To the Brookfield Zoo employee working the carousel…you showed amazing awareness and acceptance today. You saw Courtney standing in line with headphones on her ears and hands over the the headphones holding on tight as music played around her. You saw the anxiety in her face as we waited our turn. Without hesitation, you asked if I thought turning the music down would help. It wasn’t all about the music, it was also the anxiety of trying new things but I still took you up on your offer and you quickly asked your co-worker to turn the music down. Thank you!

Sir, you didn’t stop there. When doing your check to make sure everyone was seated I saw you deliberately stop at us to ask if we were doing ok. Thank you!

To your co-worker, thank you for also showing awareness and acceptance! When we got off the carousel you acknowledged (even though I felt you did plenty) that the music was still on the loud side and apologized. Not only that, you made sure I knew that we can always ask to turn the volume down on future visits to the carousel. Well…you can guarantee we will visit you two again at the carousel. Thank you for helping my daughter enjoy a ride on the carousel like all the other children.

(Picture of Alyssa on the carousel. Daddy and Alyssa were on a different part of carousel and I didn’t have my phone with me.)

This photo comes up in my Facebook memories every year and every year I’m surprised by how much it hits my emotions like a ton of bricks. Every year I cry ugly tears looking at it as I remember all the events that led up to this day. I remember exactly why I paused to take the picture of this moment.

This is more than a beautiful picture of a father and his daughter. It’s a picture of a little girl who was so lost in her own little world and so disconnected from all who loved her. A little girl unable to communicate her wants and needs. A little girl who was just shy of her 3rd birthday but in every way functioning at the level of a baby. It’s a picture of a father holding on to every hope in the world that the evaluation team inside that building will tell him that she is just fine and not to worry. It’s a picture of a father and his daughter walking into the beginning of a journey that will last a life time.

I knew what I was doing when I took this picture. I wanted it to catch just the two of them. I was ready for what was about to happen inside those doors. On the other side those doors was the end of months of me trying to convince him that our little girl needed help and lots of it. The other side of those doors was where Autism was about to become our reality.

So much has happened in the last 5 years since this picture. Time really does fly. We have all grown in so many ways since this day. The ups and downs, the steps forward and backwards, the laughter and tears have done nothing but make our family stronger. I couldn’t be prouder of our little family!

Do young siblings of children with autism also go through the grieving process? Am I grasping at straws? Am I just trying to make excuses for my child’s “naughty” behaviors? Is there resentment already at the age of 5? Does she think I don’t love her? All questions going through my head this weekend as we wrap up a week where I feel there was an increase in Alyssa’s behaviors.

The behaviors have been over Courtney’s noises. Behaviors over not having my attention because I’m helping Courtney. Behaviors over therapists being over and focusing on Courtney. Behaviors over having to be flexible because of Courtney. Anyone catching on to the theme?

These behaviors are not just crying tantrums. She gets aggressive towards all involved. They escalate fast. They go from whining to full on hitting Courtney and any adult trying to stop it in the matter of seconds.T

he hardest part of these moments is in the aftermath when she expresses to me that she hates that Courtney has autism. She asks why autism has to be in our family. She asks why she has to have a sister with autism. My heart breaks as she asks these questions.

Alyssa loves her sister. I have no question about that. But she is definitely showing us how it can be hard to be an autism sibling.

All I’ve ever wanted since Courtney’s autism diagnosis is her to have the ability to communicate. Communicate, not talk. Of course I want her to verbally talk but what I wanted was her to have a way to communicate, Communicate her wants, her needs, her feelings. I have just wanted her to be able to communicate.

Seeing that she has a way to communicate that she wanted me home when I was still at work was the most beautiful thing in the world. I may have ugly cried happy tears the whole way home.

I’m home, sweetie, and I love you too.

Both Courtney and Alyssa are in feeding therapy. Courtney has been for years because of her very limited diet and recently we started with Alyssa. Alyssa has extreme anxiety around foods because of her food allergies and we decided it was time to address it.

I am so excited to say that both tried a new food today! Pancakes for the win!!!!

Baths are a constant on and off struggle for Courtney. And when I say struggle, I mean her reaction is as if I’m torturing her with pins and needles. It carries over to not even wanting to wash her hands and a fear of bathrooms in general. We go through months of this! I wish every time I have to give her a bath that it wasn’t such a necessity in life. Nothing should be so painful for a child.

