Just about 5 years ago this young lady walked into our house ready to take on the position of our nanny. It was at a time where I myself was still trying to figure out how to be a mom of two children under the age of 3. It was at a time where autism was just becoming our reality. It was at a time where we had yet to leave our girls with anyone but family. Little did I know at that time, that young lady was going to become a very important part of our family.

Savannah took on the role of our nanny better than we could ever imagine. She helped them meet milestones, she took care of bumps and bruises, she held them when they cried, she took cate of them when they were sick. She changed thousands of diapers. She took them to therapies. She endured more scratches, bites and pinches than anyone should have to endure. Heck she even helped me with middle of the night wake ups.

After a year hiatus during the 2019-2020 school year we were able to convince Savannah to come back to help us through what quickly became the worst school year ever. The pandemic school year. She went from being the nanny to being the teacher. She took on the job of helping the girls with virtual learning and she rocked it!

Our needs are changing this coming school year. The girls will both be in school full day so we no longer need a full time nanny. Savannah left today to move across country closer to her mom. Saying good-bye was hard. How will we ever find someone as amazing as her? We didn’t just say good-bye to our nanny though, we said good-bye to one of our family members.

Fortunately good-byes don’t need to be forever. She has already promised to make some special trips to help make sure Joe and I are still able to get away for overnights. Thanks to technology there will be FaceTimes and many pictures shared.

So thank you, Savannah, for being the Best. Nanny. Ever!

When we became parents one of the many decisions we made was we were not going to let our kids share our bed at night. Not because we think co-sleeping is bad but because we didn’t feel it was best for us. With both girls I worked very hard at making sure they slept in their own bed. That is until my sleep deprivation got in the way of me being able to function.

It started off where they would come in to our room in the middle of the night but as I realized they slept better in our room I stopped having them sleep in their room all together. Why? Because a rested mommy means a happy mommy. Happy mommy means a happy family. This became what was best for our family.

Alyssa’s reason for coming into our room at night was because she was afraid of monsters. After several months of co-sleeping we decided to try to get them back in their room. Alyssa became very anxious about the idea because she was afraid of monsters. We tried a couple different things but we read the idea of “monster spray”. That idea backfired big time. If you need monster spray then there really must be monsters in the room! So not only did she become afraid to sleep in her room she was afraid to step foot in her room without someone with her. So co-sleeping continued.

This has been our way of sleeping for nearly two years now. Unfortunately it’s no longer working as it is affecting everyone’s sleep, especially Alyssa’s. And the saying, happy mommy, happy family? For us it’s sometimes seems like happy Alyssa, happy family. If she isn’t getting the sleep she needs, she becomes very unpleasant.

With the help and encouragement of Alyssa’s psychologist, we decided it was time to work on getting her to sleep in her own room. We quickly learned that her anxiety about sleeping in her room is real and intense so this isn’t going to be an easy process. Alyssa has picked a pretty big prize for the end of this process and is very excited to get there but the anxiety is still winning.

This week on her own she decided she wanted to start trying. You can see in her face how anxious she was but you can also tell she really wants to try. We are only two days into it and we are still only at the part of laying in our bed during the bedtime process. Last night she got super close to drifting off to sleep but as soon as she felt that drifting she quickly popped up and said I can’t and ran to our room.

I am so proud of Alyssa and her bravery. This process will be hard for her but I know we will get there.

By the way…we have NO idea how to go about getting Courtney in her own bed. That will be a whole other process and blog post.

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!