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Summer was HARD.

Summer was full of ups and downs. We had some fun with family mixed with some rough days at home.

A consistent routine is a game changer to Audrey’s happiness. My self care pretty much goes out the window when she is on a long break. I’m working on this all the time and realize it’s an unhealthy cycle but we made it through and so we are pressing on! I say we survived but didn’t thrive😆

Audrey built her strength with a few weeks of intensive PT sessions at a clinic in Sacramento and her and I had a lot of time together.

We are now officially into the first full week of school as a second grader. Transitions are rough and due to an extreme staffing shortage, it’s been a bit hectic. I’m hopeful that with some new team members added we will get back into a good flow by the end of the month!

Some exciting things coming this fall:

⁃ I am attending my first in person summit: the global genes rare advocacy patient summit next month. I’m getting out of my comfort zone and going to it alone in San Diego California. I’m thrilled and excited to learn and network! It will be 2.5 days filled with trainings and speakers with so much insight into this rare diagnosis world!

⁃ I’m also getting to do some fun activities with friends and family so I’m very much looking forward to September.

⁃ Audrey will continue horse therapy after school once a week. I’m excited for her but hoping she has the stamina to work hard after a full day of school. We will adjust as needed.

⁃ Feeding assessments for feeding therapy and neurology check ups will also happen this month.

⁃ I have big plans of working on advocating for our city to be more inclusive. It may take time but we will get there!

⁃ September 30th is Microcephaly awareness day! Check out http://www.caskgene.org for info on why our CASK warriors and loved ones rock the yellow on this special day!

We will continue #KickingCASK as we make our way into the last half of 2022

When I found out I was pregnant, never in my wildest dreams did I imagine a non speaking child, a child that needs mobility devices, orthotics, specialists in almost every area of development. I call that privilege. And being naive. If you haven’t experienced it, why would you imagine that world? I even worked in special education a few years before having Audrey and I still was in complete denial that this world could be my reality.

No doubt it is hard, it takes great strength to press on each day to fight, educate, advocate. Sometimes I wonder what it would be like to not have these obstacles (okay maybe more than sometimes…).

But one thing I have learned about being a parent to a disabled child is that growth in MYSELF is more important than any milestone my child may or may not meet.

Each day, I learn to embrace navigating this unique world we are living just a little more.

My precious, beautiful, funny and resilient child has taught me more than I could have ever imagined these past seven years.

I strive to be a better human for her. Some days that is easier to do than others but none the less, I am always working at it!

Progress over perfection is a great motto to have especially in parenting.

If you would have told me at the time of Audrey’s diagnosis that we would be getting her a feeding chair with all the “extras” on it at the age of 7, I would of been heartbroken, probably would of cried for days.

But yesterday when her chair arrived and the nice man helped me adjust it for her, I smiled with pride!

Knowing that we have a secure, safe place for Audrey to eat and take a rest makes me so happy and relieved!

I was actually excited to put her in the chair this morning for breakfast and wheel her up to our island.

This is progress for me and I will take it!

This parenting gig sure is a rollercoaster, one I am so lucky to be on.

We survived a long two week spring break from school and filled the days with a short beach trip, a family visit to the lake house and lots of outside time!

We are excited to see how the next few months go. Since the pandemic, school hasn’t been all that consistent given school breaks, distance learning, seasonal sickness and a week of Covid! So we are hoping to settle in to more of a schedule this spring!

Things Audrey is crushing lately:

-Using her AAC device in school!

She is learning to navigate her communication device and chooses her circle time activities, greetings to her classmates and asking for breaks and help are all things she continues to make progress on!

-Walking independently!

She continues to gain more stability and assurance with this and seems highly motivated to be on the move. We recorded her record high of 51 steps just this past week so I am looking forward to her soaring in the near future.

-Sleep!

We are still nowhere near smooth sailing but her chunks of independent sleep are continuing to get longer. I had lab work done for her a few months back which showed her iron level was pretty low. Supplementing that has seemed to start making a difference and we hope the next time we test it is at the level her doctor and I discussed. Lack of iron leads to restless legs which Audrey definitely deals with so we hope it continues to get better!

-Mainstreaming into Gen Ed!

Audrey has worked up to 30 minutes each day at school in the general education class with her neuro typical peers. She has SO many friends who know her on campus now and they tell me she thoroughly enjoys being a part of it! She gets to go to their language arts morning lesson and one day a week she does a music class with them! It is a win win for all involved and I couldn’t be happier with her school placement.

Something we continue to struggle with at home is effective communication. She has a lot of big feelings but can’t always communicate exactly what she needs. By continuing to navigate her communication device and having her physically get stronger, we hope that this will open some new doors to her being able to tell us what she needs. It’s by far the most challenging part of this journey for us all!

Summer will be the true test to her 7 year old sass 🤣. I have her signed up to do a local physical therapy intensive which she hasn’t done since before the pandemic started.

