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...

Goodbye, Old Friend

‎"You think dogs will not be in heaven? I tell you, they will be there long before any of us."
-Robert Louis Stevenson

The above photo is of our very special cattle dog mix, Sydney, who I spoke of almost exactly two years ago here.  She was in her prime, around three years old, and newly transplanted from the Texas plains to the incredible beauty of northern California.  She'd make that journey with us back and forth across the same four states twice more, and travel to many cities in between. 


This was our girl today, (at the ripe age of sixteen), enjoying one last trip to take in California's beauty, though in a much quieter manner.  Instead of hiking with us across difficult terrain as she did in the photo above, this time my friend was given her own set of wheels: her beloved boys' radio flyer wagon.  

It all began with just she and I back in 1996. I, a senior in college who was feeling more than a little bit lost after losing my previous dog to a tragic accident; and she, a rescue who had been graciously saved by a woman who'd found her chasing cattle on a ranch near her home, and taken good care of her while waiting a month for a spot to open at the local no-kill shelter.  Eight years later we'd find the buckshot that remained inside her...evidence that a stray, cow-chasing dog in rural Oklahoma is not exactly a welcomed guest.


Today, it ended.  Again, just she and I.  We quietly rolled across the dunes and walked a tiny portion of the beach, (her legs would no longer allow anything more), and then two old friends sat quietly until it was time to go to the vet's office, watching the waves crash and retreat.  Crash and retreat...

I whispered in her ear over and over and over again, until I was sure she could no longer hear, 'I'm here.  I'm here.  I love you.  Thank you.'


My heart is a tiny bit broken.  Fifteen years is a long time to share your life with a pet.  We fought like sisters and consoled each other like best friends.  She was the smartest dog I have ever known and I hope that even in my worst pet-owner days that I still did somewhat right by this dog who loyally stood by my family for so long.


You're an angel now, Syd.  We will miss you always.

Hopeful Parent-ku

I'm over at Hopeful Parents today with the following entry.  Be sure to click your way over to their site and sit down a spell!

Alright, let's get real here for a minute.  I have admittedly been a wee bit lax on regular blogging, which in turn means a laxness here at Hopeful Parents.  As I've said in my own blog, it's not that I don't have things to say, it's just that I realized that my state of mind recently is such that all my blog posts end up sounding whiny and bitchy.  I'm not a smoke and mirrors, everything-is-just peachy-when-really-it's-not kind of girl--quite the opposite--but it still doesn't feel right to me to look back on my reflections and to only read negativity.  I very briefly tried to hold myself to a weekly entry called 'thankful Sundays.'  My family does not attend church, so reflecting on what I was thankful for on a day traditionally held for church-going, I thought  was good practice.  Yep...didn't last very long.  The gripes took over way too often and made me feel false in my attempts to try and come up with something cheery.  (yes, this is all probably good information for a therapist or the zen teacher I probably need to start seeing)

So with that, I decided that today I wasn't going to bitch and whine.  No, sir, we're going to have a little fun here today, and I do hope that you'll join me!

Back when I lived on the mother ship, (that's the great state of Texas for those of you who don't know), I was a member of a lovely virtual community of mothers.  One such mother has her own fabulous blog called 'Haiku of the Day,' which I highly recommend you read.  Kari's pretty damned funny, and her haikus are, too, even though life is certainly not always a bowl of cherries for her either.  It's quite therapeutic to come up with your own haiku when things are seeming a bit shitty in your life, so I think today is a perfect time to come up with a few of my own.  They don't always have to be funny, and they don't always have to be sad; they're quick expressions of your feelings or current situation.  I find that leaving them as they are on my first take is best.  I honestly don't ever remember revising a haiku upon second reading as you might with other poetry styles.  Here's my quick take on a few haikus for today.  Share some of yours in the comments section!

Shower, elusive

My hair's still in a clip

Oh, wait, that's the dog!

Diapers at seven

Not quite what I imagined

No pee on the floor!

Little brother big

While bigger brother little

Confuses me some

 Parenting is hard

Nobody warned me of this

Where's my manual?

Winning Numbers

I tell people that B, my youngest who just turned four years old, is my lottery win. As with all things that attach themselves to a mother's sense of guilt, I do feel the need to qualify this statement by saying that this does not in any way lessen my love for M. M is his own beautiful being, but if I said that I did not have hopes that his (and my) life would go differently, I would be lying.

Now that that's out of the way, onto those winning numbers!

I don't talk about him enough here and I realize that I should. For he is my little beam of light, as frustrating as he-like many preschoolers-can certainly be.

I naturally had to 'guide' him on not chucking the sand he was digging into the wind, whereby it would then end up in his brother's and the dog's eyes.

