Because Facebook Doesn't Seem To Be The Right Audience...

I needed to write down a couple of hilarious things that B has said over the past couple of weeks.  The kid comes up with some downright doozies!

As I have mentioned before, the poor little guy has asked for a sister for eons now.  It breaks my heart that he thinks a sister would be more likely to talk and play with him.  He's also been saying to me that 'maybe when M is eight he will talk.  Do eight-year-olds have autism, Mom?'  But I digress.  This is about the funny stuff, not the sad stuff.

A couple of weeks ago he asked the other half, again, if he could have a sister.  Unfortunately, the other half's typical response is 'go ask your mother.'  So in he trotted to me as I was working on my laptop to ask for a sister.  When I told him it just wasn't that simple he said, 'Yes, it is!  Just go to sister.com!'  Ahhh...he is too much.

The next story I heard secondhand from the other half.  A little background info:  I, with the mouth only the daughter of a sailor could have, have been making great attempts to say other words beside the four-letter ones that generally are so satisfying to say.  Instead of saying 'shit' I have started saying 'shish kabob.' And instead of exclaiming the word that starts with an 'f' and rhymes with 'duck,' I have been exclaiming (with great frequency, I now realize) 'Jay-sus!'  Now, I was raised a fine Catholic girl.  I realize taking the Lord's name in vain is frowned upon (even if I do put a slightly different inflection on that first syllable), but I figure that the Lord thinks it's better to exclaim his name than to curse, right?  Well...apparently Mr. B was frustrated the other day and copied my exclamation.  The other half looked at him and said, 'What did you say?  That's not a nice thing for little boy's to go around yelling.'  Without missing a beat, B looked at him and said, 'I said 'cheese sauce,' Dad!'
So now I'm going to be saying 'cheese sauce' instead of 'Jay-sus' when I'm frustrated.
This is particularly funny to the other half and I because I have always been told of a story of when he was a little boy and angrily yelled 'God!' in front of his Dad.  When his Dad asked him to repeat what he'd said, he told him, 'I said 'Hod!'  I guess the apple doesn't fall far from the tree, but B beats his Dad on creativity!

Autism: A Full Body Disorder

I posted this on Hopeful Parents earlier this month and neglected to also post it here.  Sorry I have been MIA.  I will follow up with a verbal spewing of the not-so-fun events of the past several weeks.  Of course, there were those six magical days in Hawaii scattered in there, too, and I promise to not forget the niceness of that!

We are in the midst of a burst of long awaited discovery.  For the past three years I have watched my son regress before my eyes, knowing in my gut that something was causing it above and beyond the transition of a cross-country move.  Unfortunately, it takes a lot of tests and the right doctor to help you get to that discovery; but I feel fortunate that one doctor's departure from a clinic was finally the door that opened for us to be able to see the founder of that clinic instead.  

Our current developmental pediatrician has been described by people I have met as 'amazing,' 'brilliant,' and 'talented.'  After only two appointments with her, I also gladly ascribe those terms to her.  She listened intently and came up with three new avenues in which to look for culprits that have attacked my son's body.  The first was a lyme disease challenge test.  There is no definitive test for lyme, but the hope is that by treating a person as though they are infected with the lyme parasite, you have a better chance at stirring up any potential bugs in the body and then testing for them.  Of the three components of the test, only one came back as a very big positive: the measurement of my son's natural killer cells. He has an extraordinarily low number of these important cells which can also be associated with chronic fatigue syndrome.  M has also been hypocalcemic for three years despite supplementing with calcium.  We have never chelated, the procedure you most often hear about in conjunction with hypocalcemia.  The googling I have done on this condition worries me greatly, but this doctor feels that it is likely a direct effect of years of viruses taking their toll on his sytem.  I can only hope that she is correct.

We also tested his blood titers for various viruses.  His labwork came back showing that he actively has the herpes virus in his system.  Many of us will have this virus at some point, but in kids with compromised immune systems, it's even more difficult to shed and can cause swelling on the brain.  Our current course of action is a month-long (possibly longer) trial of the antiviral medicine, valtrex.  While the side effects of this medicine (along with quite a few homeopathic supports to his immune system) are tough, we have seen a calmness and clarity that hasn't been there in quite some time.  The poor boy is burpy and feverish at times, but in the midst of that, he answered my plea to 'please tell Mommy where it hurts' by fervently patting his head and his tummy repeatedly.  I can't quite remember the last time he was able to answer me...even in a non-verbal way.  We have also seen a HUGE decrease in his desire to chew on inappropriate items or go into our kitchen pantry or refrigerator.  This had become a great source of stress for me, so I am extremely grateful for this change.

