The Choice, No Matter What

(written April 30, 2012)
I have a love hate relationship with yo-yos. I think they are super cool! Especially since seeing some incredible tricks involving yo-yos on America's Got Talent. But I cannot seem to get the hang of them and so they frustrate me. A part of our lives the last 5 months has seemed a bit like a yo-yo and there have not been any cool tricks involved!

Our oldest son, Isaiah who is 6, has Tourette's. We began to suspect this Thanksgiving weekend. He saw a Neurologist 3 days before Christmas and our suspicions were confirmed. The one criteria that could have ruled out the diagnosis was that the tics must occur over more than 1 year, during which time there must not have been a tic-free period of more than 3 consecutive months. We past the 1 year mark sometime during the last couple of weeks. And so it is official. 

I am not sure how much you know about Tourette's, I knew very little until recent months. My limited experience with it had been what you see on T.V. Sudden outbursts of socially unacceptable words or strange noises. It is not always so extreme. And though this can be a part of it, there is so much more to this disorder. 

Most of Isaiah's tics you wouldn't notice unless you just sat and watched him for a while. He had one during the holidays that would turn heads at the grocery store. But the rest have been less obvious and he controls them well in public. His vocal tics he mostly does under his breath... you'd hardly know he was even tic-ing if you were not paying attention. 

The frustrating part for us is that Tourette's waxes and wanes. He may go weeks with hardly any symptoms and then it all starts back up again. It is like reliving the onset over and over again. You think you are prepared but there is a small part of you that is thinking. "Maybe that's it, maybe God healed him or maybe this has all just been some strange fluke. Perhaps we all got it wrong and Isaiah does not really have this." And then... here we go again...

Beyond the tics there are a number of other things that go along with Tourette's. OCD, which Isaiah seems to possibly struggle with as well. But most discouraging for us has been his emotional well being. Isaiah has always been our most compliant child, always easy going and even tempered. He kind of just goes with the flow. He is quiet and has, for the most part, been a happy little guy. Now he is like a different kid. He is now suddenly a perfectionist and if things are not "just so" he cannot handle it. I could give you many examples of this. Like the tics his emotions and perfectionism seems to come and go in bouts. A situation will arise that I think is going to cause an emotional break down and he handles it without a problem. The next thing you know a page he is coloring wrinkles and it is as if his whole world has fallen apart. And thus this part of our lives is a constant up and down... a yo-yo effect. We have prayed over him, rebuked Satan and done all we know to do. But Jarrod and I both believe, without any wavering, in God's sovereignty and his perfect plan. I admit my faith is not always where it should be. But if I stop for even a moment to consider whether or not I believe God has his hand right in the very midst of all of this I can say with complete confidence HE DOES!

This past weekend was a particularly bad one with Isaiah. It did not take much to upset him and trying to find a balance between showing him grace and requiring the same amount of self control that we expect of our other kids is difficult. I also love him to ity-bity pieces and seeing him deal with something I do not understand chips off a little piece of my heart every time. Jarrod and I both have said over the months that, at times, we feel like we have lost our Isaiah. He comes back. And then,  just like that, without warning... he's gone again. 

Sunday morning I was standing next to Isaiah  at church. I love me some good Praise and Worship and I was just singing away...

"Blessed be the name of the Lord
 Blessed be Your name
 Blessed be the name of the Lord
 Blessed be Your glorious name..."

 Suddenly, I was singing the words my heart was so not ready for.

"You give and take away
 You give and take away
 My heart will choose to say
 Lord, blessed be Your name."

It was so literally where we are. We experience, sometimes daily, what seems like this giving and then taking away. As I posted last week,  God has been working on my faith... no doubt he has used Isaiah's Tourette's to do this. I know that I fully believe God can heal him. I also believe God can and will use this to glorify Himself whether He heals Isaiah or not. I  suppose now He is working on the choice, and it truly is mine, to say "Blessed Be Your Name. Thank You when I have my Isaiah back and things are 'easy'.  But thank you also sweet Jesus when you 'take him away' again. You are still worthy of my praise. You have not changed just because I do not understand you." Is He a good God? Is He a God who changes? Then tomorrow when I do not like my circumstances is He still indeed a good God? Then Blessed Be His Name! 

We use to play a game in the car when we were kids. We would put our heads in our laps close our eyes and chant. "We're not there yet, we're not there yet..." Occasionally my dad, who has a great sense of humor (and is a little obnoxious with it from time to time), would stop somewhere that was not our destination and we would excitedly throw our heads up and exclaim, "We're there!" Only to find out we were somewhere in the middle of a street! I feel like that sometimes with whatever God is trying to teach me.  "I'm not there yet, I'm not there yet..." I do not believe God is quite the prankster that my daddy is but I do prematurely proclaim "I'm there" sometimes and then I have to bury my head again and start over. In regards to always without fail in the midst of my personal heartache saying to God "Blessed Be Your Name". I can say right now with conviction "I'm not there yet!" But by golly, I AM going to get there eventually. 

Blessed Be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering

Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name

Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

I am so OCD...

I am so OCD, we all say it from time to time. But are we really? I have gotten to know this disorder up closer and a little more personally than I would have liked. And I can tell you, I am not.

