Thursday, June 28, 2012

Better Than Nothing

Not the actual "Running Grandma".
Saturday morning - 6:30 AM:  My alarm goes off.  I've spent the past 24 hours feeling like I've been hit with a Mack truck.  I've eaten hardly anything the previous day, let alone gone running.  I always run on Fridays.

I wake up and no longer feel like vomiting, so I figure that I better get my ass out there and run.  Any other Saturday, that's what I'd do.  I'd run.

In a daze, I don my running shorts and shirt and lace-up my shoes.  I force a bit of food down on my way out the door.  I decide to go to my usual spot - the park - to run the trails.  I stretch and still feel fine.  I do a 5-minute warm-up walk and still feel fine.  I then work myself up to a comfortable pace and begin to run.

What is a normal Saturday run for me?  I run about 10K - 6.2 miles - and maintain about a 10 to 11-minute mile pace.  I'm not the fastest runner on Earth, but I'm not the absolute slowest, either.  I always finish that 6 miles.

Not today.  I ran the first 10 minutes like I was a newbie.  I was panting, sweating profusely, and began to feel dehydrated.  It's at this point that I should mention that the 24-hour bug I was coming off of was, indeed, a stomach bug, so I was dehydrated.  I had also neglected to purchase a hydration belt (I promptly did so later that day), which is designed to help me bring fluids on my run.

It was about a mile into the run that I slowed to a snail's pace, only to veer off to the side of the course and dry heave.  So, I might have still been recovering.  I might have been a little too optimistic about my chances of running a normal run that morning.

After I straighten myself up, I look at my phone, which tracks my pace and distance.  I've got 2 miles to go before I even get back to my car.  So, I begin to walk.  I resign myself to the fact that I will not be running 6.2 miles this morning - hell, I won't be running at all - but I will absolutely finish that 3.1 miles, even if I have to walk the whole way.

It was a hard walk, too.  I was sweating more walking that distance than I normally do when I run.  This was my body's way of screaming at me "What are you doing?!?  You idiot!"  Yes, body, I hear your message loud and clear.  Now, I need you to do me one favor - carry me home.

Finally, feeling more than a little queasy and disappointed in myself, I wind my way to the trail entrance.  I look at my phone again - it reads 3.1 miles.  I walked it in about 50 minutes.  Damn.  I hang my head low and try to catch my breath.

I hear a foot slap up on the bench next to me.  It's this little old lady who I have dubbed, in my own mind, to be "Running Grandma".  She's probably in her late 70s and and kick my ass in royal fashion in a run.  Since most of us tend to run at the same time each day, you usually see the same several people on the trails.  Running Grandma is one of them.  She speaks to everyone and will stroll up along side of you and carry on a conversation about your run, your family, or just how lovely the weather is.  For her, running is more than just a way to stay young - it's clearly a social activity.

Running Grandma's foot hits the bench and she starts to stretch.  She looks at my face - beet red from nausea - and says, "Had a rough run, honey?"

I shake my head and give a little laugh.  "Rough run would be an understatement."

She smiles, puts her hand on my shoulder, and says words that I have heard in varying phrases before, but that from her wisdom I will never forget.

"That's okay.  You're doing better than everyone who is still in bed right now."  She smiles again and wishes me a good day as she starts to run.

As I lean back on the bench, I think to myself about her words - and I smile.  She's right.  I had, for lack of a better word - a crappy run; however, I managed to get out and get moving that morning.  There was no failure in my run that day.  There was victory in the fact that I ran - or walked - at all.

It's a good lesson that doesn't just apply to running.  There really is no failure in not meeting expectations.  The only failure that exists is by not attempting challenges in the first place.  The attempt, regardless of the result, is the victory.

Wednesday, June 27, 2012

Battle Royale

Ravioli - it's considered an object of torture in
Jack's world.
It's a battle in the RM Corral.  I stand, hands at the ready, hovering over a forkful of cheese tortellini with marinara sauce.  Opposite me stands my 3-year old son, armed with nothing but an uncanny ability to scream like a banshee and a big can of whoop-ass.

One of us will break.  Will it be him, or me?

---

Jack's been doing better with feeding at therapy - much better.  He has eaten pasta, chicken breast, Italian hot dogs, and various other items without a gag or vomit.  Okay, there's been a gag here and there, but no vomit.

I've tried transferring this to our meals at home.  Dinner comes and I lay out the plate of chicken.  Or pasta.  Or whatever it was that he ate at therapy that day.  I'm met with the same reaction:

"ALL DONE!"

Any attempts to put the offending food in his mouth, or even in his general direction, are met with punches, flailing, and screaming.  I would literally have to pin him down, hold his arms at his side, and force a bite into his mouth - not exactly what I'd like to do.  So, eventually, I give in and make him something else, because I just want him to eat SOMETHING.

I do this because my express purpose is to not turn feeding into a battle.  It's been a battle in the past.  There was a time in which every attempt to feed Jack was met with flailing and refusal to eat.  I've watched my little boy struggle with eating his entire life.  I watched him go from the 95th percentile in weight at birth to the 15th percentile in weight at age 3.  I've watched him vomit and gag at anything.  I've watched him slowly, painfully gain weight and then, right after his 3rd birthday, drop a pound, which he still hasn't gained back.

I almost suffer from a bit of PTSD with regards to Jack's feeding.  When his anxiety rises with food, so does mine.  I remember the dark days of fighting at every meal.  I remember him eating barely anything.  Compared to where we were, we have come light years in the past 15 months.

Now, he willingly eats the following:
  • Cereal Bars
  • Yogurt
  • Dry Cheerios
  • French Toast
  • Peanut Butter/Jelly on English Muffins or Toast
  • Pretzels
That list, though only about 6-7 foods, seems enormous to me.  There was a time when yogurt and purees comprised 90% of his diet.  He was eating 2 yogurt meals a day because that's all he would willingly eat.  We've come a long way since then.

So, when I see Jack's anxiety rise, when I see him take to the defensive, I can't help but begin to panic a bit.  After all, this isn't something that I just experienced once a week with him.  This was a daily battle for every meal to keep every bit down him that I could.  

I also simply refuse to force-feed him.  I will not hold him down and force food into his mouth.  That is something that I feel strongly about on principal.  If food is going into Jack's mouth, it's because he puts it there or he willingly accepts it from a caregiver.  We can beg, we can plead, we can use a picture schedule to show him what's happening, and we can try to even "trick" him into it, but I will not allow anyone to hold him down and force food into his mouth.

That being said, I'm incredibly frustrated that Jack's eating better at therapy and we can't seem to replicate that at home.  I mean, what kind of a mother am I that I've never seemed to be able to successfully feed my child?  As a mom, all I want is for my kid to have the nourishment he needs to grow, but I haven't been able to manage that.  It's something that has caused me a lot of pain and shame that I can't do the most fundamental thing - feed my child.

So, Jack's therapist suggested that I no longer offer him another food after he refuses the new food.  After all, he can eat it if he does for her, which I agree.  I'm to offer Jack only the new food (usually what he had for lunch at therapy that day) and if he chooses to not eat, then he doesn't eat.

Here's the issue I have - Jack will starve himself if allowed to do so.  I've seen it with my own eyes.  He's gone on a 3-day fluid strike before - in July - because of some PediaSure.  I was on the verge of panic when I was finally able to get Jack to drink some milk - his preferred liquid - sans PediaSure, though.  

He absolutely is not food motivated, so it's not like I can try to bribe him with a cookie or some other dessert.  In fact, when it comes to food, there is zero motivation at all.  I've tried giving him "first/then" prompts of "First (new food), Then iPad", but even the allure of an iDevice is not enough to get Jack to willingly take a bite of a new food.

So I sit down with Jack, tortellini in hand, preparing for battle and hoping for the best.  Battle, my friends, was just the beginning.  Jack screamed.  He slapped my hands away.  He jerked his head to avoid the fork.  There was no getting him to hold the fork or do hand-over-hand.  This was simply an exercise in putting the tortellini in his mouth.

That was, if I could get it even in the vicinity of his mouth without the tortellini being tossed into the air by a flailing hand.

I presented it in the same manner that his OT did earlier, but nothing.  The tears streamed down his face.  "ALL DONE!" was the refrain.  I sat there, pleading, offering, and cajoling for a full 30 minutes. He refused it all.

Eventually, we gave up for this meal, but I didn't offer him any preferred foods afterwards.  He didn't ask, but I didn't expect him to either.  He typically doesn't ever request food unless prompted.  Instead, Jack continued to whimper, letting out soft sobs, and I sat with my head buried in my hands, holding back my own tears.  I felt that same fear that I did for so long with feeding my boy.

We've been in such a bad place before with feeding.  We've been at a place in which he is so uncomfortable with feeding that it is nowhere that we want to return to again.  We're several days in with little success.  I wish I had the answers.  I wish it was as easy as waiting for him to get hungry and relent, but as any autism mama will tell you, our kids would rather starve than eat what they don't want to eat when they don't want to eat it.

