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Going to the park is often a time filled with anxiety but I go because Audrey loves it. I usually dread the looks and “how old is she” questions. I never make a connection with the other parents there and try to stick to just playing with Audrey.

But not today!

Today a mom came up to ME. She said that she has seen us here before and casually brought up a conversation with me.

I left filled with happy tears and what I want to say to this stranger is this:

Dear typical mom at the park,

Thank you for your gentle words. You have no idea how much you made my day. You treated Audrey like any other kid there and asked me questions. Not the type of questions that leave me cringing. You truly wanted to know about my child and that meant the world. A rarity. You didn’t pity me or have a sad look in your eyes. You just smiled at Audrey’s giggles and told me about your family.

You spoke to your children about what Audrey seemed to be smiling at instead of telling them to “leave her alone” like most parents do and you spoke with such kindness. We chatted about the weather, how having kids turns your world upside down and everything in between.

Thank you for making me feel like just a mom today.

This is inclusion. This is lifting other moms up.

I write this not to make anyone feel bad about themselves or blame anyone for feeling uncomfortable with a situation you may have been in at some point.

I write this to show you how just simply being a good human being can make a world of difference. Choose and teach kindness always. You never know what someone is going through or what may make someone smile their whole walk home.

Audrey’s 5th birthday came and went last month. I still can’t believe my baby is FIVE.

The years pass quickly but the milestones still crawl by.

We see the gains daily but having a non verbal, non (independent) walker at age five is something else.

We take stroller walks almost every day. She likes the same toys, books, shows and songs that she did when she was 1.5 years old.

I see Audrey maturing. I see her growing physically. I love her more and more every single day but sometimes I wish she was still “just a baby.”

Not for the same reasons any mom wants their child to stay their baby.

Babies are cute, they make squealing shrieks that everyone smiles at. They ride in strollers, eat in high chairs, wear diapers, have tantrums because they can’t verbalize what they may need or want .

But the thing is, my big girl does all of those things as well.

Her age is more noticeable now. Kids can tell she’s getting too big for the bucket swings at the park. Parents see me handheld walking with her or notice me quickly answering questions for her.

Every year I get a bit stronger and more confident with these social interactions and attempt to educate/bring awareness to her differences. I’m still waiting for it to not hit me like a ton of bricks.

Day by day we get stronger together though. Pushing thru, kicking CASK.

This past year we have seen so much improvement with Audrey’s mobility. We have also seen her frustration levels go up due to not having an effective way of communicating. It’s hard. Really, really hard.

It’s hard to see my friends and family watch their kids grow into these little humans that are able to experience so much more than my precious girl can.

It’s hard to give up on the traditions you thought you would do as a family.

It’s hard to accept that no matter how much you want to go to that holiday event, you probably can’t swing it.

So you choose the important ones carefully with escape routes mapped out, early exits and food planned.

My circle has gotten smaller. Some days this makes me sad but other days I know that the ones who have stood by us and consciously still make the effort are the ones I want in my life.

To these close family and friends: I encourage you to continue to include us even when 90% of the time we have to say no, or come solo.

Please know that we want to be there. Please know that sometimes the logistics that go into accommodating Audrey’s needs don’t make the actual event worth it. We have to choose wisely.

Prioritizing our marriage and our own hobbies usually take the back burner these days. We know it isn’t good but that is the phase of life we are currently in (as most parents are).

As always, I am not saying any of this for sympathy. We have a beautiful, silly and medically healthy child who

loves exploring this world and continues to make small gains. Unfortunately, the world isn’t always designed to let her navigate it appropriately.

Big changes will be happening next fall for Audrey so I’m looking forward to soaking in this last half year of preschool.

Kinder is a whole new ball game… one I’m terrified of. One that I know very little about.

So many new programs and staff.

I know we will get through it though just as we have the last four years.

Happy holidays!

Hoping for a healthy new year where we continue to #kickCASK.

As I lay here putting my almost 5 year old to bed (still on my chest), I can’t help but reflect on the day.

