Maybe I’m making it bigger than it is but I feel 5 years old is a big milestone for a child. It’s the transition out of the toddler stage. It’s the year a child is old enough to go to kindergarten. All those big milestones a little child is suppose to reach have been reached. 5 year olds are starting to make those friends that will become their best friends. They are starting to make those memories that they may actually recall when they are a grown adult.

Working in a preschool with children with special needs, we hear parents talk about us getting their child “caught up” by kindergarten because that is when it really matters. When Courtney was first diagnosed and we were signing up for preschool, joe was saying the same thing as some of these parents. “She’s just going to need a little bit of help and they will have her all ready to be in a regular kindergarten class.” I knew differently.

The big 5 for Courtney is on Wednesday. 5 years old! My little baby girl is 5 years old. But here’s the thing. She may be chronologically 5 years old but in every other sense she is not 5 and for some reason, this year more than others, it is hard to swallow.

Most moms get sentimental on their child’s birthday. Another year has gone by faster than you can imagine. Birthday posts of children usually contain the hashtag #growingtoofast or #slowdown. I agree with those hashtags but I also get emotional because a Birthday also reminds me how far behind she is and also makes me feel like the gap just grew some more. It reminds me what milestones she has not met. It reminds me how steep the mountain still is. Courtney has made so much progress the past few years and I am able to focus mostly on that. Though when it comes to a day where most moms get a little sentimental, having a child with significant needs adds some additional emotions to the day.

As much as I’m an open book when it comes to being an Autism Mom, I’m sometimes hesitant to share the really bad parts. Whether it be a bad day of hers or even a day where I’m just not as emotionally strong. I’m hesitant for several reasons. The main reason is I like to focus on the good. Keeping a positive attitude is the key to living this crazy life. But I also worry that I may sound like I’m looking for people to feel sorry for me and that’s so far from why I share my journey. But if this blog is to truly reflect the journey then maybe it’s important to share the tough moments.

So here it is…

You know that grieving process people go through when they lose a loved one? You go through the same process when having a child with significant needs. Why? Because it’s natural to grieve the loss of what you hoped you would have. Every parent hopes for this perfectly healthy child. The child that you would watch grow through all the “normal” stages of life. When you find out your child will be on a different path because of special needs, that hope dies. Doesn’t mean these parents love their child any less but it still stings.

Like the grieving process when you lose a loved one, it’s different for everyone, the stages don’t go in any order and certain stages will hit you like a ton of bricks even years later.

I can’t pin point why, but I’ve had moments recently where I’ve been teetering between angry and depressed. I said it today to someone, “My daughter has autism, this is my life and it’s daunting sometimes to think this is never going away.”

I can not predict the future but the likelihood of her needing to be completely dependent on us for the rest of our lives is high. Swallow that one. I may never be able to spend a weekend away without wondering who will take care of Courtney. We likely will be juggling this crazy therapy schedule for many years to come. Joe may never be able to walk her down the aisle and Alyssa may never have a niece or nephew on our side of the family. Yep, it’s a grieving process.

Most days I don’t let myself fret about that far in the future because honestly, there’s no way to know for sure and time is too precious to let it bog me down. Heck, I can’t even predict Alyssa’s future. But then there are days where these thoughts smack me in the face. It’s the ugly side of autism. I let these moments hit me, take my time to grieve and then remember how far we have come in this amazing journey.

Before I get messages and phone calls from my parents, I am fine. I am happy and life is good. Just sometimes, autism sucks and It’s healthy for me to share that side too.

Yes, this is a picture of Courtney playing on the bathroom floor with her therapist. Before I get responses of ick…you let her play on the bathroom floor. My husband is ocd when it comes to the cleanliness of our floors. And I’m pretty sure our therapists will agree to this. You can eat off all floors in our house he keeps them so clean!

Back to why she’s playing in the bathroom…

Last fall we started slowly introducing the idea of going on the potty to Courtney. Through out the day (mostly during therapy sessions) we would put her on the potty to see if she would go. She was accepting of this and we had success. If the timing was right, she would go!

In the spring we noticed aggressive behaviors were increasing specifically during the times we were trying to get her to use the bathroom. As I have mentioned before, Courtney does not like the sound of running water. (Ask me sometime how showering went during our trip to Connecticut in a cottage without a tub 😩.) So this strong aversion to the bathroom could be related to washing hands or using the toilet. Whatever it is, she does not like the bathroom on our main floor. So, to work on this, we are bringing fun back to this bathroom. Our home therapists been some time in each session just playing in the bathroom. It started off playing outside the bathroom because she wanted nothing to do with it. They are also working on water play in the sink to put a positive connection to running water. Hopefully we will be able to start working on potty training again. I wonder a lot if we will ever be able to get her potty trained. It is something mom’s of children with special needs stress a lot over. Until then, we will take each day as it comes.

