Her “voice”…

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! 

Rock Star

My sweet Courtney, you are a rock star! You rocked today. This morning, when a lot of 3 year olds are still in their pj’s enjoying breakfast, you got on the bus at 7:45 with a smile on your face. This morning, while your little sister got to play at home with me, you worked your little tail off at school. Though I’m sure some type of fun was had because you came home in your extra clothes. I have found that usually means you were enjoying playing in puddles from the sprinkler system at school during your recess. Today, while most 3 years olds who had to go somewhere took an air conditioned car, you took a hot bus home from preschool. You were sound asleep when you got home. I’m sure a combination of working hard at school and hot bus ride home made you that sleepy. Today during lunch time, while most 3 year olds enjoy a lunch that is just placed in front of them to eat at their enjoyment, you sat next to your therapist who has you request a bite and then works on teaching you how to feed yourself. No, you can’t even eat without it being a lesson. Then when lunch was over when a lot of 3 year olds take a nap, you went and worked with your therapist. You were so unhappy today. I’m sure because of the rude awakening when we got you off the bus. Most 3 year olds get soothed by their mommy’s when they are as upset as you were during your therapy session, but I had to sit upstairs while the therapist helped you work through your meltdown. It is hard to listen to that. I just want to come and hold you but they are teaching you coping skills and those are important to learn. So instead I’ve learn to block it out. Today I cleaned out my closet!!! You cheered up and ended up having a great session. That is until the very end when you saw me and got all worked up again. This time I got to hold you. I can tell you were just worried I was going to leave you again. As hard as it was to hear you cry again, I so enjoyed the snuggles.

That wasn’t the end of your day though. The curve ball to the day was yet to come. Knowing the last couple of hours of your day was going to be hard on you, I tried to give you the down time. Typically on Tuesdays you get a brief break between therapy at home and feeding therapy at the clinic then after therapy we typically go home to have dinner, bath and then bed. Tonight, feeding therapy was later. If that change wasn’t enough, dinner and bath was before therapy. Oh Courtney, I’m sorry for changing things up on you. I could see after bath that you were so confused by me trying to get you to leave the house. But you, my little rock star, held it together. But wait, more change, your usual therapist was out of town today so you had a sub. I heard some cries coming from your therapy room so I immediately decided to leave. I couldn’t stay and listen to you cry. But I found out the crying was short lived. When therapy was over, I got an awesome report from the therapist.

7 p.m. and I finally take you home to end your long and busy day. You rocked it, just like you always do. Tonight when I curled up next to you to put you to sleep, you briefly looked into my eyes. I couldn’t hold in my tears. Don’t worry, they were happy tears. Happy tears because no matter how much we throw at you, you continue to show you can handle it. Of course like all 3 year olds, you have your moments where you breakdown but it’s typically followed by your happy squeals.

Don’t worry, Alyssa, I can’t forget about you! You are a rock star too! As much as you are already blessing us with the terrible 2 stage before you actually hit 2, you still find a way to wrap mommy and daddy around your little finger. You put up with a lot. You are growing up probably thinking Courtney’s therapists are family members. You have spent so many hours tagging along with mommy to Courtney’s therapists. One day you will understand what is all going on. You were the subject of the highlight of my day. Courtney got off the bus crying today. You were both sitting at the counter. You leaned over, patted Courtney on the back and said something in your jibber jabber language. Pretty sure you were trying to say, “don’t be sad, CC”! Now if you can slow down on the growing up!!!!!

Mommy loves her little rock stars!

 

Our Recital…

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.

The Big Meeting…

Last year at this time I was preparing for Courtney’s first IEP meeting. I was so nervous about being on the other side of the table. Were they going to give her the label, were they going to place her in the appropriate setting, and most of all was I going hold it together as I sat there for the first time on the other side hearing people talk about my child instead of me talking about another parent’s child? That meeting a year ago went very smooth and we were happy with how it went. Of course it was hard to hear someone finally say the word Autism, but since we were expecting it, it wasn’t the end of the world to hear.

