Courtney has hit another plateau with her talker and it has me frustrated. I realize plateaus are a part of life so I don’t think it’s the plateau itself that’s frustrating me. It’s more the fact that I feel like I may not be giving her the tools that she needs to keep progressing.

Children learn to talk by listening to others talk. Language is constantly being modeled from the day a child is born. Did you know that a child needs to hear a word almost 500 times I think it is before the know how to use it? Well, the same thing has to be done when teaching a non-verbal child to use a device. The language (and in this case, the device) needs to be modeled over and over again or they won’t learn It.

How lucky is Courtney that she has a mom who is already “fluent” in her device? I in frustration asked (or more vented) her speech therapist, why is it that I can model all day at school for my student but come home and barely touch hers? Her therapist could not only tell that I was trying to take complete blame of her plateau but could probably tell I was about to have emotional break down over it. He reassured me that it’s quite common to feel the way I do and that I’m not failing her.

It’s hard. I get home from work and it is non stop. It’s like a race to the finish line with the finish being bedtime. I am tired at the end of the day. Who wouldn’t take the easy route of just verbalizing everything you say?

I’m trying to stop the self blame but instead use this plateau to remind me the importance of modeling. No time for a pity party, time to do something about it.

(Disclaimer…I typed “I feel tired” in the picture shown, not Courtney.)

There’s nothing I want more than my girls being each others best friend. My younger sister is my best friend and that’s what I want for them. Now will their relationship look like the relationship I have with my sister? More than likely not but as far as I know, having autism doesn’t mean you can’t have a best friend.

Lately I haven’t seen this bond forming as I had hoped it would. I know, they are still so young. I need to give it time. I also know that what I’ve been seeing instead is probably very typical. But because of “autism”, i struggle with it.

Courtney vocalizes a lot. She vocalized when happy, when sad, when frustrated, when mad. Some times her vocalizations sound like she is trying to sing a song or replaying a favorite video. Sometimes you may even hear an actual word. Her vocalizations aren’t that loud but can be very constant at times. Alyssa thinks her vocalizations are not only loud but annoying. So there are times during the day when Alyssa will start yelling at Courtney any time she vocalized. “Stop it, Courtney”, “too loud, Courtney”, “I don’t like that, Courtney”. And in every case Alyssa ends up being the louder one.

Alyssa and I have had several talks about this. We’ve talked about how this is Courtney’s way to communicate. We’ve talked about nice ways to tell Courtney to be quiet. We’ve talked about how unless she is super loud, Courtney can make her vocalizations. We’ve talked about how she can wear headphones or even go in to another room.

I want to acknowledge that these vocalizations bother Alyssa. I want her to know that in our world that revolves around autism, her feelings matter. The last thing I want is Alyssa to resent her sister. But honestly, most of the time, the vocalizations are not loud at all and I truly feel Alyssa is being unfair.

The other day it happened. Alyssa said something that broke my heart. She said something that I am pretty sure every 3 year old (even me) has said to a sibling. But hearing her say it to her sister with special needs stung and it stung hard. Courtney was making her noises and Alyssa was getting mad. Suddenly she screamed loudly, “I hate you, Courtney” and then hit her.

Where is that bond I wanted them to have? What am I doing wrong? How can I do a better job facilitating their sister bond?

Yes, a very common interaction on this age but here’s the difference. The one receiving the mean words can’t defend herself. The one saying the mean words is the younger sister but only by age. As a little 3 year old, she is already expected to be the older one of the two, expected to understand things that most 3 year olds can’t comprehend, and expected to put up with things that not everyone has to put up with such as being bit, scratched, and hit. What if those words truly become how Alyssa feels? Yes, I’m pretty sure I said those exact words to my sister/best friend but the difference is, her and I both had the ability to make up.

We have this crazy streak going on. A streak that is so unheard of for Courtney that I can honestly say this is a first. A streak that I’m afraid to talk about in fear of jinxing it even though I am not superstitious what so ever. So as you read about this streak, humor me and knock on some wood.