Lastly, we are going to see a more specialized pediatric neurologist in late July.  A year ago a very basic MRI and EEG were performed to see if M had Landau Kleffner syndrome.  The only thing that came out of the tests was a finding of a rare, right brain wave spike in his right frontal lobe.  This spike is consistent in children with autism, and puts him at a higher risk of having seizures one day.  Though that neurologist closed the book on the possibility of Landau Kleffner, my husband and I always felt suspicious that there was more to things than what the tests revealed.  Our doctor has two other patients that present similarly to M in their late regression, fairly clean, initial MRIs and EEGs, and yet one did go on to see a specialist who in fact found that the boy WAS having sub-clinical seizures that had been harder to detect with a basic EEG.  That boy is now following Landau Kleffner protocol of anti-seizure medication and prednisone and is apparently making awesome gains.  Though the thought of putting M on anti-seizures meds is scary to me (I have a niece who has been treated-and, I believe, harmed-with quite a few of these medications) the thought of him potentially having seizures that have gone untreated for such a long time is even more frightening.

We've still got a long road ahead of us.  Not only will he need immune support for some time to come (if not forever), but I still feel there may be more health discoveries to be made.  I am hopeful that my little man will feel more alert, less uncomfortable, and be the happy-go-lucky boy I once knew again.  I am not trying to 'cure' his autism, but I am going to do everything in my power to make sure his body is as healthy as it can be. 

Hawaii

I wanted to thank each of you for taking the time to share your advice, personal accounts, and encouragement that it would be okay for me to take a trip without M.

I sent many of your comments to the other half--I thought it was very important for him to read so many viewpoints that differed from his.

It has been decided that M will come with us.  I know he will have an amazing time once we get there and am hoping for a happy surprise on the long flight over.  The good news is that my wonderful mother-in-law will be coming with us to help with both boys.  This may be even better than the original plan of just taking B with us as now we will have the opportunity to get away occasionally without either of the kids!  I see fruity drinks with umbrellas and lots of time lounging by the pool in my future and I cannot wait!  The weather has been awful here for weeks, so this trip can't come soon enough.

Thanks again.  I so appreciate those who take time to read what I write, but even more so for those who are willing to share their opinions with me!

Decisions

I posted the following at Hopeful Parents yesterday.  Nothing fancy, but something I could really use your input on as we try to make this tough decision!

Instead of writing something poignant (ha!) or witty (right!), I could use a little help from you Hopeful Parents out there.

The other half is getting to go to Hawaii for business next month and we had planned on the boys and I meeting him at the end of his conference for a family vacation.  We were fortunate to go to Hawaii just over a year ago as well.  It was a lovely trip, aside from the awful-ness that was trying to fly home.  M did pretty well, all in all, but in truth, he is a different child today than he was just 13 months ago.  

I thought I could handle the 5 1/2 hour flight to Oahu by myself, but after flying back home to visit relatives last week, I absolutely know that I would not be able to do that with two young children successfully.  M's sensory issues have multiplied greatly and his ability to not lash out at me (verbally and often with pinching and grabbing) has gone right out the window.  The flights to and from our visit weren't the worst flights we've ever taken, but they were also far from the best, and they most definitely filled me with more consistent stress because I was aware that he was on the verge of a (loud) tantrum at almost every moment of the flight.  

My amazing mother-in-law has offered to fly with us to Hawaii.  This would be wonderful on several accounts.  Not only would she be an extra set of hands at the airport and on the plane (allowing me to actually get out of my seat to use the bathroom, which you know is going to need to happen on a flight that long!), she would allow the other half and I to take our own time, free of the kids, if we wanted it.

But here's where I need your help...she has also offered to fly to our home in California to stay with M while the other half, my typical four-year-old, and I go to Hawaii by ourselves.  The other half won't hear of it, but I have to admit that I think it is a really nice idea.  First off, we have two other domestic trips planned this year that M will absolutely be included in.  And second, doesn't B, my typically developing child, deserve a vacation where he can go places we normally wouldn't be able to go without the constant worry that it could end at any moment based on his brother's needs?   And as guilty as it makes me feel to admit it, I could use a 'normal' vacation as well.  It would be great to eat out at a restaurant, leisurely, without worrying that M will yell, or worse, try to grab food off of another diner's plate.  (yep, that happened to us the last time we went to Hawaii)  

It is hard to imagine how looking at photos after a trip like this--with one very important family member missing--will make us feel.  Just thinking about it certainly stirs up all sorts of emotions in me.  And I know that M adores the sunshine and being at a hotel.  But would I be the worst parent in the world if I actually did take my mother-in-law up on her offer?  Have YOU ever made this sort of decision?  I would love to hear your personal thoughts and stories.