Courtney was super agitated today. She had a tough 2 1/2 hour session with one her home therapists. Struggled during occupational therapy. On and off whining the whole hour ride to the ranch to see our favorite horses. The agitation magically stopped as soon as we were with our favorite pony, Bumble.

I was asked one time what Riding Therapy was like, what did they work on, how does it help children with disabilities? I explained how it is so much more than just learning to ride a horse. I had mentioned to another person that Courtney has made so much progress with horse therapy and they asked, “how has it improved, is her posture better?”. Again I replied that it’s so much more than riding. When asked by both of these people, Courtney still hadn’t gotten on Bumble by herself.

In the pictured I shared above above the top picture is of Courtney at our second session. It’s hard to tell, but she is crying as she was petting the pony. I questioned why I was making her do this the first few sessions as she cried through them. She was so overwhelmed by the new experience, the noises, the big animal but we stuck with it knowing you can’t give up so early. After a change in location that ended up being much more conducive to her sensory needs, we finally started making progress.

Progress in what? Progress in her ability to tolerate the different noises in a barn, her ability to tolerate being around a big animal, her ability to follow someone’s lead, her ability to hold on to the rope. And now…we can say she’s made progress because she now rides Bumble without me! Just look at that bottom picture! That’s the same girl that was crying in the top picture because we had her touch the pony. And it’s the same girl what was whining out of frustration all morning. Horse Therapy is magical!

Ms. Christine has been so amazing with us this whole journey. Watching her work with both girls with different approaches based on their needs and in both cases in a loving way. Let’s just say there are few people that Alyssa will go to when I’m around. Ms. Christine is one of those people. I sat back today and watched Ms. Christine and her volunteer work with my girls. That’s progress! It’s more than just learning to ride!

And…I’m truly learning to ride!!! I’m making progress too! I got Capone to trot two weeks ago!!! I won’t blog about how at peace I am for 30 minutes when I have my turn to ride. But I am!

It’s that time of year again. Summer break is coming to an end and another school year begins. It’s been a fantastic summer. A very busy one for our little Courtney, but she managed it like a champ! Yes, Joe and I realize how blessed we are to both get summers off together. It makes it so we can do some fun things with the girls. N between hours upon hours of therapy and summer school, we had fun spending time at our favorite pool, visit with friends and family, girls enjoyed playing at the child center while I worked out, Alyssa took to classes with the park district and Joe and I had a few date days thanks to our awesome nanny.

We also had two amazing trips. One to Mackinac Island, MI and the other to Joe’s family beach house in Milford, CT. So much fun was had on both of these vacations. We are enjoying making both of these spots our summer traditions. I think what really was beautiful to see was how at peace Courtney was when she was exploring in the ocean. It was a true sensory experience for her. She spends hours upon hours in therapy and school. She finally had 10 days without therapy and school and I think the ocean ended up being the best therapy yet. Side note…we are not moving to the ocean!

We are now home, which brings us to the school year starting. Our family thrives on routine so I think we are all ready for school to start. I spent a good portion of the summer stressing about Courtney’s 3rd and final year of preschool. At the end of last school year we found out both her teacher and the principal were leaving. As much as I had mixed feelings about both, them leaving made me more nervous about Courtney having to get to know a new teacher, a new routine, and me having to build up a new trusting relationship with them. Shortly before we left for Connecticut we received news that Courtney would have the teacher she had her first year! HUGE sigh of relief!!!

Now you may recall I struggled with communication with this teacher. As that year went on and I learned to open up and advocate for Courtney, the teacher communicates more with us and I ended up loving her. It also helped to see how much she TRULY loved working with our little girl. We also received news that the speech therapist that has worked with her the past two years will also be working with her again. We adore her so again, we are thrilled.

We still have our frustrations and concerns about her placement but know her team will help make it work for her. Now we can spend this year making sure the district chooses a kindergarten placement that is appropriate for Courtney the following year.

But one thing at a time…

Good luck to all the children out there as they start another year!

Good luck to their parents as they send them off to school!

Good luck to the teachers as they prepare for another year!

Enjoy!

So many of you have commented how lucky Courtney is to have me as her mom. The truth is. I’m the lucky one. Both of my girls have taught me so much about this thing called life.

