Before I start, I need to state how hard this was to write. I cried all through out. I share this because I know I am not alone and I would love to meet others struggling with the same. If this offends you… I can’t help what I feel and I won’t apologize for it. I refuse to suppress anymore.
My husband and I decided to have our child. It was a mutual decision. One that made sense to me at the time. I wanted the experience of motherhood earlier in life. I was with someone who I knew would be an amazing parent. It felt perfect.
When expecting a baby, we tend to wonder what the child will be like. We imagine pigtailed princesses, tomboys, tiny all star athletes and the semblance of yourself somewhere in this little being.
None of us realize that having a child does not guarantee that he or she will be healthy or even disabled. It isn’t in our wildest dreams. Actually, it’s something that’s tucked away somewhere so far beyond your conscience, you might even feel it’s impossible. At least that’s what the experience was like for me.
I gave birth to a son. Ethan. His name brings a smile to my face. I fell in love with everything about him, from head to toe. I loved everything about being his mother. It brought me joy and pride to watch him grow. It created a curiosity in me that resembled a hunger. Who was he? Would he love video games and baseball like his dad? Would he hate small talk and crave discussions of our existence and conspiracy theories like his mom?
Ethan was 6 months old when his pediatrician told me he wasn’t hitting his milestones. She recommended that we contact early intervention to have him evaluated for any sort of delays or disabilities. I declined. I was told by every mother I knew, that all children grew at their own pace. That’s what was happening here. That was all.
Ethan learned to sit and crawl later than was expected. He took his first steps when he was a year and a half. Still, I believed this was normal. What kept me up at night was that he wasn’t talking. No phrases. Nada. I would attempt to play with him at home or I’d take him to the park. He no longer made eye contact with me. He no longer smiled or interacted with me. He didn’t respond to his name, to my voice. I was a ghost. It hurt. God did it hurt.
I told myself I’d contact early intervention if he turned two years old and was not speaking. I found myself making that phone call shortly after his second birthday after seeing no signs of improvement. The process went rather smoothly and Ethan was to be evaluated by a psychologist.
The psychologist was scheduled to visit with us at our home. She turned to me in under five minutes of her visit and told me my son was severely autistic. I felt like I’d received a hard punch to the stomach. Autism. My son? I didn’t know anything about it. It didn’t run in my family. It didn’t run in my husband’s family.
All these thoughts and fears ran through my mind. That’s it, his life is over. He’ll never lead a normal life. He won’t grow to become a man who will get married, go to college, have the ability to support himself.
In that moment, I wanted to die. I’d recently found out I had a life threatening Illness that I didn’t know I’d survive from. Hearing this broke what was left of me. I was doomed. My son, who hadn’t even begun to live his life, was doomed. I cried and cried until I thought my body had run dry. But…I couldn’t allow my emotions to paralyze me. I folded away that pain and put it away. What was the next step? What could we do right NOW to help him?
Ethan went on to receive at home, multiple hour long therapy sessions with ABA therapists, speech therapists, OT specialists, and PT specialists 5 times a week. Any service he qualified for, we made sure he got.
He began attending a center based therapy daycare, where he received all of services. He rode his first school bus at the age of 2. Once Ethan aged out of the first location, we worked closely with a social worker and with her help, got him into the best preschool that provided the services that Ethan required.
Through out this process, I didn’t allow myself to fear. I didn’t allow myself to cry. I didn’t allow myself to be human. I struggle with anxiety, which usually has a lot to do with panicking over the future. I couldn’t even feel that. I couldn’t help the diagnosis, but I could help how much I did to help my son. So I immersed myself in that.
I was sick and Ethan needed me, so I became a stay at home mother. It wasn’t where I ever saw myself in life, but my body needed to heal, and even if it didn’t, my son needed me. I would have never forgiven myself if I hadn’t done everything humanly possible to help my son progress. In my eyes, who my son would become in the future would be a result of the parenting he received. If that meant I needed to be home for him to receive his services and for me to learn teaching/therapeutic tactics to help him as well, that’s where the fuck I was going to be.
So, this is my life. I’m a stay at home mom to an autistic child. He is six years old now. He loves cars, anything Minion related, counts, sings, requests things (food especially). All on his own terms, of course. His room becomes a jungle gym during sleeping hours. He doesn’t eat anything unless it’s crunchy. He is unable to dress himself. He needs help with most basic things, including using the bathroom. I currently change his diapers.
It took me a long time to muster up the courage to talk about this. Why? I didn’t want people looking at my son with pity. I didn’t want people finding out about his diagnosis and automatically viewing him as the poster child for autism, without even getting to know him. I didn’t want unsolicited advice from inexperienced parents who hadn’t even heard of autism. I didn’t want my parenting bashed. I didn’t want to be incriminated by other autism mothers for not pretending this was a breeze or being unhappy. For not using the correct terminology. I didn’t want to hear the asininity that comes from crude people who glamorize having a disabled child, like my strife was invalid and an exaggeration.
Worst of all, I did not want to hear the phrase I loathe the most: Autism is a gift. A gift to whom exactly? When my son is crying out of frustration because he can’t verbalize words he knows and understands, do you think he feels this is a gift? Do you think he feels it’s a gift when I have to change his diaper with cold wipes in the early morning? Don’t you think at this point he feels it’s intrusive? Is it a gift that he has to be held down by five people in order to be examined because he’s scared of being bound down? Is it a gift that we use a high chair and a stroller at the age of 6? Is it a gift when he can’t enjoy a movie at a cinema like the typical child can because this disability doesn’t allow for it? Is it a gift that he has no sense of danger and could kill himself if not consistently monitored?
Saying autism is a gift is dangerous. Its divisive. It doesn’t allow for authenticity. It’s the reason mothers like me isolate themselves from the world. We cannot relate to parents with typical children, and we can’t relate to the hard core, sanctimonious, politically correct autism parents who claim to do it all like it’s effortless. We feel there is no support for us. I don’t want condemnation for not acting and feeling like our world is fantastic. I don’t want criticism for confessing that this isn’t easy and that it’s painful every single day I watch my son struggle.
If we could choose a world where autism did not exist, that’s the world we would pick. That’s the cold honest truth. To hear autism is a gift is like a slap in the face. It undermines the struggle both parent and child experience. It dismisses the agony I STILL hold so heavy in my heart because I am still mourning. I’m in mourning for the child I idealized while I was pregnant. While I love my son, while I would do everything in my power to make sure he’s taken care of, I wouldn’t wish this pain on anyone.
What I want the most someday? To sit with my son one day and have a long, in-depth conversation with him. To bond and learn about him. To find out what’s going on in that little head of his. If I never get that, that’s okay as well. I will always love him unconditionally. He’s my breathing, walking and talking heart. I just wish more parents were talking about this. I just wish more parents were honest about how hard this is. We could use the support. I know I could.