Hearts Full of Joy

Learning About Tourette's

Every day I am reading more about Tourette's, and gaining great understanding of my boy, and myself, and our family dynamics.

It is healing and painful and enlightening and humbling and liberating and frustrating.

I am realizing how much self control our little guy actually has. And how much patience he has had with us and our impatience.

:Waiting to play his violin with the Nauvoo Community Orchestra in his first performance - you can see in his face how he is struggling & focusing so he can hold still:

We have been very confused and frustrated over the years about the issue of why he can hold still in school and church, but not at home. We have honestly never had a family prayer, scripture study, family home evening, or even a conversation that hasn't been interrupted (usually repeatedly) by him, since he came to us at 4 days old. But as I shared in my first post about Tourette's, he can hold still and not interrupt in church and school. We have asked him over and over in exasperation why he can't do it for us at home. And now we have an answer. "When a child with Tourette Syndrome is trying to suppress several tics during the day, say at school for example, he will be using up a lot of energy and this becomes exhasuting for him. This will build up to a feeling of frustration......and the tics and pent up energy will need to be released when he gets home."....Tics and Tourette Sundrome: A Handbook For Parents and Professionals

I read years and years ago that it is a good sign when children act up home, because it means that is where they feel safe, and it is the same with Tourette's - he can't suppress the tics and urges and energy all the time, and he feels safe to do it at home. So that is good. But I feel so guilty that I haven't understood it until now.

The book I referenced above also says, "It is a sad but realistic thought that every day there will be a chid with a tic disorder in a classroom somewhere who will be reprimanded for his tics. It is not uncommon to hear about children given detentions or extra homework because the teacher  assumes the tics are done deliverately to annoy him/her". Thankfully, I am not aware of this happening to our son. He has been blessed with very good teachers. And I think he has also worked hard to suppress the tics at school. I am so grateful for the wonderful teachers he has had at school and church. I just wish I could also say that I haven't reprimanded him for his tics. But I am coming to realize how much I have reprimanded, scolded, reminded, pleaded, and even lost my temper & yelled over things that he probably had little or no control over - like touching every single thing he passes in the grocery store aisle (which happened again yesterday, and I started to scold him, just like I always have) . It is very humbling and heartbreaking. And somehow he still loves me sweetly and patiently.

I have learned again and again that our children offer us every opportunity to overcome our weaknesses, if we will be open to learning those lessons. It is difficult and painful. One of my great weaknesses is that I am easily overstimulated. And so living with the constant movement, noise, confusion, and chaos has brought out the very worst in me. I have felt completely frayed and frazzled for almost 10 years. But I also have the opportunity to let this situation make me into a better person than I could ever otherwise be. I am continually faced with opportunities to be kind and patient and understanding in spite of feeling overwhelmed and overstimulated. Probably every child offers this to every parent. But for me and my boy, the scale of this offering is enormous.

I love my boy more than I can express, and am so grateful that we get to journey this life together.

 

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A New Reason to Blog

A New Reason to Blog

I was expecting to focus mainly on our experiences in Korea as I've starting blogging again. But it turns out that I have an additional reason to blog. We have discovered that our precious boy has Tourette's Syndrome.

 

We don't have an official diagnosis, so it may seem hasty to make such a pronouncement. But a diagnosis is extremely difficult to get. Most doctors haven't really learned about Tourette's in medical school, and there are not definitive tests that give you a positive diagnosis. And now that we are in Korea, it would be much more difficult to get a diagnosis. But after repeatedly feeling strong impressions to research Tourette's, we have found that it explains everything that this little man has struggled with, seemingly from birth.

 

Because of media representations, most people think of someone shouting obsenities when they think of Tourette's but that only happens in the rarest of cases. The onset is in childhood, and it is almost always accompanied by other challenges like ADHD and OCD.

