Winter Break = Autism Hell

I love my children, so deeply that even I am taken aback daily by the volume of my love for them.  I would gladly give my last breath for either of them, with absolutely no hesitation.  They are the two best parts of my life and I know that I would not be one tenth of the person I am today without them.  With that said, I cannot wait until they go back to school on Tuesday!  Yes, I'd appreciate going to the grocery store alone, and being able to work with minimal interruptions, but that's really superficial.  You see, while school can be a challenge, it does one thing very well:  providing structure.  Most people with autism crave structure and routine above anything else.  When you stuggle to communicate, have trouble understanding the behavior of others, and your body's sensory system has betrayed you, the world is a very scary place, indeed.  Dealt that hand, any of us would seek out consistency and routine in an attempt to cope.  At school, almost every day is the same, and while things there are less than perfect, the routine provides a lot of comfort and helps my kids keep themselves regulated.  And while we are extremely consistent as parents, I can't compete with that kind of routine.  Being an effective Autism Mom requires flexibility, particularly when you have more than one child (even more so if you have multiple children with special needs).  Add the responsibilites of running a household and no matter how hard I try, the routine does not work most days.  That is why breaks from school can, and often do, become hellish at our house.  While I am always optimistic that things will be different, it hasn't happened yet.  This winter break has been no exception.  Sure the first few days were good, as we were traveling and spending time with family and the kids were busy with new toys, games, etc.  But given that Son 2 has a three-day shelf life away from home before he starts to go off the deep end, we had to come home eventually.  As in the past, it was around the 6th day of the break where the situation deteriorated to the point that it required a large handbasket.  Behavior plummets, sleep patterns dissolve, and aggression and anxiety run high.  It is a little worse for Son 2 this year because Son 1 is sick again, and that means we are at home even more than usual.  This is why I fight so hard for ESY (Extended School Year, or summer services) every year.  It's not that I'm seeking a babysitter.  If all I need is a babysitter, that is pretty easy to find.  He needs some semblace of that routine, and no, I'm sorry six hours a week the two weeks before school isn't going to cut it.  In related news, I discovered that Aldi has wine for $2.50 a bottle.  :) 

When Mama Ain't Happy...

ain't NOBODY happy!!  While not terribly sophisticated, it sure is accurate, isn't it??  It's interesting how having a chronically ill child re-defines your life.  Particularly when there is not yet a diagnosis.  Relationships, family, career, and even shakes your faith.  Even when you are lucky enough, as I am, to have a good network of support.  The ONLY thing that matters to me is getting my kid well.  I don't care if I'm bitchy.  I don't care if I haven't showered today.  I don't care about what to make for dinner (that the kid probably can't eat anyway).  I don't care if I get my other kid to school on time.  I don't care about your opinion (unless you're an MD).  I don't care about the nutritional content of what goes in my mouth.  I haven't seen the inside of the gym in weeks, and my backside shows it, and yes, I don't care!  And for the first time in my life, I don't care about Christmas.  Usually I am walking around singing carols, happily baking, shopping, wrapping, etc.  Now I'm like "Damn.  I have three more freaking presents to get.  And then I have to bake some effing cookies."  The only thing I want for Christmas this year is for my kid to be able to get off the couch for one lousy day.  That's it!  Gift wrap is optional.

Trust Me??

How many of us have been sitting in an IEP meeting and in an effort to simply get the school to document what was verbally agreed to, gotten one of the following responses:  "You just need to trust that we know what is best."  "We know how to do our jobs.  Trust us."  HA!  Trust is a fragile thing, and once my trust proves to be misplaced, I will NEVER make that same mistake again, period!   I simply explain that it is not a matter of trust (because if it were, we wouldn't NEED the legal document, now would we??), and that it is in everyone's best interest to be as specific as possible so that there are less opportunites for misunderstandings in implementation (which lead to parents involving someone like me).  I may or may not speak the parts in parenthesis, depending on the situation.  ;)  Remember:  "If it wasn't written down, it was not said.  If it wasn't written down, it did not happen."  ~Pete Wright

"The Diet" and Hospitalization

We've had a vicious stomach bug making its way through our family.  Son 1 had it a month ago, I had it breifly early in the week, and it hit Son 2 HARD on Tuesday.  He literally went from being fine to me carrying him into the ER in less than 7 hours.  Keep in mind, he's 10 and weighs 87 lbs, and I carried him across a large parking lot.  I felt pretty buff.  Anyway, he was so dehyrated that he was admitted for a two day stint.  I panicked.  Yes, because my baby was super sick, but also because I thought, "Oh crap, how am I going to deal with his allergies and GFCF diet in the hospital??"  Another fun element is that he has asthma, and just a teeny bit of allergen can tighten his airways and make him blue as a squid.  But it really turned out to be totally fine.  I wrote it all out on his paperwork, and made certain that every nurse that came in knew that I was the only one to give him ANYTHING by mouth, and they were totally on board with that.  The phrase "multiple life-threatening food allergies" has a way of garnering attention, to be sure.  It was easier because really the only thing he ate was four gf crackers brought from home.  IV fluids, pedialyte, and Jello are wonderful things.  :)  So are nurses who can overlook some challenging behaviors and see the child, not the autism.  :D