I swear, the communication is tough.  The motor issues are tiresome and cause my back to scream in pain.  The sensory issues bring me to my knees, but nothing shakes me to my core more than the feeding.  Feeding is about survival, and it has been so painful to struggle with it.  The worry over whether your child is getting enough nutritionally can just consume you.

Feeding is the one thing that makes me feel like an inept mother.  After all, I have never been able to successfully feed my child - and you can say that it's not my fault, because my husband does, but I have never been able to do one of the most basic things that a mother does, and that is nourish her child.  You can say the cause is sensory, oral-motor, or behavioral, but not being able to feed your child is terribly hard on a mom.  I ask myself over and over again - what am I doing wrong?

I don't know, but the one thing I cannot compel my child to do is eat.  I can't chew his food for him.  I can't make him open his mouth.  I refuse to force-feed him, as I do not want him to equate food with fear.  Eating should be a pleasant experience - one of the finer things in life - rather than a power struggle that causes anxiety.

So here we sit at an impasse.  It is me, wielding a forkful of pasta on one side and Jack wielding a the preschooler fists of fury on the other.  I don't know who will win (there may be no winners here), but I hope that the resolution is a quick, peaceful one.

Feel free to share your feeding stories.  How have you overcome feeding issues with your special needs child?

Tuesday, June 26, 2012

Playing the Victim

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides.  We were no longer talking as a whole anymore.  There was a group of moms who didn't want anything to do with what we were talking about.  They slumped in a corner and had a "woe is me" attitude.  I decided to eavesdrop on both conversations.


The "woe is me" moms were talking about how they didn't get to shop or go to the beach with their friends anymore, and the "I'll try anything if it will help my kid recover" moms were trading success stories about the latest treatments...


My other theory is that they enjoyed the victim role.  I know that might sound mean, but I'm sure you've met people who are constantly having shit go wrong in their life.  They complain and play the "don't you feel sorry for me" game.

~ Jenny McCarthy, Louder than Words


---


This is something I touch about every year on - and that's the Victim Moms vs. the Warrior Moms.  And you're both out there, so hopefully you can recognize yourself as a Victim Mom after I explain this.  Um, when our kid gets diagnosed, obviously I think we all fall into that same thinking of "Oh my God.  I'm going to die.  Not my kid.  What am I going to do?"  And there's this part that takes place - a moment where you have to decide, are you going to take charge?  Are you going to give it everything you possibly can to save your kid?  And then something surprising happens with a lot of other moms.  They - this is all subconsciously - but they fall into this victim role and they like it.  It's almost as if they didn't get attention in their lives and this - see, I see a lot of moms shaking their heads - see, I'm sure you've met them too, you guys - um, they didn't get attention and now this incredible door opens where all of these people come over and say, "Suzy, oh Suzy, I'm so sorry, is there anything I can do for you?"  There's all this attention.  And they're loving it.  They're loving having people feel sorry for them.


~ Jenny McCarthy, at AutismOne, May 26, 2012

---

The great divide.  The factions that exist between parents who support various treatment approaches threaten to drive rifts within our community and separate us in a battle in which every voice is needed.

I don't like to call one side "Warrior Moms", because I think that each and every autism mom is, in her heart, a warrior for her child.  To imply that the moms who employ one treatment approach are the "warriors" while the rest of us are not is, to me, simply untrue.

I also have no problem with any treatment approach any parent chooses to pursue, so long as it is not harmful to the child.  Most biomedical approaches, to me, do not seem to be harmful.  So, I tend to not give my opinions either way.  To each their own.  We simply choose not to go that route at this time, but I understand that some families see success with supplements and diets.

What I do have an issue with is the assumption that moms who go one way are playing the victim.

Jenny M. is right - we all know people in our lives who continuously fall on hard times.  I know several myself (all outside of the special needs community).  These are the people who constantly fall in and out of relationships, are always struggling financially, are always being burned by one person or another, and are typically broadcasting their woes for all to see via social media or other means.  It's these people who are searching for sympathy.  When they post an ambiguous Facebook status that says something to the effect of "Heart Broken" or "My life is over" every week, they are clearly asking for people to come forward and ask, "What is wrong?"

So yes, there are people in this world who love to play the victim.  However, I have met very few of these people within the special needs community.

I don't buy JM's assumption of the "Victim Mom" for those parents who A) complain about some of the less-than-glamorous aspects of autism parenting, and B) who don't try everything she has to help their kids.

We'll start with the first assumption.  I think that it's only natural to feel down about your child's struggles.  It makes us human.  I know that my entire day, or week, or month can be affected by Jack's successes and failures.  It is what it is.  In the beginning, there were more darker days.  Now, the darker days - the days in which I allow myself to collapse into the darkness - are fewer and farther between.

Occasionally, though, I have a bad day.  Jack has a bad day and it just gets to me.  It's okay for me to complain about that in the same way that anyone complains about anything.  I'm human.  I can specifically say "Jack had a 40 minute meltdown at the park and it sucked" rather than beg for attention with the ambiguous "Life sucks" response.  That, in my opinion, is not attention-seeking; it's stating a fact.  If we didn't all acknowledge that some not-so-great things happen in our lives, we would simply be hiding the truth.

On the other hand, I also believe in the value of raising awareness.  It's a fine line we walk between highlighting the beauty in our children and showing the struggles.  We don't want everything to be about the struggle, because we don't want people to look upon our lives with pity and despair (at least I don't), nor do we want them to look at their own lives this way if they find themselves facing an autism diagnosis for their child.  However, if we never highlighted the struggles, then the community at large might see autistic persons as not requiring the services, support, and legislation that they so desperately need.  A lawmaker might look at my child and say, "His mother says life's great; why should I spend my political capital lobbying for an autism mandate when there is no struggle for this family?"  We need to highlight the struggles at times because we need the community and lawmakers to understand that autism is no picnic and that we need to address this rising epidemic.

I also don't like the assumption that moms who don't try everything are playing the victim.  There are constraints on families - both personal and financial - that keep families from trying various treatment approaches.  Many doctors who practice a biomedical approach - along with the supplements, tests, and treatments themselves - are not necessarily covered by insurance.  This results in a significant expense for families.  People who can afford this, or who choose to afford it regardless, can certainly go that route; however, there are some of us who are not actresses and best-selling authors (JM is both) and don't have the income to spend on such treatments.

Others don't have the money and choose not to bankrupt their families in the process of pursuing treatment.  Autism is something that Jack will have his entire life and we will be waging some battle - in one way or another - against it every single day.  We made the decision to give everything we could to the fight, but we simply can't jeopardize our financial stability, or our own health, battling a condition that Jack will have forever.

I don't think that is playing the victim; I think it is being realistic.

Also - and this is not meant to be a doom and gloom statement - I know of no child, JM's included, who has fully "recovered" from autism.  None.  Even JM's son goes through therapy and attends a special school.  I know of children, many in fact, who progress to the point at which someone might say "He's a little quirky" but they might not guess autism.  Of course, us autism mamas tend to have a much more accurate ASD radar than the rest of the population, so many of us can still spot these kiddos from a mile away.  Dr. Psych, who is about 70-80 years old, even says that out of the the hundreds of children on the spectrum she's seen over her career, she only knows of a handful who never speak a single word.  Each of these children is still on the spectrum.  They may live independently one day and hold down a job, but they're still on the spectrum.

I think it's dangerous to accuse one group of parents of not doing enough for their children - for playing the victim.  It gives the sense that some parents choose to not fight for their children, when there may be a host of reasons for why a parent chooses one treatment approach or another.  It is also dangerous to accuse parents for playing the victim when they (rightfully so) voice their opinions or gripes on a crappy day.  It is natural for parents to look back every now and again and feel a pang of regret over the life that they thought they'd have with their child.  It's not being a victim; it's being a parent with dreams and aspirations for your child.

I've said it before and I'll say it again - my hope is that everyone can be respectful of the decisions of other parents, just as long as those decisions aren't overtly harmful to their children.  Autism requires the concerted effort of all of us to fight for our children collectively.

There is simply no room for negative rhetoric amongst ourselves.  I hope you all agree.

Monday, June 25, 2012

All the Difference

We had a rough start to Jack's school experience.  I think, in reality, that this was not the result of uncaring teachers, but of teachers who were overwhelmed by a class with a myriad of challenges, ages, and abilities that was at maximum capacity.

That speaks, in part, to funding, but also to the nature of special education, particularly in the preschool years.  No one wants to segregate preschool students into classes based on functional levels and diagnoses, at least that is the case in our area, but Jack was drowning in a classroom with kids who were higher-functioning, more verbal, and very high energy.  Not that Jack isn't high energy, but many of the kids in his class were acting out due to boredom.  They were functioning at a higher level than Jack and they were having behavioral issues because the work was beneath them.  They should have been in a class that challenged them and focused on their needs, just as Jack needs a similar environment to cater to his.

