“I’m not good with dates or years. It’s an ongoing joke in my personal life that I don’t know my age or how many years I’ve been married. Years have never mattered to me, but memories, feelings, moments in time, that’s what matters to me because it’s what makes you who you are.
Our journey with autism started long before our son, Max, was born. I was diagnosed with pre-ovarian failure at the age of 18 which meant that I couldn’t have children. And while this is a story for another day, 12 years later thanks to extremely long needles, my egg donating sister and lots of meds, we got to have 2 beautiful children. After our daughter, Cali, we thought, we got this… boy were we humbled.
From the moment Max was born, there were signs his path was going to be different, but our infertility journey prepared us for the road less traveled. As a baby, he did this head whip thing. I mean like crazy head whipping. He’d lay in bed and just whip his head side to side until he fell asleep. We thought it was cute. Looking back, it was the stimulus he needed; it was autism. He was also delayed; walking, talking, crawling, all of it, he was behind. We had him in PT, OT, speech, you name it. Sleep? What was that? We had to wear him all day long, so he would nap and not fuss. And, he was no small bundle of joy. Max was born 3 weeks early, weighing 9.5 pounds. (When my doc pulled him, she looked up at me and said ‘we’ll never talk about how big this kid would have been had he gone full term.)
That was Max. My memories of maternity leave with Max were pure exhaustion. There was no sleep; I was physically wearing an extremely heavy baby while trying to heal myself. Oftentimes at night, I would have to wrap him in the baby carrier and sit rocking him for hours so he would sleep. It was mainly a blur of exhaustion, pain, loneliness and sadness. I’m grateful that we have pictures to look back on to remember there was good too because my heart just remembers the hard.
My husband and I are both teachers, and we knew something was off. We asked doctor after doctor; we took test after test, but his results were always ‘normal.’ These tests were the first time we learned that ‘autism’ was so much more than a test. There isn’t ONE definition of autism. Knowing ONE kid with autism means nothing; it means you know one kid with autism. Each child’s story is so different. From day one Max loved people, he made the BEST eye contact, he didn’t mind loud noises, he loved big and crowded events, he loved to be cuddled; everything you’re told Autistic kids DO NOT like, he did.
As Max got older, things got harder. By the time he had reached 3 it was the peak of our hardest and loneliest years. He was violent and aggressive; his tantrums were unexplainable. He had stopped sleeping again; we were up for 5-6 hours a night, and our house was falling apart. My husband and I couldn’t stop fighting; our daughter was getting hurt by our son; we were not giving her any attention; we were getting hurt by our son, and we had no help. We had no answers. We were embarrassed to share, and if we did share, people didn’t have much to say besides ‘I’m sorry.’ He had been asked to leave multiple daycares which if you’ve ever experienced is the LOWEST blow you will ever hear. The words ‘So we need to talk. We’re not sure Max is a fit here,’ will forever be ingrained in my memories. When I look back on that year, I’m shocked we didn’t end up divorced. These were by far our ugliest years of marriage and hardest of our life and no one really knew. Close friends and family could tell we were ‘off,’ but no one knew because we barely could understand what was happening. We were in survival mode, a term we’d learn was common with autism.
Finally, Max was old enough for our school district’s early childhood program. I knew his teacher also had a child with special needs, and I asked her to meet. I walked into her room after a long day of teaching myself, running on 3 hours of sleep, scratch marks on my face from him. I turned to her and started sobbing. I remember saying ‘What do we do? I know you can’t legally tell me things, but mom to mom, I cannot do this anymore. Please, please help me.’ (I’m crying writing this as I remember this moment so vividly.) She quietly touched my arm, looked me in the eyes and said ‘Megan, get him tested for autism.’ The tears flowed; it was NOT what I wanted to hear, but it was exactly what I needed to hear.
Now, you think ‘autism,’ with all of its societies and awareness groups, there should be answers. We quickly found there weren’t. We did, however, find that behind all the puzzle pieces and blue lights was an amazing network of parents. Parents like us who knew what we were talking about, who understood our pain and loneliness. All of sudden autism moms were popping out on social media, adding me to private groups where we were no longer alone. When we entered the inner circle of other families of autism, we quickly realized our battle would be uphill, but we would survive.
