Thursday, May 31, 2012

Marley and Music Therapy

One good thing about music, when it hits you (you feel no pain). ~ Bob Marley, "Trenchtown Rock"

As with so many things, Jack tends to get stuck on one particular thing.  Since he started preschool, the highlight of his school week has always been music therapy.  He gets weekly music therapy through school and really seems to thrive from it.

It's interesting how autism works.  Jack can only say 1-2 word phrases spontaneously - things like "Up" or "More glug-glug (milk)" - but he can remember all of the words to a TV show or a song he hears and recite it with astonishing accuracy.  Now, most people can't understand what he's saying when he scripts - his articulation really seems to be much poorer when he's scripting - but as his mother I can hear the tell-tale words that indicate it is one particular show, or vocal prompting from his iPad games or a toy, or that it's a particular song.

Hence where the music therapy seems to sink in.  Despite appearances to the contrary, it is clear to me that Jack is listening all the time, even when he doesn't appear to be doing so.  He can give the impression that he's not paying attention through his lack of eye regard or stimming, but in reality he's taking it all in.  So at school when he's acting disengaged during music therapy, he's still listening.  In fact, he will recite the songs over and over again after hearing them once, so he's obviously listening.  That and he obviously has an absolutely ridiculous memory; he's like a computer that just stores all of this information in his memory after it gets inputted only once.

Plus, even though it's very echolalic and tends to become perseverative, I get to hear adorable things such as this:

"I shot uh shawiff, buh I did-m shoo uh W-T..." (Translation:  "I shot the sheriff, but I didn't shoot the deputy...")

But back to the music...

Thank God we don't have to go there.
Jack's favorite music to listen to is reggae and his absolute favorite artist is Bob Marley.  In particular, Jack loves listening to Bob Marley's Legend.  I can't blame him, Marley is awesome, and hell, I've got to thank my lucky stars that my kid perseverates on Bob Marley rather than The Wiggles.  Parents who have kids who love The Wiggles, I pity you.  Seriously.  And as an aside, those of you moms who have mentioned to me that the Blue Wiggle is the "Hot Wiggle", I just don't see it.  The Wiggles make Australian accents far less sexy.

So, we listen to significant amounts of Bob Marley in our house.  Why?  Because, Jack likes it and there is something about the music that calms him down.  Perhaps it's the predictability.  After all, no matter how many times I play Legend, it always sounds the same.  I know that Jack thrives on predictability.  After all, he now refuses to watch Super Why! and shows incredible anxiety when it's on because one of the last times he watched it an Emergency Broadcast alert came on - high-pitched screaming alarm and all.  Now, he screams and shakes if he sees Super Why!.

Songs are predictable.  Many other things aren't.  Music, especially certain genres like reggae, jazz, or blues, tend to be very soothing.  Jack likes reggae, but he also seems to enjoy classical music, too.  The calming rhythms just seem to speak to him in a way that words can't.

Music has been a part of Jack's therapeutic program in various ways over time.  Only through school has Jack done music therapy, but he has done a therapeutic listening program through his occupational therapist.  Many of his therapists sing to help him through transitions (it seems to reduce his anxiety during times of change) or to help keep him calm during stressful times (like feeding sessions).

It's always wonderful to see something, like music, give my boy a bit of joy and help relieve his anxiety.

I've heard that many special needs children seem to respond well to music.  If you have a special needs child, does your child like music?  How do you incorporate music into your child's life?

Wednesday, May 30, 2012

Even I Have Standards

The one and only.
Totally frivolous post here.

Being a special needs mom, I try to watch our budget closely.  After all, you tag the words "special needs" on to anything, and the price seems to increase exponentially.  For example, I was looking at trampolines recently.  A trampoline with a hand-grip (what Jack would eventually need, but he's not jumping yet) from Toys R' Us costs around $60.  In a special needs catalog, a similar trampoline is $120.

That sucks.

However, I'll admit that I'm cheap regardless of my child's diagnoses.  Really, my cheapness doesn't always mean that I reach for the least expensive of any given item.  After all, particularly for big purchases, I find that paying for quality ends up saving you money in the long run.  I tend to use Consumer Reports a lot when it comes to purchases.  I also research them to death.  I then wait until I either A) have to make a purchase, because my previous item has either disintegrated or exploded, or B) wait until it goes seriously on sale - and I am uber-patient when it comes to this.

However, there are some things that I absolutely have to go name-brand on, because even I have standards:

1. Mayonnaise.  I'm sorry, but buying anything other than Hellmann's original is just plain wrong.  Anyone who tries to tell you that the light stuff (commence dry-heaving now) or the store brand is just as good is one of those people who clearly must brush their teeth before eating a meal, because they have denatured all of their taste buds and couldn't tell the difference between the taste of mayo and shoe leather.

2. Chocolate Syrup.  As an avid chocolate milk drinker (even though the lactose gets me every time), I consider myself to be a connoisseur of chocolate syrups.  Store-brands simply will not do.  Nor will Nesquik, which tastes like what I'd imagine Ovaltine would.  We only go with Hershey's in this house.

3.  Toilet Paper.  Now, I know what many people will say..."But it just goes down the toilet!"  Yes, but it goes other places, too.  Sorry, but I'm a toilet paper snob.  I'll only buy Quilted Northern or Charmin. I know I can't be the only one who feels this way.

4.  Paper Towels.  After having a child who threw up nearly daily for the first 2.5 years of his life, and who still throws up more often than the average kiddo, I consider myself to be an expert on what paper towels give you the most bang for your buck.  Believe me, we used to go through several rolls a week; I know my $#!& when it comes to paper towels!  We use Viva, and if you've never tried them...do it!  They're very cloth-like, so they're very absorbent.  If you get the "Choose-A-Size" variety, you can conserve your paper towels by only using the amount you really need.  Since these are so cloth-like, you'll find that they go a long way.

5.  Running shoes.  I've never spend more than about $20 on a pair of shoes (with the exception of the shoes I had to buy for my sister's wedding) until I bought my Nike Free Run +2 shoes.  Why spend so much on a running shoe?  Well, if you want a shoe that will help you maintain a proper stride, thus decreasing wear and tear on your feet, legs, and knees, then go for a quality shoe.  If you like blisters, by all means, go for a discount store shoe.

6.  Pickles.  This sounds silly, but I can't stand limp pickles.  It is definitely a sensory thing for me.  It is semi-dry heave inducing even thinking about sinking my teeth into a mushy pickle.  Now, I'll buy off-brand relish, but that's because I never take spoonfuls of relish straight.  For actual "eating" pickles, I only buy Claussen.  My pickles need a crunch.

The best.
7.  Dog Food.  I know some people who can easily feed their pets "Ol' Roy", but I can't bring myself to doing it.  Honestly, I think that the quality of dog food you get does impact the health of your pet.  When I was a veterinary technician in college, I actually took a course on pet nutrition.  There are certain "grades" of pet food - even though they aren't labeled that way.  The higher grades include more natural ingredients and additives - like glucosamine and chondroitin - that can really be beneficial to your pets.  Lower quality pet foods can also change their formulas more often without having to update their guaranteed analysis.  I never feed Mason anything below a premium brand as a result.  He currently eats Science Diet Small Bites Senior and the added glucosamine and chondroitin really helps his joints (he's 13, so it's a consideration).

8.  Electronics.  I know people who go into BrandsMart and will buy the "Crapsonic" brand of anything because it's half the price of the name-brand.  Well, it also typically lasts half the lifespan of the name-brand, or it works half as well.  I have an old-school Magnavox TV in my bedroom that has lasted over 10 years.  It was rendered obsolete long ago, but we still get good use out of it.  Why?  Because we bought a quality brand, therefore we haven't had to replace it.

9.  Laundry Detergent.  I've tried store brands.  I don't like them.  There's something alluring about the scent and softness of clothing laundered with name-brand detergents.  Really, I'm not partial to a particular one, and we use Tide, Gain, or All...really whatever I have a coupon for and what ends up being the better price.

10.  Toothpaste.  I grew up in a house where my Mom bought no-name toothpaste and I'm still haunted by the aftertaste.  It'll never leave me.  If you're a coupon-clipper, there's really no reason to buy off-brand toothpaste, anyway, because with coupons and sales I never pay more than $1/tube of toothpaste, anyway.

