My baby’s all grows up

Once upon a time there was a little boy… (click there <– to watch him – there’s no audio)

Jacob started 7th grade yesterday. I remember when I started 7th grade. I remember the boys in 7th grade. I remember why I dreaded the day when Jacob would be in 7th grade.

Fortunately, Jacob isn’t like many of the boys I went to school with. Not that they were mean or bad. But many of them were too cool – or at least they thought they were, and I have to confess, so did I. Jacob is cool, but not in a cocky sort of way.

The cool boys in my school were good at blending – meaning they all sort of looked alike, acted alike. Of course, maybe that had something to do with the fact that they were all wearing the same Catholic school uniform – dirty gray slacks (not pants), and a pure white shirt.

I don’t think the gray and white were chosen by accident either. I believe that the powers that be were sending a pretty clear message to the boys – from the waist down = dirty parts sure to secure you a seat next to Satan on the Eternity train – from the waist up = the seat of all that is pure and holy. Our skirts were plaid, not sure what that meant – maybe all the lines represented an intricate network of boxes to remind us to keep it all locked up.

Anyway, as I was saying, Jacob is not a blender. Never has been. There have been days when I’ve wanted nothing more than to have him blend because his Tourette’s made him stick out, but, in reality, I’m grateful that my boy hasn’t fallen victim to the Smoothie Syndrome.

I’ll be interested to see how being nearly 13, nearly hairy, nearly deep-voiced will change Jacob. But I don’t think I’ll really see any negative changes. Jacob’s just different.

He’s a yes ma’aming, door opening, follow the rules kinda guy. He’s a give the homeless guy his money, thank the soldiers for protecting our country (every single one he sees), say a prayer for passing ambulances kinda guy.

And no matter the changes that take place, he’ll always be my kinda guy.

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All yell’s breaking loose

photo credit: showmeone

Three weeks left.  Three weeks left and I feel like I am going to spontaneously combust.  Our two story house has collapsed in on itself like a black hole, sucking all the light out of my world.  Dramatic?  Maybe.  True?  Yeppers.

I’ve spent the last two months trying to entertain a 12 year old, and a 4 year old 12 year old wanna be.  Troubles abound…daily.  Maybe even minute-ly.  Is that a word?

If I wake up to hear what do you have planned today one more time, I will implode.  I’m not sure when my name became Little Miss Day Planner, apparently that memo got colored on, or made into a paper airplane because it sure as heck didn’t find it’s way next to my morning cup of coffee or my evening glass of sanity.

There’s the pool, but when it’s 105 degrees outside and the pool feels more like a bath without bubbles, it looses it’s appeal.  I enjoy solitary, not communal bath times.  Pretty much everything else costs money – and if it’s truly “fun” it costs lots of money.

When I was a kid – oh God, did I really just say that?  When I was a kid no one entertained me.  That’s not to say my parents didn’t do things with me, but they weren’t responsible for my daily agenda.  Mostly I rode my bike and did a bit of hairbrush singing in between.

Today I reached the end of my rope – it was a jump rope so it wasn’t very long to begin with but it was a rope nonetheless.  (Okay, it’s been frayed for a long time, but that’s another post.)  Anyway, Jacob and Nick both had my remote and kept pushing all the buttons.  Nick is easier to deal with – he’s only four.  Jacob, on the other hand, won’t let up.

As a result I found myself raising my voice – something I swore I would never do.  And now I feel horrible.

I think summer has had it’s last hurrah in our house.  I think we are too together – it’s time for a break and not the summer kind.  I never thought I’d be one of “those” parents who looked forward to school.  After all, I used to homeschool Jacob.  But this summer, I’m ready for it to be over.

Today kids seem to need more.  At least mine do.  Maybe that’s my own fault.  I’m not sure.  But I do know that right now I’m thinking “the most wonderful time of the year” comes way before Christmas.

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Blast from the past – October 2008 – Baby Brian

photo credit: Maryalena

Brian Denehey all grows up

Many years ago when Jacob was just a toddler I decided that there was no inherent difference between boys and girls. I was a first time mom who felt very certain about my knowledge on this matter.

So like any mother who wants her child to be able to have as many play experiences as possible I did what any mother would do and bought Jacob a doll. Somehow I convinced Warner that a doll was something that boys and girls were equally interested in if given the chance. And playing with a doll would certainly give Jacob an advantage in the future father category.

I went to Toys R Us in search of the perfect doll for our sensitive new age boy, who would prove that boys and girls are the same it’s society that pushes the gender stereotypes on them. I found a newborn size male doll with a seriously pinched face and adopted him into our gender-liberated family.

