When you are a working mom, part of your job is finding that balance between work and family. It takes figuring out how much time you can put into each. You have to work at making sure your family doesn’t interfere with your work and your work doesn’t interfere with your family. I found this difficult from day 1. I use to spend every night doing at least a little bit of school work but once Courtney came along, that stopped. I definitely felt like I wasn’t putting as much effort into my job as I did. And like any new mom, was always wondering how my new baby was doing without me.

That balancing act was nothing. It’s a whole different balancing act now. Of course it’s harder because now I’m a full time working mother of two, but that’s not the only reason it is harder. When Courtney was a baby, I wasn’t an autism mom. Now I’m an autism mom. I’m not only an autism mom, I’m an autism teacher. So here’s the question…how do you separate the two when they are so similar? My two worlds have merged in such a way that I’m not sure it is possible to separate the two. I spend all day at working wondering how I can incorporate what I am doing with my students with Courtney. At home, I wonder how I can incorporate what I am doing with Courtney at school. One of the hardest parts of my dual role is realizing that Courtney belongs in my classroom. I make that sound like a bad thing. It isn’t a bad thing at all, but when you teach children with pretty significant needs and you come to the realization that your daughter actually belongs in your class, that’s hard to swallow. It’s also difficult spending all day trying to work through meltdowns, overstimulated behaviors, and the all the other day to day things you have to work through with a child with autism only to go home and have to find the energy to do it at home too.

Here is where it has been really hard the past couple weeks. Courtney is in a class that I don’t feel will appropriately meet her needs. Unfortunately, this is probably making us the most talked about parents in the teacher’s lounge. I can tell you for certain, if I was the teacher and I had a parent like me, I would be sick to my stomach any time she wanted to talk to me. So this week, when my advocate asked me to send a note to her school team requesting data, I immediately felt sick to my stomach. I know as a teacher, I would feel uncomfortable if I received an e-mail like the one I sent out to Courtney’s teacher. I had a week moment. There was a moment that I asked myself if I was doing the right thing. I asked myself if I want this stigma. I asked myself if I was up for this fight. Later that day I received an e-mail from Courtney’s teacher. She has been biting. I wasn’t surprised one bit. That is what Courtney does. When she is frustrated or when she is completely over stimulated, she bites. Last years teachers new this and we talked about our concerns with this behavior at her meetings because with this new setting we have concerns it will increase. What was concerning when I got this e-mail was the biting is happening before the typical children started. I want her to succeed in this setting. I really do. But it didn’t have to be this way. So after receiving that e-mail and my advocate also sending me a message saying she could back off a little bit if it’s making me uncomfortable, I quickly replied back…don’t back off, push as hard as we need to. I need to do what’s right for my daughter.

This entry was kinda all over the place…lol. That’s how my brain works sometimes!

It’s a double post day! I had to put a post about the joy of watching these two form a bond. This beautiful picture was taken during Courtney’s therapy session. Her team of therapists take her for walks to work on her holding an adults hand without dropping to the floor or trying to run away. Sometimes, Alyssa gets to join in on these walks. When this happens, the therapists try to work on socialization. One of the things they will have them do is hold hands. This isn’t as hard as you think it could be because Courtney LOVES the feel of Alyssa’s hands. She has since Alyssa was a newborn. Usually the challenge is Alyssa not wanting to hold Courtney’s hand. Today she was all for holding her big sister’s hand.

Two years ago, when I was pregnant with Alyssa, I was so worried about how Courtney was going to adjust to having a little sister. I was certain she would either hate her little sister or not even acknowledge her existence. I couldn’t have been more wrong! Courtney definitely doesn’t hate Alyssa and Alyssa is probably one of the few children that Courtney does actually acknowledge. If you watch carefully, you can see Courtney checking out what Alyssa is doing all day long. Courtney will be sitting playing on her iPad while Alyssa is running around and Courtney will look up occasionally to check on what she is doing. Courtney will have this look on her face like she’s thinking, “what is Alyssa getting into now”.  Then there are those moments where Alyssa will be sitting on the couch or on the floor and Courtney will just go up to her and touch her hand. For the most part, Alyssa is absolutely fine with these short interactions.

The most amazing part of their relationship though is how at 21 months old, I’m pretty sure  Alyssa has already figured out that there is something special about her big sister. As much as Courtney is her big sister, I think Alyssa is already catching on, that she is Courtney’s guardian angel. Am I imagining that she is already is catching on to this? There’s been numerous times where we are trying to leave the house and Alyssa will go try to get Courtney from whatever room she is in and bring her to the door. I have watched Alyssa try to spoon feed Courtney her cereal, and try to show Courtney how to use her talker. Then there is Alyssa’s bedtime routine. Alyssa has to say good night to us all and she always tries to give Courtney the biggest hug. Joe and I have said again and again, the best gift we gave Courtney was Alyssa.