In contrast, here are some surprising things that I will absolutely buy off-brand (but I know many people will not):

You won't regret switching from the name-brand.
You'll definitely love that they're half the price, too.
1. Diapers/Wipes.  We're a, shall we say, "extended diapering" household?  Okay, so potty training isn't anywhere close to being right around the corner.  Really, it's pretty low on our priority list, and Jack needs to have some degree of awareness of when he has gone before we can really tackle this issue.  So, we still buy tons of diapers.  We went the Pampers route for the first year of Jack's life and felt the pinch.  Ever since, we've used Target diapers and love them.  They're half the price and super cute, particularly for boys (they've got green and blue dots on them) since so many brands incorporate pinks and purples into their diapers.  Not very manly.

2.  Shampoo/Conditioner.  It just washes my hair, really.  Now, I don't buy the VO5 stuff, but I use the nicer Suave shampoos.  Why?  Because I can't tell a difference.  Neither can my family.

3.  Coffee/Tea.  I won't get the store-brand Brick-O-Coffee, but most store-brand tinned coffees are okay.  Really, I don't drink it because I'm a coffee connesiour; I drink it because I need some friggin' caffeine.  The same with tea.  I love English Breakfast Tea, but I've found that Trader Joe's sells a decent one for $1.99 for a 48-count box.  Compared to $4.00 for 20 of Twining's, I'd say that Trader Joe's wins.

4.  Clothes for me.  I'm a big Target shopper for myself.  I don't think I've owned a name-brand pair of jeans in years.  The closest I've come is my Eddie Bauer corduroys, and that's only because I'm apparently the only person who thinks that cords are in-style (they are!!!).

Are you a product snob about certain items, like me?  What purchases do you get all snobby about?

Tuesday, May 29, 2012

Special Needs Explained: Stimming

One of Jack's favorite stims - hand-flapping.  In a way, I
love seeing it, because he's almost always over-the-top
happy when he flaps.
Stimming.  It's one of those things that you just have to see to understand, but I'll try to explain it without you seeing it necessarily.  If you want to see stimming, just look it up on YouTube.  I'm sure plenty of parents have posted videos of their kids' stims.  I'm just not one of those parents.

I do have pictures, though, because I love nothing more than seeing my boy being over-the-top happy.

What is stimming?  Stimming is a term special needs professionals and parents use for self-stimulatory behavior.  Stimming comes in many flavors.  Basically, just about any repetitive behavior will do.  Jack's stims are verbal (scripting and/or perseverating on a word or phrase), visual (cutting his eyes at objects, dropping objects in front of his eyes), and some of the more obvious (hand-flapping and pacing).  Some, like self-injury, can be downright scary.  Interestingly enough, Jack tends to use different stims in different situations.

So, why would a child (or an adult) need to engage in self-stimulatory behavior?  Well, there are many, many reasons, really.  Some kids, Jack included, stim when they are in a stressful situation.  You'll see Jack script or pace when he's stressed, like if he were in a crowded waiting room.  In these situations, stimming is, to me, preferable to melting down.  If my kid needs to stim to keep it together, then I'm all for stimming.

Some people stim with extreme emotions.  From what I understand from reading the insight of autistic self-advocates, extreme emotions (extreme joy, fear, anxiety) tend to be dysregulating, but stimming helps that individual keep it together and, at times, even augments the experience.  So, hand-flapping can make happiness seem even better - over the top, even.  Jack hand-flaps if he's really scared or anxious (bath time comes to mind) or if he's really, really happy.  I think Jack flaps the most when he's really happy or particularly stimulated.  If he's watching an object spin, for example, he tends to flap his hands.  The same goes for other visually stimulating situations.  Jack has become quite the hand-flapper these days.

Sometimes, stimming is, in and of itself, self-reinforcing.  If you think about it, behavior always happens for a reason, but sometimes the behavior itself actually causes more of the behavior.  Jack's tendency to self-injure comes to mind when I think of self-reinforcing stimming.  Jack tends to scratch at his skin to the point of tearing his skin open at times.  At first, something might trigger his scratching, like stress, but after that, he continues to scratch simply to keep scratching.  He doesn't feel pain like we do, so the sensation he gets from the self-injury doesn't deter further scratching.

I think that people think of stimming, even though they don't know the technical "term" for it, when they think of kids on the spectrum.  When Jack flaps his hands, he definitely gets noticed.  I also think that stims tend to be more noticeable as children age.  I guess that as kids age, people have a more rigid idea of what their behavior should resemble, thus seeing a child whose behavior tends to deviate from that norm will cause some heads to turn.

Personally, I don't see a big problem with stimming.  I hear of some people who try to stop their kids from stimming, but I don't stop stimming unless it is impeding Jack's ability to do anything else.  The scripting tends to become a behavior that's difficult to break, but I see the hand-flapping as an expression of joy from my boy, in most cases.  When people stare when he flaps his hands, I don't really even regard it.  After all, if someone else has a problem with how my boy expresses his joy, I consider it to be their problem and not his.

The reality of the matter is this - we all stim.  Yes, we do!  Special needs kids may just do it in a more obvious way due to their needs or social understanding, but many of us stim.  How many of you tap your feet?  Or your pen?  Do you chew gum?  Do you crack your knuckles constantly?  All of these things can be stims.  We do it to help us regulate ourselves and focus.

That's not too unlike what special needs kids do!

The take home lesson is this - stimming is a necessary thing for many of our kids.  It's a way that they help regulate themselves.  So, if you see a child stimming, don't stare.  Realize that may be that child's way of expressing many different emotions and keeping him or herself regulated.  In essence, it may be that child's way of being able to be a part of the world in that moment.

Monday, May 28, 2012

Walk Beside Me: One Year Later

Don't walk behind me; I may not lead.  Don't walk in front of me; I may not follow.  Just walk beside me and be my friend.  ~ Albert Camus

One year ago, I published a post called Walk Beside Me in which I told the world that my baby was diagnosed with autism.  I began that post with the quote above, which I feel is just as relevant today as it was then.

Today, a little over a year since that original post, I can talk about walking in a more literal sense.  You see, this year we did our first Autism Walk as a family with an autistic child.  Last year, Jack had only been diagnosed for a couple of months when the walk rolled around.  We did not feel like we were in a position to come into that community just yet, but this year was different.

We had our struggles at the walk.  It definitely isn't an "autism friendly" event, and it definitely wasn't a scenario we ever voluntarily place Jack in, because we know the consequences.  However, some things are too important for us to sit out.

So, Jack did a good bit of screaming and fretting, which looked a bit like this:


And both Brian and I carried and rocked and consoled him to the point of our backs being nearly destroyed...like this:


But we (Brian and I) put on our happy faces to the extent that we could, because this is about awareness and hope and compassion and understanding:


And we walked and braved the beginnings of a scorching Southern summer as a family because we are in this together:


And we do it all because of him:


Because more than anything, I want him growing up in a world in which people have awareness of his needs and understand that, in spite of his limitations, he is incredible and capable of amazing things that we cannot yet imagine.  

So that Sunday morning, we braved the heat, the sensory bombardment, and the loudspeakers - oh, God, were there loudspeakers...and cheering...and Jack was so far gone that he screamed when I tried to put headphones on him - but we did it because this isn't just about the beautiful little boy you see above.  This is about my child, and yours, and that one, too.  It's about all of our beautiful children on the spectrum.  It's about standing together - walking together - side by side in a symbolic stand to show the world that we are not alone.  There are hundreds of thousands of us who love a child with autism.  They are not a rarity.  They are a group of people with both amazing talent and a need for support all wrapped into a beautifully complex human being.  They are people as diverse as the population as a whole, and we will not stop fighting for them.  I will not stop fighting for him.

I thank you all who donated, participated, shared, or walked with us on that day.  It is through the continued support of wonderful individuals like yourselves that I have hope - and there is such reason to hope - that the world in which Jack grows up will come to accept him and other children like him for the wonderfully unique individuals that they are.  It gives me hope that continued research will produce greater understanding of autism and of treatments that will make a difference in our kids' lives.  I have hope that with us all walking side-by-side, sweet children like my boy will live a life full of as much self-determination, independence, success, and fulfillment as is possible for each of them.

Thank you, and I hope to have you walking along side me again next year.

Saturday, May 26, 2012

The Apple Doesn't Fall Too Far

Today I'm over at The SPD Blogger Network again!  I'm talking about how our kid's quirks can (sometimes) resemble our own.

