestions from the SRP.  I'll be adding some of my favorites to my Amazon wish-list!  Toys for SRP!

  

World's Worst Family

That's what I'm feeling like we are today.  Of course, I know that's not true, but being canned by two therapists in one day makes it easy.  Dealing with the "professionals" who come into our home has been the cause of more emotional stress than having two children with Autism.  In the course of four years of living this life, our door has been open to many, many individuals working with the kids.  Probably at least two dozen.  I couldn't remember all of them if I tried.  I'm not talking about Early Intervention PT's, OT's, and Speech Therapists either.  This is a LOT of personality, on top of me and my husband's, which is sometimes too much in and of itself!  We are pretty open-minded individuals who tend to generally think outside of the proverbial box and most of time when we have "issues" with people it's because they don't see the world this way and therefore have a difficult time connecting with our kids how we'd like them to.  They're in caring, supportive roles and deal with children.  Open-mindedness and thinking outside the box are hallmarks of kids.  How could you not strive for this or be a natural in such a job?   The requirements for this Therapeutic Support Staff (TSS) job is a high school diploma.  They make around $13 an hour without benefits.  No one does it as a career; usually it's a stepping stone or just a job while you're in college or waiting for the next chapter of your life.  There's a lot of turnover.  You get emotionally-invested with ALL of them.  You question yourself and can have a bit of emotional turmoil with the bad ones; should we let them have more of a chance to connect or is it time to move on?  It would be one thing if they were just dealing with me, but my boys in the mix can sometimes make things heart-wrenching!  We've canned, and we've been canned!  I've bawled when the best have left us....on three occasions.  One of these was unannounced; life circumstances prevented her from returning to the job.  The other two gave me ample time to process.  The last of the best moving on made me realize that I'd been too dependent on her, and ultimately spurred us to do this Son-Rise thing.  There was a rainbow!  I suppose the common trait among the three of these people (out of two dozen-ish, mind you) was the ease of laughter and love and seeing the humor in situations.  I suppose that's something my husband and I love about all the people in our lives that we truly love.  So it makes sense.  The other night I made one suggestion and the response was inexcusable; the TSS snubbed my Clarkie's request for interaction because she's not his therapist-she's Bernie's.  She was angry that I questioned her.  I questioned her subsequent response and her reaction was to dump us immediately, after working with my B for two years! It broke my heart when Clark reached out and she turned away.  It was not the thing to do to any child let alone one who spends most of his waking hours shrouded in his Autism.              

And I guess (!!) I'm passive-aggressive.  That doesn't help.  I suppose I could've been more gentle in my suggestion.  Or I could've asked better questions.  I don't know.  I need to work on this and as I've said, the SRP is as much for parents as it is to learn to deal with your kids.  The right hand of the Autism Treatment Center of America is the Option Institute.  Their premise is ultimately self-improvement and awareness through a dialogue process.  Self-Dialogue.  You can also have a facilitator to assist in the process, but essentially it's asking yourself questions.  Questions only you have the answers to; self-discovery and understanding through non-judgemental self-searching.  They have countless programs you can attend that have nothing to do with Autism but everything to do with this...learning that you are ultimately in control over your feelings; that no one else has the power over you to make you feel a certain way.  That happiness is a choice....

I need to ask myself these questions regarding my feelings dealing with so many PEOPLE coming in and out of my boys lives, and there are specific questions and a specific process.  I will examine them...I've never used the official process itself.   My issue I suppose ultimately is to not be so emotionally invested with outside forces when it comes to my boys.  "Supposing" doesn't make me sound too sure if that's even the real issue!  I'll start at the top.  Why do I care?  The next question would be "About what?", and I'm not sure what the answer is to that yet.  I think I have a lot of work to do.  Ultimately, the more I expect of myself, the more I expect out of others.  This seems to be a simple equation for good things.  

    

Principles of the SRP

I feel compelled at this very moment to put this out there.  I've had a horrible night dealing with the people who are PAID to be therapists.  If anyone out there is looking for something different, I urge you to look further into this LOVING program to treat our children.  The cost may be daunting but you can find referral discount information on my blog.  As well, ATCA is very generous with their scholarships.  Your cost will include room and board for a week as well.  You just gotta get there.  You can do fund-raising too.  I have to say what we've done with the principles and methods we know about just from reading have been amazing for us and our child.  The program is ultimately about being okay with your child no matter what;  choosing to be happy.  The ATCA website and blog also give endless practical strategies you can use right now.  Without further ado, here's what it's all about:  http://www.autismtreatmentcenter.org/contents/about_son-rise/index.php

What we've been doing....therapy-wise....

Before I get into the methodology and principles of the Son-Rise program, which frankly can't come quick enough but will be upon us in no time, I thought I'd talk a bit about what we've done up to this point.  Of course, we did Early Intervention.  A lot of future success is dependent upon those services according to most, and I will agree they were invaluable.  If you think your child is lagging upon reaching the age of one, you call them and generally they do a home visit and administer assessments across all areas of development to determine if your child is eligible for various therapies; generally physical, occupational and speech.  The therapists come to your home and work with your child and as a parent you learn much about your child and how to help them on your own time.  These services last until the age of three.  At that point the school district you live in administers assessments and then between the ages 3 and 5 it's their responsibility to provide pre-school in an appropriate setting.  We did and are still doing all that.  As well, you can choose to do outpatient therapies.  Did those too.  If you have a diagnosis, depending on the state you live in you're eligible for additional services called "wrap-around"....You're assigned a Behavioral Consultant and a certain number of hours from support staff who work with the child in your home.  The BC is essentially their boss, and instructs them on interventions.  It's called "wrap-around" because the services extend into the school.  The child also has a BC for school and a one-on-one therapist.  My kids essentially have one-on-one aides for the full school day.  Luckily, we've had a couple therapists work with them at home and at school and this is where I get most of my communication from.  The nuances of the day, so to speak. 