Courtney has been a bad sleeper since day 1. Alyssa started sleeping through the night before she night. The awful part about Courtney’s middle of the night wake ups is she is up for hours. She sleeps through the night now, but the bigger problem is getting her to fall asleep. Most nights it can take anywhere from an hour to two hours to get her to sleep. She needs me by her side for this process so this makes it impossible for me to accomplish anything at night. We started using melatonin to help get her down, which would help but she would go through these screaming fits right before she would go to sleep any time we gave it to her.

So now that we are going on almost a week straight of her falling asleep before 8:45 p.m., no fight, no melatonin, my first thought was she must be sick. A WEEK STRAIGHT!!! And one night she fell asleep before 8:30 even after taking a 45 minute nap. A 5-10 minute nap usually means a 11 p.m. bedtime even with melatonin. I am not getting my hopes up at all that this is our new norm, but boy is it nice to not have to fight her falling asleep right now. Now go knock on some wood!

Side note…I’m sure some are looking at this picture wondering if she sleeps with the headphones on. Courtney still wears her headphones 95% of the day. She even needs them on when trying to fall asleep. I take them off once she is fully asleep. To give you a sense how dependent she is on the headphones…when I take them off her while she is sleeping, her hands immediately go on her ears.

This post is not autism related. This post is also going to be more personal than I ever thought I would get in my blog. Some may even question why I shared something so personal on social media. But I continue to wonder why this topic is so taboo to discuss. Hopefully this post will help others realize they are not alone.

October is miscarriage/infant loss awareness month. 1 of 4 women experience a miscarriage and or infant loss. 1 of 4! So why if it is that prevalent did I feel so alone when I had a miscarriage 5 years ago? Why did I feel that it was no big deal that I lost a little thing that I was carrying for 12 weeks and even named. Why do I feel years later I can’t reference the loss I had? Most actually don’t know that it was my second miscarriage. I had one when married to my ex husband. That one happened at only 7 weeks so that doesn’t even really count, right? Wrong! I wonder every year around the time I miscarried both what life would have been like if I hadn’t. Yes, of course I realize there wouldn’t be an Alyssa if it weren’t for my miscarriage 5 years ago and what would life be without Alyssa?! That doesn’t mean I can forget about the little human that was growing inside me.

It’s not part of miscarriage/infant loss awareness but this time of year I always think of another loss I have experienced. The loss of being able to have more children. When Alyssa was born because of severe complications after delivery, my uterus was removed. I will never regret the decision my husband made when they asked him if it was ok to remove it to save my life. Of course I’ll take my life over more children but we wanted more so that was a big blow to my emotions and continues to be something I struggle with,

“It was a blessing in disguise”, “could you really have handled another child in your crazy life”, “probably a good thing you can’t have more”, “at least you have your beautiful girls”. Yes, these are comments that have been made to me and maybe some are true. To those of you who have said this to me, don’t worry, I don’t hate you for it because I am able to understand that it comes from not being in the situation yourself. Until you live it, you can never understand the feeling I and others out there feel. Joe and I would have tried for a third. Crazy or not, that’s what we would have done. I came from a big family and I wanted a big family.

So on this awareness day, I think of all of those women who have miscarried, have had a still birth or lost an infant. My heart breaks for you as you will always mourn that loss in some way. I also think of the women who are unable to bare children for one reason or another because you too are mourning a loss. A loss of the children you wanted. Yes, it’s different, but it’s a loss. I get it and mourn with you.

Courtney’s struggles with all self help skills. She struggles feeding herself, putting close on and off, bathing, brushing teeth, washing hands and the biggest one being using the toilet.

In the past week or so, we have made some gains in a few of these areas which is HUGE! I worry all the time just how dependent she is going to be of me so any time we make any growth in the areas of self help I feel a small sense of relief.

Well, she has made some gains recently!!!! She is really doing well feeding herself. It’s been hard to work on this one because she doesn’t eat many foods that require a fork or spoon. Watching her feed herself cereal and milk with little mess makes my heart happy! We stopped eating the same time as the girls PARTLY because one of us had to help Courtney eat.

The other self help skill she is making gains on is dressing herself! I think as parents we take for granted how helpful it is when they become independent in some of these skills. She is far from independent but she’s progressing and I am celebrating!

