Love needs no words but I’m here to tell you that the saying is easier to accept when your child talks. When you have a non-verbal child, you long to hear the words, “I love you”. Here’s a video I got from Courtney’s feeding/speech therapist. Yes, it’s prompted and very much an imitation. Yes, it’s hard to understand. But, Courtney, I love it and I love you!

Let’s talk exhaustion. Not the “my baby has been sick” exhaustion, not the “I couldn’t sleep last night” exhaustion. Not even the, “I’m an insomniac exhaustion”. Dare I say, not even the “I have a newborn” exhaustion. I can compare the exhaustion I’m talking about to all of the ones I just listed because I’ve experienced those. Each and every one of them. As exhausting and frustrating those days were, it’s nothing like the exhaustion I want to talk about. I read old Facebook posts of mine that talk about how exhausted I was from my insomniac days and I laugh as I wish I could go back to that exhausted feeling. I want to talk about the exhaustion parents who have children with special needs experience.

Whenever I say I’m exhausted my husband will ask if I didn’t sleep well. This exhaustion goes so deep that it has nothing to do with how much these moms slept the night before. During waking hours their brains are constantly thinking about the different needs of their child, whether those needs are being met, is there something more they can be doing to help them, are they being safe at school, are they being bullied, are they hurting anyone, what is going to them when I die…the list goes on. Then there’s the rigorous schedule that these parents need to keep up with that includes therapies, doctor appointments and so on. Then if your child is a high energy child and is constantly on the move (like Courtney) then the parent is constantly on the move because if you take your eye off them, who knows what they will get into.

Now the things listed above are all exhausting. Sleep issues are very common in children with autism. This on top of the day to day stresses can be debilitating. These sleep issues with some of these kiddos are intense. Some have a hard time sleeping, some have a hard time staying asleep and some struggle with both. When I say struggle falling asleep, I mean they are up past midnight. When I say have a hard time staying asleep, I mean waking up in the middle of the night and then up for good AND likely on the go during this time. I think what is hardest about this compared to having a newborn is you expect it with a newborn and you know there will eventually be an end. There is typically no end in sight when it comes to a child with special needs and sleep issues.

As for me…yep, I’m that exhausted. I’ve been really feeling it lately. Is Courtney in a rough patch with sleeping? We had a tough week or so but it’s getting better. But it’s been a lot worse in the past. That’s why I say it’s so much more than not getting sleep. It’s the needing the constant watch, it’s the endless worry, it’s non stop schedule. Oh, and I have a second child too and if you’ve met Alyssa, you will understand that’s a whole other level of exhaustion…lol.

But as exhausted as I am, my love for my family will always keep me going. I guess I can say, I’ll sleep when I’m dead…

Courtney’s progress with her talker continues to be slow and rocky. She will show us progress and then regress, show us progress and then regress and so on. She continues to only use it independently for requests for favorite food/drink items and labeling nouns. Requests also continue to be stuck at one word requests. Beyond that she always needs some initial prompting. It’s been a very frustrating journey but a journey we continue to embark because I want Courtney to have a way to communicate.

Time to celebrate though! The first celebration came at a family party where she was sitting on my lap and out of nowhere, she used her talker to request tickles! A spontaneous request of an action! I was so excited!

The second celebration is even bigger. During a therapy session her butt was itchy because of dry skin. She used the potty and was scratching her butt cheeks and getting very agitated. Her therapist was asking her what was wrong and this is what she said using her talker…”tickle butt”

A spontaneous request for someone to help meet a need using two words! I am ecstatic! This is a first! I couldn’t be prouder.

Some mountains are very steep. Sometimes you will fall and even move backwards. But with hard work, you will continue progressing to the top. So proud of my little girl who continues this difficult journey of finding a way to communicate!

She actually fell asleep without her headphones on tonight! No, I do not keep them on her all night. She falls asleep with them on and then I take them off. When I take them off her, it is do evident on how much they are a security blanket. In her sleep, her hands cover her ears as soon as i take them off.

We recently had an appointment with Courtney’s developmental pediatrician. When we walked into the office she commented on how cute her headphones are. I responded saying that they are a constant part of her and she in what I felt was a judgmental way responded that she wasn’t sure how she felt about that and in return asked if I was really ok with it. I was definitely put off by this. I did explain to her why she used them and how we are working on making her less dependent so she did back off on her initial judgment but needless to say, I was bothered by it.

We continue to work on her using them less but the process has been very slow. She has become so dependent on them. They help her with her noise sensitivity and her anxiety in general. As much as I would love her to wear them less, when they aren’t on her, she is covering her ears with her hands. If a set of headphones help with this anxiety, why not let her wear them? As much as I am more than ok with the headphones, it is nice to see her without them.

She won’t eat chicken but she will lick the salt off my car.

We can’t get her to eat dairy free yogurt but she does love the taste of the bar of soap I just pulled out of her mouth. She also loves the taste of rocks over the taste of most vegetables.

Then there is the paper, books, play doh , slime…the list goes on.

Don’t mind me just losing my mind as I keep pulling items out of her mouth.

I want to thank you…

First to the older ones. (The teenagers because all but one cousin is older). I see you. I see how without asking, you are an extra eye at family parties. I see how helpful you are when I throw her in your arms to hold her in a cousin photo. I see you when your parents ask you to follow Courtney around to give me a break. I see you and I thank you.