I dropped Audrey off at school, picked her up, fed lunch and headed out for a long walk to the park where she only wanted to swing. (We are in a big swing phase)

At the park there were two little girls about Audrey’s age. I watched as they laughed and swung together on the “big girl swings.”

Audrey instantly lit up when they came over, she loves watching other children play. As I pushed her on the bucket swing, I couldn’t help but wonder what she was thinking. Was she trying to talk to those girls? Was that what the giggles and smiles were about?

After a particularly loud squeal from Audrey, one of the little girls said to me “ I have a baby sister.” I asked her how old and she said “she’s two.”

This broke my heart a bit because I realized she was telling me this thinking Audrey was a “baby” just like her sister.

There were no follow up comments or questions but I felt the urge to explain that Audrey wasn’t a baby. That she was swinging in the bucket swings because she loves them and needs a little extra support. That her squeals weren’t baby squeals but that was how she was letting us know she was happy.

Of course I didn’t do any of that. All I did was smile and wave at them as I put Audrey back into the stroller.

On the walk home, I couldn’t stop thinking about what that little girl’s day might look like. How different it must be from ours.

When we got home, I spoon fed Audrey her snack and then got her changed for her afternoon therapy session.

The level of support my child still needs is something I never pictured as a mom but here we are in this different world of ours.

The world of teaching self help skills, researching therapies that may help, appointments for new orthotics, watching the same two shows year after year and very little sleep.

But it’s also a world filled with so many snuggles, park dates on the bucket swings and endless dance parties.

My hope is that one day I can share with others that different is just that. Not better, not worse, just different ❤️

I can’t believe my baby is 4.5 years old. How did that happen? I remember when I was a kid my parents would always say that time flies. I never really understood what that meant until I became a parent myself.

The days are long but the years are short.

This summer has definitely been the mentally draining. I went from getting use to a daily two hour break (while Audrey was in preschool) to being back with her every minute. This was especially rough these last three weeks during her intensive therapy. Driving to therapy, watching her struggle in therapy then realizing I still had the rest of the day to occupy her tired body took quite a toll.

Next week we return to our regular schedule. This includes preschool Monday-Friday, ABA therapy Monday-Thursday. STEPS therapy 2x a week and additional OT 2x a month. Wow.

Sometimes I can’t believe how many things I drag Audrey to. Some days it hurts my mama heart. Some days I want to quit. Do I push her too much? What would it be like to have a less busy schedule and only do things she wants to be a part of?

The truth is, although I know she benefits from these programs, sometimes I have to look at the big picture. Is it worth it? Does she get any joy out of this? As Audrey’s number one advocate, it is my job to make these decisions with her best interest at heart.

I’m slowly trying to make accommodations in her schedule that balance out all the “work” with just the right amount of down time/fun.

Like most children, Audrey thrives on routine. I do know that most of the time, it is worth it but sometimes it’s okay to take the day off or even drop a service if it isn’t working out.

We will see how this fall schedule goes and I will adjust accordingly.

Navigating this special needs world is a constant whirlwind but the thing I’m learning to accept is that it’s okay to need a break. Everyone deals with life stress differently. Everyone has hard days or years. You have to do what works for your family. Period.

Audrey thriving is and always will be my priority. But her happiness is number one.

We will continue to #kickCASK this fall as usual. Stay tuned for more Audrey Adventures.

I continue to be amazed by the resilience my daughter has. Our first year of preschool is coming to an end. What a journey it has been! Besides getting every virus out there and spending way too many sick days home with me, Audrey has thrived. She started preschool this January in a moderate to severe SDC (special day) class. It runs Monday through Friday from 8:00 am to 10:30am.

Once I pick her up, we head straight home for three hours of ABA therapy. This means that until 2pm, Audrey is having demands placed on her which work her mind and body thoroughly. Some days she has additional therapy after ABA. After seeing the toll this schedule takes on my four year old (and myself), I have decided this summer that we will be taking Fridays off. No therapy, no schedule, a day to have zero plans. A day we get to do something fun, or nothing at all!

