Author: Rachel Alves

Putting a little human’s needs before yours all the time isn’t easy to do but it thankfully comes pretty natural… most of the time! 

I’m still getting the hang of navigating this special needs world I’m in. Seeing Audrey’s physical gains lately are truly what gets me out of bed each morning.  

These past two months, she has made some outstanding progress: 

*Weight gain! Wahoo she made it to 24 lbs! 

*Starting to hold on (huge progress) 

*Pulling to stand on anything and everything (exciting yet terrifying) and occasionally cruising. 

*Using her gait trainer walker more and more. 

Most recently, I received the news that a potentially good fit SDC (Special Day Class) preschool class has opened up with our district. I will be checking out this campus and classroom after Thanksgiving break.  If it is the right fit, Audrey will start there five days a week after the new year.

Big changes possibly happening in 2019!  

Now, to switch gears a bit. The number one reason for my blog is to help educate and raise awareness. With that being said, as the holiday season approaches, please remember that not all families get to enjoy traditions the way your family might.  There may be a reason someone doesn’t show up to your party, brings their own food or leaves much earlier than the others. They may decline invites or suggest specific gifts to give when asked.  Please realize that seeing all of their friends and family getting to do things with their children that they may not get to do isn’t easy.

Be kind, be accepting and understand that listening is sometimes the best thing that you can do.  

Learning to make our own family traditions and shifting my thoughts of what the holidays look like is something I am working on. My world, amazing as it is, may be one that looks just a little bit different.

August was a whirlwind of a month. Audrey and I devoted the last 3 weeks to a PT intensive in Woodland. This meant that our schedule changed quite a bit and added more commute time each morning.

She worked 5 days a week, 3 hours a day on fine and gross motor skills. (Minus the three days we were out due to a nasty virus that hit her pretty hard)

Here are some of the skills Audrey worked on while at CTC intensive.

*Pull to stand

*Creeping along furniture

*Holding on to swing

*Controlled steps in walker

*Using the theratogs body suit to help facilitate appropriate muscles

The amazing therapist we worked with focused a lot on the importance of weight bearing with hands so that Audrey can become more stable for standing and walking.

Part of this therapy included Audrey touching new textures and playing in slimy/sticky things such as paint, whip cream and pudding. Sensory play is hard and not fun for Audrey but she did great and worked up quite a tolerance to some of them!

I know over the next few months we will really start to see these new skills in action. She has already started pulling up to stand but now we are just fine tuning it to make sure she does it correctly and safely.

In addition to this intensive, here are some highlights from this summer:

*Tried lots of new foods including some healthier snack options (win)!

*Started climbing up and over objects

*Enjoyed the sand at the beach

*Discovered her love for horses

We are both going into September ready to work.

Exciting new adventures start up this week!

*Sac State STEPS treadmill program starts back up again

*Audrey gets her custom adaptive trike from NorCal Trykers September 8th

*All regular therapies will resume back including ABA, Weekly OT, PT and Speech services

Looking forward to #KickingCASK this fall ❤️

Social media paints a pretty picture.

As humans, we highlight the good days. The fun memories. But the truth is, that 2 second snapshot glorifies reality. It doesn’t show the tears, the struggle, the sleepless nights, the 100 other pictures that were taken to get that 1 decent shot.

I often hear from others how happy Audrey is. Although for the most part this is true and we are so lucky this is the case, I tend to not document the hard moments that happen each day. The tears from therapy and the overall exhaustion aren’t what people want to be reminded of (including myself)

But they are there.

Not a day goes by without me wondering am I pushing her too much? Am I making the right decision continuing to add on more hours of therapy? When does it become too much?

My days during the week consist of driving to and from multiple therapies all around the sacramento area, having therapists in and out of my home, trying to squeeze in enough meal time for Audrey and hopefully a nap so we can make it through her next therapy that afternoon.

It’s stressful and often physically and mentally exhausting.

I try to balance it all with park dates and lunches with friends but the older she gets, the more I find my life really fitting into that “special needs mom” box.

So for now, I have decided to step away from social media. I will keep my blog and Instagram for all things CASK related to continue to spread awareness. But Facebook is going to take a break!

If you haven’t followed my blog site, please do so by clicking the “follow” button once directed to word press.

Thanks again for all the continued love and support on this wild journey of ours. We wouldn’t be here today without you all.