I was very excited about presenting Jacob with his new toy. He, too, seemed to be very intrigued by this non-wheeled play thing.

I opened it and was instantly struck by the strong perfumed odor that clung to its realistic chub folds. As I handed it to Jacob I was fully prepared to see his paternal instincts take over as he cradled the infant in loving arms.

What I saw instead was something no mother ever wishes to see her child take part in – a small-footed toddler performing a pretty hearty bug-stomping maneuver on the unsuspecting infant. I stood there in horror while my husband was nearly doubled over in laughter with his I-told-you-so smirk proudly displayed.

I wondered if the sickly sweet stench of roses might have curbed Jacob’s coddling instincts. At any rate, I knew at that very moment that there was a pretty good chance that Jacob would be an only child.

Okay, so maybe there are innate differences between boys and girls.

Or maybe it was just the fact that this baby bore a frightening resemblance to Brian Denehey. That would be enough to throw off even the most maternal of us all.

Nothing against Mr. Denehey.  But that’s a lot of look for a small face.

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Five Things Friday – Great things my kids have said

My witty kids

My kids are never at a loss for words.  Never.  No idea where they get that from.

Anyway, I thought I would share some of their words with you all today.

Jacob having a Beatles kind of day

Jacob

1.    age 6 – “Why did the people crucify Jesus?”  I told him and explained that Jesus rose from the dead three days later and went to heaven.  Jacob’s reply:  Boy it sure does take a long time to get to heaven!

2.    age 7 -  Eating macaroni and cheese at Shoney’s one day: Take a fork and enjoy the taste bud ride!

3.  age 7 – A frequent party of one, one day Jacob was having a solo conversation in the backseat.  We were the only two people in the car.  Here is what I overheard: Don’t make out with my momma.  She’s already made!

4.   age 9 – Speaking to me: You can be an aggressive mean young woman sometimes.  And don’t go running away like you did yesterday.  Sing a different song.

5.   age 8 – I wish Nick would just go to sleep because he’s so cute I don’t want to do anything else. He couldn’t stop looking at Nick.

Nick having a special moment at BK

Nick

1.   age 3:  Said to me:  I’m watchin’ you hothead!

2.   age 3.5:  On the way down the stairs Nick looked back at me and said: Don’t look at me SUCKA!

3.   age 3.5:  When I was trying to get Nick down for a nap he was being too wiggly.  I told him to be still and he said: I’m just trying to get separated!

4.   age 3.5:  As he was rolling the dice during a board game he gave us his take on “baby needs a new pair of shoes”: C’mon I need a new pair of short sleeve pants and shower pants!

5.   age 3:  This was Nick’s evening prayer one night: I pray the lamp to my heart.  I see the bats in the moon.  Amen.

And there you have it – the wit and wisdom of my two boys!

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My Life in Letters – “T” is for Tourette, Tic and Twitch

Jacob and one of his amazing counselors Rhett

I just got back from picking my oldest up from summer camp.  It was exactly what you would expect from a summer camp – swimming, archery, fishing, arts and crafts, s’mores and campfires mixed with the noise of a hundred plus excited kids.  Some of the noise, however, might surprise some people – grunting, snorting, barking, screaming the sound of a hundred plus kids who have Tourette Syndrome (TS).

Jacob and his counselor Ayan

For these kids Camp Twitch and Shout represents so much more than a chance to  experience a parent-free week surrounded by new friends and plenty of fun.  Camp Twitch and Shout is a refuge for many of them, maybe the only time during the whole year when they can tic without having people judge them.  And for the parents who entrust their children to the camp counselors for 5 days with absolutely no contact, Camp Twitch and Shout is perhaps the only time when they can rest easy knowing their children are not being bullied or made fun of.

Landon, Jacob and David

During the closing ceremonies on Friday I sat back and watched these kids in amazement. One child was pounding his fists into his thighs as hard as he could.  One little girl let out a shrill scream to rival that of any horror flick.  Each one of them struggles on a daily basis to have some control over the tics that have taken over their bodies.  And yet I saw nothing but strength in every one of them.

One of the counselors took the stage and spoke to the crowd.  “I just wanted to say that this is a camp for kids with superpowers.”  At that very moment one of the younger girls screamed.  “See,” he continued, “there’s one now.”  Another camper ticced.  “And there’s another and another over there.”

And I couldn’t agree more.  Are these kids different?  Absolutely.  And although to many the differences to be seen are only the obvious ones, the ticcing ones, to me and to every other parent of a child with TS, the differences go far deeper than that and only serve to validate what we have always known in our hearts, our kids are superheroes.

