A few years ago my Pre-K class was on the playground when our son Koby’s class came out for P.E. They used the field that was away from the playground, but they were still close enough to see. I watched Koby walk around alone for awhile before he approached a group of 4-5 boys. When they saw him coming, they scattered and went their separate ways. Not only were they avoiding him- they ran from him. Koby paced around with his head down the rest of the time. I was so glad I had my mask and sunglasses on because I couldn’t hold back tears. I knew how much effort it took for him to approach that group of boys. It took so much bravery and as soon as he was brave enough to approach them, he was left standing alone. A few minutes later the P.E. teacher had Koby and another student help carry some items to the dumpsters with her. He looked over and his eyes lit up when he saw me. I could tell he was smiling through his mask. He waved and said, “Hi, mom!” This happened years ago, but as I type it out today I have tears streaming down my face. This was just one incident that I witnessed. I can’t imagine how many other incidents have happened throughout the years that I haven’t seen.

To be completely transparent, there have been so many heartbreaking moments as a mom of an autistic child. That’s something you don’t want to share with other parents but it’s the truth and it’s something I wish I had known. The thing with autism is it’s a spectrum. Someone on the spectrum can be verbal and can live a relatively normal life, but someone else on the spectrum may be nonverbal and may have to completely rely on someone for all of their basic needs. It presents differently in every individual. A diagnosis of ASD (autism spectrum disorder) means that your child’s communication, social, and play skills are affected in some way. They may need minimal support or substantial support on a day to day basis.

For Koby, and others that are diagnosed as “high functioning”, things can be complicated. For example, Koby isn’t severe enough to be noticeably autistic. I’ve had people tell me, “You would never know by looking at him,” as if there’s a certain way autistic people should look. For those who are familiar with autism or know someone on the spectrum, you could observe Koby for 30 seconds and pick up on it. No matter how “normal” his appearance may be, there is so much anxiety and communication challenges that he faces from day to day. A lot of times, because he “looks normal”, his developmental disability is dismissed and he’s considered disrespectful and quirky.

A few years ago my class would walk by the cafeteria as Koby’s grade level would be eating lunch. For the first few months he would be sitting at one of the back tables either alone or with one other student. Anytime there was another student sitting with him, it wasn’t by choice. It was because that student received silent lunch that day as a punishment. A lot of times people on the spectrum have a difficult time making eye contact and engaging in conversations, so making friends can be a struggle. To be a 10 year old boy at the time, I knew he had to long for a friend to talk to about all of his favorite Mario games or every handheld gaming device he’s ever researched. One day the fourth grade teachers invited him to sit with them at their table and he sat there every day for the rest of the school year. I think that may have been the first time Koby felt accepted for who he was. You could easily see by his body language and his head held high that he felt confident sitting with his teachers.

What I wish I had known is that autism will affect you and your child in the most basic aspects of your lives. The most difficult part is in the every day details. I want to share with you some of the things I wish I had known would impact our every day lives with autism.

What I Wish I Had Known About Sleep

Sleep was one of the first obstacles we faced before we even knew he was autistic. Even as an infant, he didn’t sleep. He was a very colicky baby. He would scream and cry most hours of the night and it was incredibly difficult to soothe him. As he got older, he still had a difficult time sleeping. We tried Melatonin and a prescription from his pediatrician, but neither seemed to work. The most difficult thing with medication is that it’s trial-and-error until you find what works best and the waiting can be frustrating. Until you’re able to find what works best for your child, even if you choose not to medicate them, don’t give up.

What I Wish I Had Known About Toileting

The next thing that had an effect on us for many years was toileting. Koby wouldn’t want to have a bowel movement and would hold it as long as he could. We always knew when he would need to go because of his behavior. He would become especially defiant, more so than usual, when he needed to use the bathroom. Even as a baby he would scream and stiffen up when he had a bowel movement. I remember how scary it was for me as a young mom to witness it every time it happened. When he finally got a referral to an gastroenterologist, she suggested a stool softener. She seemed to think that it was a sensory issue and that he held it in as long as he could as an avoidance rather than it actually being painful. Even when he got older, in kindergarten and first grade, we would have to make him go to the bathroom when we could tell he needed to go. He would scream, kick, and do everything he could to try and stop us from taking him into the bathroom. He would be fine as soon as it was over, but would be in a constant mode of anxiety awaiting the next time he would have to use the bathroom.

