Featured Author: Alexandria Hogopjan
My name is Alex, I’m a 30 year old mama raising two boys in California. My oldest is Michael, he is 5 years old and is on the autism spectrum. My youngest is Roman, he is 4 years old and neurotypical, meaning he is not on the spectrum. The term spectrum is used because years ago autism was diagnosed a lot different than it is today. There were specific names for different types of autism, but now it is simply referred to being on the autism spectrum, and on that spectrum you can be mild to severe. Michael is more on the mild side, they call this high functioning, meaning he is verbal and can function mostly independently or can be taught to be independent with therapies.
My husband and I were together for a year when we thought it would be a great idea to elope and start making babies, then we also thought it was a fun idea to then get knocked up again before our first turned one. I didn’t LOVE being pregnant, but it was the most empowered I have ever felt in my life. We women are such badasses! I was really excited to be a mom, I love kids and come from a big family.
During my pregnancy I would daydream a lot about what my little boy would be like, how he would start T-ball at the age of four, how he would start school at the age of five, and about our future playdates at the park. I made sure to be healthy, I worked out my whole pregnancy, refused to take any medication, and even stopped drinking coffee. I never once thought about autism or that I would be an autism mom.
The first time I noticed that Michael was more sensitive than the average baby, was the very first time we took him out on a public venture. We headed to the mall for some shopping, but we didn’t even last 45 minutes because he screamed the whole time. It was the first time I noticed how loud the mall is. How loud all the voices sounded together, how bright the lights are, and how loud the music was playing in every store we entered. Now I know this is not out of the ordinary, most babies do not like loud places, but with Michael I could really feel the distress in his little body. This is something he still struggles with to this day.
None of us mom’s have it easy, the job is hard for all of us, and part of that job is being your child advocate and voice. So at three years old I contacted Michael’s doctor for a referral to the behavioral specialists to be evaluated. There were a lot of things in his three years of life that led to that moment. A lot of tears, a lot of screaming, a lot of sleepless nights, and always feeling like a failure as a mom. As a baby he was happy, he smiled and giggled, he crawled and walked at the normal time frame, but did not start really speaking until 3 years old. His speech is still delayed, but he continues to make huge strides and improvements.
As a young toddler the communication barrier caused a lot of stress and frustration for him and for us. He mostly communicated with screaming and grunting, which was really hard and led to more screaming and meltdowns. Meltdowns look similar to tantrums on the outside, there’s the crying, the screaming, thrashing of the body. But a meltdown is a lot more intense, and can last up to two hours. When Michael has a meltdown it’s often triggered from overstimulation/tiredness, something not feeling well in his body, or him not understanding something. When he is in meltdown mode, he’s screaming, shaking, his heart is beating rapid and you can practically hear is mind just buzzing. He also will throw is head to the ground or wall, slam his body down, and try to head butt and hit.
When he was a toddler I had no idea what these were, I had no idea how to help him, and often times just sat and cried with him. It was the worst feeling as a mom, not knowing how to help my baby, and not knowing what was causing so much distress and upset in his little body. Now we know that compression hugs and weighted blankets help calm his body down. Most of the time he asks me what happened when he is back to calm and then he gives me hugs and tells me he’s sorry for screaming. I’m blessed that i am able to hear those words, along with I love you, because so many autism parents have nonverbal littles and have never gotten to hear those wonderful words.
There was one particular night that Michael was having a meltdown, after many meltdowns that awful day, he was screaming and slamming his body into the door when my husband lost his cool and said out loud what is wrong with him?! My response was, you know somethings wrong right? You know this is not normal? It’s a scary feeling, knowing something isn’t right and you have two choices. You have two choices, you can pretend the issues don’t exist or you can face your fears and do everything possible to help your child. Now these were not the best words to use and express our frustrations that night, but at the time we didn’t know exactly what was going on, we were two very exhausted and defeated parents. It was that night that led me to contact Michael’s doctor.