Look for my next blog post late August which will update you on Audrey’s newest intensive therapy adventure. #kickingcask

From the second I found out we were pregnant, I tried to do what I thought would be best for our child. I tried to be healthy, I tried to be safe, I tried to think about all the experiences we would have that would make her a well rounded individual.

Then I became a special needs parent. SURPRISE!

Throw almost every idea out the window on what you thought you would worry about. Now my focus is on raising awareness, therapy goals and things like her calorie intake, how many minutes a day she should be standing and SO MUCH RESEARCH.

I am constantly researching.

I research sleep methods, medications, supplements of all sorts, toys that promote fine and gross motor development. You name

It, I have probably researched it. This can be so overwhelming and draining for many reasons but mostly because the thing I’m researching usually is a crapshoot.

With a rare diagnosis, we deal with a lot of trial and error. This therapy MAY help, let’s do it. This medication/supplement MAY work wonders why not try?

The downside (and upside) to all of this research is no matter how many times I tell myself that this new “thing” will not be life changing, I still slightly get my hopes up. There is still a part of me that wants there to be a magic pill that would take away all the struggle Audrey has to go through. Reality always sets in (rather quickly) and I know how silly this is. But hope and Audrey’s contagious giggles are the only two things that keep me researching. ❤️

Every parent wants to do what’s best for their child. Learning to shift my mindset on what is “best” for Audrey is something I’m always working on. Learning to accept and be happy with those tiny gains has opened my world and heart in so many ways but like anyone, some days I power through and pat myself on the back for being productive, other days I envy other parents.

Every person has their own journey which has bumps along the way. I guess as a parent, you never really know what those bumps are going to look like. Today I will remind myself to *hope* for the strength to keep hoping so we can continue to #kickCASK

I can’t believe it has been almost 6 months since we had our last big transition. Ending early intervention last January was scary for me. I’m not a fan of change, especially when it comes to potentially altering the type of therapy Audrey gets.

But wow! What a whirlwind 6 months it has been.

I can say without a doubt now that fighting for Audrey to get ABA covered by our insurance was the best thing I have ever done for her. The team we work with is amazing and she has grown so very much there.

These women see her every single day, for multiple hours a day. What a special thing to experience someone else loving and caring for your child like this! ABA has been life changing for the both of us. Here a few things Audrey has been up to during these last 6 months with them:

*She is now traveling for pecs (crawling) almost across an entire room to request a specific toy or item she wants to play with.

*she can now put IN objects when asked to.

*she is ALMOST stacking (just not consistent with fine motor but she gets what to do!)

*Audrey is following simple instructions such as “give me,” “put in,” “turn page.”

*She can successfully feed with a loaded fork at least 2 meals a day!

*she is sharing more, playing more appropriately with toys and tolerating so many more sounds and textures as well! Can not say enough good things about ABA 😃

With the school year ending this month, a few of our therapies look a little different. We take a bit of a break from school district speech and our treadmill training program but have added some others that are hopefully just as beneficial!

What our summer looks like :

*We have 2 family beach trips coming up

*An 8 week summer horse riding therapy program that she is already loving!

*PT intensive this August in Woodland that will be 3weeks, 3 hours each day.

*hoping to continue to increase Audrey’s gait trainer time by doing fun things such as using it to stand at water tables, bring it to her ABA clinic so she can work on interacting with peers at standing level!

Audrey is definitely getting more sassy every day! Although this can sometimes be draining, especially on very little sleep, I believe it’s one of the reasons she continues to kick CASK!

I often question if I would be the same mom with a typical kid… Maybe all the worries and unknowns cause me to feel this way? I know it could be worse, this is not lost on me. We have been so lucky to have a happy little girl. Some days more than others though, I am reminded that this isn’t typical parenting. I would imagine that most moms don’t have to make appointments with caseworkers, therapists and specialists. I would imagine most moms don’t have to worry about researching medications and possible interventions that “may” help. Most moms may be able to take on the normal crazy life stuff because at the end of the day, they most likely will get a full nights sleep, or at least drink a glass of wine before their kid wakes! Don’t get me wrong, things for the most part have been going great with Audrey. She’s relatively healthy, she’s getting stronger and learning every day. I’m feeling more settled and less overwhelmed with our crazy schedule. I love our team of therapists and have met some amazing contacts with even better programs to consider. But man sometimes our reality hits me hard. It’s usually after a particularly rough night of sleep, when in addition to our regular scheduled therapy, we have specialty appointments, equipment device approval letters and forms for me to fill out. Sometimes ordinary life mixed with special needs life is a whirlwind. I’m so fortunate to have a supportive and helpful husband. If I didn’t, I’m sure the days would be much more stressful. This coming month our schedule lightens a bit due to some programs being on summer break. I’m always looking for new opportunities for Audrey to participate in and am hoping to have her take part in another intensive PT session late summer.

