I’ve been struggling with blogging lately. Mostly because I feel we keep getting into these rough patches and it is so important to me that I don’t paint a negative picture of autism. I don’t want this to be the “woe is me” blog. I want to make sure that Courtney is always seen as the beautiful little girl that she is. But it’s also important to me that my blog remains authentic. I want it to educate people on what autism is. I want it to build awareness and acceptance. I believe in order for people to get the true picture of autism, it is important for me to share not only the celebrations but the tough moments too.

I was recently listening to a podcast put on by another autism mom. Her and another mom were sharing commonalities between their sons and both mentioned that their sons were not aggressive which made it so they didn’t have to worry about them being around other children. This conversation tugged at my heart because this is not the case for me. I do have to worry about her hurting someone.

A month or so ago, we were at my nephew’s birthday party that was at my parent’s house. The kids gathered around him when it was time to sing happy birthday. It just happened that Courtney was sitting right there. I was so excited that she was going to be a part of the pictures with the other kids that I let my guard down. As pictures were being taken Courtney suddenly scratched one of the other kids. Though I know the parents understood the issue, I still felt horrible.

We take the girls to the child center at Lifetime Fitness. They are great with Courtney. Our nanny will sometimes take them there too. I got a text while at school the other day from our nanny to let me know that she had scratched another child at the center and broke skin. In that one text I lost all comfort in leaving Courtney in the child center.

It scares me that this will cause children to be afraid of Courtney. Will parents be scared to have their child around Courtney? Yes, this is the ugly side of autism but on the other side there is this beautiful and sweet little girl. Unfortunately Courtney has severe communication delays and the way she has found to communicate pain and or frustration is through aggression not only to others but herself too.

I feel the need to end with this picture of Courtney and Alyssa. Courtney has gone after Alyssa several times but Alyssa continues to have no fear of her sister. Because her sister is a sweet and lovable girl.

Princess Alyssa…where do I start. I remember complaining about the terrible two’s and people warning me that the 3’s are worse. They are right! Though my 2nd born, I’m completely new to raising a 3 year old. Boy can it be challenging! Courtney did not and still hasn’t gone through this stage!

But when she isn’t busy being 3 going on 13, you see this other side of her. The side where she knows when she has to be patient with her older sister. The side where she knows when she has to be the “big” sister even though she’s the younger one. The side where she is wiser beyond her years.

Alyssa is going through a phase right now where she is refusing to sleep in her bed. We are trying our hardest to nip this in the butt but in the process it is messing up the bedtime routine that Courtney depends on. I was lying between the two of them on my bed as I was trying to get them to sleep. Courtney was getting very agitated and started scratching me. Between my tears I worked on calming her. I guess Alyssa could sense I was upset because she suddenly asked me, “mommy, Courtney scratch you?” I answered yes. She then said, “she scratch me too today but I ok.” Which Courtney had. Alyssa was being a stinker about going to sleep but after this short exchange, she suddenly curled up with her bear and fell asleep.

I think it can be easily forgotten how a child with special needs effects the siblings. They truly are expected to mature faster and help in ways that other siblings may not have to. They learn all to well that fair is definitely not equal. Their lives revolve around their sibling’s needs.

So as much as Alyssa’s 3 year old behaviors drive me bonkers, I am beyond proud of the sister she is to Courtney.

Oh Ms. Christine, if only you knew the excuses I was starting to come up with the Friday before our session. We double booked ourselves, Courtney has had a horrible week, I have had a horrible week, it’s just too darn cold…the list goes on.

Instead I sent you a message just giving you a heads up on the tough week Courtney had. I was so bummed the week before as I felt we were back to day one. Being the wonderful therapist you are, you already had a plan on how to possibly make it easier for her but assuring me that it’s ok if we take it slow.

Well you pinned it, Ms. Christine. You knew exactly what she needed. Who knew, opening the large door to open the arena more would make such a world of difference for her. I was just hoping for a happy session where she didn’t hurt anyone. Ok, so maybe the not hurting anyone didn’t happen but we got so much more (Bumble, she loves you even though she tried to attack you). We got words! Words so loud and clear I could hear them across the arena! Beautiful doesn’t even describe it!

And Ms. Christine, I love how firm yet patient and loving you are with Princess Alyssa. I will never be able to thank you enough for including her in these lessons,

What I will never be able to fully express though is what it has meant to me to let me also have lessons. My week was beyond stressful. The minute I started brushing Toast, I could feel the stress disappear.

