Wonderings from Wonderland

There is a place in Northern AZ (Flagstaff) up near the snowbowl that has beautiful aspen trees.  Gorgeous place for pictures.  We took the kids up there recently and had a nice time.  I snapped just a few quick shots.  Kids don’t usually like mama behind the camera when we are out playing.  It feels like work to them.

Tori telling her big brother to MOVE THE HECK over.

My beautiful man.

If we were on the right trail, my Dad carved all our names into one of these trees when we were little.  That’s why I remembered the place.

************************

Am I pushing the play on the movie title over the edge now hee hee?

I am no expert on TS but I do want to share with you what I know right now (or think I know) and how it applies to Ty.

The first time I ever heard the term “Tourettes”, was in watching the movie “What About Bob”.  Probably the first time you heard it too.  🙂  (I love that movie).  Remember the scene where they are discussing tourettes and shouting obscene, and crude and profane stuff back and forth?  (I mute that scene hee hee).    I walked away from that dumb movie believing that Tourettes had to be  one of the worst syndromes a person could have because what in the heck would you do if you couldn’t curb yourself from shouting profanities?  Those of you that know me personally are finding this particularly funny to imagine I bet.  I was raised to have a very tender conscious towards “bad words” and my mother has a long list of what qualifies LOL.  🙂  Surprisingly, I haven’t developed this rare form of Tourettes 😉 because I do in fact have some mild OCD and holding back all the stuff I am thinking sometime might trigger some tourettes yet (big smile at mom).

Some time after watching this movie, Jim and I were asked to take a little boy to the movies.  We didn’t have kids at that time and were on vacation visiting some family.  As we were going out the door, someone mentioned to me that the child with us had TS and that we needed to bring some medication for “just in case”.  I nearly panicked.  Scenes from What About Bob danced in my head and I wondered what on earth we were going to do if this child jumped up in the theater and started randomly swearing.  About broke into a sweat with anxiety over it.  🙂

Not long ago, there was a cable series on TS and I happened to catch quite a bit of it.  While I didn’t relate it to anything Ty was going through, I did feel so much empathy for all those children and I got a different picture in my head of what TS was (though I must admit – they did center on mostly extreme cases).

TS is a spectrum disorder like autism.  It comes in varying degrees.  Some people have the chronic tics that last a really long time and some have transient tics that come and go.  The key point that separates TS from other tic disorders is the length of time the tic persists and usually a combination of both motor and oral tics (though this may be under some debate).

Transient tics of childhood – the kind that come for a short season and then disappear (short meaning days, weeks, months but definitely under a year), are quite common.  Several blog readers have made mention of this.  In fact, this weekend I discovered that tics run in my family on a very mild scale though I didn’t realize it.

Last Friday night was hard.  All our family was over for Jim’s birthday and I was already stressing over the tic issue.  As the night wore on, the tics became more prominent because of the stimulation in our home (lots of people, noise and excitement).  Several family members went in and out of Ty’s playroom to observe his throat clearing and grunting and all agreed – it was in fact a tic disorder.  It had become quite obvious.

At one point during the evening Jodi and I were having a conversation about some random thing and Jodi says “DONI YOU ARE DOING IT!”  What?  What was I doing?  She then tells me that I was silently mouthing the last few words of every sentence as she said it.  I had NO idea I was doing this.  We laughed and referenced how funny it is when Darin does this.  Darin did this in childhood all the time.  He would mouth the last few words of everything you said in a silent repeating fashion.  We never analyzed why he did it.

A friend of mine has a son with TS who is 16.  In fact, I posted an email that she sent me in 2005.  I’ll reference that later in this post.  This weekend I remembered that Nathaniel had TS and I wrote to Cathy with some questions.  She emailed me back a paper that Nathaniel had written about having TS and in it, one of the tics he described was Echolalia (repeating the last word or phrase someone says).  HA!!!!!  Note to Jodi:   I didn’t get to tell you this on Sunday but apparently Darin and I both have minor tics.  🙂 🙂  LOL.  It seems mine didn’t express itself until I was stressed about tics though hee hee – is that funny or what?

I am not surprised that Darin and I are prone to it either because I have OCD tendencies and Darin has ADHD.  My issues have always been related to counting.  When I was younger, I would be overwhelmed with counting issues but wouldn’t want anyone to know for fear they would think I was nutty.  Like having to count to 200 and having to finish…having to count my steps….having to count ceiling tiles…having to count wall tiles.  Thank the Lord I learned how to multiply and get the area so I only have to count a vertical and horizontal row now LOL.  I can make myself stop as an adult but when I was younger – not so much.

