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.