ESY was a scary prospect for me.  I was sending my baby off to an environment in which I did not know the teachers, para-pros, or the therapists.  If he was struggling in an environment in which I had met extensively with the staff, what could I expect during this 3-week interlude in our summer?

Well, as it turns out, we were blessed with a fantastic teacher and para-pro for Jack this summer.  What a difference it has made.

Jack really didn't make any gains, but he didn't lose skills, either.  Now, we have a full 6 weeks until school begins again, so I'm sure we'll see a slight backslide, but Jack's intensive therapy regimen helps see to it that the skills stay fresh in his mind.

The true difference was in how the teacher and para-pro listened to me.

The first day, as with each "first day" of school, I sent an "All About Jack" document to school.  I've said it before and I'll say it again - teachers see your child for a few hours a day.  Therapists see your child for a few hours a week.  Doctors see your child for a few hours a year.  You see your child more than any of the above, and you are the expert on what your child's needs are and what works best.  It took a day, but the teacher not only read it, she responded to me and stated that she was implementing my sensory recommendations and that she could see that they helped him stay regulated.  It was nice to have that validation from Jack's teacher.

Then, the first Friday of ESY, I get a call after-school from Jack's teacher.  She has forgotten to put Jack's sensory brush back in his backpack and she wants to know if I have a spare at home, because she can meet me somewhere to get the brush back to us.  She knew how brushing helps Jack and wanted to make sure that we were prepared to get through the weekend.  Luckily, I stockpile sensory brushes (just in case we face an impending blizzard/earthquake/zombie apocalypse), so there was no need to go to any trouble; however, the fact that she called out of concern for Jack having all of his sensory tools for the weekend was above and beyond - truly.

But...that's not all...

About a week and a half into ESY, I asked Jack's para-pro if he had been getting OT.  He has an hour of OT  and an hour of speech each week written into his IEP for the ESY session, and I had yet to see the "OT" box checked on his day sheet.  His para-pro promised to have the lead check into it.

The next day, the lead came out to speak to me at pick-up and told me that the OT coordinator did not have Jack on her list, so she (the teacher) pulled Jack's IEP to confirm that he was to get OT.  She then told the OT coordinator that they would have to make up the service time that they had missed.  All of this without me having to intervene past asking about OT.

So, the first day Jack got school OT in ESY, they tried to put him in group OT.  Well, he did not respond well to that and was very difficult to engage.  So, Jack's teacher and para-pro insisted that the OT do pull-out 1:1 sessions with him from that day forward.

They advocated for my boy in the way I would have if I had been there, and for that I am incredibly grateful.

For a brief 3 weeks (plus one day), these two women cared for my boy and treated him like their own.  They don't work with him year-round, but the care and compassion they showed for him in their short time together has simply overwhelmed me.  This is what a good teacher looks like, my friends.  It is someone who goes above and beyond and someone who advocates just as I would for my boy.  It is someone who is the "mama" to Jack when I can't be there.  It is someone who speaks only kind words and acts as though they truly enjoy the presence of my boy.

Good teachers make all the difference for our kids.  They can be the difference between a stimmy, dysregulated child and one who is able to attend and learn.  They understand that each child is unique and requires a unique approach to education.  They also know that each child is incredibly special.

So, thank you to Jack's ESY teacher and para-pro.  You ladies helped make something that had the potential to rock my child's world - a brief interlude in a new school - so much easier on my boy.  I hope you know that I will be forever grateful for the positive impact you had on the life of my child.

Friday, June 22, 2012

Beyond the Normal Wear and Tear

One day I too will go medieval on my own personal
slice of insanity-inducing technology - the Diaper Genie.
Fun aspect of special needs parenting #1267 - You will get extended use out of your infant gear.  You may even wear some of it out to the point of needing to replace it.

While many people buy baby items thinking that they'll be used for a year or two tops per child, we special needs parents know differently.  We know that we'll get extended wear on our gear, so load up the extended warranties and buy the Cadillac of cribs, because you'll be using that beast for a while.

What?  You say the recommended use for that item is with children 9-12 months of age?!?  Bitch, please - I laugh in the face of age recommendations.

When we bought the following items almost 4 years ago (yes, Jack's going on 3.5!), we had no idea that we would get so much use out of them for a single child:

  • Diapers - Don't even get me started...
  • Crib - It takes a twice-daily beating and has been chewed on and off over the years.  Even with the teething rail, Jack has managed to leave teeth marks on many surfaces.  He kicks the slats so hard that I expect one to just break eventually.
  • Changing Table - Jack's scrawny little legs dangle off of at this point, but he refuses to lay on the floor for a diaper change, so what can I do?  Once we finally move him to a big boy bed, we'll just use that.
  • Wipe Warmer - I half expect it to burst into flames one day, but Jack screams when we use cold wipes (he screams with the warm ones, too).
  • Diaper Genie - I can't wait to throw this beast away one day.  I have a whole demolition scenario, not unlike what you see in Office Space with the printer/copier, planned for this royal pain in my ass.  The door broke more than two years ago, but I can't bring myself to replace it.  I just keep repairing it and feeding it overpriced refills.  It will meet it's maker - and the business end of my softball bat - one day.
  • Baby Gates (and other baby-proofing devices) - Most people I know with kids Jack's age - at least whose youngest is Jack's age - have long since removed baby gates from their home.  Jack still can't climb stairs well (can't go down our stairs at all) and while he doesn't try to go upstairs/downstairs independently, there is a fall hazard for Jack with staircases, so the baby gates stay.  So do the outlet covers, as he'll try to stick a finger in there.  No sense of danger with this one...
And finally, the most recent bane of my existence:
  • The (Insert Expletive Here!) Baby Monitor
The damned baby monitor.  Yet another baby item that has been used long past the normal period of use, the baby monitor was a necessary evil - and will remain so for years to come.  You see, Jack still doesn't call out for us.  So, none of the "Mommy!  Mommy!  Mommy!" that other parents complain so much about, nor will he start screaming to get out of his crib.  He's perfectly content to stay in there - just him and his Sleep Sack - for hours.  

Instead, we know that Jack is awake by listening for him to babble through the baby monitor.  The tell-tale jargon of Jack's speech lets us know that he's awake.  He's still in the crib, so we don't worry so much about his safety or him getting into things in his room at night (though that will certainly be a concern once we've made that move), but the monitor will be useful for that reason eventually, too.  The reality is that we'll need to keep a listening ear out for Jack for the foreseeable future.

Earlier this week, Jack was screaming bloody murder at nap time.  He was more than willing to be put in his crib, so it wasn't an issue of not wanting to go down for a nap, but the screaming (for what, I have no idea) lasted nearly 30 minutes.  

Before it sounds like I'm a neglectful mother, I'll just go ahead and say that when Jack goes into meltdown mode, there is sometimes nothing I can do but let him scream.  I tried rocking him.  I tried shushing him.  I even tried bouncing him like I did when he was a baby.  Nothing.  He just kept arching his back.  So, with no other options, I sometimes let him scream until the meltdown eventually fizzles itself out.  Sometimes it's 15 minutes, sometimes 30, sometimes upwards of an hour or more.  If it's nap time and he's still in the midst of a meltdown, I put him in his Sleep Sack in his crib.  The crib seems to calm him and he has yet to scream more than about 30-40 minutes while in there.  I think that turning off the lights, leaving the room, and leaving him to himself just lowers all of the stimuli enough to help him begin to recover, and it takes a while, but eventually his energy drains and he dozes off.

So, I'm not a bad mother...I swear!  I sit with a baby monitor close by so that I can monitor the storm of screams from his room and intervene if need be - which I rarely do unless I think he's doing something that needs intervention (like banging his head on his crib/the wall).

Back to the story - we're about 20 minutes into Jack's meltdown when the monitor just dies.  Just like that.  Now, we've had issues with the receivers for this monitor system.  They've never held a charge well.  Both receivers are awkward and while they have a handy clip for you to clip it onto your belt/waist of your pants, the clip is only about an inch long and the antenna is a heavy monster of a beast, so both receivers have taken tumbles over time.  The receiver upstairs no longer holds a charge independently, so we have to keep it plugged in at all times.  The one downstairs holds a charge, but randomly drops reception.  It seems to occur when Jack is in the midst of a banshee-like screaming fit, so I wonder if the speaker can't really take the prolonged abuse.

Imagine what you'd be like if you listened to someone screaming at you all the time!

After about 3.5 years of non-stop use, the receiver took it's last breath and died.  It started emitting the ear-piercingly loud "No Reception" alarm that it does when it's having trouble (which Jack absolutely cannot stand), so I had no choice but to turn the damn thing off.  I grabbed my bottle of water and my book and parked myself on the floor outside of Jack's bedroom for the next 20 minutes.  Within about 15 minutes, Jack's screaming had disappeared and was replaced by peace and silence.  I waited a few minutes more to see if he was truly asleep before heading back downstairs.