One of my aunts has OCD tendencies too but her’s were related to requiring lotion on her hands on an OCD level.  In retrospect, family can site things she did that were motor tics but they didn’t realize it back then.  My uncle told me about similar childhood tics he had as well.

All this to say, tics are not unusual and can be managed.

Tourettes though is a syndrome that takes something that can be common in some people to a whole other arena that is anything BUT transient and not easily managed.  It’s tic behavior that is chronic, long lasting, motor and oral, disruptive, and interferes with a person’s daily living at least on a social level.

Because it very very often comes along side ADHD, OCD and autism spectrum disorders, I think it can be really hard to differentiate some tics from other ADHD or OCD things.  In fact, while I agree that Ty qualifies for a TS diagnosis (by definition), I still strongly believe there is a secondary cause in his case which probably means his tics actually stem from ADHD, OCD, an SPD triggers as opposed to any genetic contribution to “tic” itself which would technically mean Ty may not have TS as genetically described but the symptoms end up the same either way (thus no reason I can see to argue a TS diagnosis at this point).   I will give you a list of things Ty has done in the past or current that stem from this lineup in some way or another.  I am sharing this with you because I want my family and our circle of influence to recognize it when they see it.  You don’t know what to do when you don’t know what it is.  Awareness will help you understand and it will help Ty when you know what to do.

First of all, Ty has the following diagnosises:

Attention Deficit Hyperactivity Disorder (ADHD)

Obsessive Compulsive Disorder (OCD)

Sensory Processing Disorder (SPD)  –  It is on the Autism spectrum but IS NOT autism)

Cerebral Palsy (CP)

Poor Impulse Control – Ty has a lot of difficulty resisting impulses which is a part of OCD also.

Dyspraxia (Motor planning issues)

PVL (periventricularleukamalacia – damage from intraventricular hemorrages at birth).  That is where I believe all this stems from.

Several learning disabilities stemming IMHO from dealing with the above line up.

And now….Tourettes Syndrome…TS

Good grief huh?

Symptoms that DO or might relate to TS:

* Clearing throat sometimes as much as every 7 to 15 seconds – present condition

*  Grunting – present condition

*  Chewing on clothing – this tic has come and gone for years.  Happens when he is in a very stimulating environment.  He was chewing his clothes like you wouldn’t believe when we were in Disneyland this last December.

*  Ty has been shaking his head back and forth since he was probably six months old.  This has been VERY chronic.  It has happened every single day for the last five years and we don’t even notice anymore.  It happens at predictable tic times.  Today I mentioned this to him as an example of a tic and he said “I don’t shake my head mommy”. Tanner and I both laughed.  A lot.  If you haven’t seen my son shaking his head back and forth than you have not spent 15 minutes with him.  The pediatrician agreed that this is a motor tic.

The above issues I know are tics.  The next list are things I very strongly believe are tics but maybe another mom or the neurologist will confirm my suspicions.

*  Ty has always been very very oral but I have noticed an onslaught of him having to lick everything lately.  I associated this to an SPD thing or OCD.  Maybe it is.  Maybe it is a tic.  Maybe it is both.  I have seen him licking our remote controls, people’s clothing….all kinds of stuff.  In this case – this is an OCD thing as well so hard to differentiate.  Ty has always NEEDED to put things in his mouth.  In the past, I thought this to be SPD but now realize it is more likely a combination of OCD and TS.  That is why these things go hand in hand – they are very inter-related and co-contribute.

*  Ty used to scratch himself as a toddler.  In fact we used to have to medicate his injuries.  I didn’t recognize that as a tic when he was a baby but I know have learned that it is.

*  Also as a toddler, Ty used to bang his head.  Remember when he banged his head on the concrete outside so hard when he was two that he knocked himself unconscious and I had to call the paramedics?

*  Grabbing private parts.  I know – hate to mention that one – but I am telling you because we have all been trying to explain private versus public behavior to him and it isn’t helping.  According to pediatrician, this IS a tic and we need to distract him instead of pointing out what he is doing (he isn’t even aware of it in the first place).

*  Nose picking.  Okay another icky one.  However, if it helps, he isn’t actually picking anything and that is why I suspect it is a tic.  He basically touches just inside his nose and then touches his tongue and he does it really fast like an impulse.  Another thing I thought was a “kid thing” (because it often is) and didn’t recognize it as a potential tic in Ty’s case.  Even my MIL noted though that it looks like a tic when he does it.  I agree.  The way he does it is very TSish as well because he looks at you like he knows it’s something socially unacceptable and can’t resist the urge so he has to do it really quick before you stop him just to go through the “motion” of it.