We got on waiting lists for therapies, psych evals you name it but the most common wait time, 1.5 years. How was it (whatever year it was) and this was ALL we had for kids with autism, a year and a half wait list. Again, autism quickly taught me. I knew we were his only voice. I learned to find my voice and make it loud, so I was heard. I set reminders in my calendar, and I’d call WEEKLY. I wanted them to know my name, my voice, my son’s story. I wanted them to remember me if there was an opening. . .low and behold, it worked. We were in LA, visiting my husband’s family, and it was not going well. Max had projectile vomited on the plane multiple times (resulting in him flying naked), he had scratched and bruised all of us, screamed 90% of the plane ride (to the point where the stewardess had tears in her eyes and asked me how she could help), and he was unnerved that we weren’t home, and we were fried. I’ll never forget where I was standing the moment my phone rang. I knew the number. I quickly answered and heard, ‘Hi Megan, this the Wisconsin Early Autism Project. Do you have a minute?’ Time stopped. Had we reached the top of the waiting list? I remember her saying ‘We have an opening for Max, would you like to proceed with our company.’ My only response was ‘are you joking?’ She assured me this was real. I physically fell to the ground. Help was here, and for the first time in a long time, I breathed.
These next 3 years were learning for us. Learning how to live with autism, learning what autism meant in our home, learning what ABA therapy was, learning who Max was despite this diagnosis and most of all learning how to make sure Cali still felt loved and the center of our world. Autism always takes the center stage in a house; it’s unavoidable. So while we learned to parent autism, we also had to learn to make sure our daughter felt safe and secure too.
To be honest, these years really blurred together. Our life was not like anyone else in our friend circle. While they were going to soccer games and dance recitals, we had therapists in our home 40 hours a week, sitting at our dinner table with us teaching Max how to eat with a fork. While they were posting cute family photos of adventures and trips with their kids, we were buying shirts that were made of metal to protect our arms from the bruising and scratching from forcing Max to learn daily basic living skills and making sure Cali was safe. We were never alone, yet all I remember from these years is immense loneliness. Because once you get that label, things change. EVERYONE knows a kid, nephew, neighbor, etc with autism. And everyone assumes that what they’ve seen in their 15 minute exposure is your life. So they assume and don’t ask. Now I KNOW no one meant to do it, or meant to hurt us, but it happens. If you CHOOSE to share the hardships of your journey, people start assuming again and excluding you. Again, this was never intentional, but we were different now. There were multiple times where we were left out of events, and when I’d ask why, I’d hear, ‘Well your life is so tough; I figured it’d be too hard.’ Our life had become too hard for others.
It was also the start of a lot of sympathy, which if you’ve gone through something traumatic, you know is hard. People don’t know how to empathize with special needs because our hardest days are unimaginable. We started hearing ‘god only gives you what you can handle.’ ‘ I don’t know how you do it.’ ‘You were the right mom for Max’. ‘Your strength is amazing.’ Each time we heard these comments we wanted to scream. We didn’t want this or ask for this. We had no choice. So, we smiled and retreated further. We knew that to survive this, we had to put ourselves and our family first; we had to get selfish, so we did and slowly, we found our groove as a family, as autism parents and got to where we are today.
Not all my memories are painful. I want to make that very clear. Max has taught me a love that I can never describe. As parents we love our kids unconditionally but the love Max has taught me goes beyond that. He has taught me to see the world from a whole new point of view. He has made us all better. I remember a major turning point one summer. We had our whole therapy team over to do a quarterly evaluation. They wanted to see Max in his natural setting. Due to the fact that going out and doing things was hard, we turned our house and yard into a place for Max to experience things and keep our daughter sane while being stuck at home with her brother’s therapy. We purchased a giant blow up pool, a trampoline, a special swing, and we were outside with the team talking. The head honcho turned to us and said, ‘You did all this for him?’ My eyes welled up, and I said, ‘Yes? Why?’ Her response broke my heart; she said ‘We don’t see this often. This is amazing. He’s going to have a great life if this is what you do for him.’ For the first time in many years, I felt like we could and would do this because there’s no textbook for autism, no handbook, heck most doctors don’t know, but as parents, we knew him.
Today, Max has come so far. He’s about to turn 7 in a week, and I’m in awe of where he is today. Our motto with Max has always been we’re going to try until it doesn’t work, and when that happens, we go home. Because of that, we have witnessed a whole new world through Max. Max now can fly and travel almost like a champ, he will get into water, we have learned HOW to help him try new things. The first time he saw our pool, he didn’t know what to think. He watched his sister jump in, so he slowly dipped a toe in, whipped around and looked at us like ‘look at me.’ By the end of the day was mimicking his sister’s every move, laughing, splashing, talking non stop gibberish.