Our house is big - complete with a full, finished basement - so a monitor is necessary.  We simply won't hear him - even his screams - everywhere in the house without one.  When he's not screaming, and 99% of the time he's not while in his crib, it's even harder to hear him.  He has such a little mousey voice and he rarely produces actual words in his crib - it's mostly jargon.  Sometimes he scripts, but his articulation declines when he's scripting, so it's even harder to hear him without the amplifying power of the monitor.

So, I'm on the market for a new baby monitor.  And I'm not pregnant.  It's for my 3-year old.  Hey, we do what we gotta do.

Moms - what infant-care items continue to get regular use for your older special needs children?  What do you do to keep the existing ones working?  Or, how do you improvise with other items to serve the same function at the infant items?

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Thursday, June 21, 2012

The Crib Conundrum

If you had a child with sleeping issues, but who cannot currently get out of his crib under his own power, would you leave him in the crib or move him to a big boy bed?

This is the debate that we are currently facing.  Jack's approaching 3.5, so it seems as though we really should move him out of the crib, since most kids have been out of their cribs for a while by this point.  However, we're still faced with the fact that Jack may not be ready to move out of the crib and he is simply safer in the crib at night.

Jack has never once slept anywhere other than a crib.  I've tried, believe me, to get him to lay down in our bed on occasion, particularly when he's sick, but he's simply not interested.  He doesn't seem to understand that beds are for sleeping.

In a way, moving to a bed might make more things possible - like Jack staying overnight with his grandparents - but it might create a whole new slew of problems.

He's not able to climb out of the crib yet, so we're not really in a rush to get him out.  He's also not attempting to climb out of the crib, which I suspect is a motor planning thing.  He may just not think about climbing out.  His brain may not even be thinking that this is something he can attempt.

Honestly, he's happy in the crib.  He really seems to feel comfortable in there.  It can take him upwards of 2 hours to fall asleep - particularly on the nights that he doesn't drink all of his melatonin or, as is happening more frequently, those in which his melatonin doesn't seem to be working.

We have a child-proof lock on his bedroom door.  We also still use his baby monitor, since he doesn't call out to us when he's awake, so I have to listen out for when he begins to babble each morning.  I could potentially strip his bedroom down of all knick-knacks so that there is nothing that he could get into while in his room at night, but would he stay in bed?  I don't know.  Would the change cause him anxiety?  Probably.

So, I'm going to open this up to the public.  When did you move your special needs child into a bed?  Should I really care about moving him from the crib if he's happy?  Should we just leave him where he is, or go ahead and make that leap to a big boy bed, ready or not?

Tuesday, June 19, 2012

Mad Skills

Oh, we want our kids to progress.  Really, we do!  However, that gain in skills doesn't always correspond with the cognitive ability to use those skills in an appropriate manner.

Jack, for instance, has been working on taking his shoes off and putting them on in OT for a year.  Just now, he's getting pretty proficient with taking his shoes off at home.  Luckily, he's never been much for disrobing, even with socks and shoes.  It's like once an article of clothing is on, he doesn't really even think to take it off.  It works in our favor, actually.  I've heard many a special needs parent complain about their kids "exploring" the contents of their diapers, but Jack doesn't seem to understand that it's within his capability to get into his diaper.

We were in the car yesterday afternoon following his back-to-back speech and OT sessions.  Jack has had, for lack of a better word, rock star quality speech and OT sessions for the past couple of weeks.  After a year plus of hearing Jack scream or cry at least once a session, and almost always with the transition back to the therapy gym from the waiting room, it has been so refreshing to not hear the torment.  He's happier, he's doing good work in his sessions, and he's making some awesome progress.  I feel like we've hit a good combination of everything - sensory diet, school, and frequency of therapy sessions - and it's nice to have a little period of relative peace.

Not to say that transfers home all the time, but he is staying better regulated at home, thanks to a renewed focus on sensory activities.

So, where do the shoes come in?  I'm getting there...

I had just minutes before been talking to Jack's OT about how awesome he was doing.  I also said that I was likely going to bring a meltdown on by saying how good the past couple of weeks had been, because I always feel like I'm waiting for the other shoe to drop in the good times.  For now, though, I was on cloud nine.

That is until we were about 5 minutes into our trip home.  That was when the screaming began.  I turn around to see what has happened and find that Jack has taken off his shoes.  The shoes are off and he's screaming, "MORE SHOES!!!" at the top of his lungs.

Well, buddy, if you didn't want the shoes off, why did you take them off?!?  

I know why he took them off - because he could and he now knows how.  However, just because he has the skills to take his shoes off doesn't mean that he has the cognitive ability to understand when he can and cannot take his shoes off, or that taking his shoes off might create an undesirable situation for him.  He's clearly not seeing that the consequence of removing his shoes is that they will no longer be on his feet.

Unfortunately, the thing that Jack didn't seem to understand was that it is impossible for me to continue to safely operate our car and put his shoes back on simultaneously.  So, I did what any good mama would do - I floored it in an attempt to get home faster and alleviate the screaming.

Oh, was there screaming.  We're talking banshee-quality, psychotic screaming.  He was flailing and thrashing and beating the shoes on the window.  Tears were streaming down his baby-soft cheeks.

We got home in record time (thank you, police, for being nowhere in sight as I was speeding).  I jumped out of the car and rushed to Jack's aid, in which I was met with a flailing shoe to the face.

I decided to cut my losses - and ignore my throbbing face - and put Jack down for his nap.  The screaming continued.  It was a full-contact diaper change, with Jack arching his back and locking his legs and me taking several blows and slaps.  Finally, after about 15 minutes of struggling to get him in his diaper and Sleep Sack, I was able to get him into his crib.

All of this fuss because Jack took his own shoes off.

Not that I don't want Jack to gain new skills - I do - but I think that all special needs parents will admit that sometimes a lack of skills is a good thing.  For example, Jack can't climb out of his crib due to his motor planning issues and low tone.  That's an awesome thing.  However, I would give my right eye for Jack to be able to eat completely independently.

All we can do is try to teach our kids the appropriate time to exercise their new skills and teach them the consequences of using those skills.  So, if you don't want your shoes off, don't take them off!

What new skills have your kids acquired that have led to unintended consequences?

Monday, June 18, 2012

The Problem with "High" or "Low" Functioning

We can never judge the lives of others, because each person knows only their own pain and renunciation.  It's one thing to feel that you are on the right path, but it's another to think that yours is the only path.  ~ Paulo Coelho

---

You get handed an autism diagnosis - whether autistic disorder, PDD-NOS, or Asperger's, which are the only official DSM-IV diagnoses that can technically be handed down - and every parent's next question is this..."Where does my kid fall on the spectrum in terms of functioning?"

I honestly hate the debate over high and low functioning.  Seriously.  I hate it.  I feel like people search for an answer, as though it will be a crystal ball into what the future might hold for their child, but the reality is that none of us can truly know.

Consider this - I've spoken to parents who have kids who were diagnosed as little children as being in the severe range, but now would be considered very high-functioning and difficult to distinguish from peers.  On the other hand, I've known parents who have kids who were diagnosed as high-functioning or mild, but who in later years have dropped in terms of their functioning level.  Thus, the crystal ball of functioning is a bit cloudier than we might imagine.

Really, I think it shouldn't matter.  I find that functioning levels, not unlike various other aspects of autism parenting - like treatment approaches - tend to separate us into our various factions.  Parents with severely affected kids feel that the higher functioning kids aren't representative of them and the issues that their families face.  The parents with higher functioning kids feel that their struggle isn't taken as seriously.

Dr. DP places Jack right smack in the moderate range in terms of functioning.  Where does that leave him?

It doesn't matter.

Why, you ask?  Because, it can change.  Look at Carly from Carly's Voice.  She was considered severe, but in her early teen years began to show her family and therapists just what was inside her mind.  So, even in the teenage years, a good mind can reveal itself.

Also, all families with a kid on the spectrum face several of the same issues.  We all deal with a lack of understanding for our children and their needs, regardless of what those needs may be.  We all struggle to find funding and the best treatments for our children.  We all fight with insurers, school systems, and doctors to get our kids what they need to grow and develop.  These issues affect us all - regardless of where our kids function.  Our kids all need better educational opportunites, better treatments, more awareness by lawmakers, and more focus placed on research - regardless of where our kids function.

Somewhere out there, each of our kids is lower functioning than another, but they're also higher functioning than someone else.  No one sits at the very end of the spectrum.  There are absolutely times when I hear parents of higher functioning autistic kids Jack's age talking about what their kids can and can't do, and I feel somewhat jealous of their kids' superior verbal abilities and the way that they can self-feed without assistance.  I also have to remember that the issues that they are trying to tackle are just as important and as much a part of their struggles each day.  While a parent with a higher functioning kid may be focused more on their child's inability to empathize and make friends, and I'm more focused on spontaneous verbalizations and self-help skills, we each have issues that are very real and pressing on our thoughts.  The fact that mine involve more basic skills doesn't diminish the worry or struggle of the former.