Tomorrow we are meeting to discuss Courtney’s placement next year. We were not happy with what they decided two weeks ago and we are going in with an advocate in hopes that they will come up with a better option. I am having a harder time with this than I did hearing my daughter had Autism a year ago. Research shows that intense instruction at the early ages can be HUGE in the development in a child with autism. Who knows, maybe she will do just fine in the setting they have picked but I’m not ok with just crossing my fingers and hoping it all goes ok when it comes to my daughter’s education.

I think one reason why I’m having such a hard time with this is I am taking it deeper then just my child. It’s not just Courtney’s education, there are other kid’s being effected by this too. Kids whose parent’s may not realize that they have the right to argue if they are not happy. The changes being made in Courtney’s district is because of a state initiative that is out there to increase the amount of student’s in an inclusion type setting. Which means there are kids all over the state of Illinois losing out on their appropriate education. That makes me so sad and angry! If I could, I would take on the state!

I hear all the time that Courtney is so lucky to have me as a mom. I’m assuming what a lot of people mean by that is she is lucky because she has a mom who is not only an educator, but I teach children just like her. The truth is, I am the lucky one. I am so lucky to have her. She has taught me so much. From very early on in her life, she has showed me that I am a strong person. She has taught me how to speak up for what I believe is right. She has given me a voice I never knew I had. From spending hours upon hours, rocking her as she screamed through her colicky phase, the endless fights with her dad when trying to decide if she should wear a helmet to correct her head shape, then convincing family members that her speech delays weren’t just speech delays it was Autism, to now being strong enough to fight for the education she deserves. She’s taught me patience, she’s taught me that love truly needs no words. She is giving me the courage to get through tomorrow’s big meeting.

 

Advocating…

I’ve been teaching for 15 years now and I’ve had a few parents say they have talked to a lawyer or advocate, but I have been lucky enough to not have to hold a meeting where a parent brought an advocate. I’ve been a parent of a special needs preschooler for one year now and I’m already bringing an advocate to one of her meetings. It’s not at all how I planned her preschool years to go.

Courtney is in what is called the structured learning class at her preschool. It’s a class that is specifically for kids that typically have autism spectrum disorder. It’s a very small class that uses very direct instruction one on one. This year she was in the half day program. The school has a full day structured room too. Earlier in the year, Courtney’s teacher mentioned to me that they were planning on recommending the full day program for Courtney next year. So needless to say, when we were meeting this past Monday and it came to the part of the meeting where they talked about next year’s placement, I was shocked when they said they are recommending an Extended Day Blended Class. What is the Extended Day Blended Class? In the morning (8:30-11:00), Courtney will be in a class of 15 kids (5 typical kids, 5 at-risk kids, and 5 kids with special needs). Then at 11:00, all but the special needs children go home. Those with special needs will stay for lunch and then get a more structured type learning environment from whenever lunch/recess is over to 1:30. I know, sounds like we are getting the best of both worlds. So why am I complaining? I am all for including my daughter and other’s like her with typical kids when appropriate. At this time, it is not appropriate for Courtney. She barely acknowledges peers when she is in the same area with them let alone play with them or even model/learn from them. I think what frustrates me most about this is why it’s being done. Thank you state of Illinois, for thinking that the best way to educate kids at the early childhood level is by everyone doing inclusion.

I was shocked. So shocked that I didn’t put up a fight. As the day went on, it truly hit me what this all meant and the more I thought about it, the more upset I was about it. I ended up calling the school and telling them I wanted to observe this classroom they were talking about because I don’t feel it’s the right placement. I cried more that day then I diid the day she officially got the autism diagnosis. My gut was screaming, “this isn’t right!” The only problem is, its too big of a fight for me. The most appropriate placement doesn’t exist anymore.

After talking to some friends and family, I decided it was time to search for an advocate. I am Courtney’s voice, but I need someone to be my voice. Thanks to Facebook, I found that person. i am so grateful for this person as she assists me in my biggest role as a parent.