Insight

I have a group of Moms I meet for a quick breakfast, two to three times each week.  We formed our bond through our children, all who have special needs.  Our children vary in their diagnoses, which is actually way more beneficial than I would have been able to predict when we started our breakfasts two years ago.  One friend has an adult daughter, almost 22 years old, who has non-verbal learning disorder.  A is a lovely, outgoing and talkative girl.  Funny since the label she has been given would imply that she didn't speak.  She often (without realizing it) offers me exceptionally poignant insight into the world and minds of people with special needs.  This morning she said something that put a little pang in my heart.

As she was relaying a story of her early years of elementary school, she mentioned a girl who was in her special education class that had autism.  This girl would, as so many people on the spectrum do, flee the classroom-seemingly for no reason-and retreat to the playground swings.  A told me that the teacher was new to teaching children with special needs and could not understand this girl's behavior.  At seven, A was able to tell her that the girl just felt overwhelmed and needed to calm herself.  But that wasn't what struck me so deeply.  She went on to say that she told the teacher that kids like this girl just needed people to be nice to them; to try and encourage them rather than discipline them. Because when you try to discipline her, she gets scared. There...those last three words.  That's the part that stabbed me in the chest for a moment.  You see, I struggle greatly with the line between encouraging M and disciplining or reacting negatively to him .  And I feel like as his sensory troubles increasingly take over his ability to engage with the world around him, the more my likeliness for 'disciplining' him becomes.

Over the past month, M has started going into our food pantry and our refrigerator and freezer.  He does this at least 20 times a day whether I am in the room with him or not; whether I have just scolded him for doing it two minutes earlier or not; whether he has just eaten something...or not.  His favorite targeted items are plastic  tubs (like cream cheese or yogurt), of which he will gnaw on the edges of the lids.  He also really likes to grab the boxes of broth and soups in the pantry and squeeze them or chew on them.  The 'normal' response to this behavior would be to ask a parent 'do you have other appropriate items for him to chew on?'  And the answer to that would be, 'more things than you could possibly imagine!'  I would estimate that over the past three or four years I have probably spent a few thousand dollars on 'chewies,' or replacing clothing or other ill-fated items that met M's mouth.  He will generally find a chewy of choice and stick with it for a few months and then get bored with it and need to find something else.  For those not in the know, many people with oral needs such as this, use therapeutic chew tubes, 'chewlery,' or vibrating z-vibes, etc.  These items are not cheap, especially when they tell you that your child shouldn't be able to chew through the item, but he does!  I can't even tell you how many of those chew tubes we have chewed through at around $6-7 a pop.  And as much as you hate feeling like your child is a dog given items to occupy his chewing desires, the alternative is worse.  I've mentioned it here before, but our book and dvd collections are a nightmare; chewed on cases and toothmark-filled book bindings.  It's hard to not get a little crazy over the fact that your child can't be trusted to have a library card for school because you'll end up paying for each book he checks out. (and you have to hide any book your younger son checks out) It's hard to tell your younger, typical child that you're really sorry that his favorite book just got ruined.  And it's hard to think that you will likely not ever be able to have those 'nice things' you sort of imagined you'd one day be able to have when your children got older.  Shallow, absolutely.  But that's sometimes how I feel.

Back to what A said about discipline making someone afraid, and I use the word 'discipline' simply because A used it when describing what she saw as a child...It's whatever word you want to ascribe to the reaction you have when a child who may or may not have the cognitive ability to understand his actions does something that you believe shouldn't be done.  I struggle greatly with controlling my emotional reactions to things I think aren't right, and in this world of autism, there are a lot of things that aren't right to me that I probably need to let go of and relax on a bit.  I'm totally a libra; a strong sense of right and wrong and a sensitivity to injustice.  But with autism, what I perceive as wrong, my child doesn't. In fact, beyond perceptions, his body simply has needs to fulfill that are completely out of my realm of understanding and must be met in order for him to attempt functioning in my world.  It's an incredibly difficult concept to try and grasp for anyone, even if you're the parent!  But it's getting to that point of accepting what is out of my realm of feeling for myself that has to occur if I am to find some semblance of peace in my new normal.  And because if my own child can't feel safe and unafraid with me then how will he ever feel safe and unafraid with anyone else?

And for the record, M opened the fridge three times and the freezer once during the time it took me type this.  Fridge lock and lever handle cover are on order from Amazon.  Thank goodness for the prime membership..they'll be here in two days.  I'm looking forward to moving on from this habit...

Dogless

For the first time in 17 years, I do not have a dog following me around the house.  Last night I went to bed and kept looking at the dog pillow on the floor, expecting to see a furry mass snoring happily, but none was there.  I didn't have to bargain with the other half to see who would be in charge of letting the dogs out one last time before bed.  At dinner, there was no one for me to shoo away from begging at my children's feet; and no one to snatch up the crumbs that still lay unswept on the floor this morning as I type.

