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

happy halloween!

 

halloween skirts

another  fun project from my new favorite sewing book, and here's another post about it too.

i was thrilled to see that mary abreu, who wrote the book, commented on the second posting!

i should clarify that most of the patterns in the book don't have aprons, but i love using the cute panels we have in our shop for the aprons - can't resist.

the skirt on the left is for my little one, and the one on the right is for her little friend who is turning 3. i made them both last night during the last few hours of summer - quick and easy and ready for fall!

this little girl is at the most scrumptious, delightful age - wish I could keep her this way.

a bump in the road

what a week this has been! tashi flew to utah to start her new life at BYU (very emotional for us all to let her go, and sad to see how hard it was for the little ones), and as my mom picked her up at the airport, she called and told us that my brother's wife was waiting for a breast cancer biopsy result. this was almost eerie, because last year on the same day, my dad found a lump under his arm, and i got the call that he had cancer just as i was dropping lexi at her college dorm for the first time. both diagnoses, last year and this year, happened at my mother's birthday, which has been very difficult for her.

also this week, our littlest started pre-K, and brock started a doctorate program several states away. he traveled there this week for one round of classes, and he will travel there 2 more times this semester. he was accepted to teh program in may, but we have been waiting for news of a fellowship to determine if we was going to do it or not. he left on wednesday, still not sure of the fellowship, but it has come through. we also had visits from lexi & bear, on their was back to SVU (southern virginia) after their summer in california, and brock's parents. and our garden is producing faster than we can keep up with it, so there has been lots and lots, and lots, of canning, which i love, but we're tired - emotionally, physically, and mentally.

there has been roller coaster news about my sweet sister in law, but things are looking better than at first. my brother has started a blog to follow their journey:

A Bump in the Road

 

my sister lost her husband to bone cancer when he was only 25, my mother survived breast cancer 7 years ago, my father died of neuro-endocrine cancer in april, and so this is our family's fourth time around. we are very hopeful and i do strongly believe there will be a positive outcome.

a kitty tale: a tribute to adoption & motherhood

our kittens are over 3 weeks old now, and so, so fun. they want to explore and play with us and wrestle each other. we have always felt that gigi, their mommy, is the best little kitty cat in the entire world (she found lexi & i as a tiny ktten when we went for a walk last summer, and wanted to come home with us), and she has proved to be a wonderful mother ~ staying in her box and nursing her babies even when she was weak from hunger. we would bring food & water to her, and she would gobble it desperately, but she wouldn't leave her babies.

(first time out on the lawn)

on monday, the day after their 3 week birthday, a cute little neighbor boy brought us a tiny gray kitty he had found in their barn. they heard it crying on sunday, but couldn't find it. he finally searched until he found it in the rafters after school on monday. it was so tiny, about 1/4 to 1/3 the size of our kittens.

this little kitten confused us because he was so small, about the size of our kittens at birth, but he had his eyes open. our kitties didn't get their eyes completely open for over 2 weeks. then we noticed that he still had his cord. our kitties lost theirs within a week. lexi googled and discovered that kittens can open their eyes as early as 3 days, so we think he is less than a week old. this tiny guy is so sweet and affectionate. he purrs and cuddles, which our other kitteis wouldn't do for us, they just wanted their mommy at this age. we put him with our kittens hoping that gigi would feed him. she was unsure, but did allow him to stay. but he was so weak, and the other kittens so big and pushy, that he didn't have a chance at nursing....

so we force fed him some milk through a syringe, worried that he would get it into his airways, and decided it would take a miracle for him to make it through the night.

little mia is our animal lover and she put him in a doll sling and carried him around that evening. she lovingly and patiently cared for him and kept trying to feed him.

finally we put him with the other kitties for the night, hoping for the best. when we went to bed, we found two signs on our bedroom door:

"please check on buster (that's what she named him) every 30 minutes"

and

"did buster die?

yes/no

at what time

     :         "

we wrote that he was alive at midnight and went to bed.

in the morning he was alive and willing to be fed more milk from a syringe.

and now for the really interesting part of the story (at least we think so)....

mia took buster to gigi before she left for school, and had a long talk with her, telling her how important it was for her to feed him. gigi listened and then picked him up by the scruff of his neck...it took her a long time to accomplish it, because there isn't much scruff. it looked like she was eating him....and carried him to an empty cardboard box in the garage and let him nurse. then she carried him back to the box with the other kittens. she has repeated this over and over and will take him to his own box whenever we ask her to. now, wednesday afternoon, he can hold his own and feed with the other kittens.