We survived. Mommy and Courtney survived her first day back to school. Even though I’m not completely happy about the blended placement, I am happy that the first week or so is just the students with special needs. So she gets to get use to her long day with just a small class.

I wasn’t there to see her off today. It was her grandparents. I was frantically checking my phone for updates through out the day from them or her teacher on how her day went. This morning while waiting for the text from her grandparents saying she got on the bus, I was at a welcome back breakfast at my school. A women came from behind, touched my shoulder and said, “I want to hug the warrior mom. I am definitely Team Courtney.” It was a fellow colleague who has spent the past several months following my posts/blog. That hug and the little comment saying she’s definitely on Team Courtney just made me feel so good at that moment. Knowing that I have so much support from everyone, really gives me the strength to be the best I can be for my girls.

Someone has asked me recently why I blog and if I found it helpful. I don’t blog for sympathy, I don’t blog to boast, complain or anything like that. I blog because I do find it helpful to write out what I am thinking. I blog, because I have found it healing to read other blogs of mom’s who have children with autism and I hope to do that for others. What I have found most helpful about blogging, is the support I get from those who read my posts and blogs. So I want to thank all those supporters. Thank you for being Team Courtney! It truly means a lot.

My dad called me tonight on his way home from Ohio to ask me how things went at the big meeting. It just happened that he called me while I was driving Courtney through the neighborhood to get her to sleep. She had a meltdown at bedtime and sometimes that is the easiest way to get her down. During the phone conversation, my dad mentioned that he was worried for me because he was worried I would get emotional during the meeting. He said it can’t be easy to talk about the challenges your child has. As a parent you go into meetings hoping you hear nothing but good things about your child. Here Joe and I went to a meeting, with the help of our awesome advocate, to prove why our daughter is too severe to be in a specific classroom. Instead of listing all these positives about Courtney, we were talking about her lack of social skills, her lack of peer relations, her lack of communication, her increase in biting and other aggressive behaviors. I had to talk bad about my beautiful girl. (Side note, It wasn’t all bad. We talked a lot about how much progress she has made in 1:1 settings.) So when my dad said he was worried about me getting emotional, I assured him I didn’t but I told him it is hard. It’s horribly hard to focus on the bad.

I was able to remain calm during this meeting for a couple reasons. The main reason is probably because we have this fantastic advocate who has become our voice through this. I have also learned through some difficult situations in my life, that if I dig deep and focus on my goal, I can stay level headed and not let the emotions get the best of me. The goal in today’s meeting? Getting what my husband and I think is the best education for Courtney. I bought a Disney shirt for Joe, the girls and myself that had the autism puzzle pieces in the shape of Micky. At the bottom says “till all the pieces fit”. Part of my job as Courtney’s parents is to be a part of this journey, the good, the bad, the ups, the downs until all the pieces fit.

So today at the meeting, we were ready to dig deep to get what we feel is best for Courtney. We let her team know what we do not agree at all with the placement, but we are willing to try it but we wanted some modifications to the placement they were offering. Though they didn’t come through with all the modifications, it was evident that they were willing to try to work with us. Though we agreed to things at this point, we made it clear that we are going to be carefully watching her progress and we want to meet again soon to reassess. I still struggle with the fact that we are not on the same page, but I’m going to dig deep and have faith that this will work out. If it doesn’t though??? I’m in this until all the pieces fit!

It wasn’t too long ago that Courtney was on a banana strike. During the strike she would occasionally ask for one (using her talker), take a couple bites and be done or she would just not ask for one. I get frustrated when she goes on a strike with a food item because her list of foods are so limited.Courtney’s diet for our two weeks on vacation consisted of banana, cereal, bagel, slim Jim, fruit pouch, yogurt, goldfish and milk. She’s been on quite the banana kick during this vacation. She was eating 2-3 of them a day! Then 2 days ago it suddenly stopped. She was still asking for bananas but as soon as we opened it and handed it to her she pushed it away. I’ve been able to figure out the exact ripeness that she likes and I’m pretty sure it had nothing to do with that. Today it got me mad. We were out to eat and when she pushed the banana away after asking for it I wanted to scream. I wanted to scream, “just eat the damn banana!” I held it in and instead turned to my husband and said I need a beer.

