It's The Little Things

I took both boys to Whole Foods the other day at the busiest shopping time of the day.  I knew this wasn't my best idea, but sometimes you have to get groceries and can't think about all the reasons why you know it isn't going to be a pleasant experience.

Let me preface this story by saying that M and I have been enjoying quite a few one on one shopping trips lately.  He has become very good with my prompt of 'hands on the cart' as the way to keep track of him and not have him wander off when I am reading a label or otherwise preoccupied for a split second.  Keeping his hands on the cart also helps him to not be tempted to do his contorted-faced, hopping, wild hand flapping dance that brings unwanted attention to us in a split second.  I need to get through my shopping trip without feeling like I have a hundred eyes watching us from aisle to aisle.  (and, yes, I am much better about tuning said eyes out, but let's be honest here...you always know they're there!)

Having both boys with me brings on challenges that I can't always figure out.  Yes, my little B man is quite the talker and this may put a little more stress on M; but during this particular trip, B had been warned (heartily, I might add) that he best keep calm and quiet so as to not insight aforementioned wild hand flapping dance...or worse, the eight-year-old, appears-too-big-to-be-having-that-sort-of-public-tantrum tantrum.

B actually was doing a great job of staying chill while riding in the seat of the cart as M and I pushed him along, but apparently the crowds and overstimulation of the store were just too much for M that day, and so every five minutes or so, I found myself trying as calmly and discreetly as I could to redirect my eight-year-old from crying and pitching a fit.  Yes, many people will jump ship in these situations--and we've done that before too--but I live 30 minutes from Whole Foods and I sure as hell was going to finish.

You know, as much as I accept that autism is a big part of my life, I am human and it is ridiculously frustrating to have your child acting out on what should be a simple grocery shopping trip.  I had not asked much of M that day in terms of doing things that were out of his comfort zone, so I didn't think that a 30-minute grocery trip was out of the question for us that day.

As we stood in the pasta aisle trying to find gluten free lasagna noodles for the lasagna I'd promised B I would make (and the one I couldn't possibly have made with wheat noodles because I didn't want M to feel left out) the sweetest woman came toward me.  It was clear she'd come down that aisle specifically to find us.  With a gentle hand she reached out and touched my arm and said to me, 'You are doing such a good job.  You are a good Mom.'  My reaction was to say, 'Oh, you're going to make me cry!'  (as she was about to cry by just saying those simple words to me)  But then I thanked her profusely for her words and told her how much it meant to me that she took a moment to say that.

I have to say that I held my head much higher for the remainder of the shopping trip.  I felt calmer in my heart and I put the smile back on my face.

I don't know if that woman had a child with special needs of her own or loved someone who did.  But with a seemingly simple gesture, she turned around a bad moment and turned it into a positive one.  It probably wasn't easy for her to come and say that to me either.  You never know how people will react to things, even if they are meant to be kind.  But she took a chance on me, and I am grateful that she did.

So if you see a Mom struggling a bit with a child--special needs or not--remind her that she is doing a good job and she is a good Mom.  We could all use a little praise from time to time, and having it given at our lower points rewards us that much greater.

It's Hard To Blog When You Don't Have A Computer

Ye ole laptop was struck by a gnarly worm or some such malicious thingamabob that I was unable to figure out and I was android phone-only for about six weeks.  It sucked.  What the heck did we do before the interwebs?  Seriously?!
It's been a busy, busy summer 'round here, and frankly, I'm tired of leaving my house.
The creative juices are not quite flowing yet for me to jump back into full blog-irific hilarity, so I'll give you a brief M run-down:
-Confirmed diagnosis of hypoparathyroid disease (a calcium disorder)
-An ACTH stimulation test showed that he tested negative for Addison's Disease, though because he has some symptoms of the disorder (belly pain, low blood pressure, low cortisol and hypoparathyroid disease) we may test again in about a year.
-Didn't like the resident doctor we were seeing at UCSF or her inability to read a chart and see what we'd already been doing with no results, so I switched to Stanford.  Score one for Mom's good judgment.  New resident is a dream; attentive, enthusiastic, and--gasp--actually prescribing treatment that is delivering results!  Calcium number is in the 'much better' range.
-M, unfortunately, has to endure weekly blood draws in order to constantly gauge calcium, phosphorous, and various other levels that my brain can't currently recall.  Thank you, emla cream.  My boy is brave little champ.
-Genetics appointment coming up on September 6th.  We've done very basic genetic testing twice before (the last being over two  years ago), but now that we have a bit more information on the endocrine front, they are going to do some more specific testing.  Our endocrinologist has a strong hunch that he may be diagnosed with DiGeorge Syndrome, but we will see.  It would make sense in many ways.  If any of you reading this have experience with DiGeorge, I would very much like to connect with you!!  Please leave a comment for me, if you would.

Enjoy the last few days of summer to those who haven't started school yet!

This Is As Controversial As I'll Get

I just have to get this off my chest and I am wondering how many of you out there feel the same as I do.

