Till All the Pieces Fit…

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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’s not about the banana…

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?

The stars were aligned…

I was asked one time what it means when we hear Courtney say a word. Does it mean she’s getting closer to talking more? Why is it so hard to get her to say it again? I wish I can answer questions like that, but I can’t. What I can tell you is it is a sign that she’s taking it all in and that there is a lot in that brain of hers. I think that’s why Autism has been so fascinating to me and even frustrating. Some of these children have so much information in their head but getting them to share the information is a challenge. Let me tell you though…when you are able to see even the smallest glimpse of the things children with autism have in their head, it is beautiful. That’s why I find the job of teaching children with autism so rewarding. Those tiny little steps are such a huge celebration and so rewarding to see.

Today I got a wonderful e-mail from Courtney’s summer school teacher:

Good afternoon,

I wanted to let you know that Courtney had a fantastic day today!  While completing a puzzle, she labeled the following letters: v, m, k, o, a, n, p, q, u, h and the sound for z!  During circle time, she said c and d before they came in the song.  She also said “p pie” and “p pizza” while completing a matching activity.

Have a great afternoon!

Yes, I had tears rolling down my face when reading that e-mail. One of her therapists was at the house when I got the e-mail and I of course immediately read it to her. Her response was, “wow, the stars were certainly aligned for her today”. That actually describes it perfectly. For a child like Courtney, to get her to perform like this, so many things have to be perfect. What “things” have to be perfect? I responded to the therapist today by saying “that’ for sure, I only wish I knew what stars were aligned so we can repeat it”. She replied back saying, “unfortunately it’s not just a few stars, it’s thousands of stars”. This is definitely true. Not just for Courtney, but for all people with Autism. For Courtney, maybe she had the perfect night of sleep, maybe the bus wasn’t as warm, maybe the other children on the bus weren’t as loud on the way to school, maybe one of the student’s in the class who usually makes a lot of noice wasn’t as noisy. There is no way of knowing why Courtney could verbally label letters today but not any other day this week. There is no way of knowing if it will happen again tomorrow or will I have to wait a month before I hear it again. What I do know, is this shows the information is in there. Courtney does know her alphabet. Up until recently, I would have told you she doesn’t know her alphabet. It’s hard, but I try not to focus on when she will talk, but boy does it make me happy when I do hear it.

 

Tuesday, July 4th…

Today’s date is Tuesday, July 4th. On Facebook today there were all these posts saying “Happy 4th of July”. There were pictures of people at picnics and people watching fireworks. At my house, it was just a typical day. Started off with a good old wake up call at 5 a.m. from Alyssa, followed by Courtney waking up at 6:45. Being a holiday, you would think we would actually have a therapy free day for once. Nope. I’m ok with that though! Before you start wondering if I send Courtney to clinics that make their employees work on holidays, they leave it up to the therapists. She had a total of 3 hours of therapy today, 2 hours in the morning and 1 hour in the afternoon. The morning session at our house went pretty well. It was the afternoon therapy that was a disaster. We changed things up on her though so it was to be expected. It was a different therapists and at a different time. She cried during the entire session. From therapy we went to my parent’s house. It was our plan to enjoy dinner with them and enjoy a lot of outside play time. My parent’s house is about 30-40 minutes from her therapy. She calmed down in the car and then 5 minutes before we got there, she fell asleep. Courtney doesn’t nap anymore. A simple 20 minute nap can easily make bedtime impossible! Therefore, when we got to my parent’s, I woke her up and got her out of the car. As soon as we stepped in to the house, the crying started up again. It went on for at least 45 minutes. She was an emotional wreck. She turned down all her favorite things. No matter what I did, I couldn’t calm her. On top of it, I had Alyssa whining any time I would hold Courtney. Courtney even used her talker to say, “help, help, finish”. My heart broke for her. The changes and transitions were just too much for her to handle today. I hated making the decision because I was looking forward to hanging out at my parent’s house, but I finally decided we should just go home. She stopped pretty quickly once we got in the car, but you can see in her face how traumatic the day had been. I could see it in her face the rest of the night. My little wild one wasn’t so wild tonight. Kinda ironic, on her “wild days”, all I want is just a fews minutes where she is calm so I can just relax. Tonight I had a couple of hours where she was quite subdued and I was missing my little wild one. I kept feeling her forehead thinking maybe she had a temperature.

So, Facebook looked like today was a holiday. Was it it? What a day.

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.