 

Tourette's explains the entire list of things that our little guy (and consequently we too) has/have struggled with, including:

severe sleep problems, including sleep walking

extreme, debilitating anxiety

lack of impulse control

difficulty with fine motor skills

obsessive thinking

repetitive behaviors

facial and vocal tics that are increasing in severity

inability to hold still

the need to touch things

irresistable urges

constant (and I do meant constant) question asking

and the list goes on......

 

The tics have been going on for years now, and seem to be continuing to worsen - eye blinking, grimacing, shoulder shrugging, neck twitching, etc. With Tourette's they generally worsen until puberty, and then usually start to decrease. At first I didn't think he had vocal tics (which are a basic part of a Tourette's diagnosis), but after researching, I realized that he did. Repetitive throat clearing, sniffing, and similar patterns fall under vocal tics.

Our boy is so sweet and good and extremely intelligent and talented. As we've tried to talk to others about our concerns and struggles, we have almost always received responses along the line of something like this - he is a wonderful boy, and we must be blowing things out of proportion, OR we just don't have realistic expectations of a boy (he has 4 sister and no brothers), OR that we are causing his problems by putting too much pressure on him or treating him like a girl, OR that we are just a little crazy.

One reason for this is that people with Tourette's can control their problem behavior at least somewhat when they are in public. But eventually they have to let it go. (One way to understand this is to compare it to blinking. You may be able to aviod blinking for a while, but eventually you have to give in and blink). And so he has been fairly good at forcing himself to hold still in public - church and school settings, but that causes additional pent up energies and urges that then get acted out at home. So unless you live with him, you don't get a realistic idea of what he/we is/are facing. We once had someone in our home who was shocked by his behavior (and disgusted that we weren't controllig it better). He was literally bouncing off of walls and ceilings. We tried to explain that he was always this way at home. She gave us a disapproving look and said sternly, he isn't that way in primary (our church program for children). At the time, it really caused me to question myself, and I would stand at the door and watch him in primary. He was indeed able to hold still. Why not at home? What did it mean? What were we doing wrong?

As time has gone on, school has become increasingly difficult for him. He has gone from being a straight A student in the gifted and talented programs to consistently bringing home D's and F's. It has been becoming more and more difficult for him to hold still and focus at school. And that has been making him feel badly about himself. So the homeschooling that we are doing in Korea has come at just the right time. I had felt that confirmed to me even before we realized that we were dealing with Tourette's.

We have known that something was different for him since he was a baby. We could tell he was very intelligent, and a remarkable child (and an unbelievably cute one). But something was different. He had jerky repetitive behaviors even as a small baby. And extreme, heart-breaking anxiety no matter what we did to make him feel secure and loved.

He is truly such a good boy, and never wants to disobey or do anything wrong. And when he does, through lack of impulse control or through uncontrolable urges, he is confused and feels so badly about himself. Poor little man.

And of course we feel badly about all the times that we have been impatient - the times that we have scolded him or punished him or raised our voices at him for doing something that he probably couldn't control. And then there are all the times I've asked him in an exasperated voice to STOP clearing his throat or blinking his eyes, or saying the same thing over and over again.

But it does feel good to have a reason for what has been going on, and to be able to find some answers about what we can do.

One book I have been reading had this simple statement:

"Looking after a child with Tourette's Syndrom can be extremely exhausting".

Those few words were so validating. We have been so exhausted for almost 10 years now, and not able to figure out exactly why. We have felt badly about ourselves. We have blamed him. And then we have felt even worse about ourselves for blaming him. He is the son we prayed for and hoped for and dreamed of. We do love him so and are so grateful for him, but we are almost always so tired - especially during his first 3 years when he rarely slept for longer than 30 minutes at a time, day or night. The book then went on to talk about the stress it puts on a marriage and on siblings. Yes, we've all felt that too.

But I am finding peace, and a renewed energy to do whatever we can to help him. And I'll share what we learn on our journey.

 

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Learning About Tourette's