Clearly the vaccine issue has been at the heart of the what-causes-autism debate for quite a few years now.  When friends (and strangers) ask my take on whether or not vaccines cause autism, my answer has remained the same since before M was officially diagnosed.  That answer is that M showed signs of developmental delay from very early on, so in OUR case, I do not believe vaccinations were the sole cause of his autism.  However, I do wish that I had spread them out those first years rather than following the recommended plan because I do believe they very well could have damaged his immune system (and thus his neurological system) along the way.  M clearly has immune system deficiencies, and I think moderation is key for every single thing I put in his body especially when it comes to toxins.  The fact that he's likely had the herpes virus actively wreaking havoc on his system for years with the inability to shed it naturally is proof enough for me that my particular child has difficulty when it comes to processing foreign viruses and bacteria.  And please note that even though we have tried biomedical intervention, I am not nor have I ever been one to go singing its praise from the mountaintops in hopes that every other family with autism will also go down that path.  In fact, I have always been very honest with others who ask in saying that we have actually not seen any results from biomedical intervention, but that some of the supplementing does resonate with me because of the previously mentioned immune issues as well as lab results that have shown clear deficiencies in several areas.  I mention biomed here because of the point I'm about to get to...and the fact that naysayers seem to think those who believe vaxing causes autism are also quacks who shell out boatloads of money on biomedical interventions.

So to my point...I am sick and freaking tired of feeling the divide that has clearly made its way into the autism parent community.  I am not a person who cares to or thinks that I even can get into an intelligent debate with those who have made it their mission to memorize every statistic or study Paul Offit and others are involved in.    I am not interested in continuing to vilify Dr Andrew Wakefield or other scientists who believe vaccinations *may* have caused autistic enterocolitis (since that was Dr. Wakefield's claim, folks) or that they may damage some children.  Frankly, I barely have enough energy to remember to punctuate the sentences within this blog post as my four-year-old screams the phrase 'poop in your underpants!' at the top of his lungs over and over.

What I do know, though, is that I have some very dear friends that I have met along the way of this autism journey and they believe that vaccinations were directly involved in the decline of their children into autism.  I have listened to their heartfelt stories of typical development turning to seizures after a vaccination and thus a withdrawal from the rest of the world.  I have heard about gut biopsies revealing crazy-ass viruses present in their children's system. And I believe them...because they are parents on a blind journey just like me wondering how this could have happened to their child and why it is happening to so many others around them.

I have stopped reading the blogs of some very outspoken proponents of the people-who-think-vaccines-cause-autism-are-stupid camp.  Though these people may be bright and well educated, I no longer have patience to tolerate their penchant for talking down to those who believe differently.  If you can speak calmly and kindly about your opinions, that is one thing.  When it becomes clear that you think everyone who doesn't agree with you and 'science' is a fucking idiot, I'm out the door.

Stepping down now...

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. 

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...

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...

Have You Seen This?

Truly amazing and beautiful...

Community...I Want One

For those of you readers living around me in my beautiful, coastal town...fear not!  I totally realize that I have a community here--and a damn good one at that.  It's pumpkin festival time here again and even though the traffic sucks, the vibe is delicious and fills me with the warmest of fuzzies.  I love this little town.  I love how excited my children (well, I'm making assumptions for M here) get when they pass by all of the pumpkin patches.  I love the pumpkin weigh-off and the small town parade.  I love my friends.  I have such wonderful friends in my life here; friends who always have my back when I need them, who are always up for a wine playdate with the kiddos, and who listen to me when I just need to talk.  Of the latter, I sometimes wonder why or how they can possibly want to keep calling me or inviting me to things.  Sometimes I annoy myself with my autism talk.  So, thank you, beautiful friends, for continuing to like me.  No matter where the wind takes my family down the road, I sincerely hope you are still a part of my journey!

But back to the part about wanting a community...we move around a lot.  It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood.  A good friend often jokes that we must be a part of the witness protection program.  I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992.  That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space.  I'm tired of not knowing where I am supposed to be.  It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here.  Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is.  I'm sure that sounds absolutely ridiculous.  It sounds ridiculous to me just typing it.  I guess I am having trouble finding the right words to truly describe how I'm feeling.

Another problem is the other half.  I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging.  Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past)  Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him.   I need a village, he does not.  I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult.  I find myself going to things with only B.  M's disability makes outings like yesterday's parade a bit more challenging.  And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately.  Our family is often divided as I am aware so many autism family's are.  But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.

The question of where to live for the long haul haunts me daily.  What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers.  But that would be because it's his friend and family base...his comfort zone we'd be returning to.  As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants.  I love the California lifestyle.  I love how easy going people are here about the way others look.  (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense)  I love the weather here.  I love the ocean and the mountains and the trees.  I love that I live in a small town where I see at least one person I know (and like) every time I go to the store.  And on the other side of the coin, I love watching my children play with their cousins back on the mother ship.  I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back.  I love that it costs a hell of a lot less to live on the mother ship than it does here.  And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.

Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad.  For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities.  And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half.  But will we be in this same position in 30 months after settling down there?  So many questions that I suppose no one can really answer for me.

I need to do a better job at living in the present, but my head sometimes just won't allow it.

