Having a child with Autism is tough at times. At first, you walk around feeling sorry for yourself and your child. You wonder what their future holds and what they will be like a year from now. Once this initial grief is over and you accept their fate no matter what it holds, you being to get a lot of questions and comments from those around you. Here is what my husband and I want those around us to know based on our experiences as parents of a newly diagnosed Autistic toddler.
Our Son Looks “Normal”
Leo looks like your typical year-and-a-half old toddler, full of smiles and giggles. He is the sweetest and loving little boy that melts our hearts away. He is special, and not just because he is Autistic. Leo has a very different and bright personality that often gets him a lot of attention. Our son does not have a medical issue that changes his appearance. So when we are told that Leo “looks normal” we often agree, and ask ourselves “What is he supposed to look like?” Autism does not have a “look”. Autism is a developmental disorder, a neurological condition that cannot be cured and is often life long. Autism is not one single disorder, but rather a spectrum of disorders and behaviors. This is why not one Autistic person is the same. A lot of people have misconceptions about people with Autism, specifically when talking about social skills. A lot of autistic kids and adults have trouble communicating and lack certain or all social skills. Some people with autism are quiet and secluded, while others could talk for hours and be apart of every social gathering possible. Leo is very social, and is often more comfortable around strangers than other kids his age. He is definitely a mamma’s boy, but he doesn’t hesitate to hold his arms out to a complete stranger at a restaurant for hugs and love. This is what makes Leo so loving and special. He was diagnosed with severe receptive and expressive language disorder at 17 months. He does not communicate his needs well, he often becomes frustrated and has frequent meltdowns when it comes to communication. He lacks in many areas of speech and language, however he thrives in non-verbal social interactions and rarely passes down a good squeeze. This strength in Leo is often mistaken, and many people think that because of his strengths, he is not Autistic, or “he doesn’t look autistic”. As Leo’s mom, I can confidently say my son was properly diagnosed, and just because he “looks normal” does not mean he doesn’t have underlying struggles that you cannot see, making his daily life very difficult and painful to live.
Our Son is Not Unruly
From an outsider perspective, Leo may seem like a very spoiled and unruly child. Leo has tantrums like any normal child does, but he also has sensory meltdowns that cause him to look bad. Leo has impaired sensory perception or also known as sensory processing disorder. Sensory perception is exactly what is sounds like, it is the way you perceive senses. Leo has impairments in his perception to pain, emotions, smells, lights, sounds, textures, and pressure. Before we knew our son was Autistic, we often thought he was just a tough kid, who would jump around, climb, hit, punch and self-harm because he was fearless. Little did we know that he lacked in processing pain at certain times. Leo places his hands over his ears due to the way he processes certain noises, feelings and emotions. Loud noises could be fine one day, and the next could lead to sensory meltdowns and over-stimulation. Leo’s sensory issues are not black and white. They appear out of nowhere sometimes, and a lot of times they cause a meltdown that lasts all day if we cannot figure out what exactly is causing the sensory overload. Leo’s first bad sensory meltdown was heartbreaking and terrifying. It was a normal day and everything was going as it usually did, until it didn’t. Leo’s developmental specialist was doing a home visit and we were playing with Leo like we did every other time and out of nowhere he began arching his back and screaming as if he was in pain. At first, we thought he didn’t like the activity so we tried to play a different game, he screamed harder and louder, began to bang his head on the wood flood with no remorse, pull his hair and smack himself. We went through all his senses until we finally found the culprit. We took Leo into his bedroom and turned off all the lights and noise and began to apply pressure all over his body. Leo got up and closed his bedroom door, blocking all light from entering the room. That is when we knew it was the lighting that set him off. A good way to tell the difference between a meltdown and a tantrum; during a tantrum, if you give the child what they want they will stop the tantrum. During a meltdown, giving into the child will not end the behavior. Meltdowns are more often than not due to sensory overload or over-stimulation and can last anywhere from minutes to hours, or even an entire day.