I know it will be hard but I’m hopeful for the progress and gains that will come from it!

I continue to work as a board member on the CASK Gene Foundation, mainly on the social media end. I’m thrilled to be a part of the exciting new things to come our way related to new CASK Gene research. It’s a learning experience which I’m grateful for.

If you haven’t checked it out please do so by going to caskgene.org

Keep watching as Audrey continues #KickingCASK this summer!

Audrey’s birthday is tomorrow… it has my husband and I reflecting on all of her years of hard work!

I remember when Audrey first started physical therapy (9 months old)… her therapist thought we would have her walking by age 3! I held on to that number with so much hope.

When that birthday came and went, I will admit, I felt defeated. What was I doing wrong as a mom? I do all the therapy, all the practice! Why can’t my baby walk yet?

Nonetheless we pushed on, continued to kick CASK. I knew she would walk on her own timeline.

By age 5 she was getting so close. We worked hard even with shut downs and little therapy. Slowly Audrey got stronger.

This past year we saw her strength and now she is well on her way to being an independent walker. We still have work to do but boy am I PROUD!

Check out the U TUBE video my husband compiled! Thanks to his good friend to helping us with some technical difficulties too! (Thanks Joe!)

https://m.youtube.com/watch?v=UQe1y-Tc85Y&feature=youtu.be

I can’t believe we are almost in the year 2022!

Wow this past 1.5 years has been full of ups and downs but I am so happy with the program Audrey is in.

I had her yearly IEP meeting this week. What a team she has. So many specialists! The meetings always go longer than I ever plan because there are so many updates to share.

I heard about all the progress she is making, the joy she has for school and also the struggles they are encountering throughout the day. It all aligned with what we see at home and we were in agreement that when Audrey is in a good space, she soars.

We talked about strategies to implement once we come back from break that may help with this, mostly all having to do with her communication device and sensory overload.

Sometimes it’s easy to focus on all the hard so it sure is nice to hear the strengths from her team!

Audrey continues to amaze me and show us that she is capable of so much more than her body sometimes allows.

A few exciting updates to share:

1. Audrey had her first ever cousins sleepover this month! She did great and I am so thankful for my family for offering. Getting a bit out of her routine and having her experience a different way of life isn’t always easy to plan for but it is so worth it!

2. She rocked her last dentist appointment. Audrey allowed them to actually look in her mouth, feel around and even tolerated the fluoride! We have a long road ahead for this but I was so impressed with how brave she was this visit!

3. After the first of the year, pending COVID restrictions, Audrey is going to spend 30 minutes a day, a few times a week, in a general education 1st/2nd combo class! We discussed all the pros and cons and it will be a trial and error experiment but I am so very excited to see her flourish. I know that we made the right choice moving to this school district last year!

4. Audrey received the first COVID vaccine and did wonderful. She had no adverse reactions which we were thrilled with and will be getting her second dose over the Christmas break!

5. We have a long break ahead of us which always gives me anxiety since Audrey thrives on routine and going to school but I’m hopeful we will make the best out of the time off with family and friends!

6. We had great success during our CASK Gene Foundation Giving Tuesday campaign. Thank you again to all who continue to donate, follow our story and encourage us along the way! You all mean so much to our family.

Happy holidays to everyone

Watch us #KickCASK in 2022!

During this time of the year FOMO (fear of missing out) sets in. I become even more aware that our life is full of routine. We read Halloween and Christmas stories all year long.

We don’t bake fun holiday treats, go trick or treating with friends, participate in festivals, get to hear her tell us what costume she wants to wear or even carve pumpkins.

You see, it doesn’t matter what day of the year it is, Audrey still has the same schedule for the most part. I keep waiting for it to get easier but the fact is, I’m not there yet.

The hardest part about living a life you never envisioned is letting go of those expectations. Now, we definitely try new things (modified) but it isn’t the way I thought my kid would get to experience life none the less how I would experience parenthood.

Audrey is extremely passionate about the things she does love to do and I am forever grateful for that.

But that doesn’t make it any easier to see others living a life in a world that just doesn’t make sense for our family most of the time.

The holiday season hits hard. I hope one day is doesn’t.

We always try to give Audrey the most positive experience and dip her toes into traditions. Sometimes we have some success and often times some joy, so we celebrate that.

Tomorrow I will dress her up in the costume that I chose for her. Not sure if that will ever not sting.

But regardless, we will try our best to give her a fun day filled with Audrey approved activities.

Happy Halloween everyone! Don’t take for granted the things your children can participate in or the things they can communicate to you. Someone watching may be longing for that experience no matter how big or small.

Through this entire pandemic, Audrey had so many things taken away from her. She no longer went anywhere public, we hardly saw anyone except close family and she lost all in person services for the majority of the time.

April 2021 finally came and she got to return to school for shortened days. Between mask mandates, little social interactions and not a lot of students in her class returning in person, Audrey still managed to thrive in this new world. I started to see my girl come back to life. She had a routine, she got to get out of the house and was able to work on skills that I struggle to provide for her at home.