Come on over and check out the post by clicking --> here <-- and leave a comment about whether or not you find that the sensory quirks of your children are somewhat like your own.

Have a wonderful, relaxing, and meltdown-free weekend, my friends!

Thursday, May 24, 2012

A Free Day

I've been a bit of a Debbie Downer this week.  Admittedly, I'm in a bit of pain from carrying Jack half of the time at this past weekend's Autism Walk (Brian carried him the other half) and from not taking time off of my training schedule to recover, but the pain runs a bit deeper this week.

Tuesday was what I like to call a "Snuggle Day".  Essentially, a Snuggle Day is a day in which we have no therapy, no errands, no nothing.  We stay in our pajamas and spend the day just relaxing.  Ever since the bump in Jack's therapies and the start of school, we no longer have therapy-free days.  However, this is the first week of summer vacation.  One of Jack's speech therapists is taking some well-deserved time-off, leaving us with a very rare day with nothing on the calendar.

As I've said before, this can be a blessing (for me) and a curse (for Jack).

This week, I was the one who was down.  I guess I just saw days like that as going a different way.  It's some of the little things that I miss getting to do with Jack.

What do I picture Snuggle Days as being?  Well, I've always imagined that Jack might crawl into our big bed after Daddy leaves for work.  Maybe after a bit more sleep, we'd go downstairs and I'd make him a big breakfast of eggs, bacon, and pancakes, or whatever his favorites happened to be.  We could cuddle on the couch with cartoons or a movie.  He would comment about what was so funny in his favorite shows while we cuddled.  We wouldn't have a care in the world.

That's not our life, though.  There are many, many aspects of our reality that make that scenario just a dream.

Sometimes, no matter how hard I try and how much I remember how far we've come, the realities of what we miss still get me.  They sneak up on me suddenly, like when I see a friend's child, one even a year or more younger than Jack, who can tell her what he wants and what happened during his day.  Or when I think of the things I'd like to do with my boy.  Or when I think of what we might have missed in his earlier years.

It's not fair to Jack for me to think, "What if?", but I'm only human.  Like all humans, I cannot help but dream and wish, and I hurt when those visions don't come to fruition in the way that I imagined.  I know that the little wishes get replaced with other ones - like the little milestones my boy makes that are so big to him - but we cannot help but mourn for the "What ifs".

In fact, the lazy days seem to stress Jack out.  While most of us live for the days that we can relax, sleep in, and do nothing, those days of unstructured time seem too much for my boy.  He spent most of the day confused, seeming to search for what was next.  He kept chanting "more swim", as the mornings without a trip to the therapy clinic seem to always be days for aquatic PT.  When we did not go to the aquatics center today, it was more than he could handle.  He cried on and off.

Nothing is harder than watching my boy's inability to understand what is happening to him and the fear and anxiety that it produces when he does not know what's next.  As much as I try to help him understand, there is still a disconnect.

I wish that the carefree days at home didn't always result in this.

I think that is part of being an autism mom...we ride this roller coaster of emotions that tends to be based on the kind of day our children have.  Some days we are on top of the world, especially the days in which we hear a new spontaneous word or some other milestone.  There are others still, Tuesday being one, that the car comes crashing down from the top of the hill.

Those days - days like Tuesday - we just have to hold on tight and know that the car will, eventually, come back up again.

Wednesday, May 23, 2012

"Mom Enough"

Image Source:  Time
There has recently been a lot of controversy surrounding a recent Time magazine cover in which a mom is shown breastfeeding her 3-year old.  While I have not read the article in it's entirety, it is a piece describing the attachment parenting movement, lead by pediatrician Dr. William Sears.  Think Dr. Spock of the modern age.  If you're not hip to mom lingo, attachment parenting is all about making yourself available to your children by baby-wearing, co-sleeping, and breastfeeding - even for extended periods of time.

Let me say that I have zero problem with these practices.  What I have a problem with is the title that was used for the article:

"ARE YOU MOM ENOUGH?"

Okay, I get that Time was wanting to stir up controversy and sell magazines.  Guess what...it worked, too.  People are astounded and talking and...well...pissed.

Here is what I have an issue with - that any of us isn't "mom enough" simply based on the choices we make in raising our children.

I find that there are very few women who aren't "mom enough".  Sure, I've met a few, but haven't we all?

It doesn't matter if you are bottle-feeding, breastfeeding, baby-wearing, or you put your baby in the swing or Exersaucer...if you do the absolute best that you can for your child, then you are absolutely "mom enough".

As a special needs mom, I really hate the thought that there are those of us out there who aren't "mom enough" because we never breastfed our kids.  Or co-slept.  Or wore them around in a sling.  Or because we went back to work after their births.  I think that special needs moms have their own brand of "mom enough", but so do other moms, too.  We just do it in different ways.

Let's face it...we throw back and forth ideas about what is and is not good for children.  Very few of them are absolutes.  We absolutely know that children need the following:

Food
Shelter
Medical Care
Attention
LOVE

The rest is up for debate.  Will breastfeeding be the difference in your child being accepted to Harvard vs. UGA?  I doubt it.  Will your child's ability to speak 5 languages make them a more caring person?  Likely not.  Does your child's IQ have any absolute bearing on their future success?  No, not a bit.

So, will not co-sleeping turn your child into an unfeeling psychopath?  I'd say that the odds aren't pointing towards it.  If you don't wear your baby, will he/she grow up to lack empathy?  I'd say probably not.  Also, if you do all of these things, will you absolutely avoid having a child who one day has special needs or grows up to be bad person?  No, there is no one way you can absolutely avoid having a child who does no wrong or who has no special needs.

So, if co-sleeping isn't for you, don't do it.  If bottle-feeding is the only way you can get your child to eat, then bottle-feed away, mama!  If you have no choice but to be a working mother, then do it and feel no remorse.  Remember, you have to be happy yourself in order to take care of your kids in the best way possible, so if something feels wrong to you, don't do it (within reason, if putting a seat-belt on your kids feels wrong, then do it anyway).

How do I know?  Because whether you are an attachment parent, a special needs parent, a typical parent, a foster parent, or an adoptive parent, in all likelihood you've engaged in one (or more!) of the following things:

You grew a whole person from nothing but two cells.  Guess what?  Even scientists haven't figured out how to do that one!

If you accomplished the above feat, then you also managed to deliver the same human being.  Believe me, even if you had a c-section, you still had a person removed from your body.  That's not something just anyone can do!

You held a tiny person in your arms and gave that person your whole heart with nothing to gain from doing so (because newborns really don't "reward" you with anything except for the warm fuzzies).  You wouldn't do that for a man, but you willingly do it for your child.

You managed to take that tiny person and help him or her grow further.  Sure, some of us, especially special needs parents, have had some obstacles to overcome in order to help our children develop, but each of you takes a central role in your child's growth and development.  Each step forward our kids take is, in part, because of their mamas.

Even the most passive mom will take up arms for their kids.  Being a mom turns you into a fighter.

You openly wear your heart on your sleeve, forever allowing yourself to be vulnerable to the harshness of the outside world, because everything that impacts your child impacts you.  You don't feel the same connection with the emotions of another person as you do with your children.

Most importantly, whether they can express it or not, you make a difference in the lives of your children.  Sure, Jack can't really express it, but I have no doubt that Jack knows that I am an important person in his life.  He depends on me to feed him, to help him navigate the world, and to be his aide and companion.  He may not be able to say it, but I feel like my impact on his life must not go unnoticed.

So, never fear mamas.  You are most certainly "mom enough".  Don't let anyone - anyone - tell you otherwise.  If you care about and love your children, then I believe you are absolutely, 100% "mom enough".

Tuesday, May 22, 2012

It's Not a Sprint; It's a Marathon

You hear the metaphor all of the time - autism isn't a sprint, it's a marathon.  Indeed, I do believe this to be true.  There are no quick solutions to autism.  You tackle one issue and a new one emerges.  Our kids' needs evolve with time.  We constantly tweak and revise and go to therapy just to keep our kids on the developmental path.

I've decided to take this beyond the metaphor.  You see, I used to have a goal of running a 5K.  I love running.  If my boy and I run this marathon known as autism every day, then I see no reason why I cannot run an actual marathon.