The Twilight Zone

Imagine a world where your school district gives you *nearly* everything you have asked of them.  A world where when you suggest that your child might benefit from being taught to use an augmentative communication device, they readily agree to pay for you (and him) to go to a center to try out various types.

Imagine a world where one device is chosen by the team (a Nintendo DS) despite the Mom's concern that its screen is too small for her son to use. (Though the Mom doesn't want to make too big a fuss about it since, hey, the district is actually finally moving in the right direction here!)

Imagine that a couple months' after that decision is made the Mom very briefly mentions that over the summer her son's interest in the family's ipad has grown significantly and that she is still a bit concerned that the Nintendo device won't work because of her son's fine motor skill issues.

Now imagine a week later getting an unexpected phone call where you are told, 'No problem, we are happy to purchase your child an ipad AND the prologquo2go software for it AND we plan on teaching the district's speech and language pathologists how to use the program in case it is warranted for other children.'

SHUT UP.

But, yes, folks this very thing has happened for our family and for our M from a district I have struggled with for two years.  I think I am in the twilight zone and something really screwed up is going to happen that will snap me back into reality!  I am so ridiculously excited about having a team to help my little guy learn to use this communication tool, and I hope and pray that it is the thing that helps us to finally get a gauge for what my little guy wants and feels.

Last night as M was laying in bed, I asked him, 'What do you want to be when you grow up? Do you want to be an artist or a musician?  Do you want to be a fireman or a teacher?'  And my boy seemed to get tears in his eyes as he stared intently at me during my questioning.  It is heartbreaking to miss these moments with your child because he is non-verbal.  B proclaims his desire to be a different thing almost daily and I love hearing about it.  Oh, what I would give to know what M dreamed of being!

So while I cannot allow myself to get my hopes up too terribly high that this will be the thing that finally helps our boy to 'talk,' I hope my time in the twilight zone extends a bit longer so that I am able to witness the transformation from a boy who can't communicate with words to a boy who can communicate with the help of an electronic device.

This Is A Post About Poop

I just thought I'd warn you, okay?

If you're a parent of a child with autism, you probably chuckled and thought, 'Yeah.  SO?'

We just got back from an appointment with our developmental pediatrician who is also a DAN! doctor.
Our M has had a history of some pretty wicked gut bugs that have required the treatment of some high-powered antibiotics and yeast treatments to kill them.   And then, of course, our daily dosage of probiotic to keep him supplemented in the good stuff.

M has a really distended tummy that looks kind of painful at times and is often shown off to the world because he is constantly lifting his shirt and tickling or rubbing on it.  He's a size 8 in the waist and a 6X in the length, so we have one heck of a time finding comfy pants for him.  I'm pretty sure he's destined for a life of elastic or drawstring waistbands, the poor boy.

Anyhow, we did yet another lovely stool test to see if his previous gut buggies were back in force causing the latest belly pain and distention.  For those of you who have never had the pleasure of trying to get a stool sample from your child, let me offer you a pat on the back and a 'lucky you' because it's one hell of a treat, let me tell you.  The past four times I had to do this, I obtained our 'specimen' by holding the lovely fast food, french fry-like paper tray the lab gives you in between my poor child's legs as he sat on the toilet (you'll never eat fries from In n Out burger with the same gusto, I promise you).  This while simultaneously hoping that he does not squirt out a tiny bit more pee on my wrist or worse, in the sample trapper, thus tainting the french fry tray and rendering it useless for said poo sample.

M was younger and much less stubborn the last times we tried this, so I was able to get what I needed with my arm going only partially numb.  That method was not going to fly this time around, however, so I needed to get creative.  I'd heard of people turning off the toilet water after flushing so that the toilet was empty and then putting some sort of bowl in there to catch the poo.  I don't know about you, but I like my cookware and storage receptacles too much to subject them to that sort of torture. Because surely people don't actually keep them after they've been used to trap poo, right? So ingenious girl that I am, I decided to create a tin foil poo catcher by spreading a piece out beneath where said poo would fall (and away from any potential pee tainting), securing it by putting it between the bowl and the seat.  Since I am no longer employed in the out-of-house work force, I felt pretty good about using my remaining brain cell to come up with such a contraption.  I'll gladly lend the rights of my idea to any of you in need of it :)

I will spare those of you who won't be subjected to this delightful process the details of what happens next with the ice cream tasting spoons supplied in the kit.  Let's just say the other half could never handle this without losing his lunch...trust me.

Fast forward to today's result-learning doctor appointment...I would hereby like to exclaim to the world that M, distended belly and all, has NO weird buggies inhabiting his gut NOR any yeast wreaking havoc.  The only negative blip in the report was that he's lacking in some of the good gut flora; a point that stumped our doctor since M has been supplemented daily with one of the strongest probiotics.

We still can't figure out why the continued loss of words (down to no regularly heard ones at all) and the potty training regression.  Despite that, I'm still pretty freaking happy to not have to wrestle with my 61-pound seven-year-old in order to give him antibiotics and anti-fungals.

Another oddly fulfilling day in the life, I suppose.  I'll take it!