We Know His Behaviors are “Normal”
When people ask what makes him autistic, I often talk about his stims. It is much easier to explain his repetitive behaviors and self-stimulation than it is to talk about his internal struggles. Autism can be difficult to understand, and if you have met one person with Autism, you have only met one person with Autism. Every Autistic person is different and has different struggles and weaknesses. It is very difficult to diagnose Autism at Leo’s age because a lot of the warning signs consist of “normal” behaviors. When talking about Leo’s hand flapping or tip-toeing, I often get responses like “oh my child did that too at that age, he is just fine!” That is really great and all, and it is always cool to hear about other kid’s behaviors at Leo’s age, but a lot of the Autistic behaviors Leo has that seems “normal” is not normal at all. A lot of toddlers LOVE CARS! Cars, trucks, mowers, trains, you name it. These are staples for kids at my son’s age. Leo loves these things as well, but he has a different type of passion that is not considered “appropriate” for his age. Leo has an obsession with any type of automobile, tractor, train, etc. that causes him to be impulsive and repetitive. It is mainly due to the wheels on these objects. Spinning is one of Leo’s stims, a way he self-stimulates to either regulate his emotions and feelings or to enhance them. These are major safety risks for Leo and can cause him to elope. While playing outside he will run after a car, truck, lawn mower, etc. and not recognize danger or pain to get to them. He is not easily redirected when a car drives by or when the neighbor is mowing the lawn. If Leo is not watched AT ALL TIMES, he could be gone in an instant and he will run and not look back until he fulfills his desire. Leo could be having the most fun playing in the yard and be neck deep in an activity and a car will pass, causing him to immediately drop everything he was doing to run after that car. Leo also holds a car in at least one hand. He often gets “stuck” on these toys and it causes him to be blocked off from other activities and social interactions. This is just one of the MANY examples of how Leo’s “normal” behaviors are indeed not “normal”.
Speech is a Touchy Topic
If there is one topic I dislike talking about the most, it is speech. This is because of the parents who raised late talkers. It is quite normal for kids to speak at their own pace. Some kids do not say any words until 3 years old and then never stop talking. That is so awesome, and I truly am happy for you that your child was just a late bloomer. Leo is not just a late bloomer, and his speech delay is a whole lot more than just not vocally saying words. If I had the option, I would completely ignore all talk about speech and communication. However, I do think it is very important to talk about, therefore if you want to know my thoughts on speech therapy you can read that blog post here. That is all I want to say here about speech and language. Just try t avoid that topic with my husband and I if possible, we would really appreciate it.
We are Working With Highly Trained Professionals
The amount of support we receive is astronomical. Not just in therapies for our son, but also through family, friends and even strangers who offer kind words and loads of encouragement and understanding. With that also comes a lot of opinions and advice. We love to hear what has worked for other kids, and sometimes it may help us tremendously. However, parenting advice, discipline and coping strategies are off the table. Anything you recommend I can guarantee we have already tried it, thought of trying it or agreed that we would definitely not do it. Discipline is a huge problem with our son. With sensory overload and trouble processing and understanding emotions comes a huge road block for discipline. The same goes for stimming redirection, solving eloping problems, and silencing vocal stims. We understand that the social norms do not accept loud moaning, grunting, yelling and screaming in public. We are screaming inside ourselves, but it would help us more if instead of offering ways to make our child stop these vocal stims, you would just be more accepting to his coping techniques. When I asked my husband what would be one thing he would want others to know, he said “this is him, he is autistic. You cannot cure it and he isn’t changing so accept it.”
We Want to Come to your Events
Being invited to events makes us feel included. Rushing us out of the party or situation makes us feel ashamed. For that reason, we pick and choose what we do and where we go with our son. For the longest time I refused to go anywhere with my son by myself. I could not grocery shop alone, go to an event or a friends house alone with Leo. I always had to have my husband or my mom with me to be there just in case. I eventually learned coping techniques for situations like the grocery store check outs. If the cart stops moving, Leo usually freaks. So I only go to stores with self check outs now to avoid the unwanted stares of disapproval of my hyperactive son. Self check out is also handy because I can scan items without having to pry them from my son’s hands. Ill never forget the checkout clerk that looked at me with disgust and grabbed a veggie pouch from me that my son had already slurped down while shopping in the store as my son cried and covered his ears kicking to get the pouch back so he could chew the plastic piece to calm him down from the cart being at a stand-still. Everyday is a learning experience for me, and I am truly sorry if you feel angered or disgusted toward my son or I when we are in your presence during one of those learning experiences. Please don’t be upset if we don’t show up to your BBQ or grad party. We promise we don’t hate you, it just may be one of those days.
We Don’t Want Sympathy
Our son may be Autistic, but that doesn’t change our love for him. Leo may have weaknesses that impair his daily life, but his strengths are so special and strong that we wouldn’t ever want him to change who he is. Being a stay-at-home mom to an autistic child has many challenges, and some days I wish I could just live a “normal” life. But I don’t want sympathy or “special treatment”. I simply want acceptance. Anytime I talk about our struggles or my son being autistic, it is to spread awareness and hopefully gain acceptance for him and other parents who feel the same as me. There is nothing to sympathize over, except for how my son feels inside. I feel sorry for my son. My life may be challenging as his mom, but I can guarantee that he has it a lot tougher than I do, and my job is to make his life a little bit easier to live and enjoy. There is nothing wrong or sad about being different. We are all different in some way, but the most important goal of ours is to make our son’s differences more acceptable.