THE Phone Call

Yesterday was interesting.  Son 1 was so sick that we had been at the hospital for the second morning in a row.  Worry combined with sleep deprivation had been working together to devour my sunny disposition and were nibbling at my sanity.  My cell phone rings just before noon, and since it is chiming out the Imperial Death March, there is no doubt who is calling.  I say a few choice words before I answer, knowing that I'm not likely to enjoy this conversation.  "SuperMom, this is Mrs. Principal."  Yes, THAT call.  The one that every autism parent lives in fear of.  "Son 2 has had a rough morning, and well, we've tried working with him and talking to him but he's still pretty upset, so I just wonder if it would be better to remove him from the building and send him home."  The grace I mustered was hand delivered by God at that very moment, I can assure you, as my reply was much more subdued than what I was thinking. "No, no I'm not on board with that."  "Excuse me?  Well, here's what happened....(insert a play-by-play of less than desirable behavior here, complete with teacher reiterating said sequence)."  So I again launch into the mini-training that I find myself giving to whomever the new principal happens to be.  This happens nearly every year, with last year being the glorious exception.  Perhaps I should just make a recording.  "If I pick him up, that is what he wants.  I am not willing to pick him up for behavior because if his pitching a fit gets him sent home, we are going to see nothing but a long downward spiral of worsening behavior.  We've seen it before."  "Well, SuperMom, do you have any suggestions on how we should handle the situation?"   Gee whiz, since I brought up a few months ago that his behavior plan doesn't have a good crisis plan, and you guys all reassured me at the time that there was expertise in the building to deal with this situation should it arise.... "Well, what I do at home isn't necessarily appropriate or effective at school.  I think it's a very good thing that we have a case conference scheduled next week."  "Well I CERTAINLY hope this is an isolated situation."  Good luck with that.....and guess what?  He pulled it out and had a decent afternoon.  Ta-da!!

Grieving for a Stranger

Unless you live under a rock, you know that Steve Jobs, CEO of Apple, lost his battle with cancer yesterday.  I was surprised at how hard his death has hit me and how I can be grieving for someone I never met.  Why?  Well, every morning, Son 2 gets up and immediately wants to play a game on my iPhone.  This same miraculous device holds his positive behavior system, ABC (antecedent, behavior, consequence) data,  everyone's medical histories, times tables, a PECS (picture exhange communication system) program, a visual schedule, and so much more.  The number of ways in which it has changed our lives for the better is immeasurable.   So many say, "It's just a fancy phone."  No, it's so much more.  It holds our lives and is a window into my son's world that may otherwise have remained closed forever.  It's not a phone, it's a miracle.  God bless you, Mr. Jobs.  Rest in peace, well done!

Sometimes Autism Just Plain Sucks

Don't get me wrong, I've had the joy of seeing the number of gifts that come with being on the spectrum, and there is no question that I am ten if not 100 times the parent and person that I would have been if I had a "normal" life.  But there are still times when autism just plain sucks.  We've been dealing with that lately.  Son 2 has been very sick for almost a whole week.  When he is sick, the nice expressive language that has been cultivated with him all but disappears.  Given that he has pretty severe asthma (in addition to serious food allergies and the autism), this turns me into a full-time detective.  Check his peak flow, check his pulse ox, check his heart rate, listen to his chest, check his temperature, when was the last treatment???  Where as if he could just TELL me that his chest feels tight, I could relax a bit and maybe sleep for more than two hours at a time.  Prayers and Starbucks baby, prayers and Starbucks.....venti double shot nonfat mocha no whip to be specific.

That Was Almost Too Easy...

I had scheduled a case conference meeting for Son 1 today, forgetting of course to consult my crystal ball first.  If I had, I would have realized that I would be stuck at home due to having to take care of sick Son 2 and Doting Husband being out of town.   So I decided to go ahead and participate in the meeting via phone instead of re-scheduling.  I would never have done this if I anticipated any kind of problem AT ALL.  Having read the drafts ahead of time, it seemed that everyone was on the same page.  And once we got "together", that is exactly how it seemed!!  No debating, no defensiveness, and it only took 30 minutes, which is a new record for me on the short side.  My record the other direction is 6 hours and 11 minutes, but I digress.  Toward the end of the meeting, I could feel the hairs on the back of my neck starting to stand up and I had a brief feeling that I had been duped somehow.  The lack of discord made me a little defensive....once bitten, twice shy.  Then I had an epiphany:  This is how these meetings SHOULD go.  Why they don't ALL go this well is beyond me, but then I guess I wouldn't appreciate the ones that do.  :)