She has made big gains in one other area. This one is the big one. We were so far (and still far) from being independent in this area that I was losing hope she would ever get it. Folks…we are back to potty training! We have tried a few times but each time we took huge steps backwards. We have spent the last year deathly afraid of not only public bathrooms but the bathroom in our own house. This was paralyzing especially when in public. I was resorting to finding private spots even though out in public. It’s one thing for a baby to be changed out in public but a 5 year old girl? I was humiliated for her! We slowly started working on her fear of our bathroom. As of a month or so ago, we conquered our bathroom! We were getting her to sit on the toilet once or twice a day and even a few times she actually went!

This excitement was quickly crushed when I found out from her teacher that they were using dividers and a changing pad to make a private spot in the class to change her because it was so hard to get her in the bathroom there. Well that was it, my daughter was going to be in diapers for life.

Fortunately her school team, home team and private clinic team didn’t have the same negative attitude as I did. They cautiously started pushing her more to go in the bathroom at school or the clinic. I asked them to be delicate about it because of our past regressions when trying. After just a short time I started receiving updates such as “we got her to step in the bathroom”, “we got her to put her hand under the running the water”, “she tolerated playing with her favorite toy in the bathroom”, to “SHE SAT ON THE TOILET TODAY”. Maybe, just maybe we will be able to potty train her!

So wish us luck as we slowly increase our expectations in this area. We are still so far from saying she is potty trained. I continue to be afraid to get my hopes up in fear of disappointment but I’m at the point where I will allow myself to be cautiously optimistic.

(Just has to share a picture of her in the washing machine.)

When Alyssa showed me a coloring page from Sunday school that had her name written on top, I immediately assumed one of her cousins who goes to Sunday school with her wrote it. She can’t write her name! But then looking at it closer, it didn’t look like her cousins (6 and 8 years old) did it either. I asked Alyssa and she said she did it. I Still thought it wasn’t possible. She doesn’t know how to write her name and nor could she have already learned how to that fast in preschool.

Being that I teach preschoolers with autism and my oldest has autism I find that it is easy to forget what proper development in certain skills looks like. You mean it doesn’t take every preschooler a couple years, if even, to learn how to write their name?

A piece of work cane home in Alyssa’s backpack today. Sure enough, across the paper is her name written the same way it was written on the coloring page from the other day. Alyssa, my baby girl, can write her name! I am so proud of her!

Another autism mom that I follow on social media was just talking about what it is like watching a younger sibling surpass the older sibling with special needs. It really is bitter sweet. There is relief that akyssa doesn’t lack the skills Courtney does, there is pride as I watch her take in information like a sponge, but there is this little sting I also feel as I see how much further Courtney is behind Alyssa. Courtney is 6 years old, has had 3 years of preschool and still is not even close to being able to write her name. She is still learning how to imitate drawing horizontal and vertical lines.

But life isn’t a race to the finish line. If Courtney needs longer to reach certain milestones, I will give her that time.

I am so proud of the progress both of my girls are making in this journey called life!

Thirteen years ago I voluntarily made the switch from teaching 1st-3rd Graders with emotional/behavior orders to teaching a structured preschool classroom for children on the autism spectrum or who benefited from a structured environment. I didn’t switch positions because I didn’t like my first position. I switched because I really wanted to work in the area of autism. What I didn’t know then was I was eventually going to have my own child with autism. If I knew then would I have still switched? Who knows.

Being a mom of a child with autism can be hard work. Being a teacher of children with autism can be hard work. Being both can be very trying some days. Ok, who am I kidding, a lot of days! Last school year was a very difficult school year both for Courtney and for my classroom. It was so hard at school managing all the different behaviors in the classroom and then to come home and manage the same difficult behaviors. I hated that by the time I got home I was already physically, mentally and emotionally drained yet still had to face the challenges of my own child with autism. By the end of the year I felt so burnt out. I really questioned my ability to continue teaching. Any time I mentally considered the possibility of leaving my position, I could tell my heart was not ready.

So here I am, another year of doing double Autism duty. Again, I feel the toll both sides are taking on me but again I can tell my heart is not ready to change what I am doing. It’s hard, it’s exhausting but here’s the thing…I love both jobs too much.