My son has Obsessive-Compulsive Disorder. It kind of stinks. As I was loading the dishwasher tonight I "had to" reorganize the plates because I did not have like plates together. And I thought, as I often do, "Dear Lord, he must have gotten his disorder from me. I am so weird. Then I mentally checked myself. With disappointment I remembered, it is not this simple. OCD is more complicated, more discouraging than thinking things look a little neater in the dishwasher if they are grouped the way I like them.

So how about you? Do you suffer from this? Or do you, like me, like things the way you like them and want things to be your way? Just to be sure, try it out someday. Can you put a blue cup in the cabinet next to a red cup, and then another blue - close the door and walk away. Will it bother you, send you in to a panic attack and set your world on it's rocker? Or will it kind of bug you for a few minutes until you get distracted by something  else.

Our son, before he began taking medication for his OCD could not eat breakfast if it was not in the "right" bowl. A blue plastic was the only thing he could eat out of, until one day it became a white bowl with three black lines, not the one with two black lines, not the plain white bowl. Same with the right shirt, "whatever felt right". And it just could not be any other way. And it went on and on and on. With perfect home work, perfect order, the right color of this, the right texture of that. Medication has done wonders. Still sometimes "the right thing" will rear it's ugly "have to" head. But it's rare and he is learning to cope with the disapointments. He has OCD, I do not!

Similarities

I have made a new friend. I am excited about this all on it's own. But on top of just having another friend this friend has a son who is bipolar... and she gets me! We texted back and forth for awhile today. We talked a lot about our sons and their struggles and our struggles through them. I have thought often how many similarities there seem to be between Tourettes/OCD and autism, and there are. But in talking to my friend today I really see a lot of similarities between Tourettes/OCD and being bipolar. I was surprised at first and then realized I wasn't all that surprised at all. He has the major mood swings. He is affectionate, friendly, talkative, kind, happy. Then suddenly he is not. He is grumpy, rude, distant, depressed acting. (Which is part of what reminds me of autism) New friend said that sounds very much like what her son does.

So I am going to start looking into whether there are real medical similarities or if we have a wrong diagnosis or if there is one more thing going on with Isaiah. Research here we come. This always stresses me and bums me out but seems necessary incase we need to be treating Isaiah differently as far as medication and therapy is concerned.

What I enjoyed about talking to her is that, she gets how hard it is to move forward sometimes. You deal, you think you have excepted it, and then the entire disorder, personality, symptoms, whatever the case may be changes up on you. I have found that even mom's who have children with other disorders, while compassionate, just don't get your inability to move on. She understood all too well. How and why that is so hard.

Stuff

Because of our son's OCD he likes to hoard, it is just one of the forms of the disorder that he has taken on.

One of the big ones is papers - Papers from school, art projects, pages from coloring books... At times it seems to take over the house. I have thrown away a paper before, not even giving it a second thought and weeks later come to regret it. To our son it was a prized possession and not one soon to be forgotten. There have been melt downs and panic over a misplace school paper. (one that has been completed, graded and sent back home)

I have tried, but I cannot keep up. As much as I hate to admit it, I don't want them cluttering every corner of our home. And despite all my attempts to help him "get over the hoarding of papers" his mind does not work that way.

The solution to this is perhaps the best thing we have come up with to make life a little more "manageable" around here when it comes to this disorder.

He has a three ring binder, a three hole hole punch, and a rule. If it is something he wants to keep, HE is responsible to punch holes and put it in the notebook. If the paper is still out when he goes to bed that night it goes in the trash. I remind him when I find something of his or it is time to clean up, "If you want it, put it in the notebook if not put it in the trash. After homework is done in the afternoons I tell him to clean out his school folder and he knows what that means. (I do try to remind him to keep up with it everyday so it is not too many papers at a time and so overwhelming)

So far so good. This has cut way down on the clutter of papers and helped him realize that he bears some of the responsibility. We may end up with dozens of notebooks, so far our first one is beyond full. But he LOVES going through it and looking at all his "treasures". We have avoided who knows how many tears.

* I would also suggest putting some sort of folder into the notebook for all the little (and big) projects too.
** Similarly we have a "treasure box" for some of the other things he accumulates. When it gets to overflowing he has to clean it out and throw stuff away. This takes him hours and is hard for him but he does it and I believe it is good for him to have to purge from time to time. He gets to make the choices and decide what is more valuable but he still doesn't end up keeping everything he has ever laid eyes on. This too has worked well. I think when they struggle with hoarding, putting the ball in their court but also giving them some boundaries is very beneficial. 

The journey

Our 7 year old son has tourettes, he was diagnosed about 1 year ago. Although we can look back now and see that he has had symptoms since he was at least 3. Shortly after his diagnosis we realized he was manifesting some characteristics of OCD as well. Only a year down the road we are in no way experts. We have discovered a few things that help make life more manageable for us as a family and Isaiah as an indivudual. We have a lot we would still like to learn. When I have a place to journal my thoughts, challenges and triumphs I find I can let go of some weight. Hopefully somewhere along the way what we have learned can help somebody who is just beginning this journey. This diagnosis can knock the wind out of you but it does not have to define your family.

I am so happy to say - we survived the first year and the reality is something that becomes easier to accept all the time. Where I use to see these disorders as some sort of bondage we had resign ourselves to, they are not! There is life outside of tourettes and OCD. We are learning to free ourselves from preconceptions, most of which we had assumed all on our own. Not held back but choosing to live OFF THE CHAIN!