Hi there! Welcome to my blog! My name is Heather and I have been married to my husband Korby for almost 6 years now. I am a mom to a 4 year old girl named Paislee, and a two year old son named Kolt. To begin our story, I want to rewind a little bit. In 2016 I was blessed with my first born. Paislee is everything I have ever wanted, and more. She is sweet, passionate, and such a caring little girl. Everything “girly” is right up her alley. Bows, dresses, costumes; you name it, she has it. We’d had so much fun raising her and decided that we couldn’t wait to give her a sibling. Fast forward to 2018, we were blessed, yet again, with another child. A BOY. I remember being so excited to have one boy and one girl… The best of both worlds right? My first initial thought was that I couldn’t wait to have him play sports. Would he look like my husband, or me? I really hoped that he had my husbands height. At around 10 weeks gestation (not even a week after I had announced that we were expecting) I was hemorrhaging and was rushed into the ER. Filled with so many emotions, I remember bawling my eyes out that this perfect child that I had dreamed about was no longer with us. I sat in the ER bleeding for what seemed like forever. Nothing to do but to wait. The longer we waited, the longer it seemed like the inevitable. After about 3 hours, I finally took a pregnancy test. They determined that I did, in fact, still have the pregnancy hormones in my body. Which then lead the nurses to send me to Radiology to have an ultrasound done. I vividly remember how big of a relief it was to see my little baby on the ultrasound screen. The nurses told me that I had a subchorionic hemorrhage. Basically, the placenta detaches from the wall of the uterus causing hemorrhaging from the clotting. The ER Dr. had told me that I had a 50/50 chance of keeping my baby. Naturally, for the rest of the pregnancy, I took it easy and prayed every day to keep my child. It was very hard to stay positive knowing that I could potentially lose my child. Fast forward to almost 30 weeks, I was lucky enough to go full term without miscarrying. When Kolt was born, it seemed like such a blur. I started having contractions the night before, but went to bed thinking that they weren’t coming fast enough to go to the hospital. At around 3:30 am I woke Korb up to tell him that we need to go to the hospital, NOW. On the drive to IVCH, I remember having the urge to push. Korb is driving about 100 mph screaming “Don’t push we are almost there!”. Mind you, if you have ever had a child, you can’t just not push. We parked on the wrong side of the hospital (naturally) and had to walk around to the emergency room entrance to be admitted. At this point, I would walk about 3 feet and have a contraction. My contractions were so painful and so close together that when I got to the Emergency Room sliding doors, I had to take a break. Therefore, the sensor kept opening and closing the door right in front of my face. The security guard was probably laughing at the show I was giving him. By the time we were in a hospital room, it’s now about 4:30. My nurse told me that I was fully dilated and ready to push. Wait WHAT?! I’m not delivering this baby without an epidural. Well obviously, I had no choice. The nurse (bless her) reassured me that everything will be ok. I asked for the Nitrous Oxide mask and sucked out as much as I could to ease the pain. As this is all is happening, I told my nurse that I really want to push this baby out. She told me not to push, because the On-Call midwife (Dana) wasn’t there yet… Well, I didn’t listen and pushed, which broke my water. I remember the midwife Dana literally slid in, threw a gown and gloves on and said “here we go”…. I gave him less than 10 pushes and out he came! Talk about a wirlwind!! First thing that I noticed about Kolt was that he came out screaming… literally SCREAMING. Who wouldn’t? I literally went through the fastest labor and almost delivered him in the car. For about the first hour, Kolt screamed non stop while they took all of his vitals. He actually didn’t stop screaming until we fed him. When he was born, he weighed in at 9lbs 15 oz. We chalked up the hour screaming episode as being a result of him being hungry due to his size or maybe just the speed of his birth.
During Kolt’s first 5 months, he was an exceptionally hard baby. He woke up about every 2 hours, and most of those times he was inconsolable. When he would wake up at night time, he would cry so lout and hard, that we thought someone was killing him. His screaming was pretty disruptive. He would have ear piercing screams until we fed him. Sometimes it took hours for us to get him back down at night.. During the day, he would only cat nap, which made it very hard for us to get anything done around the house. It was a very stressful time for us all. Many people assured us that “the second child is always the hardest”. Deep down, I started to think that something was seriously wrong. At this point, the doctor was thinking that he may just need to switch to a gentle formula (which only made him hungrier) and then a more filling formula to curb his cravings, none of which helped his temperament. During this time, it seemed as if Kolt was very hyper-sensitive to sounds and light. For example, if there was too much noise, this would lead to an uncontrollable screaming episode. If we were outside, his eyes seemed to squint a lot, even on cloudy days. At 9 months, I had mentioned to Kolt’s pediatrician that I had suspected that he may have Autism. For those of you who don’t know, Autism is a developmental disorder that is characterized by deficiencies in social interaction and communication. Many children have repetitive behaviors and actions.