When we got our trampoline, I remember putting him on it and watching his eyes light up as he realized he could get that stimulus response his body craved. The smile and the laughter will forever be imprinted on my heart. I remember his first day of Kindergarten at the public school and how scared we were, and when we picked him up, all of the kids yelled (cause kids yell) BYYYYYEEE MAX!!!!
I remember him coming home months later and saying ‘Omari.’ We wondered who this was and finally realized it was a friend. It was a little boy in his class who had taken Max under his wing, who loved him as much as we did. I remember meeting Omari for the first time, and he just started talking to Max like he was a normal kid. Max shook his head, flapped his arms and made his noises back to which Omari just responded.Words can’t describe that feeling. We take for granted that our kids will be part of the classroom, even if they only have 1-2 friends, but we knew Max’s story would be different. To watch this ONE kid take him in, set the tone that Max was a cool dude, was unreal. My wish to have classes filled with Omari’s who love the kid who sits outside the circle flapping.
This year, we’ve seen the most change. In a year that was so hard for the world, our family seemed to thrive. This was not the hardest thing we’d been through. We were forced with the decision of sending Max back to 1st grade or withdrawing him and solely doing ABA. This meant a LOT of change, but our hearts told us it was what he needed. This year, he has blossomed. We have watched Max go on his first ‘walk’ through the woods, watch his first movie with the family, open his first present, and speak 5-6 word sentences to us. Things all other parents take for granted, but let me tell you watching your child who has never opened a gift before, rip the paper, look up at you with these eyes that say, ‘Did I do this right?’, then rip again, will bring you to tears. This year Max and I have started ‘Mommy cuddle time.’ As soon as Dad leaves for work he looks at me with the largest dimple and smiling eyes you’ve ever seen and in this high pitched goofy voice he has, says ‘Mommy Cuddle Time?’ He crawls up into my lap, curls up and lays there repeating what I say, telling me things we’ll see on our drive to school and showing love. Nothing has affirmed our decision more. He is the happiest we’ve seen in years.
As I look back at our short journey so far, I know the greatest lesson it’s taught me is to pivot. It’s our new family motto. Life with autism moves fast and is hard. Tantrums happen, things get broken, people get hurt, and then he looks at you with these eyes that are filled with fear, and ‘I’m sorry’, but he can’t say it, and you learn to quickly pivot. You try an outing, and it doesn’t work, you pivot. You try a med, and it doesn’t work, you pivot. You realize your other child has been left out because your only focus is autism, you quickly pivot. You never stop moving or being on the go with autism. You never, ever stop. But the result, we are more resilient as humans. We know how to love without words, we know how to get up when we fall and we know a love I can never describe.
Autism has been the hardest, greatest thing that has ever happened to us. It has helped me find myself, it has forced me to change, it has helped me develop empathy and see others pain not ignore it. It has made my husband the most empathetic special ed teacher who can SEE on a mom’s face in an IEP that she’s not handling well, so he calls her later to say he understands. It’s made my daughter the most empathetic, caring 9 year old you will ever meet. She was forced to grow years beyond her age early and fast. But now, she can spot it in a room. She can see the kid who doesn’t quite fit in, and she can explain it to others, she can see things from everyone’s point of view. She’s wise beyond her years.
I often get asked, ‘How can we help?’ to which I’d like to share this: If you meet a parent with autism in their home, don’t assume. Ask them. Get to know their kid. And make their neurotypical kid feel like you see them too. Ask them how they are. Their whole life is their sibling. Listen to the parent’s struggle. Don’t try to compare or understand, just listen. They don’t need pity, or I’m sorry’s, they need a friend. You may not be able to relate to their parenting problems, but you can relate to pain. So, as Brene Brown says, crawl down into their hole and just sit with them; let them know they’re not alone.”
This story was submitted to Love What Matters by Megan Kitze-Ward of Milwaukee, WI. You can follow their journey on Instagram and their blog. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more powerful perspectives from special needs moms:
‘You’re hired!’ His face lit up. My boy was smiling. He cannot read social cues and gets easily overwhelmed. He has no restaurant experience. But they gave him a chance.’: Mom thanks restaurant for hiring son with autism, ‘There are still good people’
Give other parents strength and courage who are continuing to learn about their children with autism. SHARE this story on Facebook or Twitter.