Michael’s doctor was a little hesitant at first because at previous appointments I had embellished his abilities and word count, because I assumed he would get there just needed time and also because I did feel like it was my fault. But after three years it was clear that all my extra time and efforts working with him on speech, eye contact, and sensory, was just not enough and I needed outside help from experts. After explaining, the speech delay, aversions to foods that were not a dry crunchy textures, sensitivity to sounds and lights, and the meltdowns, we were sent to several specialists before his final evaluation at the autism center.
The morning of his final evaluation is something I will always remember. I was beyond nervous. I thought maybe they will think I’m crazy and nothing is out of the ordinary, I’m just not doing my job as a mother, and that I would leave there with no answers. Then I feared getting answers and what that would feel like, what that would mean for his future, and what would be next. It was May 2nd when I was told my son was on the autism spectrum. It’s a feeling that is so hard to describe because you feel broken and then whole at the same time, I wasn’t crazy I had the missing piece to the puzzle, I could now understand my son and soon he would be able to understand us too. He didn’t hate us, we weren’t awful parents, he just needed extra help existing in our world.
Often times when he was an infant or toddler, loved ones thought I just needed to push him out of his comfort zone, or that I needed to ‘cut the mommy cord loose.’ But just as I suspected they were wrong, my boy was sensitive and having a hard time with the world around him. Having him diagnosed was the key to being able to get him the help he needed with therapies like occupational, speech, and ABA.
I don’t think neither my husband or I were surprised to hear his diagnosis, I think it stung to have it be official. But it also gave us answers and clarity. We researched what was next, and I read everything I could about different therapies, diets, supplements, routines, basically anything I could find to help our boy thrive and be the happiest he could possibly be. No one really tells you that you also go through a sort of grieving period after having your child diagnosis. You have their whole childhood dreamt up in your head and then BAM all of a sudden you don’t know what that looks like anymore because those dreams never included autism. But us autism parents are tough, you shake it off, you move forward, and you put your child first before your own fears. Not to say they don’t creep up on you on the bad days, but you can either choose to let it swallow you up or you shove them to the side and you handle the day, you leave the worries and take it day by day. Because trying to think to far into the future can be overwhelming at times.
A couple months after the diagnosis, Michael began therapy. He was doing occupational and speech once a week, and also doing ABA therapy 20 hours a week. One thing I have learned a lot about through this journey is how our brains are connected to our sensory outputs in the most interesting ways. To get Michael to open up to new food textures and textures like grass on his feet, they had him playing with different textures with his hands. To help his fine motor skills, they had him picking toys up with tweezer like things and threading shoe lace strings through holes. To work with his sensory processing issues (being overwhelmed by sounds, lights, touch) they would do activities that activated all of it once in a play manor. He has made such amazing progress over the last two years, and I have learned some amazing tools that help us.
It’s not to say we still don’t have bad days, some days he’s just in a funk and we do our best to keep him as comfortable as possible and just try to survive until bed time. That’s when mama needs some wine and reality tv or nice a drive with the windows down and music blasting. Tomorrow is always a new day, that’s how i survive the bad ones. I know its just a day and we will hit reset and wake up to hopefully a better one.
I have learned that everything seems much worse when you are exhausted. What’s worse than the long rough days are the meltdowns out in public. Oh man, the stares, the eye rolls, and the annoyed sighs. I have yelled at people in target before, letting them know that my son is not a brat that he’s on the spectrum and simply having a rough moment and to stop staring like an asshole. 9 time out of 10 people assume my screaming child is just being a brat and I am a mom not in control of my little angel. Because unlike other kids who are having tantrums, we cannot reprimand our child when they are not being “bad.” So please if you are out in public and see a screaming child, either offer to help and a smile or keep it pushing, an audience doesn’t help our child feel calmer.