Ms. Christine, you have given my family such a beautiful thing to do together every Saturday. A family therapy that I will forever be grateful for. Some sessions, are better than others. Pretty sure today topped them all!

Toast, Missy, Bumble, Capone and all the others, we love you too!

Oh Ms. Christine, if only you knew the excuses I was starting to come up with the Friday before our session. We double booked ourselves, Courtney has had a horrible week, I have had a horrible week, it’s just too darn cold…the list goes on.

Instead I sent you a message just giving you a heads up on the tough week Courtney had. I was so bummed the week before as I felt we were back to day one. Being the wonderful therapist you are, you already had a plan on how to possibly make it easier for her but assuring me that it’s ok if we take it slow.

Well you pinned it, Ms. Christine. You knew exactly what she needed. Who knew, opening the large door to open the arena more would make such a world of difference for her. I was just hoping for a happy session where she didn’t hurt anyone. Ok, so maybe the not hurting anyone didn’t happen but we got so much more (Bumble, she loves you even though she tried to attack you). We got words! Words so loud and clear I could hear them across the arena! Beautiful doesn’t even describe it!

And Ms. Christine, I love how firm yet patient and loving you are with Princess Alyssa. I will never be able to thank you enough for including her in these lessons,

What I will never be able to fully express though is what it has meant to me to let me also have lessons. My week was beyond stressful. The minute I started brushing Toast, I could feel the stress disappear.

Ms. Christine, you have given my family such a beautiful thing to do together every Saturday. A family therapy that I will forever be grateful for. Some sessions, are better than others. Pretty sure today topped them all!

Toast, Missy, Bumble, Capone and all the others, we love you too!

I recently wore my sweatshirt that says, “Rocking the Autism Mom Life”. Though not intentional, it was appropriate as I took that morning off at the last minute because of an extremely rough morning with Courtney. I jokingly said I should put the word “not” on it because this week I didn’t feel like I was rocking the autism mom life.

Overall this past week has been rough. We are seeing an increase in behaviors again and it’s quite evident again that she is experiencing discomfort. The bruises on her arms from her biting herself are worse than ever. Her own little sister has marks on her face from these meltdowns. Even got a note from school asking me to trip her nails because she scratched the adults several times.

Watching her have these meltdowns this time around causes so many emotions. I can’t help but think, “not again”. I can’t help but fear that we have several months of this being that’s what happened last time. I worry about the regression we may see if it does drag out. During phases like this I have to be on high alert just laying next to her as I don’t know when she will get aggressive. Can’t even explain how it feels to not feel safe to hug your own little girl.

This week I didn’t feel as if I was rocking the autism mom life. This week I didn’t feel I was rocking the autism teacher life. But there is no time to beat myself up over it. I have to keep remembering that I am doing the best I can. We got through this in the fall and we can get through this now. This is autism.

Some may be wondering where all the posts have been about horse riding therapy. We were on a little break because our therapist was on maternity leave.

Today horse therapy was back in our schedule. It’s been more than 2 months since we’ve had a session. Within that time, the horses also moved stables. So with the break in consistency and the change in location, our day back on the saddle didn’t go well for Courtney.

It started right away with her not wanting to go in the arena. I was hopeful it was just the new place. Ms. Christine brought Bumble outside to her and she wanted nothing to do with him. So, we watched Alyssa and Bumble from afar. We are back to the beginning. I am not surprised nor will I let it frustrate me. This is autism.

Horses aren’t the only thing we are back at. Something else has reared its ugly head. Boy am I hoping it was just this weekend. Courtney had several meltdowns today. Each meltdown included screaming and grabbing between her legs and acting as if she had to pee or poop. Each meltdown I tried to calm her while in my head I was saying, “not again, please don’t repeat the fall”. Cross your fingers it was just a bad day.

Recently I shared that I was worried we had Courtney in too many hours of therapy/school. It concerned me that some of the increase of behaviors was her trying to tell us that she needed a break.

It was unplanned and more hours then I would ever cut, but she got her break. Over 2 weeks ago we received news that there was some issues with our insurance and her home therapies (ABA) will be on hold until it was figured out. This is the therapy that comes to our house 15 hours a week! The therapy that helps keep structure in our home and works on keeping Courtney grounded. So to say we have missed this therapy the past two 1/2 weeks would be an understatement.