An Odd Sort Of Contentment

Do we parents of kids with special needs ever get to the place where everything is in a state of balance?  For me, the answer is most definitely 'not yet.'  But I have high hopes of getting there...maybe for a day at least.

However, I discovered a feeling yesterday that sort of caught me off guard.  As you may have read previously, after a very long battle with our school district they hired private 1:1 aides from an outside agency to work solely with M at school.  These aides are legitimately ABA trained unlike the paraprofessionals who hadn't the slightest idea what they were doing, and to my son's detriment, I fully believe.  These aides began working with him last February.  Then, in May I was able to finally begin an intensive in-home ABA program fully funded by our insurance. (minus a small $15/day copay)  Unfortunately, we have one agency providing the ABA at school and another agency providing the home services; but these people have all come to surprise me in a very positive way...they actually want to work with one another to make sure that all are on the same page in teaching my son important life and educational skills.

A meeting was called by the school's overseeing behavioral analyst, and we all came together yesterday to find that both groups were doing very similar tasks, and where one was doing something different, the other offered to take the time to create a detailed list of their steps to achieve a goal.  I was floored.  It may sound like something one shouldn't get floored by, but having heard and seen how school districts hold what they provide your child very privately, I never in a million years thought they would be flexible enough to listen to someone else's ideas and theories.

We've agreed to send home a detailed daily journal so that school and home therapists continue to have dialog between one another.  We've agreed for the case supervisors to meet in person again in the future.

Yes, these outside agencies are being paid a large price for their services...but I really believe that they give a shit about my child and about his future.  It's thrown me for a loop, in all honesty.  But even more than that, was the feeling I left with yesterday of worrying that if we do get to move to a new district I may have to start this fight all over again.  Dare I say that I am *almost* content with my son's current placement?

I still feel the school's campus and it's highly mixed needs, special day classroom are not the most ideal for M, but given what we have to work with and the very unlikely chance we would be successful in getting the district to pay for the crazy expensive private autism schools I covet, I think we're doing okay for ourselves at the moment.

Now don't go thinking I've given up on those coveted schools.  I most certainly have not!  I think that if M could actually attend one of them our lives would be even more fulfilled than they are currently and I think M would be able to gain back even more of what he has lost.  But for the moment, I will gladly take this feeling of partial contentment...of not needing to fight and worry for now...and I will enjoy it.

Autism In Film

Everyone is abuzz about Temple Grandin's appearance on the Emmy's last night.  For those reading this blog who have been living in a cave, Claire Danes starred as our most notable, contemporary autistic person, Temple, in the HBO film 'Temple Grandin' which was nominated for 15 emmy awards, and took home seven!   I have to admit that I have not yet watched her speech, but plan to as soon as I'm done here.

Okay, I lied...I had to go view some of the acceptance videos myself before I could proceed.

The last bit I saw shows Temple (in regard to making her story into a film) saying to the executive producer and founder of what is now Autism Speaks, 'I knew that a Mom would do it right.'  Damn.  That just made me a little teary.

It's fantastic that a film about an autistic person has garnered so much attention and award.  Yes, we all have heard about autism and know someone(s) afflicted with it, but in reality there is still not enough being done to understand what the hell is responsible for the rise in cases.  And don't get me started on all the people (my parents included) that like to immediately follow my previous sentiment with one about how we have better diagnosticians that are labeling people autistic more readily than they were in the past.  That's just not the whole picture.  That's only a teensy tiny sliver of it.

But that's not what I want to talk about here.  I want to talk about the four autism-related films I have had the pleasure of watching this past year.  Whether you have been touched by autism or not, I'm betting you won't leave any of these with a dry eye.

One is, of course,Temple Grandin's story, and the other three are documentaries.

I've mentioned before about my experience meeting Rowan and his family in 2009.  They are the subjects of the book and film 'Horse Boy,' about a Father's quest to help his severely autistic son through the help of horses and Mongolian healers.  Rowan and his parents live in Elgin, Texas, a small town outside of Austin near where we used to live.  They run the Horse Boy Foundation, which provides therapeutic horseback riding to children with developmental disabilities as well as to neurotypical kids.  As amazing as the book was to read first, watching the film months afterward was even more rewarding.  To have sat down and spoken with Rowan and his Mother personally, and to have heard her tell me that-as crazy as it sounded-these healers really and truly were the only thing that had made a lasting difference to their son...well, that in itself was also a magical experience.  It's hard to not feel hope and a bit of 'would that work for my child' when you speak directly and frankly to someone who has had such a mystical experience.

Next is 'Autism:  The Musical.' This is another great film that was presented by HBO.  (Go, HBO!)  This one's been available for a few years, but I was just finally at a place in my own journey where I felt I could watch it.  Naturally, I sobbed through the whole thing.  But it was totally worth it.  It's a beautiful, uplifting story about one Mom's desire to create something theatrically beautiful with a group of kids,(including her own severely affected son), all on the spectrum and functioning at various levels.  It's brilliant and I found it oddly comforting to see a couple of other kids whose autistic traits were very similar to M's.

Finally, there is another HBO documentary, 'A Mother's Courage:  Talking Back to Autism,' that was definitely the toughest of the four for me to watch, but by far the most rewarding.