Prior to getting my degree in Dental Hygiene, I had pursued a degree in Speech Pathology at Illinois State. As a parent that has more knowledge in neurological disabilities, I had heightened awareness to observe Kolt”s behaviors. When I brought up Autism, he really didn’t seem too concerned and brushed it off. As Kolt was getting older, he was very quick to hit all of his milestones. By 5 months he was sitting up on his own, by 8 months crawling, and by 13 months walking. Kolt would do all your typical gestures like waving, blowing kisses, highfives, etc.. Additionally, his diet was fantastic. He pretty much ate whatever we put in front of him. After having so many hard months in the beginning, things were starting to look up. His temperament started to get better, and he seemed to be more content overall. At the next several Dr appointments, his pediatrician had asked me if Kolt was talking yet. His vocabulary was starting to be limited to “mama, dada, night night, and ba-ba (bottle)”. The pediatrician had mentioned that if he isn’t speaking by a year and a half, then I should have him evaluated for Speech Therapy. Since Kolt wasn’t communicating all that well, he would often grab our hands and then bring us where he needed us to be. For example, if he wanted a snack, he would grab my hand and throw my hand up towards the pantry for a snack. As the year and a half mark was quickly approaching, we noticed many changes in Kolt’s mannerisms. Kolt was starting to get more frustrated due to his inability to communicate. If we were in a crowded setting, he would frequently spin in circles. With too much stimulation, it was his body’s way of regulating himself. Cute, right? I remember so many people saying how cute it was. To me, I knew there was something wrong, and it hurt me anytime someone made that comment. Stopping his circles often resulted in a meltdown. He also rarely played with toys. If he did want to play, he wanted to line up his toys, rather than play with them functionally. For example, a set of blocks he would rather line up, instead of stacking them on top of themselves. If you disrupted his pattern, he would have a melt down. At this point, Kolt still had eye contact. I remember clinging on to hope that he still had eye contact, so maybe he didn’t have Autism.
Around October of 2019 we followed his Dr’s orders and had his speech evaluated. This is where I met Nicole Gedraitis, his current Speech Therapist. Nicole first evaluated him and we started doing weekly speech sessions. At this point our goals were pretty straight forward, increasing communication by working on pointing, eye contact, responding to his name, joint attention, playing functionally, etc. During this time, I felt very hopeful that maybe he still didn’t have anything wrong, and maybe he will still eventually catch up. Even though I felt hopeful, I remember a time, where we woke up and I literally lost ALL eye contact. He also stopped responding to his name. Most of the time, he was staring off into space or the lights. He rarely wanted to interact with his sister which broke my heart. I remember going to Kolt’s Speech session that week, and I’m not even sure if we accomplished anything with Kolt. I think I cried for a whole 20 minutes. How could my child go from having eye contact, playing with toys, babbling, hitting all his milestones, and using gestures to all the sudden, regress to almost nothing. I WAS DEVASTATED. Nicole was such a good listener. She has been such a God Send for me. In times when my family wasn’t even sure what was going on with Kolt, she was my shoulder to cry on. Once we lost eye contact, I knew it in my heart that he has Autism. The next thing I did was go home and cry. I cried for a solid week. I’ve never felt so alone and scared. After that week, I told myself that I had to suck it up. Being sad about the situation won’t help my child get any better. What I needed to do is buckle up and get ready for the ride we were about to get on. Nicole thought it was a good idea to have him evaluated for Early Intervention. Through Early Intervention (EI), if a child has a deficit of 30% or greater, then he/she will qualify for services. Kolt had his evaluation in January of 2020 and qualified for weekly Speech, Occupational, and Developmental Music Therapy. Due to the state of IL being so backed up, it takes about 6-9 months to be evaluated by the state for an official diagnosis. Even though he doesn’t have a diagnosis yet, we know that he is in fact on the Autism Spectrum. Each week we have 3 therapies. I work 30 hours a week and then have to find time to fit therapies in. It is not easy by any means. I pretty much work a full day, then come home and try to do as much therapy geared play as I can. I’m very thankful that my mom and mother-in-law have been so receptive to helping me work with him when I am at work as well. I have a great tribe to support us, and it means the world to me!
A typical day for Kolt has to be planned out. He doesn’t like any surprises. Everything must have a sense of predictability at this point. Many children with Autism have Sensory Processing Disorder as well. That means that they have trouble processing senses. This may lead to many food aversions. Many foods he wont even try, because the tactile or olfactory sense of the food has already turned him off. He also really enjoys rough play. Gentle touch tends to bother him. His Occupational therapist refers to this as a Sensory Diet. I am constantly trying to figure out how to get him sensory input in his day to day life.