We should all be supportive of the occasional need of a fellow autism mama to just bitch about it.  It's okay!  We're allowed!  Even if the issue she's bitching about isn't as "severe" as what I may be facing, it doesn't mean that she doesn't have every right to bitch away, and vice-versa.  We shouldn't take it personally either way.  Part of being supportive of our fellow mamas is being a listening ear and allowing someone else to let the frustration and worry out.

I think that's the thing that many of us forget.  This isn't a competition.  It doesn't matter where our kids lie on the spectrum.  We all have issues we face.  Our kids all have challenges that require intervention. If they didn't, they wouldn't be on the spectrum.

So, instead of saying, "Your kid is high-functioning, so at least you have it easier!", think in terms of "My kid in on the spectrum, too!  We face different challenges, but many are also the same."

I think that's what it all boils down to.  Unfortunately, we'll always deal with someone trying to place our kids on some kind of continuum of functioning, but we can choose as adults to unite for the common needs of our kids.

In the end, that's what I really hope we do.  I always hope that we can all unite for our kids.  That we can put the various things that separate us aside to work towards a common goal.  Our kids will all be as different as night and day and as unique as snowflakes, but each needs us - all of us - to speak for them and to make life full of opportunities and joy.

Friday, June 15, 2012

The Pledge

On the heels of yesterday's post, I felt that this was not only important, but necessary.  I feel that we special needs moms need to make a pledge to each other and ourselves to find some measure of happiness  in our lives.

---

Here it is, an autism mom's pledge to herself:

I will take each day for what it is, because I know that the sun will rise again tomorrow.

I will accept help when and where I can, whether it be from family, friends, or other moms that have been there.

I will allow myself the tears of a hard day, a hard week, a hard month, or a hard year.  I will allow those tears to fall with the knowledge that it's always best to just get the pain out.

I will then move forward the next day and slowly shed the cloak of heaviness that weighed me down the previous day.  I will keep shedding it piece by piece until I no longer feel it's weight so acutely.  I understand that, at times, the cloak will begin to reappear, but never as the all-encompassing whole that it once was.  I will then go about the process of removing the cloak once more.

I will ask for help from a professional if I feel that there is no way I can emerge from the darkness on my own.

I will allow myself the slack of a dirty house, a take-out meal, or whatever makes life a bit easier.  I will not allow myself to feel like less of a mother for it.

I will remember that the goals are important, but the journey is equally so.

I will allow myself the luxuries of a glass of wine, dessert, and whatever else might give me a moment's joy and relaxation.  I will feel no guilt for this indulgence.

I will take care of myself.  I will recognize that I cannot take care of my child(ren) unless I am whole and healthy.  I will take the time to focus on myself for while each day, even if it means that other tasks fall by the wayside.

I will remember that my children are still children, in spite of their special needs.  I will give them time to play and enjoy childhood in the way that is most appropriate for them.

I will not feel guilty in declining invitations to events filled with typical children, if it is too painful for me.  I will allow myself to back out of the typical social scene for a while until I feel that I can handle it.

I will try to not compare my child to other children, but I will recognize that it is only natural to do so.

I will not allow the numbers on an evaluation to deliver such a blow.  I will remember that my child is so much more than current functional levels.  I will fight to make sure that everyone knows my child beyond the paperwork.

I will remember that there is no better expert on my child than myself.  Doctors, therapists, and teachers, in spite of the time they spend with my child, do not know my child as well as I do.

I will allow myself to be loved for me.  I will find myself worthy of love.  I will love myself, too.

I will accept that it is okay for me to seek happiness beyond my child.  I will allow myself to be happy in spite of the challenges my child faces, and I will not feel guilty if I achieve that happiness.

I will remember that I am so much stronger than I appear.  I will remember that I can fight.  I will remember that I have fought.

I will remember that I am only human.

I will reach out to other moms like myself.  I will find a home among them.

I will remember that I am never - never - alone.

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Will you take this pledge with me?  Can we promise that we are deserving of happiness and a life beyond autism and special needs?  Can we promise to take care of the one person who, at times, carries the world on her shoulders - you?


Let's make this promise to each other and work each day to fulfill it.  Much love, my friends.

Thursday, June 14, 2012

Patience is a Virtue

When all else fails, when you feel like giving up, you
can always attempt to self-medicate with globs of
cookie butter.
Jack's special instructor has told me before that she gets really worried for me because I seem to not break too often.  She must not read my blog.

In reality, it does take a lot to send me over the edge.  I tend to keep my cool a long time.  I rarely honk my horn.  I don't tend to lose my temper very often.  I internalize much of it and, not unlike burying your face in a pillow to scream, I try to muffle my pain and frustration to the world's ears.

This past Sunday, I went over the edge.  I stepped off with both feet and plunged into a chasm of frustration.

It's been a hard several days.  It began with the realization that some of the progress I had made with taking Jack into public has started to slip through our fingers.  Granted, Jack can't do anything close to an hour-long grocery trip, but he had gotten to the point where I could take him into select stores for just an item or two, so a quick stop for milk at Publix was not a big deal.  Wal-Mart is off-limits, but it's honestly off-limits to me, too - I get really anxious and overwhelmed in Wal-Mart, so I never shop there.  Trader Joe's is also too much for Jack to handle, as is Kroger.  Publix and Target, for some reason, seem slightly less overwhelming.

No more.

It started with a trip to the library to return a book and get another from the holds shelf - a process which takes 30 seconds going through self-checkout.  Jack normally can do that, but not last Wednesday.  Instead, he froze 10 feet in the front door.  I heard the fretting begin just as I saw him fling his tiny body to the floor.  His legs started kicking the floor and tears streamed from his eyes.  I searched for the offending noise, sensation, or whatever was torturing him, but I couldn't see anything.  I picked him up, but his arms and legs were flailing and beating me so violently as he screamed.  Finally, I couldn't manage the onslaught and I had to put Jack down.  He wouldn't stop, and I felt my own fear rise.  I couldn't carry him, but Jack wasn't going under his own power.  All I could do is drop beside him as the other library patrons stared us down.

I wanted to be invisible.  Eventually a librarian came over and seemed to understand that this was more than just a temper tantrum, so she ran off to check my book out for me and offered to help me get Jack out to the car.  It may be a while before we return.

I thought it was an isolated incident.  I was wrong.

Occasionally, I do have to run an errand when my son is not in school or therapy.  Life happens that way.  Today, I needed to run two errands - one to Target and the other to Publix.  Being fairly benign locations for Jack, I felt little fear about it.

The trip to Target consisted of crying in the cart.  The trip to Publix was more than crying.  It was an absolute refusal to sit in the cart.  He locked his legs and flailed, screaming at the top of his lungs, the entire time.  I had to get just a couple of things, but I also left with that lingering anxiety that I used to feel so acutely when my boy would lose it in public.  We were 0 for 3 within a 4-day period and the fear that we were possibly facing another sentence of house arrest was really paining me.

Besides for the public displays of melting down, Sundays are notoriously difficult for Jack.  They are our only day of the week without a therapy or structured activity.  In reality, I need that time for all of the other things that our weekly schedule crowds out - like laundry.

This Sunday was a dreary, rainy day.  Now, I've spoken before about how rainy days seem to just augment some of Jack's issues, and today was a day in which the skies opened up and did not relent.  Jack was, as a result, a non-communicative, stimming, fussing, screaming, crying hot mess.  All I heard was "All Done!" to everything.  Every food was met with protest.  It took him almost 50 minutes to eat his dinner (a peanut butter and jelly sandwich) for all of the pocketing he was doing with his food.  I tried working with him with an iPad app that was suggested by one of his speech therapists to help him feel comfortable with his food, but he wanted no part with any of it, except to turn the program on and off, which is obviously not a functional use of his iPad.

The emotional roller-coaster of constant crying and fussing was getting to me.  By the end, my patience had worn thin.

So, what do I do when I lose it?  Well, I don't scream back.  I'm not that kind of person.  Instead, I take a nod from Jack and shut down.  I needed to just make Jack quiet, so I went into the kitchen and grabbed his iPad.  Normally, he is only allowed free play on his iPad (we use the visual timers, scheduler, and other programs at various points during the day) from 7 PM to 7:30 PM except in special circumstances (he can take it to the doctor's office), but I gave him his iPad at 6 PM.  Why?  I needed a break before I really lost it.

Jack self-absorbed into the world of his games while I hung my head in my hands.  I like to think that I can handle this all the time, but the truth is that I can't.  I couldn't handle it today, and I was ashamed that I was allowing my son to retreat away.  As Jack barely noticed my sadness and shame next to him, I got up and retrieved the container of Cookie Butter, the most delectable substance ever created, and consumed several spoonfuls straight from the jar.

I hate it.  I hate it when I can't keep it together.  It's hard enough for my boy to keep it together, but here I go giving in, throwing up the white flag and declaring that autism wins the day.  I hate giving in, but I simply can't help it everyday.  There are days when I hang my head low and try to hold in the tears.