Perfectionism

After dropping Son 1 off at school this morning, Son 2 and I went through McD's for a caffeine and sugar fix.  Well, after I ordered, Son 2 got upset and told me "You did it WRONG!!"  I said "What?"  He replied "You got the wrong one!"  I then realized that I had ordered Son 1's flavor instead of Son 2's.  As I said, I had not yet been adequately caffeinated, LOL!  So I pulled to the pay window and asked if they could change it, which they were sweet enough to do.  I told him it was just a mistake and that it was OK now.  He remained unconvinced until he had the right flavor in hand.  I said, "See?  I just made a mistake, it's OK."  His response made laugh!  "No mistake, Mom...not YOU!"  As Son 2's personality has continued to emerge, coupled with the volume of reading I've done, I've come to realize that this quest for perfection, while present in all of us to a degree, is hugely important to people on the spectrum.  I used to think it was just a personality quirk in Son 1, but no.  Why is this?  Well, while I don't claim to know first-hand, I can certainly make an informed speculation.  People with autism need routine in order to feel safe.  Knowing what to expect makes them feel secure, and like the rest of us, when they feel insecure, they are more apt to act in ways that may seem odd.  So mistakes really throw a monkey wrench in thier lives, the bigger the screw-up, the bigger the monkey wrench, and most likely the bigger the reaction.  Remember the theory of relativity?  For every action, there is a equal and opposite reaction.  So while it seems that many of our friends on the spectrum are rigid, demanding sameness, or expecting perfection, they are really just trying to deal with living in a world that can be very scary and unpredictable.  I tell this to people (particularly at school) a lot:  Inconsistency will make him lose trust in you.  Period.  You will find that I sometimes come off as a perfectionistic control freak, which is really not my nature.  BUT!  Please understand that I am trying to help create an environment in which he feels safe.  So really, maybe Son 2 was paying me a great compliment in that he saw me incapable of making a mistake.  :)

Vitamin D Deficiency and Autism

I recently downloaded all the podcasts from the Autism One conference in Chicago in June and listened to them in the car.  One had me on the edge of my seat, so much so that I listened to it again once I got home and took notes.  It featured Dr. Cannell from the Vitamin D institute (and another Dr whose name I can't remember, he didn't talk all that much), and he was talking about how crucial Vitamin D is to our bodies for so many reasons and Vit D deficiency can contribute to autism.

Some of you who know us know that a little over two years ago, I was really ill and saw specialist after specialist that could not figure out what was going on.  It started one Friday afternoon in May.  It was a snow make-up day that wasn't used.  I had been coughing alot that week, but it was spring and I figured it was just asthma.  Two days prior, I had coughed up a little blood, and DH made me call my Dr.  She said it was probably just irritation, and I agreed.  Well, on this day, the kids and I decided to start planting some tomato plants.  As soon as I turned the first spadefull of dirt, I started coughing up blood and lots of it.  It wouldn't stop.  I again called my Dr. who essentially said, "Duh!  Go to the ER!"  Well, after finding someone to watch my kids and driving myself to the ER (where I presented them with a plastic cup of blood), they ran a bunch of tests and found NOTHING.  It had stopped by then, and they sent me home.  I would soon learn that "perfectly normal" can be the two most frustrating words in the English language.  Within a couple of days, I started having what I thought were asthma symptoms, but the inhaler wasn't helping.  My Dr told me to buy a pulse oximeter (the thing that goes on your finger and measures your blood oxygen as well as your heartrate) and start keeping a record.  I noticed that my heart rate would accelerate while my oxygen level fell. Over the next two months, while I saw specialist after specialist and had every heart and lung test on the planet (all of which were normal), my heart rate swung wildly, going from 298 to 28 and back while my oxygen level swung right along with it.  I became so weak that I slept about 18 hours a day, and when I was up, I was using a cane because I was so unsteady.  I was 33 at the time.  Finally the second cardiologist I saw took one look at my meds and said "Oh, it's inhaler X".   I won't say which inhaler it was because I don't want to get sued, but it is the one I see most frequently advertised.  He seemed to be right, because once I switched to inhaler Y my symptoms subsided.  This was late summer, and time would tell that it was sheer coincidence that I improved once off inhaler X.  Fall and winter went along just fine, and then early spring came, and BAM!  My symptoms were back, though not as extreme.  By this time, I had been deemed a head case by more than one specialist whose only course of action was to shove a prescription for anti-depressants at me.  So I went back to my family doc, who I trusted completely and still do.  I could tell she was really racking her brain.   She finally said that the timing couldn't be a coincidence, and decided to run some more specific blood tests.  To this day, I believe that by doing so, she saved my life.  I was B-12 deficient and severely Vit D deficient.  I would later learn that a healthy Vit  level is 35-100, mine was 7.  I would also learn that Vitamin D is responsible for regulating a number of things in the body, one of which is heart rate.  DING, DING, DING!!  She told me that I didn't get that kind of deficiency overnight and that I had likely been deficient for a number of years.  I got to thinking back over the past decade or so.  I had been a vegetarian for a couple of years before trying to get pregnant because it was the trendy thing to do.  Add to that that I had two babies in 19 months and had lost 92 pounds in seven months a little over a year before this all started, and was eating NO red meat at the time, and it really made sense.  I began HEAVY Vit D supplementation, and was given back my health, praise God!