Wow.  I'm not going to lie; if you have a severely affected, non-verbal child, this one's going to be difficult for you.  But in the end, it offers so much hope and insight.  It is truly a special piece.

Toward the end of the film, we learn that the beautiful, non-verbal child at the heart of the documentary has desires to play the piano and compose music.  I'm not going to go into any further detail than that, but let me  just say that when this  moment occurred, I felt my stomach go into knots and my heart explode as I wondered if somewhere deep inside M he wanted to tell me that he, too, had passions and desires to be someone beyond what his autistic brain and body currently allow.  I actually don't think I can type any further about it without the emotions taking over me...it is that powerful to me still.

I realize that not everyone wants to go to 'that place' by watching films that stab you with emotion, as these surely can.  Even the other half has refused to watch a single one of these despite my pleading with him to do so.  But perhaps if you're feeling like you don't see other kids who do the things yours does, or you want to learn more about what other parents of autistic children have found helpful in their journeys...or you need to have that cathartic letdown of a good cry, then rent one of these.  Just make sure you've got a box of kleenex and a carton of Ben & Jerry's next to you.  Trust me...you're going to need it!

Seven

I wrote the following for Hopeful Parents today.  Be sure to check out their site including their newest contributor, Valerie, from Jump on the Rollercoaster!

I have the pleasure of writing on the 6th of each month for Hopeful Parents, so I will also have the pleasure of writing a post to celebrate each of my son's birthdays.  Today M is seven, and like the last, I find this addition of a year to be bittersweet.  I am proud of my little man and what he IS able to do every day.  He has such a genuinely beautiful soul that shines regardless of his lack of words.  But it is hard to pass the years-the ones you had expectations of before he became him-and not feel a tiny bit crushed at what isn't.

This year, I have found it particularly difficult to hear about all of the other children M's age who are joining team sports.  Sports were and still are a big part of the other half's and my life.  I began playing soccer at age six as did my husband.  I listen to my friends talking about juggling practice schedules, first goals scored, paying for equipment, and cheering in the stands with other parents.  It makes me feel the slight twinge of the green-eyed monster, I must admit.  It makes me feel like we weren't invited to the party, and that everyone forgot and still wants to tell us how great it was afterward.

And the thing is, I don't want my friends to stop telling me about it.  I truly do wish to celebrate each of their children's achievements.  Oddly, I suspect that when friends tell me what their children are participating in, they don't even think about M as being the same age and missing out on those opportunities.  In fact, sometimes it is hard for me to remember that M is the same age as their kids.  Or perhaps this is just me projecting my sadness that age hasn't quite caught up to M; as though he is this Benjamin Button sort of being, aging in reverse.  

As time has progressed, my boy has lost words he once had.  He has lost the ability to be potty trained during the daytime.  He has lost interest in his peers.  And yet the calendar shows me that he is seven. Seven years old.

We participated in Special Olympics baseball this past Spring, but the realization that this was more so we'd have that photo of him in a baseball hat and jersey rather than for his true enjoyment came only a few practices in.  My boy would rather watch than play, and so this is how we participated instead.  And truly, I was totally okay with that.

 I'm becoming okay with a lot of things I didn't ever think I would just be 'okay' with.  It is a long journey to full acceptance, though, and one with which I will always wrestle.  I think the line between acceptance and giving up a hope for him to be able to function at a higher level is a fine one.  

Regardless, I will continue to build up each birthday with as much gusto and hype as I can muster.  I will bake him his cake and put the candle he is not able to blow out himself on top.  I will shower him with presents I am not entirely sure he will enjoy.  And we will sing, and we will smile with true joy.  Because we love him...No matter what.

Remembering

I often get asked, 'When did you know something wasn't right with M?'
I don't believe our situation has been quite the same as so many families who have a child with autism, so I thought I'd share it with you.
M was a happy, healthy boy born past my due date by induction.  (and, yes, this is one of the many things that I sometimes torture myself with as I think of the 'what ifs')

He was bearing weight on his legs at an early age.  He smiled on time.  He held his head up strongly.  He sat up early.  The one milestone he didn't make that first six months was rolling over, but we'd seen it happen one time and thought it wasn't a big deal.

Around six months our happy boy began to do a few things that puzzled us.  He would incessantly shake his head-a giant grin on his face-as though he were trying to say 'no.'  I mentioned it several times to my pediatrician in conjunction with the note that we also have a nephew on the spectrum, and each time I was brushed aside like I was saying the silliest thing she'd ever heard.  M's head was also in the 95th+ percentile, which we questioned as well.  Though in truth, my family has a history of giant Polish/Irish noggins!

At nine months M began to do another strange thing.  While sitting up, and generally when he was very excited, he would put his little hands in fists out in front of him, tense his whole body to the point of shaking ever so slightly, and yell out happily, 'EEEEEEE!'

Again, I brought up this peculiarity to my pediatrician.  Again, I was told, and I quote, 'This child is NOT autistic.'

