You hear the stories on the news about children with autism wandering away from their house. I’m sure there are some out there while hearing these stories who wonder how a parent/caregiver can let that happen.

I can now tell you from experience that when your child is what you call an eloper or a flight risk, it doesn’t take much for the stories on the news to become a reality some day.

First, I should say that Courtney is home safe and sound and wasn’t actually missing for long at all. It did not happen on my watch but how it happened could have happened with any one. But because it didn’t happen on my watch I’m not going to go into details of how it happened. But I will share that the police were called pretty quickly. Fortunately she was found 4 doors down before they even arrived. So a shout out to this caregiver for handling it the best she could. Not sure I could have handled it as well.

I also want to give a shout out to my city’s police department. Because Courtney is an eloper I’ve always wondered what additional precautions I should take not only with “Courtney proofing” the house but with alerting the police department but I never did more than wonder with the later. I know longer have to wonder. The positive part of today’s incident is we learned about two amazing programs.

The first program is the police provide the child with a tracking device. It’s a transponder that can be worn on the wrist or ankle. When a child goes missing, when you call the police they will show up with a device that sends off signals to the transponder and then in returns shows them the location of where the child is.

The second program is called “Caring Hands”. This program is with both the police and fire department. They put on file a picture of the child along with details about the child including different suggestions on how they can help the child if they are in distress or things to avoid doing so they don’t set them off more.

As much I will hope We will be making use of this will never happen again, this is our autism. This is our reality. Therefore we will be taking advantage of both of these programs. I am so grateful that there are programs out there to help keep Courtney and others like her safe.

This is so much more than a picture of Alyssa and Courtney swinging together. It’s a picture of my brave little Courtney swinging even though she has an anxiety when it comes to her feet not being grounded. She doesn’t like swimming in water higher than her thighs and she doesn’t like swinging. Only thing her OT’s and I can figure out is that she loses her sense of control. It is actually a goal we’ve been working on for a while now with her private OT, her being more tolerant of different types of swings. So here she is, swinging next to her sister. This lasted just over 5 minutes. I was even able to push her some! Way to go, Courtney!

Oh…as you can see, she has no issues with bare feet outside. Oh Courtney!

We’ve been on this journey of helping Courtney find a functional way to communicate through the use of a talker for over 3 years now. It’s been a tough journey with a lot of ups and downs. As frustrating as the regressions were we kept plugging away and pushing knowing the ultimate goal is her learning to communicate.

This last regression was to be expected with all the changes in her life this fall. As I’ve said before, learning a communication system is like learning a new language. She left her school team that helped introduce and learn her “language”. We said good bye to our nanny who again, learned her language and helper her progress. She had to start with not only a new school but a new nanny who did not know her “language”. You can’t teach a language if you don’t know it yourself. It took time and patience and more work from the home therapy team and me. Though regression was expected, it’s never easy to watch.

Through every up and down, I felt like we have been stuck at this phase where she only uses it to request foods, drinks and label things when is asked. As we got through this last regression, we are not only where we were before the regression but I feel we are finally seeing glimpses of her going beyond requesting for the same things. We are more consistently seeing two work requests like “want milk” instead of just ‘Milk”. And we are seeing more spontanious novel requests that we have never seen before! I am ecstatic!

The other day Courtney kept grabbing me and bringing me to the master bathroom’s bathtub. I grabbed her talker and asked her what she wanted. She carefully scanned the pictures and pressed “wash”! Oh my goodness! She told me she wanted a bath! Darn right I stopped everything and got the bath ready. Well, she didn’t want a bath, she hates baths. She wanted water in the tub so she can lean over and play in it. That detail doesn’t matter and we will work on that, but it’s a start!

This morning we were playing downstairs and she grabbed her blanket, iPad and grabbed my hand and brought me to the stairs. I went back and grabbed her talker and asked her what she wanted. She scanned her talker with intent and then requested “sleep”. I know she didn’t want to actually go to sleep, but she loves sitting on my bed and watching her ipad so I was able to figure out what she meant. Again, a novel request that does not involve food!

Yes, the average person off the street would still be confused by these requests, but I was able to figure out what she meant a lot easier than her typical way of grabbing me and bringing me to what she wants. I am so proud of her AND her amazing team as we learn this “language” together.

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!