Sometimes when putting Courtney to bed I lay there a while after she falls asleep just enjoying the peaceful innocence of a sleeping child. She doesn’t stay still long so when she sleeps, I get to enjoy the stillness. When I have a lot on my mind regarding her needs, I lay there hoping that through osmosis, she will give me some type of hint on how to tackle whatever is on my mind. I have found myself a few times whispering the question, “Courtney how do you want me to handle this”?  Tonight I asked her if she is happy in her class, I asked her if I should still be fighting for something different.  Of course she never answers and of course I don’t get any answers through osmosis. So I’m left with the job of figuring out how to handle it myself.

Tomorrow we meet with her team again. We are meeting to review how this placement is working out. Reports say she is happy and doing well. Pictures show her playing next to friends and looking like she is enjoying herself. Of course that makes me happy. The problem is, based on a home team member’s observation, Courtney is a passive participant who needs a lot of prompting to actually be an active participant.

I was talking to a colleague and she was talking about how inclusion works in another district. She discussed how children like Courtney are in a regular classroom. Basically, they are just part of the class while the instruction they are receiving is completely different than their peers. I don’t want Courtney just to be a passive participant. I want her to be engaged. School is not just about making friends and learning from them.

So I need Team Courtney to cheer us on again tomorrow. Not sure what I’m looking to get out of this meeting, but do know that I still am not satisfied.

October is AAC awareness month. So many may ask, what is AAC stand for. Definitely hard to keep track of all the acronyms in the special education world. When you both teach children with special needs and have a child with special needs, you often find yourself talking in acronyms forgetting some may not know what you are talking about. AAC stands for Augmentative and Alternative Communication. AAC comes in many forms. For Courtney, it’s in the form of a tablet with a layout of pictures that is considered a voice output system. These pictures lead to more pictures that lead to more pictures and so on. When you push these buttons, a voice speaks.

Courtney started this system last year. We decided to go this route after spending a year of her receiving speech therapy and seeing that her verbal language was not improving. Going the route of a device isn’t easy either. It wasn’t just handing this cool looking tablet to her and she would suddenly start talking. Imagine your first day in a foreign language class. Basically, handing a device to a child is like you looking through that foreign language text book when they first hand it to you. Except you are handing this device to a child with significant delays.

So how do you even begin to teach a child how to use it? The best way to teach a child how to use it is the same way you would teach a baby to talk. Model, model, model. Here’s the difficult part. For most parents, this device is a foreign language to them too. I watch Joe struggle to use it because of how much it is still a foreign language to him. I find it very hard to use the device at home myself and here I am “fluent” in it since my students at school all have one. Courtney has her ways to communicate her wants and needs to us through non-verbal ways. So in the midst of making dinner, a 2 year old demanding your attention, husband arriving home and everything else that can happen in a 15 minute span, when Courtney goes to the fridge and opens the door, sometimes it is easier to just get her the milk without making her request it with her talker. But how is that teaching her how to communicate? Working with Courtney on this device has opened my eyes to what it’s like for the parent’s of my students. Here Courtney has someone who is able to speak her foreign language struggle in the midst of chaos, how are parent’s who don’t know the foreign language yet able to model in the midst of chaos? I use to get really frustrated with parents when they weren’t using it at home, but I kinda get it now. Sometimes I get really frustrated that Joe isn’t using it more, but again, I have to step back and realize, it’s just as much as a foreign to him as it is to her. So how do we make it less of a foreign language to families? As for me, what will make me use it more with her? I just have to keep reminding myself that if I want to teach my daughter how to communicate with the world around her, I need to be as diligent as I am with teaching Alyssa how to speak.

I’m doing a poor job selling how awesome AAC is. It is truly awesome. These devices give children like Courtney a voice. Let me tell you, I remember her first request for milk on this thing like most people remember their child’s first word. One of my sisters watched the girls not too long ago. She got to observe Courtney during one of her therapy sessions and got to see her use the device. When I got home, my sister talked about how cool it was to see her use it and how it would be great to be more familiar with it. That made my day. It’s motivating me to work harder not only with Courtney, but teaching those who love Courtney how to use it. Alyssa isn’t only learning how to talk by listening to me. She is listening to her cousins, her aunts and uncles, her grandparents. Courtney needs to learn from them too. It’s time for me to teach them too. Not sure how yet, but no time better than AAC Awareness month.

I have nine brothers and sisters. Most of whom are married and have kids of their own. So when we have a gathering, 20 people is a small turn out. We usually quickly add up to 40. So as this weekend approach that included my nephew’s wedding combined with a family reunion, I got a little anxious on how Courtney would handle it. Of course it isn’t the first family gathering she has gone to, but now that Alyssa is a walking, talking, bossy, demanding little toddler, handling that on top of making sure Courtney isn’t over stimulated has become nearly impossible at times. To top it off, my husband was unable to make it to the wedding reception on Sunday.

