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.

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.

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!

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.

I really don’t like people who are judgemental. Unfortunately, parenting brings out this trait in people. As soon as you announce you are pregnant these people come out of the woodworks! Everyone has an opinion…eat this, don’t eat this, don’t take these meds, these meds are safe, epidural, natural, hospital birth, home birth. You can be judged based on anyone of these decisions. Then the baby is born and everyone is an expert on parenting. But wait, add that your child has special needs…let’s just say, people can be cruel.

Yes, I have already gotten the looks. That look at restaurants when people see her on an iPad, or when we pull out food for her that we brought from home. I got a lot of looks when I used the backpack leash with her! If I had the guts, I’d give these people a piece of my mind, but that’s not how I was raised.

Something happened just yesterday in fact. I was showing some friends and acquaintances a video of Courtney using the footboard to our bed as a balance beam. One of the acquaintances made the comment (in a that’s so cute type of voice), “naughty girl”. This really irritated me. I know she wasn’t being mean by it, but it bothered me because she wasn’t being a naughty girl. She does it because we let her. I’m sure a lot of you have seen my pictures on Facebook of Courtney climbing on couches, furniture, counters. Heck, there’s even a picture of her trying to grab the chandelier while standing on the table. So we kinda give Courtney free range when it comes to her climbing (though we do stop her from the swinging from the chandelier, lol). Why the free range? Well, because she needs it. Her sensory system craves being in high places, bouncing, etc. we have a sensory area for her but we also let her find her own ways to meet her sensory needs. Yes we set boundaries…tables and counters are not to be climbed on even though she still tries. We also are always near her. Using the footboard of our bed for a balance beam and the post for a diving board? Well, that  is a nightly routine. Would some say that is a bad idea? I’m sure, but you know what? What works for some families doesn’t work for other families.

So I ask people, when you see that child kicking and screaming in the grocery store, playing on the ipad at a restaurant, climbing things they shouldn’t be climbing, just skip the judging. You just never know. May be it is a child being a brat or maybe, just maybe that child has special needs of some sort and that parent is doing the best the can do.

In my first entry I mentioned that we saw regression in Courtney. There was definitely regression. Back when I first posted I probably would have even said Courtney was developing “normally” before we saw the regression. Back when I posted that we had Alyssa but she was still an infant. The only “normal” baby/toddler development I had seen before Courtney was my nieces and nephews.

I think it was when Alyssa was about 9 months or so that I realized I missed some of the early signs in Courtney. Some of these signs anyone probably could have missed because some of it could have just been a difference in temperament between to kids, but looking back at it now, they were signs. Alyssa loves food and is not picky at all. Courtney has been picky about food since day one. Heck, she literally refused breast milk after a week. When introducing solids the pickiness continued. But it went beyond being picky with Courtney. Whenever I pull food out, Alyssa gets so excited. She will chase you down if she sees food in your hands. Courtney doesn’t show any excitement or eagerness when she sees the food she likes. I remember someone telling me you will know when to start table food because they start seeming interested in table food. I would probably still be waiting if I based it on that for Courtney!

Then I started noticing Alyssa’s social skills. Courtney use to have good eye contact and she would smile if I did but it stopped there. Alyssa and I early on would be able to have non-verbal conversations with are eyes and facial expressions. She watches people like a hawk. As she has gotten older, she will initiate the smiles and the laughs. Courtney’s eye contact decreased as she got closer to the age of 2 which was definitely one of the red flags that lead me to believe she had autism.

Then came last weekend. Alyssa kept walking around with a baby doll. A baby doll that Courtney got when she was 1. Now back then Courtney would give the doll hugs and pretend to feed the baby with a spoon which soon became another skill she lost. When Alyssa plays with the doll, it’s a whole play scheme. She feeds it, she rocks it, she pretends to sing to it, she put it in a stroller and was jibber jabbering at it. She got it back out and fed it more, the play scheme went on forever.

It is kind of bitter sweet to watch these differences and to watch Alyssa grow. Even though Alyssa is showing absolutely no signs of being on the spectrum, I won’t stop worrying like a lunatic about every little milestone for her until she’s at least 3. Joe and I celebrate each one like she just one a gold medal. For some of these milestones, we remark to each other that Courtney never did that. I will sometimes feel frustrated that I didn’t catch these red flags earlier in Courtney, but I can’t dwell on it. I will also sometimes have a little tug on the heart as we slowly watch Alyssa surpass her older sister in some skills. Then I stop and remember. Courtney is making progress and that is all that matters. Courtney is reaching her milestones at her pace. Alyssa is learning to talk using her words, Courtney is learning to talk using a communication device. Courtney is learning how to sit and work and follow 1 step directions, Alyssa is learning how to pretend play. Both are healthy and happy. I honestly couldn’t ask for anything more.