*  Jumping/Flailing/Hopping.  When Ty is stimulated either in play or engaged in conversation he C A N N O T stop moving.  He just flails all over the place.  It’s a wonder he can play or communicate anything at all.  I don’t know how many times we have grabbed his shoulders and tried to get him to stop.  He might be able to stop for a second but it will pick right back up.  I always associated this one to extreme ADHD because often times ADHDers can’t quit moving.  All things considered, this may very well be a tic and I just didn’t recognize it as such.  I always thought tics looked jerky and out of control but I am learning that sometimes they don’t – sometimes they LOOK purposeful.  The pediatrician agreed that this is likely tic behavior too.

* Touching Things  – wow this is on the tic list!  LOL.  Who knew?  Over the years, Jim and I have gone crazy with watching Ty’s OCD behavoir in concerns to touching things.  Again – often a combination of OCD and tic.

I also read on another site that some things that get classified as movement disorders (that may or may not be associated to TS) are things like teeth grinding (which Ty has done), and breathe holding (which we had a big problem with if you recall).  Pinching and biting falls on the list too and Ty does have a hard time resisting pinching people.  This started as an infant and he still struggles with it though I would call it transient.  It comes and goes.  I don’t know if this is an impulse issue/ocd, a sensory issue, or a TS issue.

Clearly, what Ty is dealing with goes beyond the norm.  Many/most of the items here kids can/will do at some point, or often, or even as a singular tic…but not at his level…not in combination…not for as long.  That is why the Dr. diagnosed TS.

So what are other tics he might develop?  Well I hate to speculate quite frankly but I can tell you that barking, blinking of eyes, rolling of eyes, coughing, sniffing, snorting, touching things, snapping, pulling clothes, imitating movement, explosive and loud language, repetitive phrases, tightening of muscles and muscle movements…long list.  His pattern seems to be to keep some in a chronic fashion, lose some in a transient fashion, and have some come and go so who knows what will happen.    Probably why he sleeps so good at night though because TS makes the body very tired.  Ty sleeps like the dead and doesn’t tic in his sleep.

It is likely to get worse before it gets better.  Hard to say how much.  I am hoping that it won’t get much worse but preparing my heart.  I wonder too how he will be impacted by the fact that his tics likely started as an infant?  Most of what I read say that they typically start at 6 or 7.  Since Ty has started this so much earlier than the norm, what does this mean?  If you know the answer from experience or can direct me to a web article that discusses that point, I would like to know.

The reason it gets worse (according to the pediatrician) at 9 or 10 is because that is when the child starts to recognize the feeling of the tic coming on.  At five, for the most part, Ty isn’t cognizant of any of this.  When he is making his throat hurt (I imagine) from a particularly bad episode, he starts being aware that something is going on and gets upset but for the most part – he has no idea.  It becomes much harder for them physically, emotionally, and psychologically though when they do realize.   They fight the tics and the struggle increases the anxiety which then increases the tics.  Apparently, the teens are no picnic either but once they get out of puberty, they start (usually) having the ability to both suppress and cope. Praying that is so for my son.

One last thing…last weekend I started to pray for help.  I was very specific.  I asked God to send me a woman who had already lived through this and was farther down the road then me.  I felt desperate to talk to someone who understood.  The next morning I woke up with a name on my heart.  I remembered a friend that I had connected with in WI back in 2002 when we were testifying on behalf of the stem cell bill with Tanner.  She had a child with Tourettes.  Until that moment (and Cathy and I have talked via email several times over the years), I had forgotten what disorder Nathaniel had but God brought it back to me when He answered my prayer.  I got to have a good long talk with Cathy tonight on the phone and she confirmed many of my thoughts and helped me see the bigger picture of Ty’s disabilities and how they all work together.  So much of what she said was SO familiar and I am so thankful that the Lord put us together.   In 2005, Cathy sent me an email and I asked permission to post it.  HERE it is.

Isn’t God good?

For Sweetie

Mom – here are the creek pictures that you wanted.  The above picture has a painted effect.  I did not paint this by hand because I thought it would be too tedious.  I do have software that works well for adding a painting effect to landscapes though (but not people) so I tried it out.  Here is the unpainted version:

Here is a 100% zoom so you can see the effect of the painted version closer up:

I think it has a more animated look than a true painted look but I still like it.  It wouldn’t look this animated on the wall either – this is just a super zoom.  Which do you prefer?  Natural or painted?  I took a picture on the opposite of the bridge as well.

Above is unpainted

Painted

Another zoom

Call me after you see this and we’ll discuss your print options.  🙂

This was a different spot but I thought it was pretty too.

Tori happy with mom’s coke.