Well, a half-marathon.  Let me do that first before tackling a full 26.2 miles.

Yes, you heard me right.  I've been training for several weeks now to run a half-marathon.  For those of you who don't know just how long that is, I'll tell you.  It's 13.1 miles.  So, that's basically the distance from my house to Jack's therapy clinic and a bit of the way back.

Now, before you say, "You've only been training for a 7 weeks on the half-marathon program?!?", I'll go ahead and share that the half-marathon I'm running isn't over the summer.  It's actually on Thanksgiving Day.

I'm going to earn that buttery turkey and sweet potato casserole, dammit!

Why am I doing it?  Many reasons, really.  One, because I can.  I'm confident that I can.  If you think about all of the work my boy has to do daily to just speak, keep his food down, and hold it together long enough to get through school, then I sure as hell can run 13.1 miles.

Jack is a large part of everything I do.  He inspires me daily to be a better person - to fight harder, to run further, to speak louder, and to do everything in my power for him.  If he can do what he does every day, then I certainly can do what I need to do.

Remember, just over a year ago, I had people from BCW telling me that my son would not speak before he was 3.  They were wrong.  Jack proved them wrong.  He works so hard every day to learn the little things that we all take for granted.  If he can do that at the tender age of 3, then I can do anything.

Two, I'm not happy if I'm not screaming with my hair on fire.  I always have to have something to do.  Setting goals for myself helps me stay sane.  I need to feel like I'm making forward progress.

Three, maybe I can inspire someone else to try to do something that isn't so easy.  The accomplishments are all the more sweet when you do something that isn't easy.  I'm not attempting a half-marathon because I anticipate it to be easy.  Rather, I plan to do a half-marathon because I know it will be hard.

And the thought of that, of accomplishing something difficult, fills me with tremendous pride.  I am certain that I can do it.

This - like autism - isn't a sprint; it's a marathon.  It is going to take time and perseverance.  When Jack was diagnosed, I questioned if I could do this.  I no longer ask myself these questions anymore.  I know I can.  If I need to do it, or if I want to do it, I will.  Nothing can stand in my way.

Monday, May 21, 2012

All Good Things Must End

We all have our vices.  TV has never really been mine.  I much prefer to be running, reading, or writing than watching TV.  Particularly once baseball season ends, my TV watching drops down to practically nothing.  I think it's a good way to live.

There are some TV shows, no matter how much we don't want to admit it, that grow on you.  They become like old friends - reliable, trustworthy, and there for a good laugh or cry.  The best combine a little of both.

One of my favorite shows of all time, House, is ending tonight.  I'm actually quite saddened by the show's seemingly abrupt departure.  As you might can tell by the number of times I quote House in my posts (how's that for delayed echolalia?!?), I'm a bit of a fan.

Here's the thing, with the exception of House and just a couple of other shows, like Downton Abbey, I feel like TV simply isn't worth watching anymore.  I know that reality TV is brutally cheap to produce and, for reasons I cannot understand, seems to attract a large viewing audience.  However, I simply cannot get into them.  I guess I feel like my life is a big enough dose of reality - I watch TV to be enlightened and entertained.

At one point, I was a huge fan of the show ER.  I guess that I always was drawn to medical dramas, but I tended towards ones like ER and House that focused more on the medicine rather than the romantic backstories (and yes, I'm well aware that the whole "Huddy" experience was like that, but I wanted "Huddy" to end just as much as the rest of you).  However, when ER ended, it was awfully anticlimactic, with Dr. Greene's former drug-addict daughter taking her place among new medical students that would be doing their rotations at County.

House promises to be a bit more interesting.  I've wracked my brain over how it might end.  For a while, there were rumors of Thirteen returning towards the end of the season, so I wondered if maybe House helps both Thirteen and Wilson with assisted suicide.  However, after seeing the penultimate episode, I no longer feel that way...and no, I'm not going to spoil it for those of you who have yet to pull it off of your DVRs.

I'm actually planning a bit of a Reinventing Mommy-only "House" party, if you will, for tonight - I'm thinking it won't be complete with Chinese food and Vicotin.  Not actual Vicotin, but cookies decorated like Gregory House's favorite pharmaceutical.  Or some other dessert.  The Chinese food has no bearing to the show, really, but it's just for good measure.

I guess I should get used to it.  I'm not a fan of anything resembling American Idol or Dancing with the Stars, so I should get accustomed to my favorite shows being cancelled.  Just please don't take Parks and Recreation from me...I need many, many more Ron Swanson quips.

So, goodbye House.  I know I'll be able to still see you in syndication on cable, but it won't be the same anticipation.  Thanks for being a show that makes me laugh, cry, and think.

Sunday, May 20, 2012

A Sense of Community

Today I'm over at Hopeful Parents with my monthly post over there, and I'm talking about today's Walk Now for Autism Speaks and the wonderful way in which we come together as a community.  You can check my post out by clicking --> here <--.

That's what it's all about, right?

So, please join me over there and give my piece a look.  For those of you who did participate in the Georgia - or any other - Walk Now for Autism Speaks, I thank you!

Friday, May 18, 2012

The Last Day of School

Summer...here we come!
It was a brief two months, but my baby will today finish his first year of school.

School hasn't been the experience so far that I thought it would be for my little boy.  I don't think that any Mom plans that their child's first school experience will be with special needs preschool.  Seeing my baby at an elementary school - a miniature person amongst a sea of older children - is not what I would have wanted for him by any means; however, he has done it and I am prouder of him than I can even describe.

My boy has had to work so hard to hold it together each day at school.  Some days, he hasn't been able to do it, but others he has.  That, if nothing else, should be considered the triumph of the year.

We have also learned some things from school in the past 8 weeks.  We've learned that Jack loves music therapy.  Now, it's no big secret that Jack likes music (some of his most recent scripting is set to song), but music therapy has become the best part of Jack's week at school.  We'll have to brainstorm as to ways to include music during his summer, because he hates me singing.  He actually growls when I sing.

Second, we learned that, like so many things, it takes Jack a while to transition into a new "activity"...school included.  However, once something, like school, becomes routine, Jack thrives on that routine.  Really, it isn't that we didn't know this to begin with, but it was just confirmed.

Third, we learned that school will be a stressor for Jack.  The social and sensory demands placed on him at school will be something that we will continue to troubleshoot for Jack's entire school career.

Really, I think that this school year helped us know what we need to work on.  There were some shocks and struggles this year, but now we know.  We know and that's half the battle.

The school year isn't technically over for us, either.  Jack will be starting Extended School Year (ESY) in two weeks.  He'll be at a different school with a different teacher and different classmates for three weeks.  Admittedly, I'm a little nervous, because we have just begun to come down off of a behavioral roller-coaster that seemed to be triggered in part by starting school.  I imagine that the change of scenery with ESY will cause a bit of an upheaval in his world.

We'll be doing ESY a little differently than most of the kids will.  Technically, ESY is a full-day program, but Jack will not be going full-day.  He has private therapies in the afternoons, and that is far more important (and valuable, in my opinion) than Jack getting to have lunch and nap time at school.  Hell, I can do that at home...

We'll have ESY for 3 weeks and then a 6 week break before school starts again.  We'll have the summer, which will still be busy with Jack's regular schedule of private therapies, and then we'll be able to start fresh at the beginning of the school year.

Here's to the summer, to relaxation (yeah, right), and to continued progress!

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I think we should all take a moment to thank the wonderful people who care for our children both at school and in community and private clinic settings.  It truly takes a village to raise a special needs child, and there are many people (more than I can count!) that dedicate hours of their time each week just to help my baby have the same opportunities one day as everyone else.  Teachers seem to get the spotlight this time of year, but there really is a whole army of people who help our kids.  It takes a special person to work with special children, and I am truly grateful for each person who works with my angel.



Thursday, May 17, 2012

Special Needs Explained: Sensory Issues

Sensory kids (sort of) explained!
When you think of autism, what is the first thing you think of?  My guess would be the lack of eye contact.  Maybe you would think of hand-flapping.

Would you think of sensory issues?

I think that sensory issues are one of those aspects of parenting a special needs child that parents with typically-developing kids don't seem to understand.  So, in an attempt to educate the public, here's is this mama's explanation of sensory issues.

Big disclaimer here - I'm an engineer and a mama.  Not an occupational therapist.  Not a doctor.  Not a neurologist.  The ideas I express here are my take on it and mine alone.