During this time I’m pretty sure Courtney has started sitting still even less, started climbing and jumping from higher heights, and I’ve noticed a lower tolerance threshold. We have caught her climbing our banister I’m a spot where she could have fallen several feet, standing in the toilet, and even attempting to get in a medicine bottle.

I was hard on myself at times. How, as an autism teacher myself, can I not structure up her time at home so she can be a little more grounded…literally?!

So needless to say, we were super excited and relieved that ABA therapy was back today. Though not fully yet. There are some issues that need to be worked out still. But we will welcome any structure we can get.

Every mom does it. Every mom spends time looking into the future and wondering what their child will be like as an adult. Will they find a wonderful spouse, a good paying job, have a family, where will they live, will they be happy? You too have probably lied awake at night finding yourself thinking about this. You too probably asked yourself why the hell am I thinking about this now instead of sleeping?

My brain started thinking about the future after Courtney woke up in the middle of the night. I brought her to my bedroom as I always do because she really does not like to be in her bed awake. She was super agitated and took a couple swings and kicks at me. It was after a couple hits that my brain started thinking about the future. Though I wasn’t asking myself if she would find a wonderful spouse, it was will there come a time where she is too big and strong for us to handle. It wasn’t will she find a good paying job but will we have enough money saved up so Alyssa doesn’t have to feel financially burdened by her older sister. I did start thinking about where she would live but not the same way others are wondering. I was wondering who she would live with or what home would she live in. I did everything in my power not let me brain ask these questions. She is only 5. A lot can happen in the coming years, but it’s hard not to look into future sometimes.

Courtney was up for over 2 hours. During these 2 hours my brain was thinking about so many things. As time passed, Courtney fought sleep harder and you can just feel her agitation. I finally pulled her close to me. As close I could. I wrapped my arms around her tight and started taking slow deep breaths so she can feel the calmness. There is something I noticed with Courtney very early on when she was an infant. She could sense when I was anxious and it would make it very hard to calm her down. So as I shut my thinking off and took slow deep breaths, I could feel her body relax until finally she drifted asleep. This moment reminded me that as much as it is hard not to think about her future, it is more important for me to make sure she knows that right here and now she is safe and loved. That right now, I will do whatever possible to help her succeed and navigate this crazy world so her future is as bright as she deserves it to be.

Courtney and I did a mommy and tot gymnastics class when she was 2 years old. Long story short..,it was a disaster. It was that class that really opened my eyes on how different Courtney was. It was more than a speech delay. She was not developing like her peers in all areas (except physical). It took one day of class to see this. I called my sister in tears on my way home from that first class. All I could get out was, “she’s that child”.

I’ve never done another park district class with her since then. Too afraid to. Having that thought process is sad because I know there are programs out there that will meet her needs.

I got a video from her teacher this week that may help me change my mind. Maybe, just maybe she’s ready for some type of gymnastics class. This video is of Courtney at school in gym class. She is doing what her peer next to her is doing. For the brief 6 seconds of this video, Courtney looks just like her typical peer. Courtney is participating like her typical peer. It’s just 6 seconds but it’s a beautiful 6 seconds. Sounds corny but it’s 6 seconds that finally let me forget about how frustrating and disappointing that gymnastics class was 3 years ago.

After her teacher sent me the video, I shared with her the gymnastics story and how beautiful it is to see Courtney participating in a gym class next to her peers. She was so thrilled she was able to capture the quick moment for me.

Pretty sure I have watched this video 100 times now. One proud mommy!

I workout at LifeTime Fitness regularly. A couple days a week I do an early morning workout there. Today was the first time back at my early morning routine since before Christmas. As I do every time this year, I noticed there were double the amount of people at the center than there usually is. New Year’s Resolution time! And as the weeks go by, that number will slowly decrease as people start breaking their resolutions.

I’ve made many New Year’s Resolutions over the years. Most I didn’t stick with, but a few I did. For many years now I’ve decided not to because honestly, what’s the purpose? We just break them in the end. I made one this year. A very important one and one I will do everything in my power to stick to.

Over the past several months we have seen regression in Courtney’s ability and or willingness to communicate with her talker. Not surprising with all the medical issues she was having. Surprised or not, it still breaks my heart. To teach baby’s to talk you model by speaking in their language to them. So for Courtney, I have to speak to her and show her how to speak using her talker. It is easier said than done and I don’t use her talker nearly as much as I should. So my New Years Resolution is to use it more. If I expect her to use it then I need to use it. This is one resolution I don’t intend to break!