What I Wish I Had Known About Eating

Koby’s diet has always been concerning. He loves to eat, but he only likes certain things. Textures and smells, sometimes even food appearance, will turn him off. It’s always been an unfair set of rules at our house when it comes to meal time. When Koby was little, he refused to eat anything that wasn’t pizza, a cracker, popcorn, or macaroni and cheese. We would serve our other kids the meal we had prepared, but Koby always got something different. Kylan never questioned us, but once Klara got old enough to realize that Koby didn’t have to eat certain meals, she would go on strike. “Why do I have to eat this if Koby doesn’t have to? It’s not fair.” I have packed Koby’s lunch ever since he was in Pre-K because if I didn’t, he would shut down at the sight of a school lunch and would refuse to move from the cafeteria. When Koby was younger, he would have so much anxiety about going out to eat. We would prepare him the best we could and even pull up the restaurant menu in advance to excite him about something he might eat. No matter how much preparation went into it, he would see the menu and get overwhelmed. He couldn’t decide on what he wanted and would shut down. The noise of a crowded restaurant wouldn’t make the experience any easier. It wasn’t him being stubborn, it was him in a panic.

What I Wish I Had Known About Bathing

Koby loved getting in the tub when he was little. Something happened once he hit the “old enough to shower” stage. He hated to shower. He would cry and have a meltdown when we would tell him he had to get ready for school. We tried everything. I tried morning showers, night showers, body wash with his favorite character on the bottle, a new towel. He hated to shower, but he loved all other types of water. The tub, the pool, the ocean. Then one day it dawned on me. The entire sensory experience is completely different than other types of water. The shower could feel like needles on his back. Shampoo could be burning his eyes. The noise of the water could be too loud. Those things can be very overwhelming for someone with sensory issues. Even though Koby is verbal, he couldn’t tell us why showers were so traumatic for him. We allowed him to take baths until he was comfortable with taking a shower.

What I Wish I Had Known About Going in Public

Family outings are more stressful than you’ll ever know. When Koby was little, going places was too overstimulating for him. I mentioned restaurants, but even going to the grocery store would be stressful. One time we were at the grocery store and I don’t remember why Koby was upset- it could have been the walking, the noise, those horrible fluorescent lights- but I remember standing in the checkout line, him going “wet noodle” and falling to the ground. He was screaming at the top of his lungs, kicking his legs, people were staring, and as Jordan went to pick him up, he balled up his little fists and started hitting Jordan as hard as he could. Jordan had to carry him surfboard style out of the store and wait for me and Kylan in the car. It would physically make me sick thinking about leaving the house with him sometimes. Not only did I want to avoid the meltdown, but I never wanted to put Koby through the trauma of going to public places.

What I Wish I Had Known About Appointments

Appointments will be a big part of your life, but they’re so important. These appointments are vital in helping your child thrive. We’ve had countless appointments with the pediatrician, gastroenterologist, therapy (both occupational and physical) and countless IEP meetings. Our area even offers an autism support group for parents. From the moment you get an autism diagnosis, your priorities will have to change. Your calendar will be packed with all of these appointments, but they each serve their own purpose and they’re all important. Buy a notebook and take notes at each appointment. OT and PT always had helpful ideas for what we could work on at home and the pediatrician always had helpful resources for us that I didn’t want to forget once we left the office. In the same notebook, write down any questions or ideas you can bring up at your next IEP meeting. Keep track of medications and dosages for future reference and the names and phone numbers of any services your child receives.