B is smart. He has his father's quickness and my gift for gab--combined traits that both amaze and annoy me. But above all else, he is kind and thoughtful. He can seemingly Eddie Haskell you, but it's genuine--really and truly genuine. He knows just the right moment to come over and rub my back or plant a huge kiss on me and tell me, 'You're the most beautiful Mom ever,' or 'I love your heart.' (my personal favorite)

He didn't ask to be brought into a family where special needs loom over us day in and day out.  I realize that he knows no different, but I do believe it will serve him well in later years.  I'm sure most of us parents thrown into this mayhem believe this of our typical children.  

One thing that has increasingly been difficult for me to hear from my little man is his desire to have 'a three year old sister one day.'  I have heard this statement no less than five times a week for the past several months. I think he believes that a sister might talk and play with him; might not pinch and grab his arms when he tried to interact or did what little brothers are supposed to do and took away his big brother's toy.  (That's a bit more tricky when said toy is an iPad, the only 'toy' in which big brother shows ANY interest, day in and day out.)  Regardless, he tries so hard with his big brother, trying to please him by bringing him his favorite 'chewie' when he's out of sorts, or mimicking our words to try and get him to perform self-help skills or the like, when he says things like 'Use your fork, M!'  He does his very best to include a boy who seems to not want it.  And for that, I am greatly appreciative.

I desperately wish I could give him a more typical playmate, but if I may be honest here, I am petrified of trying to get pregnant again and have definitely closed my mind to that possibility.  I don't believe the other half thinks it would be a bad thing to attempt, but as the one who would carry the baby, I know that my current stress level would be a detriment to creating a healthy being.  And then, of course, there is that genetics thing.  See?  This is why I call B my lottery win.  And no one wins the lottery twice...

But back to my amazing boy.  Because this is my diary and I want to read it in later years and remember the wonder of him from this time--I need to do a better job of reminding myself of all those funny things he says and does.  Maybe I should create a running list on an entry I don't publish but once a year to memorialize those seemingly small phrases and gestures that he performs that tug at my heart or make me need to stifle a laugh in order to be the grown up I'm supposed to be.  For example, and I realize there are some readers who won't find this in the least bit funny, the other day (after having had an amazing birthday weekend complete with a visit from an out of town grandma and two cousins) he was feeling a bit pouty and clearly needed to try and hurt me.  So he looked at me with one eyebrow furrowed as much as he could, and a hand on his hips to say, 'I had a bad fucking birthday.'
Oh, my stars, I could not believe he said that!  I turned around for a split second to get it together and then turned back to him to appropriately reprimand him for saying such a thing.  I suppose this is one of those situations where the phrase 'Do as I say, not as I do' comes in handy?  Hopefully we won't hear anymore f-bombs come out of his beautiful little mouth until he's an adult :)

B has a great love for animals.  Until July of 2009, we had five pets:  three dogs and two cats.  A young woman in college and shortly thereafter does not consider the fact that adopting five animals in a relatively short time period means that all five will become senior citizens around the same time.  Nor does she consider that there may be any extenuating circumstances in her life that may make caring for five aging pets that much more challenging.  Nonetheless, I do hope (and believe) my love for animals has somehow rubbed off on my youngest child.  When we were close to losing the first of our five pets, our beloved Daisy dog, B would sit for what seemed a long time in the world of a then-two-year-old, petting her and loving on her and saying, 'Aww, poor girl,' as she laid quietly beside him, the cancer growing within her.  And though we'd talked very openly about Daisy's death and where we believed she went afterward, I was unable to tell him that I had made the decision last March to have one of our cats (Jade, aged 15 years) put to sleep because, despite not finding any medical reasons why, our least social pet was peeing so badly around our home that the boys could no longer sleep in their bedroom until we replaced the carpet.  He asked many times where Jade had gone--she'd had a habit of sneaking out from time to time and being gone for days on end despite being an indoor cat--and finally about six months after the fact, I *may* have told him in passing that she was in heaven.  Though I don't believe he had much of a relationship with Jade either, as recently as two weeks ago I overheard him telling an elf at a children's Christmas show (of all people!) that he had a cat once, named Jader, and she was in heaven.  Oh, this beautiful child who never forgets a single thing!  He amazes me!
And now, our oldest dog, Sydney, is very, very close to our needing to say goodbye.  At 16, she, too, has cancer that has spread to her bones.  And like with Daisy, I am open and honest with B about her.  Not because I am one of those Moms who gives her young children a little too much information, but because I know that he has that 'thing' within him to make heads or tails of it all when it comes to beloved pets.

So to my boy--the one who screamed for the first 18 months of his life and scared me into thinking that he'd be that way forever--you are my sunshine.  Really and truly.  My life is immeasurably better each and every day because of you.