When Courtney was born, we were blessed to have family as her caregivers. Three days a week my mom watched her at her house and two days a week joe’s parents watched her their house. We were able to continue using them when Alyssa was born. It is so hard leaving your babies to go to work but knowing they are with people who love them definitely helps.

The time came to figure out different caregiver plans when Courtney needed a 5 day a week preschool program. Because of her needs, we knew a day care center wasn’t going to work. We needed a nanny. That is when Savannah entered our lives.

I was so nervous to leave my precious girls with a complete stranger but it ended up being the beginning of a beautiful relationship. She became our life saver!

As I’ve shared, she is leaving. We started with a new nanny when the school year started but Savannah was still around some for date nights and one last overnight but it’s time to say goodbye.

I will forever be grateful for all she did for our family these past 3 years and she will be missed. Hopefully we will always be on her list of stops whenever she is in town.

We love you, Sahna!!! (No clue how to spell what Alyssa calls you.)

I haven’t posted about horse therapy in a while partly because Courtney has been going through a rough patch with it. It started a few months back when she would start crying in the car as we got closer to the stables. We didn’t take it as a sign to stop therapy because once at the stables she would seem happy. Yet she wasn’t all that happy once she got on the horse. We also did t want to stop therapy because Alyssa and I truly enjoy our time with the horses.

Ms. Christine and I were determined to figure out what changed for Courtney. Was it the change from bareback riding to riding with a saddle? Was it riding inside versus outside? Did something spook her?

After testing out a couple different theories, we finally came to the conclusion that it was the helmet. But why? Then it dawned on me. This aversion to the helmet started around the same time she became very dependent on her headphones. It’s gotten better but when you take Courtney’s headphones off, her hands immediately cover ears and you can sense her anxiety increase. So of course it made sense that horse therapy was starting to be stressful. When it was time to ride, we ripped her security blanket from her. Makes complete sense!

We have been working on her decreasing the wear of the headphones. We don’t want to make her uncomfortable so we are doing it delicately and definitely not keeping them from her. But there are going to be times where she may need to take them off so we are working on it.

Today’s therapy session was fantastic. She tolerated us removing the headphones and putting the helmet on. And…there were smiles while riding the horse again. I was so excited to see that smile. So glad we stuck it out. Just another reminder how behaviors are a form of communication. There is a reason for every behavior. Sometimes it’s hard to find the reason, but taking that time can pay off!

“Aware is halfway there.” I heard this in a workshop today and it resonated with me as a mom of a daughter with autism. Awareness of Autism is huge and I am so glad awareness is being spread daily. But now as the CDC shows that it is now 1 of 49 children have autism, it’s hard not to be aware of it? It is so much more than being aware though. Aware is halfway there. The bigger question is, are you accepting Autism and all that it entails?

What do I mean by accepting Autism? It means not judging when you see a child melting down in a store and maybe even taking a moment to understand what could be causing the meltdown. If you are really brave, even seeing if you can assist the parent. It means understanding that some will have a hard time waiting their turn in a line, being quiet in a movie theatre, or need to wear accessories like chewies and headphones all the time.

As most know, Courtney wears adorable pink headphones ALL THE TIME. They help her with not only noises that she is sensitive to but also managing her anxiety. I swear she has been happier in general since starting to wear them. Though we are trying to find ways for her to cope without them too because we don’t want her to become even more sensitive to noises. I’ve talked a lot about these headphones so you are probably well AWARE of whey she wears them so going to leave it at that. My question is…what were your first thoughts when seeing her school picture? It is very much ok if you first thought, “why didn’t school take the headphones off”. I don’t blame you! Her dad and I both did. But honestly, that is the acceptance part. I think part of reaching the accepting Autism part is being able to look past the differences and accept them for who they are. Courtney wears headphones, that is who she is. As my cousin said to me in a text, that is her accessory. Some wear rubber bands to keep their hair back, some wear glasses to see, some wear hearing aides to hear. Courtney wears headphones to be regulated. I needed a minute when I first saw the picture, but then I saw the picture as it was. A beautiful picture of my little girl! Sitting still, smiling and happy! What more can I ask for?

And that, folks, is acceptance!