Later on Joe asked me why I let that irritate me so much. The thing is, i wasn’t irritated about the banana. The banana was just the breaking point. It’s her eating in general. During our two weeks on vacation we have done a lot of eating out. That is two weeks of packing up a bag full of food to bring to these restaurants because there’s not a chance in hell she would touch anything there. It’s the making sure that you can find these very specific items in the places you are traveling too. It’s 2 weeks of packing up so much lactose free milk because that’s literally all she drinks. It’s 2 weeks of watching her eat the same 7 things over and over. So when you get to the restaurant and your daughter presses banana and then refuses the banana…Tell me what mom’s wouldn’t lose their shit?

Let me introduce to you Courtney’s “voice”. It’s official name is “NovaChat”. It’s a speech generated device. When a button is pushed, the specified word is said. By pushing these buttons, the user can say absolutely anything.

As I have talked about before, Courtney is non-verbal. She does not have the ability to use language in a communicative way. This past year, Courtney’s teachers and therapists have spent hours upon hours working on teaching her how to use this device. Watching these hours upon hours start to pay off honestly makes me shed tears of joy! It’s a slow process but Courtney can now tell us what food items she wants, when she wants her ipad, and a few other things. They have given her a voice!

Here’s a video of her asking for M&M’s (which by the way is new to her short list of likes). ​

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Teaching a young child to talk is almost natural. You just talk to them, you read to them, you make silly sounds and get them to repeat. Teaching a child to use a device is not as natural because for most parents, they are learning this new language too. I was fortunate enough to already have an introduction to speech generated devices because of my line of work so I wasn’t learning a completely new language.  But it really didn’t make it easier for me. As a teacher, I get frustrated when my students aren’t making progress with their speech generated device. I sometimes would wonder how much the parents were following through with it at home. I would get frustrated if I could tell they weren’t. That is one of the lessons I e learned now that I’m a parent of a special needs child. Here I am, very knowledgeable on Courtney’s device and I still found it difficult to follow through at home. When you’re making dinner, have a baby demanding your attention, husband just getting home and your daughter goes and open the fridge which is her way of saying she wants milk, i typically find myself taking the easy route and just grabbing her milk and handing it to her while saying “milk”. So here’s an example…for a typical child learning to talk, you would get the milk and say something like, “oh, you want milk”. If I want Courtney to learn her language, I need to grab her device and model how she would ask for milk. It may sound easy but again, when a bunch of other things are going on at the same time and you know just by her behavior what she wants, it’s so easy to just get her what she wants. 

It took me seeing Courtney becoming independent in asking for a few of her favorite items for me to realize how important it is for me work harder at using the device throughout her day.

It’s been so cool to watch it suddenly click with Courtney. We show her how to request something motivating and she quickly picks up on it. It was so cool to see her learn how to use her device to tell us she wants to be hung upside down!

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So to all the people who have put in so many hours to helping Courtney learn how to use her device, I thank you from the bottom of my heart. You are helping my daughter find her voice and that is simply priceless! 

The past couple weeks my Facebook news feed has been filled with pictures of girls of all ages at their dance recitals. Most of the girls were elementary school age and up. I even attended one of my niece who is a junior in high school. There were a few pictures of cute little 3-5 year olds. It was those that caught my eye. The first thing I thought of when I found out I was pregnant with a girl, was the future dance recitals. This year would have been the year we would have started the dance classes. Instead of dance classes, it was therapy sessions. Instead of costumes, it was a device to help her talk. Like all those little dancers though, she spent hours upon hours practicing her little heart out just like those little dancers who practiced their little heart out. Yes, some may say, but Erin, Courtney has the right to be in dance classes too. Those who are thinking that haven’t fully gotten to know Courtney yet. If someone actually said that to me, I would probably laugh out loud in their face. Dance classes are not for my little wild one at this point.

I’m not writing this to get people to feel sorry for us because you know what, you know that feeling you had when seeing your daughter dancing her heart out on stage? I’ve felt that feeling. I felt it today when I watched Courtney navigate her talker to tell me she wanted cereal for breakfast. I felt it when I told Alyssa to go give Courtney a high five and when Alyssa went up to her with her hand up, Courtney actually gave her a five back. Two things that she worked on hours upon hours during therapy sessions, now perfected.

Do I ever wish Courtney could do same things other kids age do? Of course I do. Who knows, maybe one day she will be able to take dance lessons. Courtney is leading us on a different journey. May not be your typical journey of dance, sports and sleep overs but it’s our journey and a journey I’m loving. Courtney, you keep “dancing” your little heart out and mom and dad will be there to support you.