Our kids are different because they get it.  They live with adversity, so they will seek to banish it in the lives of others.  They stand out wherever they go and it’s not because they have TS, it’s because they are accepting of others who are different.  They are compassionate and tolerant and seek justice for all regardless of what their challenges might be.  They are fearless and truly extraordinary.

How lucky are we as parents to be raising  a new breed of superheros who are certain to make the Justice League look like the comic book characters that they are?

Truth, justice and Tourette Syndrome – history in the making.

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My Life in Letters – “S” is for speed

Jacob and Nick at Camp Twitch and Shout

Built for speed. Hooked on speed. The need for speed. Full speed ahead.

Seems like speed is something everyone is trying to get. The faster the better sort of thinking. I used to think that too.

When I was in high school I couldn’t grow up fast enough. I trudged through each day with my sights on the horizon, looking forward to when I was old enough to do my own thing, no strings attached.

I miss those strings. I wish someone had told me they were simply there to keep me connected, not to tie me down.

And now I have two kids of my own – one who is nearing his teenage years and probably feels a bit tethered at times.

Today we dropped him off in Winder, GA for a week-long overnight camp for kids with Tourette’s- Camp Twitch and Shout. As I was hanging out in his cabin with him, making his bed, fiddling around he sort of turned to me and said, “Well, okay, bye.”

Subtle, right? Here was the child who slept in my bed for the first 7 years of his life. The child who clung to my leg as if it was the only thing keeping him from floating away most days. The child who made my heart beat with a whole new rhythm the day he chose me. Here was my first born fraying the edges of his own strings.

And there I was thinking why in the world did I ever pray for time to move more quickly, because it appears that God was listening and now I can’t seem to get it to slow down enough.

Now I’m all about slowing down, making time stretch as much as I can.

I was reminded of just how quickly times passes on Saturday when we took Nicholas to his first movie – Toy Story 3.  Jacob’s first movie (9 years ago) was the first Toy Story,  so it was a bit bittersweet for me.

On top of that initial heart-tugging memory was the fact that this was the last  Toy Story because Andy is all grows up now.  By this time I was feeling all tangled up in strings and it was nearly too much to bear as I watched Andy part with his beloved Woody and Buzz before he left for college.

College? C’mon Disney give a mother a break.  I can only take so much, you know.

So it’s been a weekend of strings being pulled, wings being stretched, hearts being tugged.  But it’s all good.  I know it’s the way life unfolds – at breakneck speed, once you move that tassel from one side of the mortar board to the other.

But I also know that I need to slow down and enjoy each day I have with my boys.  I need to soak up the moments, even the difficult ones because there will come a day that I wish I could have just one more argument over why Jacob feels the need to litter the floor with pieces of his electronic deconstructions.

I’ll try to remember two of my favorite quotes as I go about each day.  I will try to remember that life happens whether I pay attention or not,  whether I savor the sweetness even when it’s tinged with a bit of bitterness or not.  But I’ll have so many more memories when my boys are gone if I slow down and take it all in.

Life is what happens to you while you’re busy making other plans. – Lennon

Nothing is worth more than this day. – Goethe

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Five Things Friday – Misconceptions about Tourette Syndrome

I have had several conversations with people who make false assumptions about my son based on the information that the media provides about Tourette’s.  It angers me that many of the media sources who do stories on TS or make reference to TS do so in a very sensationalized manner, leaving the general public to assume that TS is a cursing disease and is punchline fodder.

With megaphone in hand I am telling anyone who will listen what TS is, and more importantly what it isn’t. That said, here are five of the most common misconceptions that I have seen with regards to Tourette Syndrome.

Misconception 1:  TS is a swearing disease.  The images that we see on TV are inaccurate.  Less than 10% of patients with TS have coprolalia – a condition that causes them to use obscene language.

Misconception 2:  TS patients make funny sounds and move in odd ways – that’s it.  Unfortunately, a diagnosis of TS usually doesn’t come alone.  TS is notorious for bringing a few friends along for the ride.  OCD, ADD, ADHD are some of the co-morbid conditions often associated with Tourettes.

Misconception 3:  TS is very rare.  Many cases of Tourette’s are not correctly identified or are so mild they go undiagnosed.  However, according to statistics between 1 and 10 children per 1000 have Tourette’s and as many as 10 per 1000 people have some form of a tic disorder.

Misconception 4:  TS patients are debilitated by their condition and cannot lead productive lives.  Many people, when I tell them that my son has TS, ask if he is able to go to school with “normal” kids.  After I take a deep breath I assure them that my son is just as “normal” as any other kid (whatever that means) and that yes, he can hang out with the regular crowd.  TS does not prevent him from doing anything.  And while some cases are more severe than others, and can affect one’s life adversely, most people with TS lead very active, productive lives.