Those are the days when I simply cannot engage in the battle against autism.

I hope I'm granted more patience in the future in these circumstances, but I know that we all have a breaking point.  Mine was crossed this weekend.  I hope that I won't cross that line again for a while, but I know that I am only human.

I just need to keep remembering that.

Wednesday, June 13, 2012

In The Neighborhood

As learned from my neighbor:
Snowballs are good for eating (if you like that nasty,
artificially colored coconut) and teaching the value
of monthly self-breast exams.
Tonight I got in an interesting conversation about neighbors I've had in the past.  Looking back, I've lived in close proximity to some real characters, each of whom has shaped my awareness of the community around me.

My first apartment was in Midtown.  Surrounded by a sea of fellow college students all awaiting the dawn of adulthood, I lived next door to a sex offender.

You heard me right - a sex offender.  However, there was a backstory to this, which was actually confirmed to me by his girlfriend, with whom the "offense" took place.  He was a high school senior, she was a freshman, and her father - like many fathers - was out for blood when he "caught" them.  Growing up in the South, I'd consider the guy lucky that he was facing criminal charges instead of the barrel of a shotgun.  However, this was about a decade and a half before Georgia would pass it's "Romeo and Juliet" law that made "exceptions" for high school cases like his.

Doesn't make it right, though.

Anyways, his bedroom was on the other side of mine, and we could essentially talk to each other through the wall.  He'd yell, "Do you have any milk?"  I'd yell back to confirm.  My roommates never locked our front door, so he'd come in and help himself.  There was even a time that he yelled into the bathroom at me when I was in the shower, because he was out of some grocery item.  He had to listen to the blaring of Pearl Jam and Nirvana from my room, while I got a dose or two of The New Kids on the Block, because he knew it annoyed the hell out of me.  I also recall helping him create a project for an anatomy class (I think he was pre-med) where he had to have a visual for a presentation on breast cancer.  So, we determined that Snowballs - the snack cakes - feel like boobs and that peanut M&Ms placed inside can "replicate" the illusion of a self-breast exam.

I bet you'll never look at Snowballs the same way again.  I never have.

I really never worried about him, because he seemed to have zero interest in me.  After all, he still had his 16-year old girlfriend (who was a twin, which apparently makes a difference to men).  I've often wondered about him (and if he ever got off the sex offender registry) since we moved that next year to another apartment.

I also had a roommate who had a boyfriend who cheated on her.  A year or so later, I saw her again at school and asked how she was doing (she no longer lived with me), and she told me that she was in a little trouble with the law due to slashing her boyfriend's new girlfriend's tires and throwing bleach in her face.  I made sure to always be nice to her after that.

The best neighbors take your 12-hour
old flat beer off your hands at 10 AM.
The next notable neighbor was one I lived across the hall from a couple of years later at what was my 3rd apartment.  I was moving in and he offered me his tools to help assemble some furniture.  He had a young wife and a family of young children.  Nice enough, right?  Right, he was very nice and courteous, always saying "Hi" when we passed and asking me how I was doing.  His kids thought my dog, who was a puppy at the time, was absolutely adorable.

Well, my roommate threw a party one night and got a keg of beer, which he continued to drink from at 10 AM the next morning, because the best part of waking up is flat beer in your cup.  Then, there was the time that I was coming home from work and, knowing my boyfriend was in the legal field, he asked if I knew a good divorce lawyer, because his wife was cheating on him.  It was a little more information that I wanted.

His mother-in-law also was also a bit, umm, interesting.  My roommate dressed up for Halloween as a, how shall I put this...particular kind of street walker.  My neighbor's MIL knew EXACTLY what she was dressed as without any explanation.

I was NOT dressed as a street walker, by the way.  I always stayed home, handing out candy, and dressed as tired-from-a-day-at-work engineer because of my fear of Halloween (to hear why, click --> here <--).

The next apartment I lived in the longest - about 4 years - before moving into our house.  There was a seemingly constant cast of characters there:

Smoking Man - So aptly named from The X-Files, because all I ever saw him do was smoke.  Seriously.

Scarface - He looked like John Leguizamo and resembled a character from the Dave Chappelle movie Half-Baked who was named Scarface.  He was actually a very friendly and funny guy, which was why he cracked up laughing the day that I called him Scarface to his face.  He also was so broke that he couldn't afford to pay his ad valorem taxes, so he kept making homemade "Tag Applied For" signs for his car.  He did this for over a year.

Having a license plate like this says NOTHING
good about you.  I promise.  This will repel women.
The Dan - I never personally met "The Dan", but he lived in my neighborhood and drove a very sporty car with a license plate that read THE DAN.  Now, given that I am an Autism Mom, I'll grant that maybe he was a Defeat Autism Now! (DAN!) doctor, but from the looks of it, he was just the kind of guy that calls himself "The Dan".

The Player - This guy was very nice, but had a constantly changing array of women at his home.  I passed many of them leaving, shoes in hand, when I was leaving for work each morning.  I called it the "Walk of Shame."  He also had a black-light in his living room, which cast a bizarre glow from his window on the 2nd floor.

The Domestic Dispute Household - This was really more sad than anything else, but there was one morning - it was about 7 AM - as I'm getting ready for work and I hear my next-door neighbor (a lady with a couple of very young children) getting into it with someone on the other side of her door.  Being the good nosy neighbor I was, I pressed my ear up to my front door and listened.  The guy was telling her that he didn't want his kids around her boyfriend after he reported to jail.  That's right, he was going to prison.  I contemplated calling out that day to work so that I wouldn't have to pass the melee between my neighbor and the convicted felon father of her children.

Even now, my neighborhood is populated with characters, from the Cat Lady next door (read about her crusade against kids' sports --> here <--) to the guy across the street who irons his clothes in his garage with nothing but a bathrobe and socks.

Each of these people has had a lesson to teach us all:

My Teenaged Sex-Offender Neighbor - There is absolutely an age of consent and Southern dads (rightfully) enforce it either through the criminal justice system or firearms.  Snowballs also make excellent breast analogs.

Psycho Roomie - Be nice to everyone.  You never know who might throw bleach in your face or slash your tires.

Family Man - There is always someone who will take your flat beer.  Also, if you know anyone in the legal profession, you'll get asked at least once for the name of a good divorce lawyer.

Smoking Man - Don't smoke.

Scarface - If you label people, eventually you will screw up and call them by their label.  Also, dodging your taxes is probably a bad plan.

The Dan - If you do things that make you seem like a bit of a douche, like have a custom license plate that says "The Dan", people will forever remember you that way.

The Player - One-night stands are probably a bad idea.  No one wants to do the "Walk of Shame."

The Domestics - Avoid prison.

Neighbors, for better or worse, shape our experience of home and give us reason to think, wonder, and laugh.  Personally, I'm glad I had such an fascinating rotating cast of neighbors, because I'm rather boring and they made my life a bit more interesting.

What kinds of characters have you had as your neighbors?  How have they shaped your experiences?

Tuesday, June 12, 2012

Little Musings

I have a bit of a wild side.  I let it show in bright red toenails, unabashed dancing in the kitchen when I think no one is watching, and uninhibited laughter.

I secretly hope that everyone continues to think that I'm much younger than I really am, but I know that the grey hairs that are becoming more visible will, eventually, betray me.  I just can't bring myself to dye my hair.  For now, I'll relish in the joy of being carded everywhere I go.

I still hold on to the somewhat naive belief that the average person is genuinely concerned with the well-being of their fellow man.  I think relentless optimism about the human race helps me stay young.  I find myself hurt by the same people repeatedly, yet I come back hoping that this time is when they'll change.

I've always been a "good girl", but I have always wanted to do something rebellious, like having pin-up pictures taken.  For some reason, posing wearing a 1950s era dress with bright red lipstick and a vacuum seems like the perfect way to rebel against the imprisonment of my reluctant domesticity.

I'm really not domestic at all.  To the contrary, I'm about as tomboy as you can get, but I have figured out how to fake it pretty well.  So, yes, I knit, cook, and occasionally clean, but I usually hate every minute of it.  I'd rather be running or in the sunshine with my boy.

I feel like I have to live up to this impossible standard of what a stay-at-home Mom should be.  Perhaps, I want to be my own kind of Mom.  I don't think Jack minds if I don't live up to the standard.

I think my soul lives on the beach.  I've never felt more at home than I do in the water.

I have little "theme songs" in my head at any given time.  Right now, it's Bruno Mars's "It Will Rain", which, I'm embarrassed to admit, is from Breaking Dawn Part One.

I'm a hopeless romantic.  I suppose I'll always be longing for the happily ever after.

I have written volumes upon volumes over the years that no one has read.  I find peace and solace in bearing my soul, if only to myself.  Perhaps bearing my soul here is cathartic as well.

I have a collection of over 200 poems that I have never dared attempt to publish.  Perhaps one day I will.