I’m proud to say that as much as Audrey has grown this year, so have I. I have learned to go with my gut and believe in myself. I pride myself on advocating for my daughter and the number one way to advocate is to truly believe that I know my child best. No matter what a doctor, therapist, teacher, or friend may suggest, at the end of the day, my decision is exactly the right call for our family. I’m learning to be confident in these decisions and realize I’m doing my best regardless of the crazy learning curve that is constantly being thrown my way.

Although Audrey will not be in school this summer, she will continue to have a very busy schedule. ABA four days a week, weekly horse therapy, weekly OT, possibly some treadmill training in July and we will be back at our amazing intensive PT in August! I am excited for all the potential growth this summer. In between all the work, we have some fun adventures planned. Hiking trips, lots of family time and a few beach trips are on the calendar as well.

As I look back at the year, I am so proud to see the gains she has made. It hasn’t been easy, our rough days came in waves but we had some really great moments too.

Some of Audrey’s 2019 highlights so far:

1)She has tried SO many new foods and continues to be interested in things outside of her comfort zone.

2)She continues to get stronger, able to walk (assisted) further distances when in the right mood.

3)She has learned to interact with peers every day at school and tolerated table time activities without as many behaviors.

4)She has adapted to being exposed to new people, environments and schedules.

The three biggest goals we have for this summer are to continue to work on her adaptive living skills, of course walking and really trying to target effective communication.

Stay tuned for all of our #kickingCASK updates this summer.

The majority of our life is a guessing game. Is she getting sick? Is she acting out because she can’t communicate or is she just being a stubborn 4 year old? Is something hurting her? Is her day going to be completely thrown off because her sleep was so horrible last night? If she seems fussy and tired during her therapy then I have to decide if we push her or let her take a break.

On a daily, or often hourly basis, these are a few of the questions I have to ask myself about Audrey. If there are not any visible cues, we can’t be sure of the answers.

There are a select few individuals that can trouble shoot what may be wrong but even then it doesn’t have a very high success rate. Because of this, it makes it very hard to fully rely on others to help take care of her. There are so many unknowns and guesses with our girl. We have found that routine in her schedule works best so we try to stick to that as often as we can.

Thankfully, the good moments definitely help balance the difficult ones. I’m learning more and more to go with my gut. If that means taking a day off of therapy, than that’s what we do. It’s hard to know what is best in the moment but I guess that’s what parenting is all about. Making a decision and sticking to it.

March has been busy and full of promise. Audrey seems to be getting much more confident with standing and hand held walking. We are finally in a good school and therapy routine. She started a social group with her ABA company once a week, which she loves, in addition to her other therapy. We made it through her first bad sinus infection last month and are looking forward to sunshine that allows for more time spent outside.

We continue to #kickCASK even when we feel like giving up!

Wow. I can’t believe my baby is four years old! That means we have had four years of her smiles, giggles, cuddles and lots of good days. It also means we have had A LOT of sleepless nights, doctor visits, too many hours of therapy to count and many many hard days.

One thing I have learned these past few years is that there is no right way to heal from a traumatic situation. No magic amount of time. Moving forward, no matter how slow, is all that matters. Some people are proactive, some are in denial and others (most likely the majority), are a mixture of the two.

There are mornings I wake up confident that I have made all the right choices to making sure Audrey thrives. Other days I feel like we just received the diagnosis, unsure of what to do next.

This past month has been full of change. New school, new therapists, a whole new schedule for myself and miss Audrey Jo. It’s taken a bit to get acclimated to it all but one thing that doesn’t ever change is how amazingly resilient my child is. She rises above and continues to surprise me every day. I am so thankful for those moments because without them, I would definitely be more in that denial stage as her parent.

Finding a balance between school and all her extra therapy hasn’t been easy but we are all adjusting.

Some things I’m focusing on in 2019:

To not be afraid to say no to things. If it makes me uncomfortable or doesn’t fit my families needs, no is the only answer!

To not be too hard on myself, or Audrey! Life happens… some days are going to be better than others!

Focus on little things that need improvement. Incorporating one new goal that I do once a day with Audrey versus looking at all the things that we need to practice on. (This is a hard one!).

Continue to accept our life as it is and try my best to not compare.

As always, keep #kickingCASK the best way we know how!

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 ❤️