BFF’s

I find it ironic that these two pictures were taken exactly two years apart. Two years ago today, joe, Courtney and I had dinner with our parents and cut into this yummy cake to find out that we were going to have another little girl. We were giving Courtney a little sister, a best friend for life. I couldn’t have been happier. As most know, I come from a large family and we are all super close. I can say without hurting any of their feelings that there is one sibling I am closest to. That is my younger sister, Heather. We are 2 1/2 years a part but pretty much raised as twins and grew up doing EVERYTHING together. So when I was pregnant with Alyssa, I went into the pregnancy wanting a baby sister for Courtney. Of course I would have been happy with a boy but I wanted to give Courtney her best friend.

What I didn’t know at the time the first picture was taken was in the coming months I was going to see little to no growth in Courtney’s language, in fact I was going to see regression. I didn’t realize at that time that I was going to be spending more time finding therapies for Courtney rather than preparing for child #2. I remember people asking me if Courtney was excited to be a big sister? Really? I can’t get Courtney to respond to her name or say a word, you think she has any idea about this little human that was going to rock her world?!

Alyssa arrived and as I suspected, the first couple weeks Courtney wanted nothing to do with her. Then she realized how soft Alyssa’s hands were to the touch. She would go up to Alyssa and take the tiny hand and rub it on her face. Though it was purely for sensory reasons, it was cute to see. It was even cuter when Courtney would be upset about something and then would grab Alyssa’s hand and the rubbing of her hand would calm her down. Then the day she actually called Alyssa, “baby”…it was then I knew, Alyssa was the best gift we could have ever given Courtney. More so than what I hoped it would be.

Alyssa loves her big sister. As soon as she started moving around, she’s wanted to follow Courtney. She watches everything she does. Alyssa is also a little trooper as she has come with me to take Courtney to all her therapies since she was a newborn. Once Alyssa started walking confidently, I also noticed something else. Her skills were starting to surpass Courtney. And honestly, at just 17 months, I think Alyssa is already catching on that she has to “help” me sometimes with Courtney. It’s very bitter sweet to watch some of these moments.

In the last few months, their relationship has blossomed even more. Not sure what clicked, but suddenly Courtney sees Alyssa as a playmate. Courtney does not initiate “play” with anyone but suddenly she is with Alyssa. Courtney is hugging her, she’s trying to kiss her and she wants to “play” with her. Now you have to watch her like a hawk because she doesn’t know her own strength. I’ve caught her grabbing Alyssa by the neck. Her “play” quickly becomes very rough. She means well though. She doesn’t know how to interact with another peer, so now it is our job to teach her. Though while we teach her, I’m going to cautiously enjoy every little interaction the two of them have.

Not so Good Friday…

I use to be so excited about long weekends and or breaks. Don’t get me wrong, I love getting to spend extra time with the girls because as a working mom, I don’t get to spend nearly as much time as them as I want to. I think it’s because it’s viewed as a break from work. It’s not a break though. I leave my school where I teach preschoolers with Autism to go home to my preschooler with Autism and her little sister. I spend my days at work with children who can’t communicate their wants and needs so express them through behaviors and go home to my daughter with Autism and my daughter who is in that “am I an infant or am I toddler stage”. (What is a 17 month old, an infant or a toddler?) Both of whom again, communicate their wants and needs through behaviors. Not finding how this is a break.

Anyways, Courtney and I both had off today because of Good Friday. Joe did not have off so it was just the girls and me all day. AND, no therapies were scheduled. It was just a tough day. To top it off, Alyssa has two teeth coming in and has a double ear infection. I could probably stop there, I think people can get a sense of how the day went. Yep, it was a day of mood swings galore from Alyssa and Courtney literally climbing the walls because I couldn’t keep her busy enough. I wanted to pull my hair out! Initially I had planned on going to my parent’s house for dinner and then they were going to watch the girls while I went to the Good Friday Service. Mid afternoon I called my dad and said I was trying to come up with a good excuse of why I wasn’t coming but the real reason was I was just too damn tired. A little later I did find myself somewhat regretting that I didn’t go to my parent’s house because I think I could have used the change of scenery.  Oh well.