What was so mind boggling through these last few months was that before this she was asking for 3 baths a day! During that time she still didn’t like to be washed but she tolerated it. As long as we weren’t washing her she would play in the tub for hours at a time. Then suddenly a switched happened. This wasn’t the first time we went from liking to disliking. This seems to be how it works for her. For several months we like it and then several months we dislike it. The switches were just more extreme this time.

Thankfully, it appears the season of hating baths is coming to an end again. The switch from hating it to liking it is more gradual. You can physically see her trying to overcome the extreme anxiety. She will ask for a bath and then once it is filled she can’t overcome the anxiety enough to actually get in the tub. We have spent a couple weeks at this point. This past week she finally overcame that anxiety and is now getting in the tub after we fill it. She did it!

Watching her enjoy playing in the tub is beautiful because I know she had to overcome so much to get there. Welcome back phase of loving to play in the water, we missed you! Do me a favor though…let’s stay this time.

Recently I received an email from her teacher that they were excited share that they were going to start working on mainstreaming Courtney into the regular first grade for 30 minutes a day. I’m guessing most parents of children with special need’s would start jumping for joy. I did not. I wanted so bad to jump for joy, I really did. But instead I felt nothing but concern and doubt. this wasn’t completely sprung on me since we did talk about it at her IEP meeting but it still didn’t feel right. Especially during a time where her anxiety and aggression has been high.

I’m a special need’s educator. I’ve seen mainstreaming in action. I’ve seen amazing things with mainstreaming and inclusion and I’ve seen horrible things. I’m a firm believer that if a child can handle it in any sort of way, it should be tried. I am also a firm believer that it is not for every child. I’ve always questioned if Courtney is truly cut out for mainstreaming. I can’t help but wonder if that time can be better spent on more 1-1 instruction.

I ended up emailing the teacher first thing Monday morning explaining my hesitation. I also told her that I do have faith in the team and that they wouldn’t push her if she wasn’t ready. Of course the teacher reassured me that they will back off if they see it’s too much.

Every day this week I waited for that message that said she couldn’t handle it, but each day I heard the opposite. Courtney did well. Courtney was happy in the other class. Courtney did ask to “go” early but did well while she was in there. Then on the 4th day in her bag was this beautiful portrait with a sticky note that said, “made for Courtney by a first grade classmate”. This picture captured Courtney beautifully! Her brown hair, her big eyes, her pink headphones, the blue and white polka dot mask that sits below her nose. My heart melted.

Here’s the thing. Mainstreaming and inclusion isn’t just for the child with special need’s. It’s for the “typical” children too. I want other children to accept Courtney for who she is and for that to happen, they need to spend time with Courtney. I wish I didn’t have so much doubt at the beginning of the week but I’m ending the week filled with joy that it went well!

7 years ago today we started Courtney with her helmet to correct her plagiocephaly (flat head). The stress to get to that day was unreal…or so I thought. Joe and I were in disagreement about the helmet so there were a lot of tears and arguments leading up to that day. 7 years ago I thought that was quite the bump in the road. Boy was I wrong! Oh the adventures she has taken us on!

It’s 4 a.m. and I sit here in my bed more than an arms length from Courtney. She’s giggling now as she wipes away the snots and tears from her face after a very fierce meltdown. I want to just hug her and tell her it’s all ok but not ready to trust her.

The aggression was ugly during this one. Physically going after her sister and I several times to the point where neither of us felt safe in my own bedroom. This is second bad meltdown in 12 hours. This is the second time in the last 12 hours Alyssa didn’t feel safe. I should probably let her teacher know what she went through. It can be traumatic being a sibling of a child with autism.

It’s 4:30 a.m. now and we are all awake. Calm but all awake. I lay here in between both girls as they recover from the whole ordeal by playing on their iPads.

This is when autism is ugly. This is when I feel clueless on how to help my own little girl. This is when autism wins.

Holidays are always hard no matter what the occasion is in our house. With holidays come change in routine. When routines change behaviors appear. Holidays also tend to bring on expectations of what that day should look like. When expectations are set you usually see disappointment when those expectations aren’t met.

For the most part our Mother’s Day looked like any Sunday and those parts of the day were nice. It was the part of the day that was different that lead to a pretty big meltdown. we even anticipated it being a struggle so we had a plan. The plan backfired. This meltdown was hard to watch. Heck, this meltdown hurt since she was very aggressive. I wasn’t sure how to help her. I knew why she was confused and there was nothing I could do to fix it.

Mother’s Day was hard. Heck motherhood is hard. But as hard as today was and as hard as motherhood can be, I know I am beyond blessed to be the mom of my two beautiful girls!