We took a hard hit when Covid-19 happened. We had just gotten settled in to our weekly 3 therapy sessions and then the state shut down, which lead us to lose our in person therapy sessions.. I was devastated yet again. I was so fearful that I wasn’t going to get the services that he needed. I felt like we were making such improvements and then the rug was pulled out from underneath me. Fortunately, I was furloughed from work at that time, and I was able to spend 2 1/2 months home. I dedicated much of my time to bond with both kids, and I heavily worked with Kolt to improve his communication. The silver lining in this awful virus was this precious, extra time with my kids . It’s something I will never forget. Now, we are able to meet with his therapists through zoom or FaceTime. It’s not easy, by any means, but we are starting to get a system down and I’m really starting to notice even more improvements with Kolt! His therapists have made me feel so much at ease throughout this whole process.
Ok, enough about the sappy stuff! Despite all of Kolt’s hardships he has made such drastic improvements. Since Kolt has been in his therapies, he has gained eye contact back (yay!), and responds to his name very consistently. Even though he isn’t saying any true words yet, he is doing gestures now (blowing kisses, giving high fives, pointing to body parts, clapping) all of which he had previously lost! I made a communication board for him at the house and it consists of pictures of food or play items that he regularly uses. He will go to the board and give me the picture to communicate what he wants. The biggest success for him has been the increased play with his sister. I often cry tears of joy when I see the two of them together. He is initiating play with her and wants to be around her now.. His desire for social interaction has improved. My daughter has been the biggest help. Never in my wildest dreams would I have imagined that I would have such a sweet, self-less daughter. She is such a great help with Kolt. She is very eager to learn the ways of therapy . She even told me that she wants to be a Speech Therapist when she grows up because of her brother (cue the tears). Heavily populated areas still give me some anxiety. He likes to squeal and flick his fingers and I’ve noticed some eye gazes. It’s not the gazes that bother me, I just hope that people learn to embrace his quirkiness like I do, especially as he gets older.
The main reason that I wanted to start this blog was to not only share our successes with EI therapy, but to help spread the word and break the stigma that Autism is bad. Autism is not a diagnosis that should be feared. I was scared at the beginning and the more research I’ve done, the more I’ve learned. My goal is not to change Kolt. I could sit there and beat myself up thinking if his Autism was a result from my early ER trip/near miscarriage, a horrible chest cold later in gestation, an environmental work factor, or even genetics that had contributed to his Autism, but that isn’t going to change anything. I am not bitter. I know God has a plan for us. I’m so thankful that I was blessed with Kolt, because it has made me such a better mother. With a diagnosis like Autism, it helps to be surrounded by a good support system. Our immediate family has been such a huge help. I also have to give a big shout out to my husband.. he runs around and cooks dinner for us every night. (How many guys actually do that?) When I get home from work, I jump right into “therapy” with Kolt and my husband literally NEVER complains . This is our lifestyle now and it works for us. We make a great team. he understands that this is what we need to do. He’s just great and I can’t thank him enough. We do still have some really hard days (some of those I question if I even know what the heck I’m doing), but then we usually turn it around and have just as many exceptional days. It’s definitely a rollercoaster ride, but I’m learning to navigate a little better as I continue forward. I can tell you right now that the way Kolt looks at me makes this all worth it. His hugs are the tightest most genuine hugs, and you can’t just get those anywhere! I’ve learned that “little things” should be celebrated. It’s such an exciting time when he learns a new trick. I don’t take the little things for granted. I am constantly challenging him, and I know that this journey isn’t easy for him either. I had all of these hopes and dreams for my child, but those dreams may change, and that’s ok. It’s Kolt’s world that I’m living in, and he will be the one to guide me though it. I’m constantly learning more and more about Autism, because I try to be patient and observant. I learn so much just from watching his body language. I am beyond proud of how hard he has worked since we first started therapy. He is my baby boy and I will do anything I can to help him understand the world better. I will be by his side every step of the way as we navigate this together. Autism is a very different way of viewing the world. Why fit in when we were born to stand out?. We are all a little quirky. It’s time to embrace our differences. I also urge you to have the conversation with your kids about differences. Beauty is much more than what’s is on the outside. Lastly, be kind to each other. You may never know what someone is struggling with underneath the surface. Remember, it takes more muscles to frown than it does to smile. You never know, smiling can make someone’s day. Well, if you stayed with me through this long narrative, thank you for listening! If anyone is struggling like I did, please reach out to me. It helps to know that you are not alone. We are in this together.
XOXO Heather
Koaching Kolt 