***fell asleep writing this post Friday night. Probably the 1 hour of sleep I got before Courtney woke up and was up for 4 hours. Can’t remember where I was headed with the entry, lol.***

An Autism sucks moment…

If someone were to ask me what the hardest part of being an Autism mom was, I may just answer bathtime. Yep, bathtime. Not the fact that she takes forever to get to bed at night, not that she can’t communicate her wants and needs, etc. Bath time, I HATE BATHTIME! If you were to ask Courtney what the hardest part was of having Autism, I’m guessing she would say the same thing. It is very evident that she hates it. Honestly, you would think I was putting her through a torture chamber. It’s a sensory thing. She does not like the feeling of water. I’m sure it is almost like torture to her. I’m sure when I pour water on her it’s equivalent to me pouring pins and needles on her. That’s what Sensory Processing Disorder is. Their senses are just off. I hate that I have to put my daughter through torture a couple times a week. Yep, Bathtime is an “Autism sucks” moment.

What a difference a year makes…

April is Autism Awareness/Acceptance month. Technically our first year honoring this as an Autism family. Last year at this time I was just starting to speak out about how I was pretty sure Courtney had autism. She was not diagnosed yet even though I was pretty sure about it. I was still trying to convince my husband that she had Autism. My family and close friends know how difficult that part of the journey was. A year ago she was only receiving 4 hours of therapy and was not yet 3 so wasn’t in school. In April last year we were 3 months into the 6 month wait to see a developmental pediatrician to get a diagnosis. A year ago I anxiously waited for a phone call from the developmental pediatrician saying they could take us earlier because at that point, I just needed the confirmation so I didn’t have to work on convincing loved ones that she had autism and I could spend more time working on making sure she was getting all the services she needed. What a difference a year makes! Now Courtney has the official diagnosis, she’s in preschool and making great progress, we’ve added many hours of therapy and all who love her accept the journey we are on.

I actually find it ironic that Autism Awareness Day is just a few days after Amniotic Fluid Embolism Awareness Day. I shared in my last post a picture of me holding Alyssa while hooked up to many machines including being intubated. Not too long after my surgery and several hours before that picture was taken, while family was visiting me in the ICU, my cell phone rang. Called ID said that it was the person I had talked to prior to Alyssa’s delivery about scheduling Courtney to get evaluated by Early Intervention. Still barely knowing what had just happened to me and unable to move or talk, I knew how important that phone call was. Could it have waited, yes, but in my mind we had waited long enough to get Courtney the help that she needed and I didn’t want any more time to pass. I didn’t answer the phone because we were in the ICU, but I frantically typed on my notes app (my form of communicating since I couldn’t talk) a note to Joe saying he needed to call that person ASAP. Sure enough, just days after I got home from my 6 day stay at the hospital, I was having a meeting in my house with a group of people regarding Courtney getting services. So of course it would only make sense for Autism Awareness and AFE Awareness to be around the same time!

I’m a Survivor…

March 27th is a very important day for my family. It’s Amniotic Fluid Embolism Awareness (AFE) Day. What is an AFE? An amniotic fluid embolism (AFE) is a rare childbirth emergency in which amniotic fluid enters the mother’s blood stream via the placental bed of the uterus and triggers an allergic-like reaction. An AFE along with a DIC, is what I suffered from on November 6, 2015 when I gave birth to my youngest daughter, Alyssa. The AFE Foundation was having survivors write up their story so decided to also share my story on my blog.

After going through a miscarriage in August of 2014, I spent the pregnancy with Alyssa being very nervous. So when I went in the hospital to deliver her, I figured I was home free. On Thursday, November 5th, I went to the hospital to be induced. My husband and I went in at 8 o’clock pm after waiting all day waiting for them to call and say they had a bed for me. Once I was in the room and all the registering and fun stuff like that was done, they gave me the pitocin. My husband then curled up on the couch in the room and I did my best to get comfortable as we assumed it was going to be a long night. As contractions got closer together, I decided it was time for an epidural. It wasn’t too long after that, my water broke. At this point I also started getting really anxious and was shaking uncontrollably. The nurse said that could be the epidural. I then started feeling a lot of pressure so paged the nurse again. I was fully dilated. The nurse asked me to give one good push, which I did. She then laughed and said to not push again because I was ready to deliver and she had to get the dr. My doctor arrived and 3 quick pushes later at 3:08 a.m., Alyssa was born. Easy breezy, right?