A year came and I can recall looking at photos much later how withdrawn and timid he seemed at his birthday party as his Aunt K held him during present-opening time.  I vividly remember saying that it was probably because he didn't know her well yet and was being shy.  But was it really that, or did he falter further after his one-year checkup?  I will never really know.  I always am careful to tell people that were were not one of those families who saw overnight changes in M after a vaccine.   There were the signs I mentioned earlier that tell us he experienced delays from birth.  I try not to get too obsessive or caught up in the vaccine debate, but in my humble opinion, I do wish that I had spread out and declined some of the vaccinations I did give him.




Back to his first year...I became very ill right around that time with a mystery, mega-virus for three whole months.  Multiple tests and trips to specialists (including a rheumatologist since my mother has severe rheumatoid arthritis) brought up nothing but a faint positive on the mono spot test.  It was the rheumatologist who told me that I likely did not have mono, but a mega virus that mimicked it with no name.  Regardless, it was the scariest kind of sick I have ever been and it left me in an awful state of depression.

M wasn't crawling at this point, yet another thing I had pointed out in concern to my pediatrician.  Even though I knew in my heart that this wasn't right, I remember feeling so ill that I was silently grateful for his immobility at the time.  It was about a month into this that my brother-in-law, the father of our nephew who is on the spectrum, spoke to my husband about his concerns for M's development.

When the other half came to me I felt very angry and defensive.  I do feel sorrow for my initial reaction.  I know now that it came from a place of love.  My main reason for such defense, however, was that I felt no one believed that I had been concerned or asking questions leading up to that point.  I have since that time learned on far too many occasions that a parent really does have to come to the point of seeing things for what they are mostly on their own.  I am grateful that my brother-in-law prodded us to seek an evaluation from early intervention, but I am also grateful that the prodding was left at that and not taken too much further.  I think just as a new parent needs her baby to sleep lots, then crawl, then walk...nature's way of preparing you for the next stage gradually, a parent of a child with special needs often also needs those baby steps to ease them into the hand they are dealt.

Our (less-than-stellar) pediatric neurologist that we began seeing around 18 months also would continually tell us that 'something was going on, but he didn't think it was autism.'  Many specialists would say this to us as M did seem to have a certain engagement to him that didn't seem typical of so many autistic children.  (*Please note that I firmly believe that ALL children on the spectrum have the desire and potential to engage and form relationships.)  And then there is the almost-laughable labels that he gave us; the ones so many of you parents of autistic children also received:  sensory integration dysfunction and global delays.  I would love to know just how many children are given those descriptives and DON'T later end up with an autism spectrum diagnosis?  Again, maybe it's all part of the settling-down-with-it process.  Less scary words to help you ease into the whammy that lies ahead...

And yet, when we did finally get the A-word whammy, it was actually quite less of a big deal for me.  I was alone with M at our yearly appointment.  He was 4 1/2 years old by this point and had been seeing a slew of therapists and specialists for over three years by then.  I calmly waited for the doctor to come in and calmly accepted his speech that went something like this:

Dr:  Well, I suppose it's time we put a name to this.
Me:  Yep.  I figured you would say that this time.
Dr. (totally non-plussed, no emotion) I believe M has high-functioning autism.  (and here's where you'll probably get the same chuckle I did when I left the office) Some people call it PDD-NOS, others call it Aspbergers.
Me:  Ok.  That's what I thought.
Dr.:  We'll see him in six months to a year.
Me:  Ok

Done.  That was it.  I didn't feel like I died that day.  I think I'd died a hundred small deaths already before then.  I didn't feel like someone had hit me with a baseball bat.  I felt totally at ease.  I called the other half on the way home and matter-of-factly told him what the verdict was.  (though I always said PDD-NOS because even I am not so much of an idiot as to think that is the same thing as Aspberger's...seriously!!)

I was somewhat delighted to be able to stop telling people, 'Oh, my son has sensory processing issues and global delays.'  The word 'autism' is a hell of a lot shorter and has much greater meaning to the general public, as vast as the spectrum is, and as little as people really do understand it.

The 'other health impairment' diagnosis that allowed him to be accepted into the public school's special ed. preschool program was quietly changed to autism.  We were two months from moving from the mother ship to California and this change would allow us to receive more services than OHI would have.

Unfortunately that high-functioning diagnosis would not hold and I will never know if it could have had we stayed in Texas.  Our boy, as you probably know, has plummeted and regressed into the world of moderate to severely afflicted autism.  This began when he was nearly five, a sad situation I have not found duplicated yet through all of the families I have met in person or virtually.  

I suppose the purpose of me writing this here and sharing it with you is twofold.  First, I need to document these things for myself, in hopes that one day I can read it again and think, 'My, how far we have come!'  But I also want to document it in case one of you readers is following a similar path.  I am knee-deep in the emotions that come along with autism.  I am often barely able to fully help myself find my way through it all.  But I know that the one thing I can fully offer up is a type of mentorship to those who walk this path after me, just as so many--like Susan Senator or Casdok--do for me.  Because it helps to not feel so damned alone in this all the time.  And let's face it, even though the numbers are an astounding 1 in 91, you can still feel like the last one picked for the team.  Sometimes I, as outgoing and personable as I may seem outwardly, feel almost autistic myself.  And, perhaps, that is just nature's way of also helping me to understand just a little more...

