I’m usually pretty private about my life. I’m the grin and bear it type of person who doesn’t like other people to know I’m struggling. It’s tough for me to be open and vulnerable. But I decided to push that all aside, gather my courage, and share my story. Not because I want to or it’s easy, but because I hope my story can reach the right people and let them know they aren’t alone.
My stepson is 25 years old and has Down Syndrome. He has a severe form of Down Syndrome and is nonverbal. I came into his life 12 years ago, and he stole my heart. I love this kid. He’s taught me to see life differently. He’s taught me patience. And he’s often been my reason for going on when I wanted to give up. His smile lights up a room. His laughter is guaranteed to make you giggle. That’s the beautiful and amazing side to being his mother, but there’s a very difficult side to parenting my son that I’ve rarely shared.
Ty has meltdowns. Let me describe a meltdown for you so you can understand what I’m talking about. When he has meltdowns, there’s screaming, hitting, kicking, scratching, and head butting. It’s violent and volatile. He’s completely out of control.
My husband never told me about the meltdowns until after the first time I witnessed one, and I understand why. How do you describe to someone else that your child is beating you up? The first time I saw him have a meltdown I was shocked. I’d only seen the happy, loving side of my son, never this kid who was throwing punches and kicks at his dad. There were two of us then to get him back under control. A meltdown would last 5-10 minutes, we’d keep him from hurting himself and try to minimize the damage to ourselves, and he’d calm down.
As Ty got older, the meltdowns got worse. They became more frequent and they lasted longer. Meanwhile, my husband was diagnosed with end stage kidney disease. Dialysis destroyed one of his heart valves, and after a long stay in ICU and then 12 hours of open heart surgery, he was gone.
Parenting a child with disabilities is difficult. Being a single parent of a child with disabilities is even harder. Explaining to my nonverbal son why Daddy was gone is probably the single hardest thing I’ve ever done in my life. And I had to do it again and again because his mind had a difficult time grasping the fact that Dad was gone for good.
The months after losing my husband became a living hell. Not only was I dealing with my own grief, but I was dealing with my son’s grief. With no way to verbally express his grief, anger, and pain, all that emotion came out in meltdowns. He started having meltdowns regularly. After them, he’d cry and want his Dad. I’d walk away from them battered physically and shattered emotionally.
After those meltdowns, I’d end up on the floor locked in the bathroom crying. It’s devastating to have a child you love hurting you. I got him into behavioral therapy, and with the help of a good therapist, we were able to help him through the grief. The meltdowns calmed down somewhat for some time, but they weren’t over.
The last meltdown lasted more than 30 minutes. I was dripping blood and having chest pain. The police and EMS were called, I was taken to the hospital by ambulance, and my son was admitted for a psychological evaluation. I don’t have words to describe how dark that night was.
Due to health problems, I’m faced with placing my son in full-time care so I can get healthy. It’s tearing me apart to think of letting him go into full-time care, but both my health and safety are at risk. I’ve held on as long as possible. But I need help caring for him to make sure we both stay safe.
So why tell my story now? A couple weeks ago, I read the story of another mother who has a similar story. Her autistic son became so violent that she described her family’s life as living in a war zone. When I read that, I cried. That’s exactly how it feels! And I was crying because I’d finally found someone out there that knows what I’m going through.
Most parents won’t ever understand what it’s like to have their child punch and kick them in anger. And I’m glad they won’t. But walking this path is isolating. My social life is nonexistent. Reading the story of another mom who has walked this path brought some healing. It let me know I wasn’t alone.
As hard as it is to share this story, I want other parents to read this story. I want parents of special needs children to read it and know they’re not alone. I want to stop the judgment from parents who know nothing about walking this path. I want friends and family members to have their eyes opened so they reach out to parents who may be hiding their struggles because they don’t think anyone will understand.
If you know a parent with a special needs child, send them my story. It just might offer that little spark of hope they need today.