I am about 80 typewritten pages into writing my first novel.  I abandon it briefly when it seems to consume me.  At times, it seems so powerful that I consider discarding it altogether, but I can't bring myself to do it.  It is as if the story has taken on a life of its own.

I find that having a special needs child leaves you in a state of both acceptance, understanding, and longing for something more - not with your child, but with yourself.

I also know that having a special needs child makes you stronger than you ever imagined.  It makes you feel as though you can lift the world on your shoulders if only for your child.

I run for myself, for my spirit, and for the large slice of cake I so long to consume by savoring each deliciously delicate forkful.

I delight in the senses.  The smell of rain, with its notes of washed earth, grass, and the blanket of warm humidity that envelops you, simply takes my breath away.

I have never felt anything as soft and sweet as the gentle yield of my baby boy's cheeks to my kiss.

I don't listen to music; I feel it.  I like music with a beat because I can literally feel it reverberate rather than listening to the words, which may be why I bungle lyrics with hopeless inattention.

- and -

There are days when the words fill my head at a blazing pace and I am presented with posts such as this one.  I simply have to get the thoughts out on the screen in order to make them real.

Monday, June 11, 2012

Feeling the Music

Nighttime sharpens, heightens each sensation.  Darkness stirs and wakes imagination.  Silently the senses abandon their defenses...

Slowly, gently, night unfurls its splendor.  Grasp it, sense it, tremulous and tender.  Turn your face away from the garish light of day, turn your thoughts away from cold, unfeeling light - and listen to the music of the night.

Close your eyes and surrender to your darkest dreams!  Purge your thoughts of the life you knew before!  Close your eyes, let your spirit start to soar!  And you'll live as you've never lived before...

Softly, deftly, music shall surround you.  Feel it, hear it, closing in around you.  Open up your mind, let your fantasies unwind, in this darkness which you know you cannot fight - the darkness of the music of the night...

Let your mind start a journey through a strange new world!  Leave all thoughts of the world you knew before!  Let your soul take you where you long to be!  

~ "The Music of the Night" from The Phantom of the Opera by Andrew Lloyd Webber

---

One thing you may not know about me is that I come from a theatre family.  My parents and stepparents all love live theatre.  My sisters all act.  One of my sisters even majored in theatre.  They all love musicals.  When I was much younger, my parents had season tickets to the Fox Theatre's "Theater of the Stars" and saw nearly every show that came to Atlanta.

Even my extended family is full of people who can sing or act or have some degree of musical talent.  I am the black sheep/engineer among a flock of thespians and musicians.

Now, you'd think that I'd be a big theatre person, too, but you'd be wrong.  Really wrong.  It's not for a lack of effort, but for a lack of motivation and talent.  There was a point in my life that I tried my hand at both singing in the school chorus and participating in a few shows.  I did it because I wanted acceptance so badly.  My mother was a singer, so I wanted to do something to please her.

I'd have much rather been reading about dinosaurs - my obsession at the time.  I was always enthralled by the pursuits that many - including my mother - thought were better suited to boys, like sports and science and dinosaurs.

The problem?  Well, I have the Worst.  Voice.  Ever.  Seriously.  I was in my 5th grade play because everyone who was in Chorus got a part.  In my 6th grade year, I was not so lucky.  I even volunteered to be part of the "chorus" (the show was The King and I), but I was the only person not picked from the volunteer pool.  It was at that point where I resigned myself that I was not musical, so I refused to take Chorus the following year.  I was much happier for it and accepting who I was, even if that meant I was not an actress and a singer.

I've been to a fair amount of musicals over the years in support of other people, but I have a confession - I hate musicals.  For the most part, I think that they're too peppy and comical.  I never understood the merit of singing your dialogue.  There was always too much dancing and movement on stage, which makes it hard for me to focus on what is being said/sung.  So, I feel lost watching most musicals.

Just because I don't enjoy performing, as my family does, doesn't mean that I don't intensely appreciate art.  I imagine that I probably appreciate it more than most.  I love classical music and I adore going to the High Museum of Art.  I love seeing the textures of paintings - it gives them much more depth than I see when I look at a piece on a flat medium.  The colors pop, the violins surround me, and I feel incredibly at peace.

It's come to my attention that most people probably listen to music a bit differently that Jack and I do.  Jack freezes on the spot and stares off into space when he listens to music.  We listen to music a lot when eating, because it seems to transport him out of his anxiety.  It's as though it takes all of his effort to simply focus on the music, so he surrenders his anxieties away and takes his attention away from his mouth.  My guess is that Jack - not unlike myself - will be a horrid dance partner, because aside from his motor planning issues, music causes him to just go into "stand-by" mode.

I can tell you for a fact that just because Jack does not seem to be paying attention to the music, almost like he's in a trance, he is absorbing every word.  I say this about kids with autism all the time - just because they look like they're not listening doesn't mean that they're not.  They simply have to do different things to focus than the rest of us.  I know because he can repeat a song - inflection and all - after being exposed to it once.  Another interesting thing about kids on the spectrum, they have such incredible memories that I've heard of many who sing better than they speak.

I get it with music, though.  Where Jack simply can't filter music out, as though he has to listen, I can tune it out; however, if I'm going to listen to music, I have to shut my eyes and freeze, not unlike Jack.  

I'm not totally sure that people experience music like we do, but I feel music.  That sounds weird, but I feel it reverberate in my body.  It adds to the experience.  By shutting my eyes, taking away the deceiving qualities of my vision, I can feel the music around me.  I can focus on the words.  I can actually hear each word this way - a problem that I've had since childhood.

I simply can't process spoken words well with other stuff going on around me, which got me in trouble a lot as a 1st grader when the audiologist told me to simply ask classmates when I couldn't understand what the teacher was saying.  This was in the days before 504 accommodations, because the audiologists might would have pushed for a 504 for me if I had been in school now.

Instead, I had an old, mean teacher who simply punished me for talking in class.  She didn't care that I couldn't understand what she was saying, because children don't talk in class.  End of discussion.  She also basically gave me failing grades in handwriting, a skill I have yet to master.  She's not on my Christmas card list, obviously.  She's also probably about 99 years old if she's still around...she was in her 60s at the time.

When I close my eyes, I can hear better.  I can hear the nuances of music.  It surrounds me and has a weight about it.  Like a blanket, I can feel it around me.  It makes me a horrible theatre goer, but I do enjoy the symphony and the opera.  I can close my eyes and feel the gentle lullaby of the strings and woodwinds, the light tap of a piano, and the pressure of the beating drums.  It's why I tend to turn music up when I'm alone - because music takes on another quality when you feel it.

Personally, I like the way I hear music.  I imagine Jack hears music this way, too.  It seems to be a very sensory experience for him.  It certainly is for me.  I don't think I would enjoy music any other way.

I included the lyrics above from one of the only musicals I like - The Phantom of the Opera.  It's one of my favorite songs from the show, and I think it describes the way I hear music.  

And yes, I've never actually "watched" The Phantom of the Opera, even though I've been in attendance.  I close my eyes and feel it.  I've included a YouTube clip of a performance of "The Music of the Night" from the Royal Albert Hall (and yes, I'm aware that there are Italian subtitles on it).  I challenge you to shut your eyes and open up your senses.  Breathe the music in, taste it, feel its weight around you.  Don't allow your eyes to do the work for you - let every other sense jump forth.

Friday, June 8, 2012

Hearing "Carly's Voice"

Every once in a while, a book comes along that really makes you think and reevaluate what you know.  Ever since Jack was diagnosed, I devour books written by autistic individuals in an effort to truly understand what my boy might be experiencing.

Never have I read a book that took my breath away quite as much as Carly's Voice by Arthur and Carly Fleischmann.

Imagine being a non-verbal little girl who is placed on the severe end of the autism spectrum.  Due to severe apraxia, you cannot speak.  Your system is bombarded with sensory information that your body processes incorrectly.  Everyday sounds, smells, and visual sensations are more than just overwhelming - they're painful.  All this, and you cannot voice a single painful moment.  Doctors and psychologists tell your parents that you have a cognitive impairment and you are treated that way.

Inside, there is a person with normal - even gifted - intelligence who is simply screaming to be let out.

Carly's Voice is the story of the release of such a remarkable young lady.  In her adolescent years, Carly finally was able to communicate with the rest of the world through typing and show her family, her teachers, and her therapists just what her brilliant mind was capable of creating.

Reading Carly's story, several things struck me.  First, hearing her describe how she experiences the world through her sensory processing challenges left me with both a greater understanding of what the world must seem like for Jack and a profound sadness at the same.  It helped me understand why he reacts the way he does.  If the world is as intense to him as Carly describes, I can only imagine the anxiety he must feel.

Second, I am even more convinced that inside of each and every autistic individual is a mind waiting to be freed.  One of Jack's speech therapists has told me from the beginning that there is so much in the mind of autistic children that is simply waiting to be unlocked.  I believe this wholeheartedly.  I know that Jack's cognitive abilities must far exceed what he is able to show us.  When tested, he scores very low, not unlike Carly did as a small child, but I know that there is more to him than that - just like with Carly.