Community

I wrote the following for Hopeful Parents today.  Please be sure to check out their amazing community of writers and families!

Recently I had one of those rare nights out with the girls, two who also have children on the autism spectrum.  As we waited for our table, I had a more private conversation with one of them.  

M is a newer friend.  Our paths crossed before I even moved here, and perhaps that was the first sign that we should be friends.  She has not walked down this autism road quite as long as I have, but through our various encounters I knew that I needed to reach out because I think we are quite similar; outgoing, normally upbeat and strong-willed personalities.  Driven (perhaps sometimes to a fault), lapsed Catholic (bring on the guilt), and lead by our deep emotions that can sometimes empower us and often times overwhelm us.  

I have felt at ease opening up to M.  I am a very open and honest person, so this isn't normally an issue, but there are those things that a person sometimes needs to verbalize not only to the universe but to another being, and I guess that lovely glass of pinot noir, though only a few sips in, was the impetus to speak my heart.  I told her--as I dropped the volume of my voice just slightly--that sometimes I feel like autism is my living hell; like I have done something really awful in a past life and this is my hell on earth to repay it.  

No doubt, that is a strong sentiment, and one I realize has many tangential arguments that I acknowledge most directly.  But at that moment, on that day, I needed to tell someone that dark feeling inside my heart.  It felt good to let it out, and it felt good to hear from M that she, too, has had that feeling at times.  I don't think it's a coincidence that the two of us were raised in Catholic homes where you were encouraged to confess your sins to a priest.  Though we don't practice that religion any longer the need to purge our less-than-perfect thoughts is likely so ingrained in us that it will always be there.

But I recognize that you who are reading this probably also feel that need to purge those thoughts, and perhaps this is why this blogosphere is so crazy important to us.  

So thank you, members of Hopeful Parents, my personal friends, and family readers.  (Well, the two family members who actually know about this blog!)  You are my confessional and without you I know this journey would be a hell of a lot more difficult than it already is.

Mama Deb does a little too much reconciliation at This Is My New Normal.

How Do You Make Things...Uh...More Normal?

Yesterday we all played hooky; the other half from work, M from summer school and ABA, me from, well, driving M to and from summer school!

The boys had been so anxious to see Toy Story 3, so we made plans to go to the first showing of the day.

Going to watch movies in the theater used to be one of our only activities that we could do as a family and know that everything would go smoothly.  However, with the upswing in verbal self-stimulation M has grown into over the past year, even that has turned into a shaky event.

I'd mentioned not too long ago about seeing Shrek 4 at an AMC sensory-friendly showing. (The next one is July 17th at 10 am, 'Despicable Me,' fyi)  It was the most stress-free movie we'd seen in quite awhile since my kid most certainly wasn't the loudest of fidgety-est one in the room!  I will definitely go back to one of those in the future, but the time and date isn't always possible for us to attend, as was the case with Toy Story 3.

We thought a general showing of Toy Story3 would go alright since these are some of M's very favorite Disney characters.  And it did go alright for the first hour, despite having to turn off our own feelings of how someone should appropriately eat their popcorn when in public.  (ahem.)  But after that, you could tell that despite him being interested in what was going on on the screen, his body was winning out in its war to make him squirm and make constant guttural sounds. (Thank you person who brought small infant into the theater...your baby's constant crying helped drown out most of my son's sounds--woohoo!)  Inevitably once this movement and sound cacophony begins, he will progress to doing his signature move--he starts getting this silly smile on his face, leans into you as though he wants to interact or play wrestle, and then escalates it to an uncontrollable frenzy of sound and motion that generally ends with you attempting to get his solid 60 lbs. unstuck from you, his nails from clawing into your wrists, and for him to stop make the sound that honestly has started to make me shut down each and every time I hear it since nine times out of 10 it leads to a very frustrating moment.  


The other half was the one to take the brunt of this display this time, and since he was not in perfect M-handling mode, I could tell that he was not dealing with it well.  They left to watch in the wings a couple of times and came back to have M slip back into the same mode only minutes later.

I finally decided to take over knowing I'd receive more of the same.  I kept hoping that he'd just get his shit together a tiny bit since we were only about 15 minutes from the end of the movie.  Even though these are kids' films, I still don't like missing the ending, dammit! :)

But, alas, we missed the last five minutes of the movie when he just burst into tears.  It was too much for him to be there, and his body couldn't handle it anymore.  As much as I understand and sympathize with this, I still grieve for little B's experiences as well as for the other half and I.

I get tired of looking at all of our outings and thinking well, it was almost great.  Now, I completely realize that B is responsible for plenty of spoiled outings as well.  The child can't go on a walk without whining for you to carry him.  But when a kid has looked forward to seeing a movie for so long...talked about it multiple times a day for weeks...I get sort of pissy when his brother puts his parents in a foul mood that ruins the happy mood we all felt on the way there.

So what do you, parents of children with special needs, do to make these rough outings leave less of an impression on you?  Do you leave your child with a sitter so that your typical child can have more, well, typical outings?