When you think of sensory processing, you probably think of a very simple scenario.  You hear a noise.  That noise registers in your brain.  Your brain identifies it as a dog barking.  You ignore it, because you've heard dogs bark before.  Easy enough.

Here's another scenario that you might not think about.  You're sitting in a chair right now.  Are you actively noticing the way that your pants feel?  Are you noticing the sound of the air conditioner (if it's at a normal optimal performance level...we're not talking about the sound that your 20-year old HVAC is making)?  Do you notice the feeling of the carpet beneath your feet?  Now that I've said something, you probably are, but you weren't noticing those things before.  That's because your brain knows that those pieces of sensory information, like the feel of the floor and your pants and the sound of the HVAC, are not important.  Don't worry your pretty little head about that, says your brain.

What if you had some neurological differences?  What if your brain couldn't shut those sensations out?  What if you noticed everything all day long?  What if the world was filled with the sounds of ticking clocks and the TV that was left on in the basement?  What if the lighting came in at an extra bright level?  What if you noticed every sound and motion in the world around you?  Just think of the things that your body filters out for you and imagine having them all come in at full blast.

Welcome to the world of sensory processing challenges.

So, when someone sticks a sticker on Jack's hand (horrid, cruel cashiers...), he doesn't notice the pretty picture on the front.  What he notices is the sensation of the stickiness on his hand.  It's intense.  It doesn't stop...and it makes him scream bloody murder.

Did you also know that the senses aren't limited to the five that we typically think of?  There's also a vestibular sense, which deals with our sense of balance and equilibrium.  If you've ever had vertigo, you know what it feels like to have this impaired.

There is also the proprioceptive sense, which deals with ability to tell where your body is in space.  Being a klutz myself, I tend to "lose" sense of where my arms and legs are, thus I trip or, more often than not, bump into things or knock objects on to the floor.

There is also a sense of interoception, which by definition is the sense of the physiological condition of the body.  What exactly does that mean?  It's what makes you aware of being hungry, thirsty, or needing to...um...relieve yourself.  Jack, for example, has never really demonstrated hunger.  Even as a baby, he never has once cried for food.  I remember the pediatrician telling me that I would know that Jack was hungry by his cry.  Well, we have never once heard that cry, even to this day.  Jack's always had to be fed on a schedule, because he'll never demand food.

Kids with sensory processing challenges experience the world differently than the rest of us.  The best way I can think to describe it is this - everything is either too much or not enough.  It's a condition of extremes.  There are things that Jack will run from screaming.  Shaving cream comes to mind.  However, there are other things, like spinning and swinging, that Jack could do for hours.  He'll never be able to get enough movement.  At any given moment, some part of Jack's body is in motion, except when he's sleeping...and the only way that happens is with melatonin.  The same goes for pressure.  Jack loves to be squeezed.  Not cuddled gently, mind you, but squeezed to a point where I get concerned.

So, what is it that makes Jack experience the world so differently?  It's the same reason he's autistic - it's neurological.  Jack's brain is simply wired a little differently.

I think of kids who have sensory issues as being kids of extremes.  Everything is either too much or not enough.  For example, Jack's so tactilely defensive.  Textures are too much.  So is noise and visual stimulus.  He has super-hearing, so things like the ticking of a clock distract him.  He has a hard time walking with me because every sight and sound distracts him.  He has very poor visual regard to tasks because of this.  On the other hand, Jack can't get enough movement.  He can spin to the point where the rest of us would be sick, but he never gets enough.  He could live on a swing.

Why is sensory processing so important?  Well, your ability to stay regulated effects everything else.  Think about trying to work while hearing every tick of the clock, every word said several cubicles down, or every noise from the elevator at the other end of the hall.  You'd be distracted.  You wouldn't be able to concentrate or get anything done.  If the sensations were strong enough, you might feel a fight-or-flight response and panic.

This is what kids like Jack deal with daily.  A big part of Jack's life is trying to avoid situations that he perceives to be bad.  He tries to rigidly control his environment, making everything as predictable as possible.  He restricts his diet.

Now, we're also not talking about "picky" kids.  Sure, plenty of kids are picky eaters or particular about the way things are.  We're talking about issues that impact the lives of not only the kids, but everyone else.

Just to give you an idea, Jack's sensory issues impact our ability to do things as a family.  We don't go out to eat with Jack...ever.  Our lives are closely structured around a schedule that both works for Jack and keeps him calm.  Any deviation for the routine that Jack is used to and expects causes extreme distress...distress to the degree that the world stops.

That's the quick version.  Live in my house for a week for a more comprehensive study on the subject.  What do sensory issues mean to you and your family?

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Stay tuned!  I might be doing more "Special Needs Explained" posts to help the general public understand what the hell we're talking about with a variety of subjects!


Wednesday, May 16, 2012

Run Mama Run

Many of you may be aware that I tend to use running as a bit of mommy therapy.  I love running.  That may make me sound like Forrest Gump just a tad.

I also had a Floortime friend of mine imply that running is a form of joint compression, so maybe it helps organize me.  Sensory seeking...me?  I guess we know where Jack gets it from.

I've been trying to get a group of special needs mamas (or friends of special needs mamas!) together to go running on Saturday mornings.  I've found a few issues with this, though.  One, I'm a morning person, so I go running at about 6:45 AM.  Also, for those of you who don't know me personally, I live in the South, so running past about 10 AM is just asking for heat stroke.

So many people have said to me, "I'm not a runner."  Well, yes, you are.  Your body is designed for you to be able to run.  I promise that if you are healthy enough to be able to start an exercise program, you can be a runner.  You won't be running a 5K in just a day or two, but you can gradually work into it.

Compared to other forms of exercise, running is fairly cheap.  There is no equipment to buy.  You just step outside of your front door and go.

Maybe you want to start, but don't really know how, or you just think you can't.  Here are my tips for starting a running program from scratch:

1.  First and foremost, be realistic in your expectations.  I know Brian tends to do this - he'll run for a day or so at a pace and distance that is really too advanced for someone starting over, but he'll get burned out and quit.  Don't expect that you'll run like a champion in just a day or so.  Give it time.  Work into a program.  Which brings me to...

2.  Find a good program.  Personally, I really like Couch-to-5K programs because they ease you into running and you can just download them on to your iPod or iPhone.  I'm currently doing a half-marathon training program on my iPhone and I love it.  It runs in the background and tells you when to walk or run.

3.  Make sure you wear good running shoes.  It should go without saying that uncomfortable shoes will make you uncomfortable.  If you aren't sure, go get fitted at a running store or a sporting goods store.

4.  Speaking of iPhones, I couldn't run without one.  Get yourself some kind of music player that you can use while running.  I have an armband for mine and some specially designed running headphones.  I find running, or exercise in general, to be so much easier when I have music playing.

5.  Track your progress.  I use another iPhone app, Nike+ GPS, to track my mileage, running routes, calories burned, pace, etc.  I think that helps me get the most out of my run.  For example, if I feel really crappy after a run and see that I ran at a pace that was a minute faster than my normal pace, maybe I'll slow it down next time.

6.  Eat/drink something before and after.  This may sound obvious, but don't go running without something in your system.  Don't down a cheeseburger before you go, but eat a small snack (I love Luna nutrition bars) about 30 minutes before.  Make sure that you're hydrated when you start, too.  If you're going to do a long distance run, then consider getting a hydration belt or something you can store some fluid in.  Once you're done, drink something to rehydrate you (I like Propel...it has only 5 calories).  I also drink something with protein to help repair muscle damage.  I don't bother with expensive drinks; I just make a small glass of chocolate milk.

7.  Go early.  I am out running either immediately after I take Jack to school or by 7:00 AM most mornings.  Especially where I live in the South, you will roast if you're running at 10:00 AM.

8.  Dress appropriately.  Someone once told me that you should dress for weather 15-20 degrees hotter than the actual air temperature when you go run.  Why?  Because your body will heat up that much once you get going.

9.  Find a good stretching routine and actually do it.  I can't emphasize the importance of this one.  I occasionally tweak my stretching routine to try to address a specific muscle that I feel like I'm missing, but the days when I slack off stretching I can feel it.  Taking the time to stretch appropriately will save you a lot of pain and soreness.