We got back to being hopeful and excited for her future at this school.

Right when her and I both started feeling better about our schedule again, summer break was here!

I decided to enroll her in summer school (which I haven’t done in the past) because I refused to let her spirit dwindle.

This once again was a new experience, new teacher, different staff and very different structure. Audrey managed to adjust… and I once again sighed with relief.

Well here we are again. Summer school

done with and five full weeks to fill. Very little therapy and worry of how to explain this to Audrey.

The first week we kept busy and she seemed happy. By the third week I saw that frustration hit again, as if she was saying “not THIS again mom.”

Daily I spoke to her about going to school soon with her teachers. But my heart breaks knowing that I can’t fully explain why yet again she’s just home with mommy.

When you have a child with a neurological disability, giving them the best possible life is the only goal. I don’t care if Audrey ever learns her alphabet or can count to 100 (well I CARE, but not in the same way others might).

But I do care about her happiness, her independence and her ability to navigate this world.

I’m a work in progress with accepting that I can’t be the only one that teaches her the skills needed in order for her to thrive.

That leaves a lot of negative thoughts in my head.

I wish for so many opportunities that honestly may never happen for my precious girl.

Although summer looks very different for families like ours, a glimmer of hope is all we need to get by.

We recently met a new neighborhood family at a park very close. They have been so accepting and it honestly makes me happy to know there are friends out there for my child. The mom is quickly becoming a friend and her three children are kind and so selfless. They are including Audrey in everything they do and are so very accommodating. This doesn’t happen often and I am thankful that we have found them.

I know Audrey will get back into the swing of things as soon as school starts back up. This makes me happy and also sad because it forces me to accept that her needs take a village to be met.

I often wonder when the weight will be lifted, when I will feel like she’s getting what she needs to be the best version of herself.

We both continue to grow as we #kickCASK

Stayed tuned for all of the highs and lows of first grade!

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What an exciting day! Our CASK Gene Foundation had its first official CASK Gene Awareness day. A beautiful way to celebrate our warriors and spread awareness.

We definitely felt the love from family and friends! Please check out our website for more information! http://www.caskgene.org

When you have a child with a disability, particularly one that cannot communicate their wants, needs or struggles, you often find yourself wanting just a day filled with joy. Happy smiles, happy giggles and as few tantrums as possible. That is a good day in our house. Navigating through this past year, we have unfortunately had less of those happy days.

In just these past three days I have cancelled multiple therapies, a dentist appointment and school zoom all while attempting to give us all some grace. It’s especially hard when we just came off of a really good and productive week. Audrey didn’t seem quite herself starting this Sunday. We chalked it up to bad sleep and a busy week but as the days have gone on and her irritability up, I find myself feeling helpless. If there are no physical symptoms, we have to assume it’s a growth spurt, cognitive leap or just plain frustration.

She obviously has had lots of schedule changes recently which I’m sure is a contributing factor but it’s so hard to not be able to “fix” the problem.

Only time will tell but the truth is, we may never know why she is so fussy this week.

Audrey has the most contagious smile and her laughter is truly the best medicine. So when she isn’t happy, neither are we.

This Friday we say goodbye to her ABA clinic of the last three years for good. And next Tuesday she starts going to school four days a week. I hope this is the right thing for her and cross my fingers it helps regulate some of the behaviors and frustrations that have been slowly building.

No matter what we will continue to #kickCASK and work towards progress, not perfection.

During this pandemic we have felt many emotions. The one I didn’t expect to feel though was excitement! Although we have had our lows, especially during the beginning of the schools shutting down, we have had A LOT of highs for our little family.

*Audrey continues to make gains despite being able to attend her programs in person. We have an AAC device (finally)! So lots to learn in that department. And of course she’s making huge strides towards independent walking. I’m blown away by her resilience daily and I am learning to manage the stress of wearing the “therapist hat” much more frequently. The days are long and honestly exhausting but we get through it and start fresh the next day!

*We also bought a new home that is better suited for Audrey with more opportunities within the school district long term. We love our neighborhood and definitely feel like it is our “forever home.”

*I was asked to be a board member for a new CASK Gene Foundation. I’m so excited for this foundation for many reasons but mostly because it’s going to be a phenomenal resource for newly diagnosed families. This is something I would of loved to see in my early days of horrific google searches. I feel so grateful to be a part of it all and look forward to what it could mean for the future of those affected by CASK.

As part of the introduction of this foundation being launched, each board member was asked to write their reason “why” they are part of this amazing new foundation. If you haven’t already seen it, please go to and follow our CASK foundation Instagram and Facebook pages. And if you are wanting to learn more or have the means to donate, check out caskgene.org

I hope you all are finding ways to stay sane and healthy during these crazy times.

We are, as always, continuing to #kickCASK.

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