B really, really wanted to go play video games with the other half, after the movie yesterday, so I told him that this weekend he should definitely take him to Chuck E. Cheese or someplace similar and I will stay home with M and take him for a walk.  That way, both boys get to do something they enjoy without all the stress of the other one not being able to handle it.  But is that fair to our family as a unit?  Is that healthy to start doing things in such a divisive manner?  I just don't know what the right answer is and wish that I didn't even have to  ponder it.

One of B's best little buddies whose Mom I count as one of my closest friends here, is having a birthday party this afternoon.  It's a backyard, family bbq, and I desperately want all of us to go.  I want the other half to finally get to know the spouses of my close friends.  I want to drink beers for hours on lawn chairs while our children play happily around us.  But the reality of the situation is that if I do convince the other half to attend with M (he says he's in at this point, but we'll see), is that if M is snatching food from the table or other people's plates, if M has an embarrassing meltdown in front of the people we don't know, or--worst of all--M gets frustrated with one of the little kids and grabs them, I feel certain we will have to leave.

 I would love to know how you all make outings more enjoyable and normal for your family.  Please be sure to leave a comment to let us all know!

Oh, To Know What M Would Ask Me!

I thought this was really special...

Sensory Friendly Films

Have you heard of these?

AMC Theaters have beautifully dedicated a 10 am showing of new family releases to those who may have a bit more trouble sitting still or being quiet during a typical showing.
There are no previews to sit through; you go straight to the good stuff.
You can bring your own snacks for those on specific diets.
The house lights are up a bit and the sound is turned slightly down for those with sensory issues.

But best of all, the theater is full of families like my own and we respectfully don't 'shh!' when someone has the urge to yell out. We don't give them the evil eye when one child has a full blown tantrum in her father's arms. And we tell the Mom whose had to scoot past us four times to not apologize for having to chase down her little guy again.

Going to the movies has always been one of the preferred outings for our family...one of the few that we always felt sure M would tolerate. About six months ago, something changed and M is no longer able to sit quietly in a theater, no matter how much of his beloved popcorn we have on hand for him.

The other half is out of town this weekend and when that happens, I am truly at a loss as to what activities I can handle with both kids by myself. I had heard about these sensory films but never attended one since the nearest theater is about 30 miles away.

I decided to suck it up and make the trek to the theater, hoping the effort would not be wasted. It wasn't! M had a few 'moments,' but even those seemed to be lessened. A sensory-friendly setting and a less worried Mama were the winning combination that allowed us to successfully enjoy the entire 'Shrek Forever' movie without the help of the other half, and without having to leave early. Hurray for Sensory Friendly Films and hurray for AMC Theaters!


*Note to self: When you do have success like we did this morning, try not to push it by taking the kids shopping afterward.

One trip to AMC Theaters = success.
One trip to World Market afterward = colossal failure. Point noted.

Sea Glass

I posted the following over at Hopeful Parents today. Please be sure to check out this great community...and become a fan on facebook too!

I recently took up a new hobby and as odd as it sounds, I find it just about as fulfilling as any other hobby I've test driven through the years. It perfectly fits where I am in life and my need for something calming. The best part about it is that it is fulfilling both with and without my family, and is one of the very few activities we can count on M being okay with us doing together as a family.

We are fortunate to live in a beautiful, coastal town. Less than a mile from our home is the biggest sensory-happy sandbox a little guy like M could ever ask for. So instead of worrying about whether or not we'll be bothering other people at a movie theater or having to cut short a visit to a local museum, we can safely and happily load up a blanket and a bucket and head to the beach for hours.

M is quite happy plopping down as soon as he gets to the sand, leaving me to comb the beach for gems that-before the sea churns them about for years, decades, or if you're lucky, a century-were simply considered littered pieces of glass.

I was fortunate to have 90 minutes of solace to myself last week when I went sea glass hunting all.by.myself. It was heaven!

As I tuned out the rest of the world and focused on the sand, I thought of how much symbolism there is in this new hobby I have chosen. It sounds perfectly cheesy; sort of like those posters you can by at Michael's that say 'Everything I needed to learn I learned in Kindergarten.' But they're there, and they fit with the new normal I am living as a parent of a child with severe special needs.

So without further ado, may I present to you "Everything I need to know about parenting a child with autism I learned from sea glass hunting:"

1. Often the best glass can be found after a tumultuous storm at sea.

2. Sometimes you can't see the best piece of glass even when it's right in front of you.

3. Even though your eyes tell you that you aren't actually looking at a piece of sea glass, sometimes your brain won't believe it until you walk over to it, touch it, see it closely.

4. The biggest pieces of sea glass are found in the most remote beaches where others don't dare to walk.

5. You can rarely find sea glass until the tides are low.

6. When you find that rare piece in red or cobalt blue, it makes you want to keep looking all that much more.

7. Even the seemingly smallest pieces of sea glass can be made into something beautiful.

8. Not everyone understands why you would want to spend so much time searching for something they don't see value in.

9. Those that do get it are wonderfully special friends.

10. Sea glass hunting does not require any words.