Everything sure seemed perfect. They handed me my perfect little girl and Joe and I looked at her with so much joy. Dr left because there was another delivery and all seemed well with me. It wasn’t all perfect though. I started coughing shortly after I delivered. With every cough, I felt a gush of blood. The nurse asked if I had a cold in which I replied no. The cough continued and so did the bleeding. She called my doctor back in to check on me. My doctor said it was a lot of blood but not concerning. She gave me a shot to slow the bleeding down. Joe and I were still enjoying our new bundle of joy assuming nothing was seriously wrong. The coughing continued and so did the bleeding. I was starting to feel light headed so I gave Alyssa to Joe. The panic on my nurses face became more noticeable, but even more so, the panic on Joe’s face. The nurse decided to get the doctor again. She wasn’t available so another doctor came in. He also didn’t seem concerned at first but then I coughed and he saw what happened when I coughed. The doctor said to prep me for surgery and he left to get my actual doctor. The room went from concerned to panic mode. Joe was white as a ghost and had such a look of fear. He was saying things to me like “you’re going to be ok”, “we can’t lose you”, “the girls and I need you”. As they were rushing to prep me, I kept insisting someone take the baby from Joe. I was more worried about him and possibility of him dropping her than the life and death situation that I later found out I was in. They rushed me out of the room barely giving Joe and I the chance to say goodbye. When looking back at the events, Joe always talks about how he sat there with our newborn daughter, looking at a pool of my blood on the floor. I can’t even imagine.

I’ve watched so many hospital shows where they are running a patient down the hallway. I always wondered if it really happened that way. Well, it does. They were pushing me so fast and more people kept joining us. I think it was then I realized how serious the situation was. The next thing I remember is waking up with tubes coming out of my mouth and extremely confused about all that had happened. I do remember hearing someone say to another person that my uterus was sent to pathology. I was barely conscious but conscious enough to know what that meant. Joe and family members took turns seeing me and then several hours later, I got to hold my precious Alyssa again. Anytime I got to hold her from there on out, I could feel how it was healing me emotionally.

Breathing tube, iv, beeping sounds made for an awful night sleep that first night. Blood results the next morning gave us another scare. My hemoglobin and platelets dropped. They thought they saw blood in my abdomen after a ct scan. That scared look came back on Joe’s face. It was then that he took my hand and prayed with tears rolling down his face. I really didn’t know what was all going on but by the look on his face, I wasn’t out of the woods yet. They took several other X-rays and results showed nothing to worry about. They decided to give me more blood and platelets. The following day (Saturday), tests showed the numbers were on the rise. Tubes came out and I was starting to eat. I was still in the ICU for a few more days so was still only seeing Alyssa for about an hour 2-3 times a day. Because of the hysterectomy, it was very painful to move. They finally moved me to the mother baby unit on Monday. It was so nice to have Alyssa with me!

I don’t think it was until the doctor confirmed that it was an AFE and Joe showed me info on the internet that I truly realized how lucky I was. Hearing Joe’s take on all that happened is when I knew I just put him through hell. I will forever be grateful for his strength as he stayed by my side throughout it all.

It’s been over a year and both Alyss and I are physically fine, I still have some up and down struggles with the fact that the AFE took away may ability to have more kids. I’ve always wanted a big family and that is not going to happen. Ill think about the hours that i didn’t get to spend with Alyssa those few days. I’ve struggled with survivors guilt after hearing about women who were not as lucky as me and struggle with this need to do something big but the lack of time to do something. Then There are days I look at Alyssa and Courtney and all I can think is how lucky we are.