To the niece that has come to help me at birthday parties so we can attend. You turn it down when I pay you but the truth is, the little I have given you doesn’t even come close to how much it means to me. I see you and thank you.

But there is a set of cousins I need to give a bigger shout out to. The ones that are closest to my girls ages. First thing first…I see how you are trying to grasp this whole autism thing. I see how you are still trying to grasp why Courtney is different. I see you when she hurts you but you try so hard not to show just how much it hurt. I see how much you want her to interact with you but yet you are ok that she doesn’t. She loves you, I hope you know that.

But then there is your relationship with Alyssa. When it comes to Alyssa, you are so much more than cousins. You are so much more than even playmates. You may not realize it yet, but all of you are like older siblings to Alyssa. The older sibling that Courtney is unable to be for Alyssa. She looks up to you like a younger sibling looks up to an older sibling. You are her role models, her heroes. Just like a younger sister, she can be a pain but yet you still love her. I see this and I can’t thank you enough.

A special shout out to my niece who said to me today, “Aunt Erin, how can I help you with Alyssa?” Riley, you made my day, my week, my month, my year! At the age of 8 you saw your aunt struggling and you rescued me. Words can’t even begin to say how thankful I am.

I thank your parents a lot for always being an extra hand, but all of you are helpful too. Thank you for being the best cousins my girls could ever ask for!

I can get easily frustrated with Alyssa. I honestly think it’s my warp mind set being that everything I new about development prior to having Alyssa was based on children with Autism. The fact that a little 4 year old could have so much sass and ability to manipulate a situation is beyond my understanding. The truth is though, Alyssa is amazing. She is wiser than her years and has had to mature more than the typical 4 year old. Alyssa isn’t a typical 4 year old. Yes, she is typical in the means that she does not have learning disabilities but when you are a little sister but very much have to play the role of the big sister on the daily basis, you are far from the typical 4 year old.

I had a moment recently where it hit me hard seeing the role reversal between the two of them. I was changing Courtney’s diaper and she was resisting with all her strength. I called my husband over to assist. Alyssa then came over to assist without us even asking her. She did everything she could do to distract Courtney. Alyssa brought Courtney one toy after another hoping one of them would make Courtney relax so we could change her diaper. Alyssa did this all on her own accord. She noticed we needed help and decided that is how she could help us.

I cried after this moment. Partly because it is awful when it takes 2 people to fight a 6 year old when changing their diaper but I also cried because Alyssa is 4. At the age of 4 on her own initiative more often than not, Alyssa takes on the big sister role. At the age of 4 she seldom asks why Courtney gets away with things that she doesn’t get away with. At the age of 4 she is learning how to be Courtney’s voice and even advocate for her big sister.

I’m not mad at Courtney or even autism for putting Alyssa in this position though my heart does ache to watch moments like the one I shared. I am also insanely proud of Alyssa. She is a rockstar!

Every year I share this memory from 2015. Every year I get this bitter sweet knot in my stomach as I watch this memory. I watch how connected she is in it. I watch how the few words you can understand come freely out of her. A memory that will forever make me smile and shed a tear whenever I watch it.

For those who are new to following my journey, this moment is so bitter sweet because this is before Courtney regressed. Before we “lost” who we thought our little girl was going to become. Before autism became our reality.

The bitter sweetness hurts less every year when this comes up. This year it gave me such a smile because just a week ago, we caught another signing video. A video that shows how far our little girl has come thanks to her huge village that has worked endless hours with her. A new moment that I will also hold very dear to my heart.

I’m sharing both videos with you. The one of Courtney singing “let it go” from the top of her lungs 5 years ago. The other one is Courtney during a session with one of her ABA therapists. This therapist comes to our house a couple hours twice a week. She loved singing songs with Courtney and will sing the same ones over and over so we are starting to see Courtney actually try to sing along.

Hope these videos bring as much joy to you as they do to us.

(Note…I was given permission from her therapist to share this. Also, I do not own the rights to either of these songs but I think Courtney should 😉)

Somewhere I lost control over how the girls sleep. Not that I’ve ever had great control over it, but as of recently, I’ve lost the little control I’ve had. I’m about to put myself out there for some major parent shaming but here I go. As of the last few weeks, we now have both girls sleeping in our bed.

I’m going to skip over how Alyssa started sleeping with me but I will say, She use to be a beautiful sleeper who fell asleep on her own and in her own bedroom. I will also add that if any parents out there have children scared of monsters in their room? DO NOT USE MONSTER SPRAY TO GET RID OF THEM. Total backfire in this house.

As for Courtney, she has been anxious about falling asleep in her own room for a while now. Though once asleep, I have always been able to transfer her to her bed. As of recently, her anxiety about her room as increased. If I’m lucky enough to transfer her without waking her, she wakes up at some point of the night and quickly runs to our room and into the bed. The problem is, once Courtney is awake, she is awake for several hours. Once Courtney is awake, I’m awake because she needs constant eye.

So here’s the dilemma? Courtney (and Alyssa) is sound asleep in my bed tonight? I can keep her there and get a good night sleep or I can move her like I did last night and other nights this week and probably end up awake half the night. What would you do?

Courtney has had sleep issues from day 1. Sleep deprived is the state of my existence. We were on quite a good stretch this fall but all good things must come to an end I guess…



Courtney has loved the feel of Alyssa’s hands since the very beginning. I couldn’t help but smile as I watched Courtney jump to the chance to get a feel of Alyssa’s hands as she was sleeping. Love these girls!