So you can understand why this conversation about Vit D held my interest so intently.  So what the heck does Vit D have to do with autism??  I learned that the majority of Americans are Vit D deficient due to our diets and largely indoor lifestyles (and when we do go outside, we've been programmed to lather on the sunscreen).  He explained the predominant theory that there is a genetic predisposition to whether a child will develop autism.  Since both of my children are on the spectrum, and I have a first cousin that is also, I agree with this 100%, but it's not purely genetic.  He kept talking about the functions of Vit D in the body, one of which is glutathione production.  Very basically, glutathione is your body's way of  collecting the trash.  Through a process called methylation, your body uses gluathione and vitamin C to get rid of all the nasties, lots of which are environmental.   I knew that kids with autism were usually glutathione deficient, but I didn't understand why.  It was also stated that the majority of these kids were severely Vit D deficient.  After I learned why I had been so sick, the boys' DAN (Defeat Autism Now) Dr thought it would be wise to check thier levels as well, and what do you know, while thier deficiencies were not as stark as mine, they were present, and Son 2 was significantly more deficient that Son1.  Son 2 is also more severely affected.  I also learned that breastfed babies have a higher risk of being diagnosed with autism than formula fed babies....WTH??  He went on to explain that since the majority of women are Vit D deficient, that means the baby is not getting the Vit D in her breastmilk either.  They even tested large samples of breastmilk and the majority of them contained only trace amounts none at all.  I breastfed both of my kids, almost exclusively.  Son 1 was weaned to formula at 10 months.  Son 2 never had it.  Again, Son 2 is far more affected.  He stated that based on this combined with other research (and I agree), it is reasonable to conclude that Moms being Vit D deficient puts thier babies at higher risk for developing autism.  Can you say "light bulb moment"?

Cleaning Out and Looking Back

Much to my dismay, it's once again time to rid ourselves of some clutter by holding a garage sale.  You might think that I'm dreading all the prep work involved or haggling with people over a lousy quarter.  Nope.  What is saddening me is that the boys have pretty much outgrown all their toys.  I used to think, "Man, I can't wait to clear all this stuff out."  Now that they've moved on, all I see in the stuff that's going away are the memories and WHY it all came into the house in the first place:  to help rescue our sweet boys.  Every toy, game, video, EVERYTHING that came into this house for a 4 year time frame was lovingly selected to fulfill a very specific developmental need.  To me, it's not an Ants in the Pants game, it's how he learned to take turns.  It's not just a ball pit, it's the only place I could get him to interact with me for a very long time.  It's not just a toy barn, it's where we closed countless communication circles.  It's not just a beat up toy drum set, it's the sheer joy on his face when he opened it at a time when joy was hard to come by.  And it goes on and on...  I was unprepared and unwilling to go back to that time yet again.  You see, in the early days, I developed a couple of coping mechanisms that I still rely heavily upon. 

1.  Keep unbelievably busy.  This never seems to be  problem.
2.  Keep pushing forward, whether you want to or not.  We were racing time here, literally.  Push, push, push, go, go, go....those developmental windows were closing, the first at age three, then at age six, and once they close you have to work twice as hard to get half the result.  This one has served us well, to the point that I really don't want to remember the bittersweetness of that time that was far more bitter than sweet, I just want to focus on where they are right now and think about not only how far they've come, but just how far they have to go and how to fulfill God's plans for them.

New Blog

Hi all!  Apparently SOME sites want me to ramble on at length before allowing me to publish a post.  I always thought getting your point across without a lot of verbage was a sign of intelligence.  Perhaps I'm mistaken.  ;)  Anyway, I thought it was time to join the other blogging autism moms, as a means to help support all families affected by autism.  I will not identify any of our family members by name.  Any comments using names or other identifying information will be removed with due haste.  Thanks for your understanding.  My other blog is still active, I just found the need to privatize it, as it had evidently acquired a following that I hadn't anticipated, LOL!  LMK if you would like an invitation.  :)  I intend to post 5ish times a week, as the kids usually provide plenty of subject matter.  :D