What I Wish I Had Known About Education

Schools, teachers, and the entire educational system will disappoint you at some point. I want to make it clear how grateful I am for educators and the vital roles they play in the lives of our children. I have spent the last ten years of my career in education and I’ve seen it all. As a parent of an autistic child, you are bound to encounter an educator who doesn’t have a clue on how to meet the needs of your child. Unfortunately, special education positions are always available in our area. Schools can’t seem to keep the special education positions filled. Of course lead teachers are required to have a teaching degree, but the truth is the school systems usually hire anyone for special education aide positions. I’ve witnessed firsthand that harsh reality. Fresh out of high school and zero experience with children, let alone children with special needs? Hired. Individuals who have worked in general education moved around to fill in the gap in the special education classroom, without any special trainings about kids with autism or special needs? Hired. Someone who says during their interview that they are willing to show up to work each day? Hired. Nothing is as frightening as an individual being with your child every day with absolutely no idea how their brain works or how to effectively teach them.

We have had both good experiences and gut-wrenching experiences. Some of the bad experiences include a teachers aide who was previously a bus driver but had to be reassigned to a new position once her husband was hired as the transportation manager. She had no classroom experience and it showed. She would bribe Koby with candy to get him to sit still on the bus. As an aide, she would ride the bus both morning and afternoon, would tend to the kids and help them on and off the bus. On several occasions she would ask my mom (who got Koby off the bus while I was at work) to keep him home the following day if they were being observed or if they were taking a field trip. When Koby got placed in a special education Pre-K classroom in a public school, I was so excited. It was the same school I attended when I was in elementary school, and Kylan was enrolled there when we received the news that Koby was next on the waiting list. I remember it being a difficult transition for Koby. I remember his teacher telling me he had to be placed in a restraint chair on several occasions, but it wasn’t until a few years ago that he was able to communicate to us what was really happening. One day he said, “You remember the principal that hit me with a book?” At first I was speechless because I had no idea what he was talking about. He went on to say, “One day I was bad and he took me to his office, closed the door, and hit my bottom with a big book. He was really mad at me.” My heart dropped. I immediately knew which principal he was talking about. It was the same principal that called me at work to come pick Koby up because he was, “causing harm to himself, his teachers and other students.” I walked into the school and approached the front desk. As I stood there waiting for the sign out sheet, I saw the principal and another staff member standing over a camera laughing. When I looked closer I realized they were watching Koby pace around (also known as stimming) in an empty room with padded walls. Laughing. I have never been so disgusted at a human being in my entire life. Without going into too much detail, this individual has since left the elementary school, but was able to get a position at a newly built high school in our area. Even though he has his doctorate, he has no empathy or understanding of special education.

We have also had the opportunity to work with some amazing people throughout Koby’s years in public school. One of his teachers became one of my very best friends and she has taught us so much about autism. She was our rainbow after the storms we had overcome. The special education teacher who taught Koby his last three years of elementary school is also one of my best friends and it is so comforting to know we can turn to her when we need advice or anytime we need help understanding his IEP. I wish I had known that even though it seems impossible some days, that there are people in the school system who want to see your child succeed. Not just to have them pass the required state tests. Not to pass them on to the next grade just to get rid of them. Not to ask them to stay home and miss a field trip just because they don’t want to be inconvenienced. But to truly see them thrive.

What I Want You To Know About Autism

At the beginning of this post I shared that there are so many heartbreaking moments as a parent to an autistic child, but despite all of the challenges, it’s so incredibly rewarding when you witness your child succeed. When they learn a new task or life skill, when they learn how to work through something that was impossible for them before, or when they find a friend that accepts them for who they are. When they try a new food or go in public without having a meltdown. Those things will be some of the happiest moments of your life and they deserve to be celebrated.

This post is simply our experience with autism through the years. Remember that each child is different and that your experience may be completely different than ours. As one of my best friends would say, “If you’ve met one kid with autism, you’ve only met one kid with autism.”

I’m looking forward to sharing my next post. I’ll be sharing where we are now with all of the things I’ve mentioned today, as well as the things he still struggles with each day. Until then, you can read about his story here.