10.  Don't run everyday.  I don't.  I run just about every other day.  There is always one day a week where I don't work out.  I let my body recover on that day.  I alternate running with cross-training (usually 40 minutes on the stationary bike) throughout the week.  Saturdays are the days that I do a long run.  Sundays I typically rest.

11.  (Because I couldn't seem to make it in only 10 tips...) Run outside.  Trust me, running outside is more fun than on a treadmill.  I have a treadmill, but I only use it as a last resort, as in that there is thunder/lightning/some other act of God occurring.  I'll even run in the rain.  I far prefer running in the neighborhood or local park.  When I lived downtown (I live in a big metropolitan area and have been living in suburbia quite reluctantly for years), I loved running in an urban environment.  That was one of my favorite places to run.  There's just so much to see and it keeps you entertained.

That's Reinventing Mommy's crash course on running.  I really love it, but obviously it's not for everyone, just like that crazy pole-dancing workout clearly isn't for me.

Special needs mamas out there, find a friend or two and hit the pavement!  I promise, there is nothing more invigorating and stress-relieving than getting out and doing something for YOU!

Tuesday, May 15, 2012

Ruling It Out

There are never any simple answers with our kids, are there?

Jack has had some pretty abrupt behavioral changes recently.  They've left me scratching my head, wondering if it's sensory, transitions, the overall changes, or something else that I'm not even imagining yet.

It could be all of the above, too.

So, I decided that I should probably talk to Jack's regular pediatrician about it.  I called Dr. Ped and asked to speak to her directly.  I was planning to call her anyway about Jack using the bathroom so frequently (that's another story for another day), so it seemed like a good point to mention Jack's behavioral issues, too.  If having a special needs child, especially one that your pediatrician's office missed, gets you anything it will get you a phone call back from an actual doctor, not a triage nurse.  I mentioned that Jack had been really struggling for about a month, and we tossed around some ideas, but finally decided that Jack should be seen to just rule out anything obvious.

Easy right?  Wrong.  The regular ped's office is hit or miss for Jack.  Usually, the waiting room isn't the issue.  I always bring Jack's iPad and he seems content with that.  It's the poking and prodding that Jack can't stand.

First, they always pull out those ear thermometers, which drives Jack absolutely up the wall.  If there is one thing that Jack hates, it is anything going in his ears.  Audiologists and doctors alike have been witness to this phenomenon.  You would think that he was missing an arm from the screams coming him. They always do this first, and I always mean to tell them to take his temperature last because he won't comply with anything else once he is so upset like that.  I'm going to send myself an email reminder next time.

Getting him to get on a scale is tons of fun at this point.  Unfortunately, he has outgrown the baby scale that he can sit in, so he has to stand on the big scale.  I always dread this part because of how Jack's low weight has always been an issue.

Today he was down to 29 lbs., which is down from 30 lbs. just over a month ago.

Usually, Jack's better once we're in an exam room.  Today, he kept engrossed in his iPad, not acknowledging the doctor, until it was time for her to actually examine him.  Now, medical exams are extremely difficult for Jack.  The instruments, the touching, and the surroundings all seem to bother him greatly.  The worst part is, of course, when the doctor wants to examine Jack's ears.  For reasons not completely known to us, Jack goes absolutely berserk when someone touches his ears.

What did we find out?  Well, nothing.  Yep, it was yet another doctor's appointment that resulted in no answers.  Not unlike the endoscopy/pH study that we did a year ago, we walked away with no more than what we arrived with.

The only insight Dr. Ped had was that she saw a very, very miniscule amount of fluid in one of his ears.  It was so miniscule in fact that it was causing no redness and was almost missed by her during the examination.  She said that this level of fluid was so slight that she couldn't even call it an ear infection. It could have been residual from the previous night's bath.  So, we left with an appointment a month out to do a recheck and see how Jack was doing behaviorally.  At that point, if there were still more questions than answers, we'd be referred to a specialist.

Being a special needs mama, I've kind of gotten used to having no answers.  Take Jack's GI tract, for example.  The kid has a funky GI system, as he vomits frequently and battles constipation constantly.  However, every test - every last one - that has been run on his GI system yields no results.  He simply has a weird digestive system, but there is no medical explanation for it.  From what I hear, most parents of kids on the spectrum report similar findings from their kids' GI testing.

As an aside, Jack's week steadily improved, so much so that one of his speech therapists commented that "it felt like the old Jack was back."  Of course, that was before Jack had a rough OT session the next day and gave his other speech therapist a little hit during feeding.  He did have a good PT session to round out the week, and he didn't see his special instructor, which probably made him happy to have a day off.

I guess it's good to rule out medical issues before trying to crack down on some of the behavioral issues, though.  The screaming and crying just wears me down.  Hopefully, once school is out, we can return our focus to some aspects of Jack's Floortime program and get over this hump.

Either that or we'll be counting down the days until school starts again.

Monday, May 14, 2012

A Fine Lady

Yesterday was Mother's Day.  It was, as many Mother's Days go, a day much like any other.  After all, autism doesn't take a break for holidays.  We spent the Sunday as we normally do, adhering to Jack's schedule and trying to keep things just so for him.

I did have a fantastic steak and sweet potato dinner, followed by a lovely slice of Reese's pie.  Be still, my heart.  I'm a simple gal - steak, potatoes, and peanut butter is all you need to produce to make me happy.

I thought that this year, I might take a different angle on my Mother's Day post.  I want to introduce you to whom I consider to be one of the greatest women on the planet - my grandmother.

Some of my warmest memories of childhood are set in the hallways of her home, in the comfort of her kitchen, and the labyrinth of rooms that was her basement.  When I close my eyes and think of Grandmother, I'm reminded of biscuits fresh from the oven - so flaky and tender that they became intwined in my definition of weekend breakfasts.  Holidays were not complete without her cornbread dressing, the taste of which I still crave with ravenous abandon every November.

My grandmother is what I consider to be the epitome of a true Southern lady.  She has a slight drawl to her voice that seems to bring dignity to her words.  Her slight stature in no way diminishes her resolve or fight.  I stand a good 7 - 8 inches taller than her, but there is no question that in her presence you say your "Yes, Ma'ams" and "No, Ma'ams" and yield to the matriarch.  Like many gals of the old South, she can be a firecracker.  She is quintessentially traditional, but knows how to present herself, her home, and her family to perfection.

What I appreciate more now than ever is her wisdom and willingness to open her heart and her home to me whenever I needed it.  Even now, going to her house is like coming home again.  It is one of the few times in my life of more than three decades that someone takes care of me.  Upon every visit, she asks me what I want to eat.  She prepares my favorites, like salmon patties with country gravy and her decadent biscuits.  She makes sure that I get enough to eat and that my meal is hot when I eat.  She makes sure that I am taken care of, even if only for a short while.

There have been some points in my life when I really needed someone, and my grandmother has always been there to step in as a surrogate mother to me.  More than anything else, when I told her that Jack had autism, she did not take it as I expected.  Instead of acting confused, she and my grandfather dove head-first into reading about autism.  She adores Jack for who he is and celebrates his triumphs right along side of me.  For a woman of her age, she "gets" it...and other special needs mamas will tell you that is pretty rare.  At their age, they did not need one more child, but their home has always been open to me.  They have always treated Jack like a golden great-grandchild, regardless of his challenges.  They advocate for him and educate others their age about autism.  Think about that...how many 70-80 year olds advocate for their autistic great-grandchildren?  That is a rarity, and one for which I feel so fortunate to be granted.

I sometimes wonder if my Grandmother knows how truly grateful I am for the way that she and Grandaddy stepped in to help take care of me over the years.  They have encouraged me when no one else would.  They have been willing to stand shoulder-to-shoulder with me against the injustices of the world.  They have been to simply give me a place to rest my weary head when I needed shelter.

My Grandmother may be small, but she can lift the weight of the world on her shoulders.

Happy Mother's Day, Grandmother.  I love you more than I can even express in words.  You are a fine lady and it is a privilege of mine to be your granddaughter.

Sunday, May 13, 2012

Just Keep Swimming

Yes, I know it's Mother's Day, but my featured post today has nothing to do with Moms.  I had no idea I was getting published on Mother's Day, or else I might have thought of something more Mom-related to say...

Today I'm over at the SPD Blogger Network again (I love the folks over there!), and we're talking about a very relevant topic as the summer rapidly approaches - swimming.  Check it out --> here <-- and share your two-cents on how you help your little ones navigate the water and all that goes along with it, like other kids!

