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.

Nearly 5 years ago we brought our sweet little Courtney home from the hospital. I was a ball of emotions that day. The books don’t prepare you for the emotional roller coaster you go through at the beginning. I kept breaking into tears. I vividly remember my older sister calling me that first night home and right after she asked how I was doing I became an uncontrollable sobbing mess. Some how in between the sobs I was able to tell her that The hospital sends you home with this tiny human being trusting you will know what to do. I suddenly had no clue. My sister , mother of 5 boys, reassured me by telling me she had the same emotions bringing home her boys. I decided to trust her in knowing that I had this.

Nearly 5 years later, as I put Courtney, my non-verbal 4 year old with autism, on the bus for her last day of summer school and then watch my little 2 year old miracle child sit on the bottom step putting her own shoes on, I broke into tears again. (For the trillionth time since that night when I first brought her home.)

Ok, Cheri, you were right. I’ve got this. I’ve got this motherhood thing down. Don’t worry, I know the ups and downs of parenting has just begun, but I’ve got this.

A little shout out to both of my sweethearts…Courtney, I’m so proud of you for handling summer school like a champ. I don’t give you a break. Most kids at your age get to enjoy a couple of months of summer. You get 1 month and even then, half of that month will be spent in hours upon hours of play therapy. Alyssa, I’m in awe of your strong personality every day. You are such an awesome little sister to Courtney and a joy to be with all day (even during your tantrums). I’m so proud of how you are handling your health issues as we figure out your food allergies. Girls…we’ve got this!

I look at pictures like these and I can’t help but think of how far the two of them have come the past 3 years. Let me rewind three years…

Three summers ago Courtney was 22 months old. She had zero words (though if you were really lucky, you would hear one), not responding to her name, not interacting with other kids and pretty much in her own world. Happy and healthy and meeting all milestones except language ones.

Watching Courtney regress wasn’t the hard part. The hard part was convincing Joe that something was up with his little girl. At this point I was just trying to convince him she needed speech therapy. Three summers ago there were so many arguments and so many tears over it. At this point I suspected autism and I did throw that label out there in discussions but I had to back off and just discuss her language delays. It made me so mad that he didn’t trust my opinion being that I had spent so many years teaching children with autism.

He finally agreed to looking into private speech therapy. I decided at this stage that o really needed to be careful about using the word autism around Joe. He wasn’t ready. I remember telling her speech/language therapist that I suspected Courtney had autism but not to use the word around her dad.

A year later, by the time we were about to get her evaluated through the school district and by a developmental pediatrician he was a little more ready to hear the diagnosis of autism. But he still felt strongly that all it was going to take was a year in preschool and she was going to be talking up a storm and acting more “normal”. Though I would get frustrated with his lack of true understanding of Courtney and her development, I had a better understanding that joe needed more time to come to terms with it.

It took time but he’s there. He now is just as much of an advocate for his little girl as I am. He gets her. He understands her needs and why she has these needs. Thanks to Alyssa being such a mommy’s girl and having separation anxiety, joe and Courtney have formed a special bond. I love capturing moments between the two of them. The moments where you can see that she loves her daddy so much. I’m so proud of both of them!

What does S.I.B. stand for? Self injurious behavior. Meaning injurious behaviors that you do to yourself such as biting yourself. Courtney has S.I.B’s and they come in the form of biting her hands and arms. Mostly she does it when frustrated and or to escape something that is too hard. Or even to escape something she doesn’t want to do. You may have noticed in some pictures that Courtney wears a red object on her shirt. That is a chewy and it’s there for her to chew on in hopes it decreases the biting. Overall it does. She chews on that thing all the time. Wish her arm wasn’t her go to but glad we have something to help decrease it.

So things like changes in routines, over stimulation, new places can set her off and cause this behavior to increase. That includes something like a 4day vacation at a fancy hotel with fancy dinners. So needless to say, as much as we have had a fantastic time on our trip to Mackinac Island, the picture I’ve been posting have hid some of the frustrations. Here’s a picture that shows the behind the scenes of taking a child with autism out of their comfort zone…

Those are bruises on Courtney’s arm from her biting herself. Scares me because someone could mistake those as my hand marks. Breaks my heart that she bites herself hard enough to leave bruises. These weren’t just from our vacation. We’ve seen an increase since her summer break has started. It took my friend to remind me that summer break brings lots of changes. Change in schedule, change in teacher, mom and dad home…all things that can set behaviors off. The last full day of our vacation is when it was at it’s worse. She bit herself over and over again. She even tried biting joe, Alyssa and I. I said at dinner that you can almost see it in her eyes. To me, her eyes looked like she was ready to attack. There was a dark look deep in those eyes. She had hit her limit.

Some how we made it through the dinner. After dinner she went after Alyssa again and that’s when I decided we needed to separate them for a bit. Courtney and I went back to our room where I let her just relax and play while Joe took Alyssa to the porch of the hotel where she got to charm all the adults in the hotel. Courtney relaxed almost immediately. My heart was happy again. Killed me to not spend our last few hours together as a family but knowing both girls were happy doing what they needed to do made me feel better.