I wouldn’t know that love truly needs no words if it weren’t for Courtney. My almost 5 year old has never said I love you to me. Heck, she can barely call me mom. I initiate all hugs and lucky if I get a kiss. But Courtney has shown me love is shown in so many different ways. There is a well known exchange between two loved children characters…

“How do you spell love?” -Piglet

“You don’t spell it, you feel it” -Winnie the Pooh

I’m so lucky to have learned the true meaning of this through Courtney. She doesn’t say it, she doesn’t spell it, but boy do I feel it. I feel it when she lets me give her a big squeeze, I feel it as I help her calm down after a meltdown. I feel it whenever her big blue eyes actually look straight into my eyes. This morning I felt it to the point I was almost in tears. I was sitting on the couch with her but had to move to the other couch to console Alyssa. A few minutes later, Courtney got off the couch and came over to where I was and curled up on my lap. Boy did I feel that love at that moment. You are right, Pooh Bear, you feel love.

Oh girls, I love you so much!

As I’ve mentioned in previous posts, I would love to just have a few minutes in Courtney’s head. I think the first thing I would want to understand is her sensory system. Why do things like running water turn on her fight or flight system as if she just ran into a bear?

Our bath time routine goes like this…Alyssa and I go up to the bath. Alyssa will get in as the tub is filling up. Courtney doesn’t join us until the tub is filled. Why? Courtney can’t handle the sound of running water. Especially in the tub. She actually has goals with some of her therapy to tolerate running water while playing in the sink. Sounds kinda silly, right? Not when washing hands is probably one of the most important life skills!

When it comes to working with sensory issues, you work on desensitizing the person to the stimulus that is sending their sensory system to high alert. So for Courtney, doing something she enjoys doing (playing in water) while exposing her to the stimulus (running water) that sets off her sensory system helps desensitize her.

So back to bath time. Tonight was a tough one. Both girls were in the tub. They were both happy as I lathered them up with soap. Alyssa then loves to layer up anything that is in the tub. During tonight’s bath time, it was the faucet. Courtney saw Alyssa playing with the faucet and it immediately sent Courtney to fight or flight mode. I actually have been practically face to face with a bear and I didn’t react as scared as she was of the possibility of the faucet being turned on.

We some how survived the bath time. I was soaked by Courtney’s wet body trying to cling on to me as she continued to melt down. I also had Alyssa crying as she couldn’t understand why I asked her to stop putting soap on the faucet. (Mind you, she was never going to turn it on. She knows that will scare her sister.) Alyssa went to spend quiet time with Joe on the couch while Courtney and I emotionally recovered from the ordeal. I watched her with tears rolling down my eyes as her body slowly eased and her happy self return.

I have a few different people I will send a venting text to after moments like this. Tonight’s was to my friend from work. Her response was perfect…”That has to be so hard! Little things we take for granted and can block out, can be so debilitating to her.” So true. You know what, running water in a tub is loud and annoying. But I can block it out and not let it bother me. To someone like Courtney, that sound is only louder and on top of it, they don’t have the ability to just block it out.

Courtney and I recovered. We were smiling and giggling together until she finally fell asleep.

I love her look of determination and accomplishment as she stood at the top of this rock wall at a park.

As I look at this picture I can’t help think of the mountains she will climb in her life. Probably literally and metaphorically! , Some rockier than others and some steeper than others. Some mountains will be easy for her to get to the top of but some will be hard. But I have confidence she will reach the top of these mountains. We have worked so hard at building her a support system that will help her tackle these mountains. No matter how long it takes her to tackle the mountains that lie before her, we will be cheering her on and ready to pick her up any time she slips. Now for those literal mountains she wants to climb…she better slow down before she gives us all a heart attack!

Dear Courtney,

Can I have just 5 minutes in your head? Maybe, just maybe it will help me make life a little easier for you.

Those 5 minutes could possibly tell me why the sound of running water and vacuum cleaners sends your sensory system on high alert.

Maybe those 5 minutes can explain why you get so frustrated that you bite yourself.

If I had 5 minutes in your head, maybe it will help me understand why it’s so hard for you to fall asleep at night.

I would have loved 5 minutes in your head this morning. It may have given me insight of why you didn’t want to eat and you couldn’t tolerate therapy.

What’s going on in your head when you are in the midst of a repetitive play scheme? When you take one of your Brown Bear or frozen figurines, walk a lap around the family room, jibber jabber some sort of script and then repeat with the next figurine? Can I take a sneak peak then?

I feel a simple 5 minutes in your head can tell me so much. I’m sure no where near enough though. But until I can get those 5 minutes, I will continue to do my best to guess what is going on in your head. And if I can’t figure it out, know that no matter what you do, I will always love you.