Misconception 5:  People with TS can control their tics if they really want to.  Try this:  Hold your breath as long as you can.  Can you hold it for 30 seconds?  A minute?  Longer?  Maybe, but at some point you will need to breathe.  And if you’ve held it for a long time, you will find yourself gasping for air.  TS patients can suppress tics for short periods, but it’s very uncomfortable (so I’m told by my son) and usually results in an explosion of tics.  Telling someone to stop ticcing is like telling someone to stop breathing or blinking.  It’s possible, but not for long.

May 15 – June 15 is National Tourette’s Awareness Month.  Take a minute to visit this link and educate yourself on TS. Then pass this on to someone else. Let’s start a chain of awareness so that kids like Jacob can be understood and accepted.

Also be sure to visit my Tic Dock page to read more about TS and how it has affected my life.

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My Life in Letters – “P” is for Parent

As a parent we all want what’s best for our kids. It’s just that some of us want it a bit too much. When Jacob was born I was determined to be the best mom I could. So I watched him and each time he did something normal or abnormal, cute or disturbing I would rush to Barnes and Noble and find a book on it.

I’m not kidding. In fact, the very night I found out I was pregnant, after telling Warner, I drove my newly pregnant, not even showing self to the book store and proudly bought What to Expect When You’re Expecting. I wanted to get a head start on this whole expecting thing…in case, something unexpected happened.

When Jacob began to exhibit his stubborn nature, I bought books like Parenting the Difficult Child, Your Spirited Child and several other books along the same line.

I read, highlighter in hand, ready to crack Jacob’s code. And as soon as I’d figure him out, he’d change on me again. So I’d move to the next set of books determined to “fix” him, as if he were sick.

Illness came in many forms during Jacob’s younger days. But it usually didn’t come in the form of stomach upsets or rashes.  It was more along the lines of random upsets and rash behavior. I discovered that Jacob was an Indigo child, a spirited child, a gifted child.

When I was a kid, well, I was just a kid. I had an attitude, was a bit sassy at times but my mom didn’t have any books telling her who I was and what she should do to with me. She decided for herself – belt in hand sometimes.

But it seems I turned out pretty okay despite the fact that, since she had read no books, she probably had no idea who the hell I was. I mean she was practically parenting a stranger, right?

When Nick came along I decided that maybe I could do this thing on my own this go round. I was pretty certain that if he was anything like his brother I could rely on the whole been there done that notion.

Turns out he’s very much like Jacob. Turns out I sort of do know what to do – maybe there is something to this whole intuition thing after all.

I’m proud to say that I haven’t bought one parenting book since Nick was born and I haven’t even reread the highlighted parts of the books I bought about Jacob. It’s quite nice. I am finally realizing that Barnes and Noble isn’t just a How-To-Parent store. They actually sell books NOT on parenting.

Now maybe I can find a book to tell me who the hell I am!

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Giving up vs. Letting up

I’m a part of a group of incredible internet moms whose kids have Tourette Syndrome.  Each woman is in a different stage of her journey and each woman respects the uniqueness of every journey represented in our group.  I am very thankful for this group and for the woman who got us all together in one place.

We have all succumbed to fits of anger and depression and found that, at those times, this group of phenomenal women has been our lifeline.  We have laughed and cried together.  We have shared our disappointments regarding our children and ourselves.  We have let our guard down and trusted these women that we only know through words.  We have found strength in our numbers.

But despite the strength that I have discovered within myself, I still stumble and I still doubt.  I find myself reading each post, digesting all the methods and medicines that have been tried, and wondering, have I given up on Jacob by choosing not to continue actively searching for a cure, a fix?

It’s been six years since Jacob’s diagnosis and I’ve tried several things – vitamin therapy, halfhearted diet restrictions, behavior management – several things before I decided that it was time not to give up but to let up.  And now I’m questioning whether there is a difference between giving up and letting up.

I was worried that that was exactly what I had done – given up on Jacob – given up on trying to help him.  So I turned to the source.  On the way to school I asked Jacob, “Do you feel like I need to keep trying, keep looking for something to help you. Like maybe I’m not doing enough for you, that I’ve given up on you with the whole Tourette’s thing?”

And he said in all his 12 year old wisdom, “Mom, I have Tourette’s because I’m supposed to have  Tourette’s.  This is who I am.  I’m meant to have this.  You can’t fix me and I don’t need to be fixed.”

