Diary of a Tourette Momma

Diary of a Tourette Momma Daily account of life having a teen daughter with Tourette Syndrome and its co-occurring conditions - the good days, tough days and everything in between.

I’m going to keep it real with our life, advocacy and education.

Haven’t posted in a hot minute. I’m going to start posting more. Lots to catch up on and lots going on. I’ll post in mor...
12/08/2025

Haven’t posted in a hot minute. I’m going to start posting more. Lots to catch up on and lots going on. I’ll post in more in detail in the coming days but Laken was diagnosed with a severe learning disability in math, classified as “gifted” in the language arts, moved to a new home over the summer, doing great in her modified class schedule in 10th grade, getting the accommodations she needs at school, continuing to thrive in theatre, visited UVA’s Movement Disorder Clinic for Tourette Syndrome recently, etc…

Her tics are very aggressive right now at times, both vocal and motor but she’s still able to suppress at school for the most part and it’s not affecting her acting or singing so we are grateful. She struggles daily in various ways but she deals and she’s having a wonderful sophomore year so far. 🩵

Hope everyone is well and enjoying the Christmas season!

10/10/2025

October 10 is World Mental Health Day!

Approximately 83% of people with have been diagnosed with at least one co-occurring condition, such as , , , and more.

🔗Find support and learn more about co-occurring conditions of TS here: https://bit.ly/3U08ysH

10/08/2025

Sometimes, God asks you to wait.

To quiet your heart.
To simply be still.
To let Him go to work.
In a way you could never imagine.

Sometimes, it feels as though God doesn't hear your prayers.

You pray.
And pray.
And pray again.
With seemingly no response.

Time suddenly feels like it's running out.
Hope begins to fade, as does your trust in Him.
Sometimes, it seems as though God has forgotten you.
Abandoned you.

Left without saying "goodbye".
Hidden in plain sight.

As you frantically search for any sign of Him.
And your heart screams for Him to remember you.
Wondering if He even remembers you.

It can be so unbelievably hard to be patient, especially when you are too preoccupied in worry and in your own plans; when your entire being is fighting against the waiting, to instead push forward with life, full-steam ahead.

And yet, what He asks of you never wavers: "Be still before the Lord, and wait patiently for Him." (Psalm 37:7)

The entire concept of waiting goes against everything the world puts before us...
..right now.....immediate.....on-demand...

Being human, and so incredibly connected to our human world, it is almost impossible to go against the grain, and stop yourself from running, full-force ahead...toward your own worldly plans.

Yet, what if.....what if God's plan is for you TO WAIT ON HIM?

What if.....you pursued God's heart even more, and realized, that more often than not, the waiting is not only a time that brings forth unexpected blessings, but also helps you to plant your deepest roots of faith, if you simply allow them to grow in Him?

What if.....this time of waiting is actually an integral part of God's plan for you? To refresh you, to teach you, to guide you, and especially, to prepare you for HIS future for you?

Waiting on God, and His timing, can be so incredibly hard and uncomfortable. But, it can also be so, so very worth it, if you can reteach yourself to allow it to be just that...a time to grow, a time to renew...a time to prepare and hopefully expect.

For, it is how you handle your times of waiting that truly shows those around you just exactly in Whom you place your trust and hope. For, when you trust in Him, He will not fail to give you all the courage, tolerance and patience you need.

Because, if you truly believe in Him, you can also believe in His goodness. In His faithfulness. In His covenants. And in His perfect, great and true plans for each one of us.

" ‘For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.' " (Jeremiah 29:11)

In your times of waiting, may you never forget to glorify the same exact Father Who created you...fearfully and wonderfully made, you...from mere dust...
..every fiber of your being.....every hair on your head.....every single beat of your heart...

For His goodness will always endure. He loves you with a love we can only imagine. And within that love, He provides you with seasons of waiting. It remains up to you to perceive them as either a gift, or as a burden; trusting in Him and His bountiful blessings, even when your circumstances seem out of your control and not in your favor.

Heavenly Father,
I trust in You. Please remind me that trusting in You means to fully surrender, not just when life is easy and pleasant. "As for me, I trust in You, Lord. You are my God. My life is in Your hands." (Psalm 31:14-15).
Amen ♥️

Gracefully Woven by Elizabeth Spenner

08/17/2025

Sunday mornings are for meeting Jesus.
That's what so many of us learn.
What so many of us try to embrace.

Sunday mornings are for church.
That's what so many of us are taught.
What so many of us strive for, each and every week.

But sometimes, we don't meet Jesus on Sunday morning in church. We don't meet Him in a Bible Study Group. Sometimes, we don't meet Him with hundreds-upon-thousands of others.

Sometimes, we are so broken,
we don't feel worthy of His presence.
So, instead, we search for Him in the
puddle of tears, on our bathroom floor.
Alone.
Scared.
Hurt.
And shattered.