i don't believe in coincidences, but do believe that most (if not all) things happen for a reason. i wondered if this little kitty may have been sent to us for a reason. i asked mia what she and buster (pronounced "bustard" by gracie, which inspires endless amusement) have in common. she noted that they were both small. i contributed that they both had birth mothers that couldn't take care of them for some reason. then i asked if we, or gigi, love him any less because he is a different color, or different size, or was born to a different mother. i saw the light go on in her eyes that i had hoped for. and that brings me joy. she struggles with these issues. i'm grateful for an orphaned kitten and a devoted kitty mother and what they can teach my precious little girl.

 

to blog?

I can hear the leaves falling outside my windows, making a rythmic rustling, and I love it. Autumn is heaven where we live.

It's been 4 months since I posted.  And the more time that passes, the harder it becomes to post.

I love my blog, but it is difficult to balance blogging into my day, along with family, exercise, spiritual uplift, relaxation, recreation, serving as relief society president in our church, and keeping our businesses running. I spend so much time on the computer with our online shop that it can be hard to justify spending even a little more time in order to blog.

The past 4 months have been full of wonderful moments, and I will try to fill them in...as best I can.

she is a stinker

this mother's day card from lexi made me laugh ....

 

first: it is undeniably true!

second: this little skunk looks exactly like lexi would have drawn it, if she had drawn it herself.

too funny!

....i love you too lex!

growing up

it was a full day. lexi went to early church because baccalaureate conflicted with our church meetings. we went to the first half of sacrament meeting (where noah waxed wise - see previous post), then baccalaureate. afterwards, i ran back to relief society, and lexi suprsied me by joining me a few moments later (she had already sat through 3 hours of church,  rehearsals, and then baccalaureate. and then she and tashi stayed at church for a sunday evening discussion with susan easton black. they zipped home for a bite to eat, and then back to seminary graduation.

lex gave the opening prayer at seminary graduation, and both she and tashi recieived highest honors and "lettered" in seminary - this involves 90% attendance (at 6 a.m.), 200 days minimum of daily scripture reading, memorizing all the scripture mastery scriptures, and memorizing more like the first presidency and quorum of the twelve in order.

it hit me as we sat there, what amazing girls i have, and how incredibly grateful i am. we don't get up in the  morning until after they have left for seminary (so grateful they can drive). they do this all by themselves. and i give them very little credit for it. they amaze me.

next sunday lexi will graduate. and next year at this time we will do it all again with tashi. so many thoughts and emotions (mainly denial), but sotly too busy to stop and think or feel them...... i somehow missed the memo about how incredibly busy you life is with a graduation senior.

11 years ago, when lex and tash were 7 and 6, i was going through a rough patch. i found myself a very young stay at home mom, with both kids in school all day in japan. and a hoped for pregnancy hadn't happened. i missed my girls everyday, although i enjoyed my alone time (and got so much done!) everyone told me how lucky i was and to enjoy my time. and it was exciting to get to do all the things i hadn't been able to do since becoming a mother: to work out for an hour everyday, to take the train and meet brock near his work for lunch, to study japanese in depth, to go to the temple at least twice a month, etc, etc,. but i discovered that as wonderful as those things were, they weren't anywhere nearly as fulfilling as being a mother, and i was panicked about what would happen when my girls actually left home. the thought was too much to bear. i asked a friend who has seven children, and whose oldest was a senior, and youngest were twins that were tashi's age at the time, how it felt for her to be losing her oldest. she smiled and said that it was difficult, but that teenageers had a way of preparing you for their departure.

i do understand her feelings now. i can see that lexi is ready to go, and i am excited to see her spread her wings and fly. but i'm sure that sorrow will hit me when she is gone. i'm so grateful for the younger children that finally joined our family. because i would be falling apart right now, if they weren't here with us.... if tashi would leave next year, and that would be it. of course i would be in better shape (more time to exercise and eat right), i would be more sane, i would be more accomplished, more relaxed, and have a MUCH cleaner house. but i wouldn't take any  of those things if i had to give up my children to get them.

i do love being a mother.

a beautiful life, well-lived

i followed stephanie nielson's (nie nie) amazing and inspiring blog, and loved her long before her plane crash, as perhaps many of you did.

today i found a link to this youtube video and was deeply touched. i think you will be too.