Joe and I came up with a plan to make the weekend work. Or so we thought. Then things happened that changed the agenda on Saturday so we had to do some rethinking. Trying to figure out our plan of attack started stressing me out. I even sent a text to my other sister who has a child with special needs saying I was stressed trying to figure out how to make it work knowing she would understand. I said at the beginning of this autism adventure that I was going to try to not let Courtney’s autism run our life. Not that it’s a bad thing if you do, but it was important to me not to let it. So when our new plan was to have Joe stay back with Courtney and just Alyssa and I go to Saturday’s events, my heart ached a little bit. I had made a decision that was probably best for Courtney and made my life somewhat easier, but was it what I truly wanted. Since nothing seems to go smoothly, something else came up at the last minute and we had to change our plans again. So, we were heading to a family gathering at a forest preserves as a family of four with the plan that Joe would leave to deal with something that came up on his side of the family and the girls and I would go to dinner with my family. It can take a village though to go out to dinner with my girls so I made sure my family knew that me joining them meant I needed help.

I was so frustrated when some of the changes happened on Saturday, but in the end, it really did work out for the best. I got to watch Courtney bond with her Uncle Phil as he spent 10 minutes pumping water at the water pump so she can play in it. The look on her face was priceless and you can see that it was making her uncle happy that he was able to make her so happy. Thank you, Phil!!! I got to watch Alyssa continue to have such a beautiful relationship with her grandma even though she doesn’t get to see her as often as she use to when she watched her during the week. Boy does she love her grandmas! I got to see Courtney get comfortable with her Aunt Laurie who was a HUGE help during dinner. Watching Laurie get excited that Courtney was taking her hand was beautiful. It meant so much to me. It was a beautiful day!

Now for Sunday. Thanks to the bright thinking of the mother of the groom, a while back it was decided that Savannah, our nanny, was going to be my date for the wedding reception. That way the girls could be there for part of it , I had help and when they had enough, they could go home with Savannah and I could continue hanging out with my family. About 20 minutes into the wedding reception, it was evident that it was the best decision. Courtney melted down pretty quickly and actually so did Alyssa (who fell off a chair). We each took one of them and went somewhere to calm them down. Alyssa calmed down pretty quickly but Courtney struggled for a while. Savannah, my hero, took her outside. Savannah could see how much she was struggling with the crowd so she found stuff for her to do outside for a while. Thankfully part of the reception was outside so they were still part of the event ;). Courtney was able to come back in and be a part of the gathering for a short time. You could see in her face though how hard it was on her. But here is the positive of all of this. I at first was worried about what people were thinking as she melted down and I quickly left the big room with her, but when I came back, people wanted to not only know how they could help, but wanted to know more about Courtney and Autism. I enjoyed showing my sister’s in-laws Courtney’s talker and explaining how we teach her how to use it, I enjoyed introducing the young lady  who has helped my family in ways that I could never explain to my family. Better yet, I was able to get through a busy weekend without letting Autism run our life. We made it work.

A huge shout out to all those who helped make it work!

I never considered my self as a strong person. It was never an adjective I would use to describe myself. Life happens though and it usually ends up being those life experiences that makes you stronger. My divorce definitely helped make me a little stronger. I learned a lot about myself during that time. Learned that I am strong enough to pick myself up and move on. Learned that I am strong enough to live by myself. Though even after that I’m not sure I would have still considered myself strong.

It’s amazing how children change you. I finally came to realize how strong I was when I had to convince other’s that Courtney needed a helmet to correct the shape of her head. That strength had to come out even stronger when I was noticing regression and significant language delays in her and needed to convince loved ones that we needed to be concerned. Now, here I am, fighting for an appropriate education for my little girl. I wrote a not so nice (but professional) e-mail recently to the principal of her school and as I sent it, I was kinda in shock that I wrote it. I truly didn’t know I had it in me! It made me think about how you never want to mess with an animal who is with their baby. Kinda makes me want to say, “don’t mess with this mama bear”!

I’ve been very frustrated the past 24 hours because things have been brought to my attention that causes me to believe that as well as Courtney seems to be doing at school, I’m not sure she is being challenged. I am so glad she is happy at school and she’s not being aggressive towards her new friends, but I feel she is happy at school because they are letting her run the show. I think it is great that she is able to handle being around a class full of “typical” peers. I think it’s great that she is enjoying playing in the different centers including the paint center where she seems to love to paint herself more than the paper. But is she learning? Are demands being put on her? It appears I need to start building up my new found strength as we meet again with the team in a couple of weeks.