Here’s an update on what Audrey has been up to lately:

ABA has been AMAZING! Couldn’t be happier with the decision we made to have this be Audrey’s form of “school” for the time being.

*She’s responding much better with outside sounds, going to the clinic without me 3x a week, starting to follow instructions and understanding “first” and “then” teachings.

*She is making huge progress with PECS and now requesting toys in addition to food.

*Her fine motor skills are improving which is allowing her to use a fork (with pre loaded food) in addition to wanting to try lots of new foods, especially everything mommy has! *

*We recently got on a list for an adaptive tricycle through Nor Cal Trykers and are expected to get the custom bike late summer/early fall.

*Audrey is also working in her gait trainer much more these days which is nice to see.

Sleep unfortunately hasn’t improved but we have recently changed medicines and are playing with dosages to hopefully find success with CBD oil. (Fingers crossed)

I continue to advocate where I can and have recently joined a parent advisory committee for her STEPS program that will start next fall. Hard to always remember that slow progress is better than no progress! Audrey is really maturing these days and her little personality continues to get us through each day! #KickingCask isn’t an easy thing to do but our rockstar does it every day. ❤️

Com·mu·ni·ca·tion

kəˌmyo͞onəˈkāSH(ə)n/< em>noun< strong>1. the imparting or exchanging of information or news.”direct communication between the two countries will produce greater understanding”

2. means of connection between people or places, in particular.

These definitions say so much… a non -verbal person has such a hard time connecting to people. Wow. To actually read those words stings a bit because it is often true with my daughter. So many moments of our day are spent trying to connect, trying to understand Audrey.

It is frustrating, sad and more often than not, it leaves me feeling completely helpless.

Everyone has bad or “off” days. I know I certainly do. Those are the days I reach out to my friends, maybe grab a drink or treat myself to something yummy or pampering. And even though this doesn’t fix or solve what originally made me feel this way, in that moment, it helps.

Special needs life is never this simple. In particular, a non-verbal special needs life. My daughter doesn’t get to tell me what would make her feel better in that moment of frustration. As a mom, this kills me. Sure I can put on her favorite show, attempt to feed her what I know she likes, play songs or read books that usually bring her joy. But I never truly know what is making her feel this way. Does she have a headache? Is she just tired? Tummy upset? Frustrated that her body can’t do the things she wants it to do.

So on these tough days, I go through my list but often times not much works. As a mom, this is unbelievably hard. To know your baby is struggling and not be able to do anything to help them. Imagine having zero say on your daily activities. Audrey doesn’t get to choose what she eats, what she wears, where she goes or even what she wants to play. Now you may be thinking that is most toddlers. But usually, they have some say. They voice their outfit choice and their food preferences at minimum.

We work so hard every day to teach Audrey to make these choices. I’m very hopeful that the new therapy we have started this month will help particularly in this area of communication. But I know it’s always going to be a struggle. It’s always going to be work. And it most likely may never look the way you or I communicate.

Some days this is hard to digest. Please don’t take speech/communication for granted. It’s something I long for every single day.

Audrey is 3 now. In most households this means their sweet baby is a big girl, in our house it means transitioning from the early intervention program we have been accustomed to for the last 2 years. Losing her therapy team that has loved and supported our family so much was sad!

Next step:

So, do I choose ABA over school? Do I push for an aide? Is she not ready? Is she safe? Will there be enough eyes to make sure her needs are met?

These are just a few of the worries that have been going through my brain this past month.

Change is hard, transitions are hard. To a special needs family, change brings on a whole new ball game of fear. Am I doing the best thing for my child to receive the most services and support that I can? I sure am trying.

This past month I went to Audrey’s IEP. Although it went much better than anticipated, the placement they offered still didn’t seem like the right fit at this time. Eventually, I could see Audrey thriving in that room but not today.

So after much pondering, speaking with anyone and everyone who has worked with Audrey and making pros and cons lists of all sorts, my husband and I decided to hold off on the school placement right now.