Our family and friends are supportive, it was a little trial and error at first to get here but we are in a great place now. I think a lot of people don’t always know what to do or say and sometimes even coming from the most loving place you can say things that hurt an autism parent. I have had loved ones send me articles on how to cure my son’s autism, I can’t stand the “cure” stuff as if he is diseased. There’s absolutely nothing wrong with him, and there’s nothing about him I would change. I’ve also received what is supposed to be comforting words like, “I’m sorry, all of us are a little autistic now a days,” or “but he looks so normal!” These are things that are usually said from a loving place but literally make me cringe. There isn’t a look to autism, there are behavioral characteristics that you can sometimes notice, but not a certain look. The autism spectrum is full of beautiful, smart, loving, kind, souls and to have met one is to know one, because the spectrum can be similar but no two people on it are the same. But if you’ve been lucky enough to know a person on the spectrum or have someone in your family, then give them major props because they are the bravest badasses and high five their parents because they are the real MVP’s.
Speaking of autism parents, we not only have the job of being parents to some special kiddos but we also have to make our marriage survive the stress and strain. Just like parenting, marriage isn’t easy. We’ve been married for almost 7 years and none of it has been perfect. But we try, we get out on dates when we can, we try to stay interested in each others hobbies and just try to keep that friendship there, because on the days where the romance aint happening the friendship is. My husband is the one person who is in the trenches of parenting with me, he’s my rock on the days when i’m ready to give up. Then there are the days when we are all stressed and there’s so much screaming, we end up taking out our frustrations on each other, but the great thing about our relationship is that we know, neither one of us is giving up on one another. We might give up the battle of the chicken nuggets, or give up on the day, but never our bond. Getting out on date nights doesn’t happen as often as we would like, we can’t leave Michael with just anyone because it has to be a family member that knows his routines, and how to handle meltdowns, exactly how many tator tots and the color they need to be toasted too. But thankfully the grandma’s are pretty much pros at this point.
The other member of our family that is directly affected by Michael’s autism is his younger brother Roman. He’s the little brother by a year but in a lot of ways he has to play the part of the big brother. He has learned at such a young age already how to be patient, compassionate, and how to compromise. We do our best to give both boys all the love and attention that they need, but to explain how autism affects his big brother and why it causes him to scream so much, to a four year old is not an easy task.
Michael is five right now and will be six in june. He’s currently being homeschooled for his kindergarten year because he’s very intelligent, but socially and sensory wise is not ready to handle a mainstream classroom setting yet. He’s also not potty trained completely yet. I’m hoping maybe for 2nd grade he will be ready for a regular classroom, but if he’s not that will be fine too. We do life at his pace, he always conquers his goals, it’s just on his own timeline and we are supportive of that. That’s not to say that we don’t push him a little here and there, but with him it has be gentle or else regression can happen. Meaning we can get him comfortable with something new he couldn’t previously handle and then an old issue pops up or a new one. Like when we started getting him partially potty trained he then became much more sensitive to sounds again and now cannot be in the same room when someone is chewing, or is usually wearing noise cancellation headphones out in public places now.
Moving forward my main hope for him is that he’s happy and comfortable. Our main concern is his happiness and that he’s thriving. We are raising him to know that he can do anything he wants, he knows his brain works differently but we don’t let that be a set back. If he wants to be president, a dirt biker, or flip burgers, he will have our full support as long as he’s happy.
I by no means speak for every other autism mom out there, I’m just one out of millions, and we all have different feelings and thoughts about our journey’s. This is just my thoughts and feelings about our journey and our story, there are some incredible stories out there with even more incredible women behind them. My hopes is that maybe a very exhausted mama out there is reading this and feeling exactly the same, wondering if she should have her child evaluated or being told she’s being paranoid. If she is reading this, I want her to know she is not alone, that you should follow your instincts and your gut. No one knows your child better than you, and though you might blame yourself, it is not your fault. I also hope that after reading this that some of you have learned a little bit and that it inspires to you read more articles you see about autism and that you also spread the awareness. If we could all just get rid of the old school mentality of ignoring people with differences out of politeness and instead, offered warm smiles and conversation, or even just asking questions to understand better. I’m hoping for much more acceptance going forward into the future. I have no idea what caused my son’s autism. Whether it was genetics, environment, vaccines, or something while he was in utero, I don’t know. What I do know is that my boys are a blessing, and there’s absolutely nothing about them that I would change. They are perfect just as they are.
Photo Credit: Alexandria Hogopjan