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While I'm at it...Happy Mother's Day to all the mamas out there.  Whether or not your kids have special needs, being a mom is the toughest job on earth, but without a doubt the most important.

Friday, May 11, 2012

Letting Go

She sees a dandelion in the yard.  Automatically, she plucks it and gently blows to release the seeds to the wind.  They float beautifully on the breeze.  In her joy, she looks around to see that the yard that she once thought to be occupied with dandelions now has a carpet of every other kind of plant.  The seeds continue to float away, so she grasps for them, trying to hold on to some resemblance of what was once the home she imagined.  However, each tiny seed slips through her fingers, catching the wind and soaring out of sight.

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Parenthood - be it for a special needs child or a typically-developing one - is a time of dreams.  We cannot help it; we simply try to control the uncertainty of life with goals and aspirations.  Our children are certainly subject to those whims.

All children will follow their own path.  A father may wish for his son to follow in his footsteps and join the legal profession, but that same child might aspire to be a musician.  The mother who wants her daughter to wear her wedding dress may raise a little girl into a woman who never wants to marry.

Our lives work this way.  The people we love turn out to be someone else entirely.  The happily married couple, the one that showed no outward signs of discontent, gets a divorce.  A young adult gets a degree in a chosen field only to not be able to find work in that profession, thus detouring into another.

I can say with certainty that life takes detours.  I had a successful career as a quality engineer with aspirations for advancement.  I had the baby boy I always dreamed would be my first child.  I thought that another would follow just a couple of years after the birth of the first.

Life is full of evolution.

I think that there is a point for each special needs parent when you learn to let go of the conventional definition of "normal".  You may try to hold on for a while, like grasping for the seeds of a dandelion in the breeze, but you come up short.  The dandelion - the "normal" life - is gone.  Instead, you either cling to the empty shell of the flower, the stem, or you search for new flowers.

You might find that the tulip fits better.  Maybe it's the rose.  Either way, there is a flower - a dream - that is a better fit for your new existence.  You decide that maybe those dandelions weren't that great after all.  Instead, you add a whole mosaic of color to your bouquet.

You make it beautiful.

That's why I do what I do.  I write and I run and I take pictures and I spread awareness and I sing Jack's praises whenever I can, because I have to make this a place that is not only worth occupying, but a place where I feel at home.

It's not that you don't continue to fight for your child, but you have to make that dark place an oasis of light.

We all do it in our own time.  Admittedly, some are never able to release those dreams, constantly chasing some resemblance of the child they so dearly wanted.  In the meantime, they miss the beauty that surrounds them.  It's not that the problems are masked - they aren't - but in the fight they miss the wonderful things.

So, be not afraid to let go of the child that you once imagined and embrace the one that you have.  You may find that the child you have is far more precious than the dream-like image you formed in your mind.


Thursday, May 10, 2012

Taming Fear

I've been attempting to get a group of special needs moms (or friends of special needs moms!) to go running or walking early on Saturday mornings.  Granted, I'm a morning person, so the crispness of the early morning light calls to me.

Our first week of running, I realized that I might have made a blunder in not telling anyone what I looked like.  After all, if you don't know who I am, you might not realize I'm...well...me.  I don't have "autism mom" tattooed on my forehead.  Though, I've always wanted to get a tattoo on my foot, somewhere inconspicuous, something like the word "hope", but that's a story (and a fight) for another day...

After about 10 minutes of waiting with no one showing up, I decided to go ahead and run.  There is a caveat to this, though...I have a slight fear of being in the woods alone.

The year that I got pregnant with Jack, a friend of mine was murdered while hiking alone.  It was a very surreal experience for me that became reality at her funeral.  The thought that we were young, carefree, and invincible was suddenly shattered.  My own sense of personal security was shaken that day as I had to confront that fact that I am mortal, just like everyone else.  A friend of mine shouldn't have been killed.  Things like that didn't happen to me, until they suddenly did.

Her passing was actually a big motivator to have Jack.  Realizing that life is short can cause you to reevaluate your current situation and make choices.  We decided to have a baby, because we were getting older and there was no reason to wait any longer, other than our own selfish tendencies.  Ultimately, it seemed that the things we do and accumulate in life - our houses, our careers, and our possessions - meant relatively little without the impact you leave in your wake.  Having meaning in the life of another is what we can truly use to measure our lives.

So, here I am, Saturday morning, with 1.5 miles of wooded trails ahead of me.  Do I simply drive home and run in the neighborhood or on the treadmill, or do I face my fear?

I decided that I can't let the ghosts of my past continue to haunt me.  I put one foot in front of the other, and began to run.  With each step into the shaded darkness, I felt a bit more confident.  I made it this far.  I can go farther.

I kept running.  I ran a full 3.5 miles.  I actually didn't realize that I had run that far.  Conquering that fear, letting go of what was a very painful experience in my life, was liberating.

I'll probably always be a bit more cautious than most when walking in the woods, but it felt good to release that anxiety.  No longer would I allow myself to remain prisoner to a fear.

In that brief run, I was free.

Wednesday, May 9, 2012

Boys of Summer

There is a period of time each year in which the eyes of all in the Reinventing house, with the exception of Jack, go aglow with a fever.  My husband actually counts down the days leading up to it.  Late March and early April becomes a fury of great anticipation and dreams for the coming months.

I'm referring, of course, to the dawning of baseball season.

The Reinventing house is a home of baseball fanatics.  Brian grew up in a baseball family.  His dad still works with the local youth baseball program.  It was basically assumed when Jack was born that his name was already on a t-ball roster for the 2015 season.  Autism changed some of that, but Jack will still get a chance to try baseball in some capacity.

We are baseball fans, but our team is America's Team - the Atlanta Braves (if you remember TBS from several years ago, think Skip Caray and Pete Van Wieren days).  Every year prior to Jack's birth, we would be at Turner Field several times a year.  We never missed an Opening Day.

Jack changed that a bit.  Brian gets to go every once in a while, but I haven't been to a full baseball game since before Jack was born.

We tried taking Jack a couple of times when he was an infant.  It was a good time.  You see, Jack, being so ridiculously cute and all, is a magnet for landing on the Jumbotron.  Of course, the time they decided to capture footage of him happened to be immediately following him vomiting all over me.  He looked cute as can be for the camera, but the lady holding him - me - had throw up all over her shirt and hair.

Don't worry, that's not my first embarrassing incident with the Jumbotron.  There was one game before I got pregnant with Jack in which Brian and I wound up on the "Kiss Cam".  Well, the sight of myself on the Jumbotron was enough to send a look of sheer horror and disgust across my face.  I froze and absolutely refused to kiss Brian.  So, he recovered and kissed me, which probably had some fans thinking that I was being assaulted by a stranger.

What was even more fun was that I was not the only person from my office at that game.  Oh no...I wasn't going to get off that easy.  The next morning, my inbox was full of taunts from co-workers...so many, in fact, that I'm thinking the blip may have ended up on TV.

That was my 15 minutes of fame.  Being horrified at the thought of kissing my husband.

Public displays of affection and embarrassment aside, I haven't been to a game in a very, very long time...and it's time for that to change.

Prior to this past year, I didn't want to leave Jack over dinner because he's so hard to feed, and he'll just throw up.  Well, this year, I'm just going to have to take that chance.  I love my little boy, but I really need to see a game in person again.

I need to eat a real hot dog.  I need to yell obscenities under my breath at the other team.  I need to drink a beer (or two) like a regular human being.  I need to get all fanatical.  I need to punch my husband in the shoulder for staring a little too much at "the Braves' honeys" (really called the Tomahawk Squad, I think), as he calls them.

It's all part of the experience.  Yelling obscenities at my TV just isn't quite as satisfying.

So, I'm going to make it happen.  Seriously.

And...this is our year!  Go Braves!

Tuesday, May 8, 2012

Easy Like Sunday Morning

To see such beauty in bubbles caught
by the breeze...
Today, I'm over at The Oxygen Mask Project again, and we're talking about creating your own summer oasis in your backyard.  So, pull up a lawn chair and a frozen beverage (make mine a banana daiquiri), and bask in the glow of the sunshine.

You can see my post at The Oxygen Mask Project here.  I absolutely love what they do over there, and I love the message of taking care of yourself.  Enjoy!