I had to really think about what was going to help Audrey gain the most

growth cognitively and physically.

This means that we take on ABA therapy full time and in addition, I will take her to all of her PT, OT and Speech services as well. We have a busy schedule on our hands but hope to see great results!

Some things we learned Audrey loves this month:

*Doughnut holes 🙂

*Staying at hotels

*Jumping in bounce houses.

Our happy girl continues to make slow but steady strides and each new experience proves her growth! Looking forward to seeing more progress from our determined rockstar #kickingcask

Isn’t it amazing how we are built to recover from traumatic experiences? When things you thought were unimaginable, you somehow get through? That’s how I feel about these past two years for my husband and I. December 3rd 2015 is an anniversary I would love to forget… but the date will forever be this dark day. I remember exactly where I was sitting when that phone call rang. When I heard the words “Mrs. Alves, is there anyone at home with you today?”

My heart stopped for a minute and the genetics doctor’s next words were all a blur. I remember hearing her rattle off statistics and lots of “she may never.” I remember losing it once off the phone and crying in my husbands arms. I remember feeling as if my whole world was literally shook. 

We were given the number that day of only 68 cases of CASK genetic mutation. 68 world-wide diagnosed.  

I kept thinking that it was a horrible dream. You never think it will be you.  

Being told that your child may have a whole host of health issues, may never walk or talk, will

most likely never lead an independent life, that is something I will never get out of my head. What do you do after getting news like this? Well, you make a choice. You choose to wallow in self pity (which some days I do) or you fight… 

We made it another year. And what a year it has been. Audrey continues to work her butt off #kickingcask.  

We have been to two intensive therapies this past year, fundraised with the help of our amazing families, started a treadmill training program and most recently have been approved for ABA services (tentative to start this coming January). The year has been filled with MANY doctors visits, one horrible sedated study, tons of new therapists and specialists. Audrey has learned to crawl, stand with support and is getting very close to walking. Her eating skills are slowly getting better, I wish I could say the same for sleep (ha)! 

The amount of effort that has gone into each of these milestones for her is intense. She is a fighter, a warrior, my hero. To top it off, Audrey does all of this with amazing hair and more times than not, an incredible smile.  

We have lots to work on but this coming year is looking promising. I have learned to be a better advocate and fight for what is best for my child. She has taught me to love in a way I never thought was possible and to see this world in such a different light. I no longer take little things for granted and for that I am a much more compassionate person. Motherhood, special needs or not, tests my patience every single day. But maybe that’s the whole point? Because to hear her laugh, see her smile and watch her get stronger is the reason I keep going. It’s the reason I keep fighting.  

Birthdays are to be celebrated, right? Audrey’s third birthday is quickly approaching which has me feeling lots of things. Most moms I know get teary eyed over their child becoming more independent and turning another year older. I get teary eyed for a very different reason. I dread that day I can no longer say “she is two” when the stranger in the store asks (as they always do). Two leaves less questions, two still seems like a reasonable age to not be talking a ton or not having shoes on at the grocery store. But three, three is a whole new world. This age is the first year, in my opinion, that strangers will really know Audrey is different. Kids will notice she isn’t walking or talking. Parents will give me a smile but then quickly look away because they will know it’s not by choice that I am carrying her onto the playground. 

A few weekends ago at a child’s birthday party, my husband watched as a two year old climbed up onto the chair to eat a slice of cake… he said to me “wow did she just do that by herself?” I answered, “yep.”

We often forget what typical children are able to do since we live in this non-typical bubble most days. But I see it. I see the children climbing and running, playing with their friends. I hear the moms talk about the struggle of potty training days and private preschools as they sip their coffee and watch their kids from a distance. My husband and I don’t get to do that though. We have to make sure Audrey isn’t putting toys in her mouth or helping her stand at a table to play. We have to be there to make sure she gets the experience and bring the foods she can eat, or leave early so we can feed her at home. My child is generally happy and enjoys most things in life and for that I’m extremely grateful. But what I would give for her to go off and play with other kids or get to explore life on her own. 

I will forever celebrate the birth of my daughter. She deserves to celebrate and so do we. Dealing with her actual age versus her developmental age is something I think will always get to me. I cherish each and every milestone Audrey has met and feel so proud of the work she puts in each day to get stronger. Some days though, I am not the strong advocate I want to be. Some days are harder then others. Some days I just wish my kid could eat that damn birthday cake…