Comparing your child to others…we all do it at some point. Especially in the early years when you are watching your child and the children around them reach different milestones.

As a special needs mom, early on I had to work hard at not comparing as I watched kids Courtney’s age and even her own little sister surpass her quickly. I definitely don’t do it as much now. Courtney is where she is suppose to be for Courtney. Doesn’t matter where anyone else her age is at.

But…then there are those moments. Today was one of those moments. We were at my family’s Thanksgiving gathering. My nephew and his wife were there with his 17 month old daughter. We don’t get to see them much at all so it was the first time really seeing all the little skills she’s gaining. Her mom, dad and Aunt were asking her to point to her eyes, nose, feet and so on. It was adorable. But the cuteness turned bittersweet for me. At 17 months she is doing a skill that my 6 year old is still working very hard at trying to master.

It stung and sometimes I just need to acknowledge that feeling instead of beating myself up for feeling this way. I removed myself from the area and a little later I vented via text to a friend. She reminded me of something very important. She reminded me to focus on the skills that Courtney has mastered and how hard she worked to achieve those skills. She is so right.

Courtney works her little tail off 7 days a week. There is not one day during the week where she doesn’t have therapy and or school. Most kids her age had at least 3 days off this past week. Courtney was off school but 2 of those 3 days she still had therapy. Has she mastered pointing to body parts? No but she is working incredibly hard to and I couldn’t be more proud of her!

I’m sure I will always experience these bittersweet moments. It’s part of being an autism mom. The other part of being an autism mom is getting to celebrate each and every skill she works hard to master.

I’m trying so hard not to get frustrated with the potty training process but that is easier said than done. So how is it going?

We have gotten everyone on board with taking Courtney to the bathroom frequently. We are taking her every 30-45 minutes. We still have her in pull-ups during this phase. Why aren’t we trying underwear yet? Honestly, I don’t think she has that awareness yet. Took her diaper off to change her one day and she just peed while standing there. Clearly not aware.

So, progress…

For her, the progress is huge considering where she was last year at this time. Last year she had such a strong aversion to bathrooms that getting her near one causes a lot of aggression. Just this fall school has to come up with an alternative spot to change diapers because they couldn’t get her to step foot in the one there. So the fact that we are getting her to go in the bathroom with little to know resistance is a HUGE celebration. And she is going on the potty! Again, celebration!

Two huge celebrations, so why did I say I was getting frustrated? Basically because I feel it is luck that she goes on the potty. I can’t tell you how many times I’ve taken her and then 5 minutes after she’s off the toilet she pees in her diaper. I’m well aware that this is how potty training works but then comes the reminder that we are at this beginning stage at the age of 6 not at the age of 2 1/2 like most children. Cognitively she still doesn’t understand concepts like wet or dry. She doesn’t even understand the idea of if you stay dry you get a reward. So I can’t help wonder if we will ever get her trained. I know, bad attitude.

In my line of work I know it is completely possible to potty train a child with autism. Some do learn the whole idea of when you feel you have to go you use the bathroom. Some are what we call “time trained” where basically you just take them on a set schedule. We aren’t there yet but I need to remember that doesn’t mean we won’t get there.

Like everything with autism, this will take time, energy and patience. I’m going to stay positive that she will gain this independence. Until then, we will keep plugging away.

I’ve really struggled to find the words to describe the bitter sweetness of this collage of pictures. The pictures are of Alyssa and three of her cousins. I love these pictures. I love the pure joy on her face as she enjoys time with her cousins. I love that even though she can be a pest to them because she is younger, they still love having her by their side. I love that we can see her cousins often and that in some ways they are like additional siblings. Alyssa needs the special relationship that she is developing with them. I honestly couldn’t ask for anything more.

As I smile looking at this collage, there’s this sting I feel too. Where is Courtney in these pictures? She was also there. She was probably climbing into the piano, using the toy box as a balance beam or finding the next toy to put in her mouth. I can guarantee she was happy as can be doing what she was doing and that’s what matters.

Of course there is nothing I want more than her to join in on the fun. I also know there are things I can do to encourage more socialization. But, here’s the thing, there is one thing that is also evident in this picture. Love between cousins that hopefully will be unbreakable. And I also know, though not in this picture, they love Courtney too.

(Thank you to my brother and sister (and their significant others) for letting me share these pictures and also loving my girls unconditionally.)

Was without a caregiver today so had to stay home from work. That’s ok though. It gave me some much needed one on one time with this sweetie while Courtney was at school! We needed this time together!

I love when Alyssa shows interest in Courtney’s talker. It takes a village to teach a child with special needs and Alyssa is a very important part of that village!

This is Courtney a few minutes after getting off the bus. Though calming down at this point she was still visibly very upset. It started as soon as the bus pulled up to our driveway. The bus driver immediately said I’ve never seen her like this and have no idea why it started. I knew why. I got her off the bus today. Change in routine. This bus driver is new so he has not seen this happen but the few times I have been home to get her off the bus she has started screaming as soon as she sees me in the driveway. Most children would probably be happy to see their mom actually home to get them off the bus. But this is autism. Change in such an important part of her routine sets her off. Fortunately the meltdown doesn’t last long.

Courtney lost a tooth today. For most kids her age this is an exciting event. They get to put their tooth under their pillow, the tooth fairy comes and the next morning they wake up to find money under their pillow. How exciting is that?! It’s one of those moments that is also exciting as the parent watching their child enjoy the whole experience.

That is not how it has looked for each tooth Courtney has lost so far. This is tooth number three and for each tooth, I’ve wrestled with why I even bother. So, why do I bother? Because it is important to teach her about the experience in hopes that maybe one of these times when she loses a tooth she will get excited about what will be under her pillow.

This girl…as I sit here the night before her 4th birthday, I’m not sure where to begin. Yes, she has been given the nick name, ” little shit” (not to her face of course) but I truly believe in some ways it’s a compliment. She earned that name because of her strong personality that will get her so far in life. This girl is going to move mountains!

Watching her grow up makes me laugh, cry, scream and proud. I laugh at the constant facial expressions as she enjoys everything life has to offer. Cry because it kills me to watch my last little baby turn into a little girl. Scream because she tests my patience day in and day out. Proud of how with little explanation, she has caught on that there is something special about her sister.

There is one feeling I feel more than all of the above and that is thankful. Thankful that I am here to laugh with her, cry with her and even scream out of frustration. I am so thankful that I have been able to watch her grow into this beautiful little girl.

Four years ago her delivery lead me to have to fight for my life in a way no women should have to on such an important day but here we are now living life to its fullest. And though it is a crazy life it’s a life I will never take for granted.

Happy Birthday, Alyssa! I love you to the moon and back!

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.