Just 15 days after saying goodbye to Sydney, I realized it was also time to say goodbye to Hank.  How these two animals that were born about three years apart were able to time their endings within two weeks of each other is the stuff I can only philosophize about.  It was clear that Hank was sad without his longtime companion, but how was it that his cancer came to be known only two weeks before hers caused her demise?

Unlike Syd, Hank had gotten to the place where no food tasted good to him or could be tolerated.  Sydney had gulped down her last supper of bacon and eggs, and greedily snatched a chocolate chip cookie bar from my purse (one that had grown stale after being uneaten by B) in the parking lot of the vet's office just before I took her inside.  While Hank, who had only been eating bits of roasted chicken for days, wouldn't even attempt the popcorn I made him; the popcorn he'd have pulled out all the stops to steal from us only weeks earlier.

I took Hank for a walk behind our house--he chose to amble up the hill rather than taking the stairs, which seemed an odd choice--and after saying goodbye to the rest of the family, I took him to the coastal trail to lift his shaky leg on as many plants as he wanted to.  It was the best he's ever walked on leash for me, and he almost tricked me into thinking I had made the wrong choice and that maybe he could stay with us for a bit longer.  But the seizures I'd witnessed two nights earlier, and the bile I had been cleaning up constantly  for two weeks allowed my heart to know that it really was the right time.  Not too early, and not too late.

So now I am dogless.  Though I know I have needed some relief of stress in my life, I am at heart a dog person.  I need a dog's companionship and security.  I am feeling a bit lost today, though I know that will ease with the days.  The other half wants to take a break from dogs for a bit.  I felt a bit angry that he reminded me of that as I cried last night.  I am hopeful that the most amazing dog we could ever hope for will somehow find us.  It's happened to me before when I was fostering, but those dogs were always meant to move onto someone else.

In the meantime, I will fondly remember the gifts and annoyances these wonderful spirits bestowed upon me and my family for so long.  I will miss you, 'Stupid Hank.'  I hope eating poop isn't frowned upon in heaven.  Maybe it's even so great as to have poo-flavored dog biscuits for you?  Now that would be the perfect Hank-heaven indeed!

Autism & Emotion

Today I'm contributing this piece over at Hopeful Parents:

We recently lost a beloved pet to cancer.  She had been with us for fifteen years and before M's big regression three years ago, had an other-worldly bond with our little man that she tried as hard as she could to maintain even when his seeming indifference to her (and most everything else) seeped into  their relationship.  M is non-verbal, but I am certain that the words from a thousand languages float intelligently through that beautiful brain of his...but if only we could hear them and know that he felt the same emotions we feel, well, then I suppose I wouldn't be here writing this particular post.

Over the past nine days since we said goodbye to our dog, I've wondered what my son thinks about her missing presence in our home.  And trust me, it is a gaping hole.  This dog was a cattle dog; bossy and stubborn, loyal and loving.  She always made you know she was there, and I've done many double takes since she died because I was certain she was still there, right under my feet, about to knock me down.

It's really bothered me-saddened me-to think that M either feels no emotion toward her passing or, worse, that he feels something as great as the rest of us and it is trapped inside his body, twisting and turning and trying to come out, but not knowing how to.

We've talked quite openly about it all with M and his younger brother.  Our dog deteriorated before our eyes over the past several months in so many ways that it wasn't something you could miss even if you tried.  So why has there been no inkling of sadness from our boy?  

M shows emotions in many ways, so I know that the capability is most certainly there.  He let me know that his feelings were hurt when I yelled at him for smooshing to smithereens a sleeve of crackers recently.  He cried as if to tell me, 'I can't help that I did that!'  He lets us know he is happy to see us when we return from those rare Mom and Dad-only outings by jumping up and down, running away from us with a huge grin on his face.  

The real kick in the pants is that we will also have to say goodbye to our remaining thirteen-year-old dog in the coming days or weeks.  

Less than two weeks before we said goodbye to the first dog, we learned that the second also had an aggressive type of cancer, this one with an outlook of generally 20-60 days of life remaining after diagnosis.  Again, we have told the kids that our friend is sick and we should be especially kind toward him right now.  Is M processing any of this? 

I know it is almost cliche to bring up the 'mysteries of autism,' but this one truly mystifies me.  Some aspects of my son I am able to accept as being just as they are, but this one makes me want to dig deeper to truly understand.

And yet, I am also struck by the thought that perhaps the answer to what my son is feeling is so much more evolved than something my less-complex brain is able to conceive.  What if his reaction to his pet's death is a higher form of acceptance than the tears of my grief could ever achieve?  What if his method of coping is on a totally different plane from anything we ordinary humans are able to accomplish? I suppose that until one of those languages emerges from his brain in the form of words I am able to comprehend, I will continue to wonder...