My beliefs on how children with special needs should be educated has been tested a lot lately. I’ve been hearing a lot lately about how the state has an initiative for all preschoolers with special needs to be educated with their typical peers. I’ve heard that all the research shows this is the most effective way to teach children with special needs. So what they are telling me is that all these years i have been teaching in a way that is hindering my student’s success? I don’t doubt that the research shows inclusion is the way to go. I would also say maybe as teachers, we need to change our thinking some on which children are ready for inclusion. Teachers can be very protective of their “children” and may need to let go a little bit and know it will be ok. But does the research show that it’s the way to go for EVERY child? I like the example in the picture I posted. A couple children go into the doctor’s office all with different symptoms. Would you really give all of them cough medicine to treat their different symptoms? Of course not. So why does education have to give all children the same type of education? Let me put it this way…when picking a college to attend. I knew I would not do well in a large college where class sizes are on average above 50 and the teacher’s barely know your name. I knew the type of college setting I needed was small. If that’s the type of setting that I do best in, how would it be more beneficial for me to be in a different setting? So I feel what the state is saying is who cares what the “symptoms” are, there is only one way to treat it. That my friend is not fair. Great, it’s equal and all. But for some children, it is not fair. Want to know what’s ironic? This poster was put up at a workshop on inclusion for all. Hmm…

As most know, this is personal to me in so many ways. This initiative makes me worry about the student’s in my class being that all of my students have very significant delays. Most of all, it makes me worry about my daughter. Two weeks ago the “typical” students started so she is now part of a class of 15. Though there have been reports of biting, she has not bitten a peer. Though the daily reports say she had a good day, it’s been very vague so not really sure how it is going. I’m trying to hang on to the idea that no news is good news, but I’m not believing it. I guess I will find out more at the follow up meeting in a couple weeks.

Tonight got me though. Tonight was Curriculum Night. The first part of the night we got to go in Courtney’s classroom where the teacher gave a little presentation about the class. She introduced herself, went through the daily schedule and the different curriculums that are used. I sat there and listened to these different curriculums that i know for a fact are way over Courtney’s head. The teacher went on and on about how they are teaching letters and their sounds, how they teach hand writing, how they teach the rules of the classroom. She kept saying, “so if your child comes home talking about this, that is because this is what we are doing”. The only thing I could think of during all of her presentation is this is WAY over Courtney’s head. She is working on things like feeding herself, drinking from a cup, sitting for an extended length of time, not putting everything to her mouth, following directions. Sure, expose her to it, I get it. What was most frustrating though. No where in the teacher’s presentation, did she talk about how she is going to address the needs of the children who are not ready for some of these things. Though she did quickly mention that it was a blended class, from her presentation, it is not taught like it is a blended class. For a blended class, as a parent, I sure felt like I went into the wrong room. I shouldn’t have felt that way.

All this inclusion talk has left me not only doubting my teaching styles but questioning if I’m being a bad parent for thinking my daughter shouldn’t be in a blended class. But I’m sticking to my gut. Cough medicine will not work for a child puking. Blending will not work for a child who is developmentally not ready.

I sit here on the the eve of Courtney’s 4th birthday looking back on all the adventures she has taken us on in just 4 short years. Adventures that have brought happiness, laughter, joy, frustration, tears, fear, and many sleepless nights. Adventures that if you asked me 4 years ago today if I was prepared for, I would say not a chance in hell. I remember the day we brought Courtney home from the hospital. My sister Cheri called me and I immediately broke into tears. I remember telling her that I was scared to death because now I had this little girl that I’m suppose to just know how to take care of. She reassured me my feelings were normal and that I did know what I was doing. To my surprise, we did.

Watching her grow into her little ball of energy has been life changing. I knew things would change once we had kids, but I never knew how much I would change. Courtney, has changed me. Being her mom has made me a munch stronger person. Because of her I’ve had to learn how to trust my gut and find my voice to fight for what I believe. From when she needed a helmet, needed early intervention, needing additional therapy to getting her an appropriate education. I also never knew how well I could learn to function on very little sleep. But snuggles with her in the middle of the night made it worth it!

I’ve also learned what the saying “it takes a village” truly means. Whether it be people helping me watch her and Alyssa, therapists, friends and family giving their love and support or even those who just cheer us on via social media. I will never be able to thank our “village” enough!

Tomorrow is more than just her birthday. Tomorrow is the day her class goes from 5 children to 15 children. I only wish I could be right by her side tomorrow to help her feel comfortable and regulated. I watched her this weekend during her different birthday parties really struggle at times with all the people. She was able to hold it together and both gatherings ended up a huge success, but I was there to help her. I won’t be there tomorrow.  I can only hope it will all go well.

So…Courtney, the happiest of birthdays to you! Mommy and Daddy love you to pieces and are so proud of you.

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.