Carly proves that an individual's ability to communicate verbally has no impact on their intelligence.  There are many individuals who are non-verbal and gifted at the same time.  Verbal speech does not reflect the brilliance of one's mind.

It also shows that while we might look at an autistic person and think that they aren't paying attention to us or the world around them, they are - in actuality - taking it all in.  They simply do it in a different way that we might not understand.  It does not mean that they aren't listening or comprehending it all.

What I love about reading the words of autistic self-advocates - like Carly - is the overpowering sense of hope they provide.  Regardless of their level of independence - a benchmark that many of us in our society seem to equate with success - each of these individuals is able to achieve a fulfilling, happy, and satisfying life.  Isn't that what we all want for our children?  Ultimately, regardless of what I want out of life for Jack, the most important thing - and what I truly want for him - is for him to just be happy with his life and himself.

As a parent, it also gives me hope that in spite of the challenges we might face both now and in the future with Jack's autism, we can - we will - always find a way.  When one door closes, a window will open, and if there is no window, I will - I can - create one.

If you want to read a book that will make you think, make you cry, and inspire you, I'd highly recommend Carly's Voice.  It is a brilliant view inside the mind of one very inspirational young lady.

---

Besides just reading Carly's Voice, if you want to get a glimpse into the world as seen through the eyes of a person with autism, I'd highly recommend you go to Carly's Cafe.  In conjunction with the book, Carly's Cafe provides you a inside look at what kinds of challenges autistic individuals face daily.  It will only take a few minutes of your day, but it will open your eyes for a lifetime.

Thursday, June 7, 2012

Rescue Me

My furry little heart.
Today, I'm going to talk about a very special little soul in my life.  I'm going to tell you a little about Mason.

Who is Mason?  Mason is my sweet 13-year old little dog.  He's also a rescue dog.  Mason can teach the world about several things, but one of those things is second chances.

You see, we got Mason when he was 7 years old.  At the time, our dog Champ, who passed away about 18 months ago from a brain tumor, was about a year old and we felt that he needed a companion.  We had gotten Champ from a pet store, quite reluctantly from my perspective, but I wanted to rescue a dog this time around.  So, we went through a local rescue organization.  Looking on their website, we were looking for a dog closer in age to Champ, but Mason simply stood out.  There he was, his face aglow with happiness.  I was drawn to him, so I included his name on our application.

A few weeks later, I got a phone call from the rescue organization about starting the adoption process for Mason.  I swear, I think it's easier to adopt a child than it is to adopt a rescue dog.  We went through interviews and home visits before we were approved.

It was Memorial Day weekend in 2006 when we went to pick Mason up from his foster family.  He was obese - God was he obese - but there was a kindness to him that seemed to cut through his past. You see, we knew very little about Mason's past except that he was an owner surrender.  His previous owners had Mason and another pet, but Mason was the one they gave up.  He came with a whole trunk's worth of clothing - yes, clothing - but very little in terms of an explanation as to why they could not keep him.

It was an hour drive home from Mason's foster parents' house.  I rode in the backseat with Mason, because I didn't want him to feel like he was just being transported somewhere.  I wanted him to know that he was going home.  I talked to him and patted him and by the time we got home, he seemed like he was hopelessly in love; however, so was I.

Ever since, Mason has been my shadow.  When I was on bed-rest, he was there.  He waits at the door for me.  He sleeps with his head on my leg every night.  He is a constant presence, there for me to hold when I needed a shoulder to cry on.  His warmth is ever present in my life.

More than anything else, he is so incredibly good with my boy.

When Jack was born, we were worried that perhaps Mason might not be good with a new baby.  We didn't know why he was surrendered, so we just didn't know what to expect.  We didn't have anything to worry about, though.  Mason has always regarded Jack as an extension of me.  He treats him with a gentleness that I can't describe.  Mason acts concerned for Jack when he is melting down - truly concerned - and stays close to him, just keeping vigil until the storm has passed.  When Jack was a baby, he was always by Jack's side.

I think that Mason knows that Jack has special needs.  I think that he senses that Jack is different.  He regards him that way, as though he is a person to treat with extra care and consideration.  Jack doesn't acknowledge or regard Mason without prompting, but if he accidently trips and falls on Mason, or if he hits Mason inadvertently in the midst of a meltdown, Mason just looks at him with kindness and an expression that says, "I know you didn't mean to do that.  I love you anyway, and I know you love me, too."

What a wonderful miracle to be blessed with a dog who just understands my boy.  I may have rescued Mason, but in so many ways, he has rescued us all.

So, I beg you, if you are considering getting a dog, consider a shelter dog or a rescue.  It is a decision that you will not regret.  Let one of these beautiful creatures rescue you, too.

Wednesday, June 6, 2012

The "Ex" Files

Haha!  Never mind...I'll find someone like you.
Okay folks, I need your opinion on this one.

I got a friend request the other day on Facebook from an ex-boyfriend of mine.  We dated on-again and off-again for quite a while before Brian and I started dating.  It was a long-distance thing for a while and, well, as many long-distance things tend to do, it just fizzled out...at least on my end.

Okay, maybe it fizzled out before that for me.  He was more than a little clingy.  I've never been much for clingy.  Maybe that's why I was always the one "ending" the relationship...in every relationship I had.  Let's face it, not all relationships are good ones.  We've all had our share of crappy relationships.  Not that I was the greatest girlfriend, either.  I was clumsy, awkward, nerdy, and I had an unnatural love for the strangest music (I type as I'm listening to Rick Astley).

That, and I was a big commitment phobe.  Hell, I dated Brian for 7 years before I married him.

Rick Astley will do none of the above.
Eventually, we always managed to get back together because, well - and I'm not proud of this - dating is fun and it sucks going to parties by yourself and having nothing to do on the weekends.  He was attractive enough and in pretty good shape, if you're looking at this from a purely biological/hormonal perspective.

Does that make me shallow?  In my defense, this was more than 13 years ago (that's how long Brian and I have been "an item").  A decade and a half adds some maturity.

Once Brian and I became closer, before we started dating, my mind shifted away from the ex to Brian who was just as attractive, had more in common with me, and - the biggest plus of all - lived in the same zip code.  It was a match made in heaven.

Over the years, we've intermittently kept in touch.  There was a point, back before Brian and I even got engaged, where we decided to take a "break" - okay, maybe more of a permanent break...but I won't go into the gory details - and after a couple of months of being single again, me and the ex temporarily discussed the possibility of giving it another go.  After more than a month of discussions (What can I say?  I'm a negotiator...), Brian and I reconciled and I let the ex go for the final time.

As you might imagine, he was a little sad.  I think he always considered me to be "the one that got away".  Every now and again, I'll get a text on my birthday, but it's probably been about 5 years since I've heard from him.

Until now.

A lot has changed with the both of us since we last spoke.  From the limited Facebook stalking I've been able to do, I can see that he's married.  He also still lives multiple area codes away.  So, that makes the possibility that he's looking to rekindle a relationship approximately slim to none, in my opinion.  I guess I've known a philanderer or two in my day...but not in that way, don't get the wrong idea!  I've just known of them and, based on how they've treated some of my friends, I'd be more than willing to use their balls for self-defense/kicking target practice.

Sorry, cheaters.

In the words of Beyonce - if you liked it
then you should've put a ring on it.
Things have changed with me, too.  I now am a mom and a stay-at-home one at that (something he'd probably have never guessed and it will leave him thinking that hell has frozen over).  I'm also the mom of a special needs child, which I think drives down my desirability quotient.  After all, I come with a lot of baggage.  We're talking shipping containers worth of baggage.

So, this all makes me think that he just wants to be friends.

Why does he want to be friends with me?!?  After all, the way I broke his heart - repeatedly, and I do feel badly about that, so don't think I'm heartless - you'd think that he'd probably think that there was a special place reserved in hell for me, or at least at a Justin Bieber concert, which probably is worse than hell.

Here's the thing...I know plenty of people who are friends, even good friends, with their exes.  Brian is one of those people.  He's friends with many of his ex-girlfriends.  He keeps in touch with them.  He emails and sees them on occasion.  I, on the other hand, do not.  It's not that I have a legion of evil exes; rather, I have so very few of them.  I tended to go on a date (or two) with people and that was it, thus we weren't really together long enough for me to classify them as an "ex".  I just saw no relationship potential.  Some bored me.  Some were kind of weird.  Others, well, looked good on paper but in reality were just lacking...something.  Maybe it was the way they ate their peas one at a time (for those of you who are Seinfeld fans).  I dated a few criers, so maybe it was that?

That also makes me sound shallow, doesn't it?  I'm really not!

What do you think, loyal blog readers?  Should exes remain just that - exes - and thus be excluded from the all-important realm of your social network, or should you let bygones be bygones?  Love some opinions on navigating this element of the social waters...