Three weeks ago I was headed to Michigan with Joe and I got a phone call from Courtney’s school saying she seemed uncomfortable as if maybe she had a UTI. Three weeks ago I cried via texts messages with our nanny as Courtney was catheterized I order to get a urine sample. The past 3 weeks she has even to the dr 3 times, I’ve talked to doctors/nurses so many times that I’m pretty sure they know my phone number by heart. We’ve gotten positive then negative then positive then negative urine tests. She completed 10 days of an antibiotic. In the past 3 weeks I’ve seen my daughter cry in pain and bite herself to the point where she has bruises that look like she’s been abused. I’ve received texts and emails from school and caregivers who have seen the same behaviors. I’ve left work twice and have taken other days off. Yet I sit here with no answers.

What have I learned though?

I’ve learned that being her voice is my most difficult job title of all but learning to be her voice has made me so much stronger.

But the biggest thing I’ve learned through this whole ordeal is the importance of building a network you trust. Courtney requires a network of specialists. Specialists from therapists like speech, feeding to doctors like dentists, gastrointestinal doctors, developmental pediatricians and regular pediatricians. Finding these specialists for a child with special needs is so much more than googling pediatricians in your area.

After the last 3 weeks I have learned that I have not found the right pediatrician for Courtney. This whole ordeal has been beyond frustrating. I can’t even begin to explain what it’s like to watch your daughter experience pain and have no way to express that pain except by inflicting pain on herself and others. Today was the icing on the cake. After spending 90 minutes at the dr trying to get Courtney to pee with no success, it became evident the Dr knew nothing about her because she asked several times if Courtney was saying it burned when peeing. The doctor talked to her as if she was typical. Then we were sent home with a cup for her to pee in with no answers.

So here we are, 3 weeks later and still no idea why she has moments of pain. No idea how to help her and now On the search for a new doctor.

Back in March when we first met Ms. Christine, she made sure to explain that she doesn’t force the children to get on the horse. I knew that was the gentleness Courtney was going to need for horse therapy to be successful. Several sessions later (a few including a lot of tears) I questioned if she would ever get on the horse. I loved spending the time together as a family and I was able to see Courtney’s comfort with Bumble growing so I kept trusting that the day would come.

As I have shared, that day came finally in June and since then, Saturday’s at Hands, Hooves and Hope Ranch have quickly become my family’s favorite time of the week. We’ve gone from wondering if we will get through the session without tears to will she ride Bumble again today to which girl will want to get on first. Courtney’s eagerness today was beautiful! I got her out of the car and she immediately left my side and quickly headed towards the stable. She greeted one of the volunteers with her giggles and was ready to start. It melted my heart after the tough two weeks we’ve had.

Horse therapy isn’t just about getting her comfortable with Bumble now. BOTH girls are working on getting Bumble to go and stop. Ms. Christine is teaching Courtney to either tap Bumble or to verbally say, “go”. Each session it takes less and less to get Courtney to say, “go”. I love hearing her use that sweet little voice of hers to communicate. We didn’t get it n video, but today she even told Bumble to stop!

I am so glad I let myself trust Ms. Christine that this comfort level would eventually for Courtney. Can’t imagine the joy we would have missed out on if I gave up months ago.https://videos.files.wordpress.com/a9mRx1Ji/img_1706-trim.mov

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!