Which is what I thought anyway.  My gut instinct told me you’ve done everything you can.  He’s happy.  He’s healthy.  He’s doing well in school.  Yeah, he still tics, but that’s just who he is.  A diabetic even when they are on medication, and living a healthy life still has diabetes.  No matter what I do he will still have Tourette’s – it’s neurological.  That’s how he was born.  There is no cure.  Not yet.

But at what point do I step back and say this is who he is?  It’s okay.  It’s okay for him to be a kid with Tourette’s.  But that’s not all he is.  He’s not just the kid with TS.  In fact, that’s such a small part of who he is.  He’s the tech kid.  He’s the kid who can fix my computer.  He’s the kid who can make his four year old brother double over in laughter and believe in magic.  He’s the kid who teaches himself calculus in  his spare time.  He’s the kid who makes awesome You Tube videos on how to modify Nerf guns.

He’s that kid.  He’s that kid first and then he just happens to be a kid who has TS. No matter what I do he’s still going to have TS and he’s still going be okay.

I’m not judging people who haven’t gotten to this point.  It took me 6 years, and maybe some people will never get to this point.  That’s fine too because the bottom line is that as mothers we are doing what we feel we need to do for  our kids.

I felt after 6 years that I needed to stop trying to fix Jacob.  I needed to stop trying to figure him out,  because I knew what was going on with him.  I knew he had TS.

I’m not a scientist; I can’t find the cure.  People are working on that for my son.  But you know what people aren’t working on for my son? Having a relationship with him.  Getting to know him aside from his TS.  And that’s what I needed to spend my time on.

I needed to spend my time on getting to know this amazing kid.  I needed to spend my time hanging out with him and not trying to fix him or solve his puzzle every time I looked at him.  That’s not what I’m supposed to do.

I’m supposed to enjoy him and the whole time that I was trying to fix him I wasn’t enjoying him.  I wasn’t enjoying him at all because I was stressed that I couldn’t do what I thought I needed to do for him.

But you know what?  What I needed to do for him was actually pretty simple.  I needed to be his mother.  And to listen to him.  And enjoy him.  That’s what I needed to do.

I see now that there is a huge difference between giving up and letting up.  Giving up means you lose hope and feel defeated and let your garden die.  Letting up means that you stop and smell the flowers that have bloomed right in front of you while you were reading a book on how to grow your garden.

Despite the gardener’s best intentions, Nature will improvise.  ~Michael P. Garafalo, gardendigest.com

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This is my testosterone-laden life

A screen shot of one page of my iPhone - these are not your Momma's apps!

In my house I am the queen. That’s one good thing about being the only girl in the house. I tend to get some respect because no one else produces estrogen quite like I do. It’s my thing. It’s how I roll.

Sharing the house with three hairy-legged man-boys has it’s advantages. I don’t have to share my clothes with anyone. Well, okay, sometimes Nicholas wears my shoes, but he’s 4, he’s entitled. Warner on the other hand, well, that’s a different post.

I can pink it up and for the first time in my life, I have no competition, even the pets are of the T persuasion.

I am always the best smelling person in the house. Always. Guaranteed. You won’t catch Warner or Jacob smelling like Lavender Mint. Nick is in a league of his own so he doesn’t really count – I mean he eats his boogers. ‘Nuff said.

And being the odd girl out, I am considered the leader. Okay, maybe that’s my own take on things but I’ve often heard Warner say just that, “Ask your mom, she’s the boss.” There’s just something about breasts and ovaries that intimidate a man. I think it’s the whole I-can-grow-babies-and-you-can’t thing I have going on that gives me the upper hand, or at least the upper mammary gland.

So with all these positives that a queen like myself gets to experience daily what could possibly be the down side to sharing my kingdom with three people who check the other box on forms?

If you sit at my table and expect fine dining or even sorta fine dining or even that’s fine dining – as in you look just fine, honey, really you do – you’ve got another thing coming. The dinner table conversation runs the gamut from technologically driven monologues that even Nicholas understands better than me, to how do you force a burp Q & A sessions.  Meanwhile, just to add a little estrogen to the conversational fire, I always throw in a good “I like sparkly things” comment here and there.

Just the other day I was reminded that I am living a testosteronally-challengened life when I was browsing my iPhone apps.  I couldn’t recall the last time I actually played my Fart Piano or aimed my digital gun at a bad guy, in fact, I couldn’t recall ever buying those apps.  Jacob was the culprit – Jacob and his sidekick Nick.

And after looking at all the manly power apps that have taken up residence on my phone, for some reason I feel compelled to buy a Pink Sparkle Pony Sunshine App.   There is a Pink Sparkle Pony Sunshine App, right???

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