Sometimes, we are so completely lost,
we simply cannot find our path again.
Our compass.
Our direction.
Dusty Bible hidden out of sight.
Along with our guilt, fears and missteps.

Sometimes, our beliefs are teetering.
We wonder, why in the world even try?
We question if He even cares.
If He can even hear us.
If He even knows.
How He could let this happen.

Sometimes, we are plain and simply exhausted.
Craving the time at home.
Yearning for rest with our own families.
Wishing for missed time with loved ones.
Nothing more than weary for more strength once again.

If I have learned anything over these past two years--blanketed with a cloud of uncertainty we’ve never before experienced--it's this:

Jesus meets you where you want to meet Him.
Where you need to meet Him.
Where you think He cannot find you,
for anything on this Earth.
He will come to you 100% of the time.
No questions asked.

With grace-filled arms.
And unconditional forgiveness.

He finds you in your glory.
And He rediscovers you in your shame.

He seeks you through your unbearable pain.
And wipes your tear-stained cheeks.

He shields your fear of others' judgment.
And having all eyes on you.

He pursues you amidst your U-turn on the way to church. As thoughts of shame flood your soul, having missed out for far too many years.

All while whispering to your
heart that He knows.
He understands.
And He will never for once leave you.

There is not a moment when He doesn't meet you. And, never for once, does He require a church pew, for that meeting to take place.

Because His absolutely favorite place to find you, is in the midst of life's greatest messes.

No questions asked.
Always and forever.
For an eternity to come.

♥️♥️

Gracefully Woven by Elizabeth Spenner

THANKS TO TOURETTE ACTION FOR MAKING THIS CLEAR MESSAGE!🔽🔽🔽🔽🔽🔽🔽🔽🔽One of the most important things to remember about TS? ...
07/23/2025

THANKS TO TOURETTE ACTION FOR MAKING THIS CLEAR MESSAGE!

🔽🔽🔽🔽🔽🔽🔽🔽🔽

One of the most important things to remember about TS? ⬇️

It’s not revealing secret thoughts. ❌

People with TS are not deliberately trying to offend anyone with their tics - it’s often the opposite.

🗣️ Coprolalia can be incredibly difficult to live with. Offensive language, insults, slurs, threats and provocation…

If people with the condition are around strangers it can put them at risk of being in a dangerous situation.

😰 If someone doesn’t understand the nature of Tourette Syndrome, they might think that they’re deliberately being insulted or riled up.

⬇️ Another, more common issue: Some people do understand that tics are involuntary, but are still suspicious that they’re making people with TS truly speak their mind.

Not true!

Tourette’s isn’t ‘just an excuse to be offensive with no consequences’ - it’s a serious neurological condition that seriously affects quality of life.

What’s another misconception about TS that drives you up the wall? 👇

Life has been pretty overwhelming lately so I haven’t had a ton of time to tell stories here like I’ve hoped to do. We’v...
07/16/2025

Life has been pretty overwhelming lately so I haven’t had a ton of time to tell stories here like I’ve hoped to do. We’ve been busy with work, travel, the kid’s volunteer work as a camp counselor, buying a home, getting ready to move, auditioning, plotting a new small business, other projects, family and friend worries.

But, I promise I’ll start putting more out for everyone now that life will hopefully start to settle a bit in the next couple weeks!!! Stay tuned…

** 1st pic - 6 years old & just finished her 1st ever stage performance and theatre summer camp as “Violet Beauregarde”

** 2nd pic - 14 years old & finishes up her 1st theatre summer camp experience as a camp counselor this Friday

Being on stage and acting, as a 6 year old completely set the tone for everything she strives for now. She knew as a 6 year old after that summer camp that she wanted to be on stage and she’s done it year round since. God knew she would need the theatre, the stage to overcome the difficulties life would hand her. I’m grateful for her acting abilities every single day. And I’m grateful for every acting opportunity and every person who has played a key role in fostering that love for acting and helping to push her to dream big!

And sometimes, you have to fight for these simple and basic needs. Keep fighting for your kids and the respect and accom...
07/16/2025

And sometimes, you have to fight for these simple and basic needs. Keep fighting for your kids and the respect and accommodations they need.

Tourette Syndrome is so much more complex than anyone could ever imagine. Here’s a simple, visual reference that helps e...
06/28/2025

Tourette Syndrome is so much more complex than anyone could ever imagine. Here’s a simple, visual reference that helps explain that complexity. You can find lots of resources at Tourette.org.

So Laken has been gone on vacation for 7 days with a friend. She gets back today. I’m sure it was a much needed break fo...
06/21/2025

So Laken has been gone on vacation for 7 days with a friend. She gets back today. I’m sure it was a much needed break for her, me and the hubs.