Yes, interventions, behavior modification, extinction techniques, etc., etc.  It's Applied Behavioral Analysis.  It the most widely used and taught intervention.  It works 60% of the time.  It isn't much fun in my opinion and many say it does nothing for socialization, but instead creates robot-like functional behavior.  Every skill they've learned has been very useful, but it can be brutal getting to that point.  A lot of crying and resisting on their part due to the "Do this.  Do this.  Do this." on the part of the therapist.  ABA has come along way since first being put into practice in the early 70's, but how to teach these kids still has a long way to go.  We're not just institutionalizing them like back in the day.

Lately, in my opinion, the ABA has been the cause of aggression in my Clarkie.  It's not worth it.  I want a happy kid-hands down.  If he's happy, the functional behavior will come.  I'm looking for more and so we've turned to the Son-Rise Program.  I appreciate all the help we've been given, but sometimes it's a double-edged sword.  Sometimes the personalities don't mesh.  Sometimes it's hard to have a revolving door in your home.  We've come to LOVE a few of these people too!  This summer Bernie has 5 hours a week in-home help and Clark has 5 to 20 hours.  Let me tell you, it's not easy to get these hours either.  The eye-glazing meetings!!!  The data!!!  The people who ultimately grant you the hours have never met the child!   

I LOVE the following website.  The page I'll link you to shows a list on the left of interventions used including the SRP and ABA.  Note there are many others.  The list on the left shows a number of common bio-medical treatments; none of which are covered by insurance naturally.  Lately, I've been interested in MB 12.  I'm going to ask the doctor about it tomorrow.  It's been proven to have positive results in 94% of patients.  It's a sub-cutaneous shot administered three times weekly.  I'd do it...."If I were a rich man....."!   

http://www.kylestreehouse.org/treatments.aspx

What is the Son-Rise program?

I'll share this link from ATCA that tells you what the Son-Rise program is on a most basic level:  http://www.autismtreatmentcenter.org/contents/about_son-rise/what_is_the_son-rise_program.php

That's right; we're keeping Clark home this fall from his full-time preschool program he's attended the last two years to work with him one-on-one.  Namely, I'll be leading this program. The start-up Brad and I are attending in two weeks should give us the know-how to do this.  They also teach you to recruit volunteers, and probably more importantly the confidence to do it..  Ideally your program should run as many hours a day as possible.  We live in a college town so perhaps students will be interested.  We'll be sending Baby Grant to daycare in the mornings.  I took him for a visit and he loved it!  He's quite a social little guy.  With all supports in place and my teaching degree, I feel we'll be successful and make progress.

Why are we doing this when he's attending the best Autism-centered program in the area?  Mainly, because I think he can do better.  His progress has been minimal and my hopes are higher for this boy.  In his classroom, which has a very small footprint, are 8 other Autistic students, three full-time adults, and nearly every child has a personal aide.  Other adults are coming in and out of the room all day long.  There are a lot of transitions.  I've heard it described as "rockin'".  We'll leave it at that, but I must add how grateful I am to all the staff there for taking care of my sweet boy.  I can't imagine learning anything in such a "rockin'" environment, let alone a child who will sink deeper into his own world when distractions are too great.  He also rides the bus an hour and a half each way, making potty-training impossible.  It's easy to see that one-on-one support with a loving trustworthy teacher in a distraction-free environment he's comfortable in will open doors to learning that he so desperately needs. 

I feel really good about our decision.  We'll do anything for our boys.  As well, we hope to learn some ways to work with Bernie more effectively.  Another great thing about both Brad and I attending the program is they split you into groups-verbal and non-verbal, so I will attend training for Clark specifically and Brad for Bernie.  Perhaps most importantly the program helps you learn to love yourself and your child just the way you are!  We can't wait to learn!       

Sensory Seeker Extraordinaire

I remember my BSC mentioning the YEAR LONG wait list for a Sensory Integration program at a local place over a year ago....when my child was in the height of his smearing days (those were undoubtedly the worst days ever).  I was daunted, and did nothing except try to deal with the matter at hand.  Recently, it crossed my mind again so I called.  Currently, his sensory issues are liking deep pressure, smelling, and oral motor related.  You only have to use your imagination to think of ways these are satisfied.  There's still a wait of a year, although an orientation was possible within the week.  I mentioned this to someone and they knew of another program I'd never heard of and we were able to get in there immediately!  I'm not exactly sure how or if the therapies are different, but both are done by an Occupational Therapist, so what the hell.  Who knows what sensory issues we'll be dealing with in a year!   So the kid has begun therapy and it's going really well!  He has two hour-long sessions weekly and he loves it!  He hates to leave!  I wish he could do it all day long.  They do all sorts of fun stuff and they have some awesome equipment and great ideas.  One thing they tried was a pressure vest.  This gives him input that is ultimately supposed to be calming or grounding (on that note the kid is ALWAYS barefoot).  He's a little hippie...just like mom.  Now he's a little surfer.  Instead of a pressure vest, I bought him a wet suit.  Cheaper and he can wear it in the water!   

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.