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As always, it is my readers that help me get these kinds of opportunities.  Please spread the word and, if you like what you read, like Reinventing Mommy on Facebook by clicking here!

Monday, May 7, 2012

Sensory Issues and the School System

Happy Monday, my friends!

I'm hanging out over at the SPD Blogger Network today.  With the end of the school year, and IEP season, winding down, we're talking about something relevant to so many of us - how to get the school system to address your child's sensory issues.

Go --> here <-- to check my post out over at the SPD Blogger Network.

So please come join us over there and put your 2-cents in to the discussion!  And please share this so that we can get as many ideas as we can to address a problem that so many of us face.

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If you haven't checked out the SPD Blogger Network on Facebook, please do so here!  You'll find me hanging out over there occasionally!

Also, to read more of my antics and ramblings, follow Reinventing Mommy on Facebook here!

Friday, May 4, 2012

Life Lessons Learned From Reading "The Hunger Games"

I should have paid attention during archery
lessons at Girl Scout camp.
*Spoiler Alert!!!  If you haven't read The Hunger Games books, still want to read them, and don't want to know anything about them first, then do NOT read this post!  Just don't do it!*

I have been hearing from everyone - everyone - that I should read The Hunger Games trilogy.  My husband, who has admittedly never read any of the books, compared it to The Running Man minus Arnold Schwartzenegger.

With very few exceptions, I'll read just about anything, so off I went.  I read them.

And I was disappointed.

I'll admit that the first in the series, The Hunger Games, was the best of the three.  However, from there, the other two books, Catching Fire and Mockingjay, seemed like The Hunger Games all over again.  In fact, Catching Fire was The Hunger Games all over again.

Now I don't mean to sound like a psychopath, because goodness knows I'm not (at least, I'm fairly confident that I'm not), but other than the problematic nature of kids killing kids, I'm not sure what the fuss was about in terms of the violence.  Sure, some of it was actually described in the books, but for the most part it seemed like you heard a scream and that was it.  I heard so many complaints, mainly from parents' groups that probably never bothered to actually read the book, about it's ultra-violent nature, but I really didn't get that impression at all.

Jurassic Park was far more graphic in that department.

Now, even I've gotta admit that they seem
awfully similar...minus Aaahh-nold...
By the end, I really wanted to metaphorically punch Katniss in the head.  I get that she's had a rough life.  She's been sent into a game show to fight for her life - twice - and her Dad died.  However, she also toys with the emotions of not one, but two men.  Honestly, I've never understood women who do that.  You know, pick one and be happy!  You've got one guy who could design a wedding cake that could make Duff Goldman jealous and another who can take down a buffalo with a trip-wire and a bow and arrow.

What more did you want, missy?

And not knowing that Gale was in love with you, Katniss?  Seriously?  I've said it before and I'll say it again, boys are almost NEVER best friends with a girl unless they are in love with them.  Brian has confirmed this phenomenon for me.

I also wanted to punch both Peeta and Gale in the head, too.  Stupid boys.  You know this woman is, for lack of a better word, emotionally damaged!  Why beat yourselves up over her?  From the way they describe Gale in the books, he clearly could get another woman.  Now, given that Peeta's skill is cake-decorating, he might have more trouble (though, if he can bake cakes that taste good, then we'll talk, but I could care less what they look like - I have an unnatural attachment to pastry).

That being said, I learn a little something from every book that I read, so here are 5 lessons that I "learned" from The Hunger Games:
  1. Playing with the emotions of boys gets you things.  Every time Katniss kisses Peeta in the arena, she gets food!  It's the ultimate ABA program!  Give a kiss, get a reinforcer.  No emotion needed really, just give the kiss and get the food.  Or medicine.  In reality, though, what girl doesn't already know this?
  2. Squirrel makes a fine meal.  So does opossum.  Or rat.  Or any other kind of game that would normally make me dry heave.  Apparently, you can make a stew out of anything.  I'll surely remember this if I ever decide to host a "Survivalist Gourmet" cooking show.  Just don't eat the berries.
  3. Stinging insects are BAD.  You'd think that I know this already.  Every sting I get earns me the negative reinforcer of a trip to the doctor or hospital to get a shot in the ass.  However, in the arena, the tracker jackers will make you dissolve if you get stung.  That's bad.  Avoid stinging inseects.
  4. You should pay more attention at Girl Scout Camp.  Archery clearly can get you out of some sticky situations.  I should have actually tried to learn this skill at camp!  Maybe one day I'll need to shoot down a nest of mutant yellow jackets with my trusty bow and arrow?  Well, I hope I never have this need, because I'll be screwed.
  5. Beauty is in the eye of the beholder.  We're reminded over and over again in The Hunger Games trilogy that the people who live in the Capitol look like characters from Rainbow Brite or Strawberry Shortcake.  However, they think that the people in the Districts, who look like, well, "normal" people, look horrid.  You say tomato, I say to-mah-to.
So, I'm sorry to disappoint everyone that spoke so highly of the series, but it wasn't for me.  I'll still have to watch the movie, obviously, because morbid curiosity is driving me to see how this all plays out on the big screen.

I also get the feeling that this is a slightly less fanatical version of the Twilight series.  And yet, I couldn't help but read those books and watch those movies, too.

What do you think?  Love The Hunger Games or not so much?


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Stay tuned on Monday when I'll be featured over at the SPD Blogger Network again!  Thank you all for helping me get noticed!

Thursday, May 3, 2012

First-World Problems

My idea of a first-world problem.
Sometimes, you've just got to turn your bigger problems (my kid screaming uncontrollably through dinner and bath time) into a first-world problem (like which flavor of ice cream I'll consume an unnatural amount of tonight - coffee or cookies and cream). 

I much prefer dealing with the first-world problems.



~ my personal Facebook status on April 25, 2012


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In the midst of Jack's lovely behavioral/sensory/going apeshit at the slightest thing month, I've had to make myself a little numb to it all.  For my sake.  I don't mean to sound cruel, because I care deeply about my baby, but there are times when mama has to step back from it because it hurts my heart too much.  I have to don my headphones and crank up Pearl Jam in hopes that I can drown out the sound of my baby's screams at therapy.  Or, I have to just shut my eyes and try to draw my focus away from the beating of his fists on my arms.  Or, I have to look away and try to go to a place in which I will my eyes to not shed their tears.


I also find myself caring tremendously about the little things.  I'll call them my "first-world problems".


For example, I left Brian at home with Jack and I ran up to Publix for a couple of things.  Now, what should have been just a quick, routine trip to Publix turned into a greater than 5 minute stand-in amongst the frozen foods as I struggled to make a decision on an ice cream flavor.  After all, ice cream is a serious decision, and one at which I cannot fail.


Why do I feel like that?  Like the whole of the planet suddenly teeters on my decision regarding ice cream?


I also found myself stressing over my choice of workout music.  After all, once I start running, I don't want to stop to adjust my playlist, so my choice is critical.  It's critical, people!


But why?


Maybe, just maybe, it's because I long for a decision that is so menial that I treat it as if it's life-or-death.  Or, maybe it's because so many of the decisions I make daily with regards to Jack seem so critical that I extend that same level of tension to every decision I make.


Or maybe it's that I'm overanalyzing this whole thing.  I could also just be slightly neurotic.


Here are some other first-world problems that have been plaguing me lately:



  • Which wine should I drink tonight - Reisling or Moscato?  One is sweeter than the other, does that make a difference?
  • My neighbors aren't cutting their grass.  Also, my neighbors across the street are starting to resemble hoarders and it's making me twitch when I see them using their garage as an extra storage room.  It's also disturbing when that same neighbor irons his clothes in his garage wearing only a bathrobe.
  • I find it a chore to finish reading Mockingjay.  The series seems to have gotten worse as it progresses.
  • The mouse button on my laptop keeps sticking.  It makes a funny clicking sound.  It doesn't affect the functionality, but it simply pisses me off.
  • My favorite Chinese food restaurant isn't properly sealing their pot-stickers, leaving the dumplings open to precariously losing their contents.  How to deal with this and avoid having my General Tso's Chicken replaced with something less than desirable.

In a way, sometimes it's nice to focus on the first-world problems, because they take your mind off of the decisions that really count, like how to get a handle on Jack's behavioral issues.

What are your first-world problems?