Taking care of yourself and your TS teen taking care of themselves is incredibly important. I didn’t for a few years after Laken’s diagnosis and it definitely took a toll on my mental and physical health after years of being so fit. But I’m getting myself back on track and it feels good.

If you’re the parent of someone with Tourette Syndrome, I can’t encourage you enough to eat well, exercise, go for walks, stay hydrated and do things that ease your mind and bring you joy. Pray, read a book, relax in a hammock…self care is important when you’re putting a lot of effort into supporting your kid through their ticcing journey. When you take care of yourself, you’re better and stronger for them.

So do something for you today!! Self care is not selfish, it’s one of the best things you can give yourself. I just finished up a 20 min HIIT workout from V Shred and drinking my Arbonne strawberry, matcha and green synergy elixir smoothie!! Now taking the pups for a walk!! Have a beautiful day!

DISINHIBITION & TOURETTE - The complexities of Tourette and Tic Disorders can be difficult to understand. Often, individ...
06/19/2025

DISINHIBITION & TOURETTE -

The complexities of Tourette and Tic Disorders can be difficult to understand. Often, individuals with Tourette and Tic Disorders are unable to restrain their behavior and will act in such a way that oversteps boundaries of social conventions or may seem impulsive. It is important to know that these behaviors are not willful. This condition is referred to as disinhibition.

🩵 Inconsistent Ability to Inhibit Behaviors

Inconsistent ability to inhibit behaviors, motor and vocal, occurs in people with neurological disorders, resulting in a reduced ability to inhibit behaviors even when the individual intellectually understand they are being inappropriate. In effect, it becomes extremely difficult to use their learned inhibitory skills “in the moment.” To say it a different way, the braking system in their brain fails. This inconsistent system failure may result in involuntary behaviors such as being disrespectful, making inappropriate statements, exhibiting behaviors that are not “socially acceptable,” emotional outbursts, silliness, contextual swearing, rage, oppositional behaviors, etc.

🩵 Being “Out of Control”

This can be compared to the difficulty we all experience when we occasionally become overwhelmed by a particular event that causes us to act in a manner that may be seen as being “out of control.” Think about how you would respond if you were hurrying to get to an important appointment and you came out to find that your car had a flat tire. You may say things that under normal circumstances you would not say. At that moment, your mental braking system fails and your inhibitory process is not functioning in a manner that is more typical for you. It’s not that you don’t know how to respond appropriately, it’s that you may not be capable of doing that “in the moment” due to difficulty with inhibiting.

🩵 Occurrences in Children

For children with TS, this phenomenon occurs more frequently, AND inconsistently. For instance, a student who is capable of completing simple math may become oppositional if given a sheet of 100 questions at the end of the day. Since this difficulty is inconsistent (as most symptoms are), this feeling of being overwhelmed may come at times that are not immediately obvious to the casual observer.

It may also occur as a result of a suggestion that the behavior is prohibited. Telling someone NOT to do something actually puts the thought in the person’s brain and may result in the reverse effect. Basically it becomes more difficult to inhibit. Consider a child who has repeated eye-blinking tics. Is it helpful to continually remind the person not to blink? Of course not; it would make it more difficult.

🩵 Providing Understanding and Support

Some youth with TS will have inappropriate tics or behaviors due to disinhibition, which may result in extreme social isolation because of inappropriate statements or vulgarity. If a student is demonstrating these types of behaviors, this is the time for the adults involved to help him or her with strategies to help modify these socially inappropriate behaviors. However, since symptoms are neurologically based, it must always be remembered that modifying symptoms can fall anywhere on the continuum from being absolutely impossible to modify, to difficult, to possible. Imagine being in a formal restaurant when suddenly you have a compelling urge to scratch the bottom of your foot. Think of your response if someone told you to modify your need to take your shoe and sock off in order to scratch your foot and instead to scratch your knee.

Understanding and support are essential at these difficult times. Choosing our battles is essential if we are to help children with TS. If students are involved in behaviors that will lead to being socially ostracized or resulting in physical self-damage, then it may be helpful to use positive and proactive strategies in an attempt to modify this behavior. However, in most cases the best approach is planned ignoring. Typically, symptoms are reduced in environments in which symptoms are ignored and the person feels accepted.

** Information from the Tourette Association of America **

Some days you just feel like you’re failing your kid. You have their best interests at heart but nothing you say or expl...
06/11/2025

Some days you just feel like you’re failing your kid. You have their best interests at heart but nothing you say or explain is ok or makes sense to them. I hate fighting with my daughter. It’s exhausting. Going to bed upset… Uuhhgg…

Fighting over things that deal with her lack of executive functioning skills. Trying to help her. Her not wanting the help. 🤦‍♀️

I’m tired this morning…

May your coffee this hump day be as strong as her attitude last night. 🥴☕️

Gotta try to laugh to keep from crying.
Jesus take the wheel…please. And send more coffee! 🤪

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