I haven’t written a lot about a major challenge in our home. Mostly because it’s overwhelming and scary and so hard to describe. Also because I don’t want to say anything that will violate the privacy of my children and make anyone uncomfortable one day. But I think it’s time to be more honest and brave. I hope this will help me work through some difficult feelings and maybe even help someone else.
My middle bug has behavioral and developmental concerns. He’ll turn 4 next month and still doesn’t speak – not “mama,” or “dada,” or even the word “NO.” He has major tantrums multiple times a day, especially around limit setting. And his tantrums aren’t the typical crying and kicking. He hurts himself. He hits himself. He throws himself down on his shins and covers himself in bruises.
Keeping him occupied is a serious challenge because he has very limited interest in the world around him. His favorite activity is to tear up pieces of toilet paper and watch them fall to the ground. I work hard to get him interested in drawing or coloring, but he just eats the crayons, markers, and paper despite my constant efforts to keep them out of his mouth. He’s not able to sit down and listen to a story, so I have to stop reading every single page and pull him down from unsafe activities. Cooking meals is scary because he still tries to touch the stove burners and I’m terrified that he’s going to pull a hot pot down on top of himself.
Of course, I instantly blame myself. Is he not talking because I didn’t talk to him enough when he was a baby? Did we rely on the TV too much? Are his tantrums because I don’t know how to discipline him? I’ve spoiled him? Am I so ineffective as a mother that I can’t even teach him not to touch a hot stove top? Is it because of the prenatal DHA that I took that was supposed to help with brain development?
More and more people are starting to use the word “autism” which is difficult for me to hear. I think of the stereotype of the word and that’s not who I see. I see everything that he is able to do and am amazed by him. My favorite thing about him is how cuddly and sweet he usually is. He loves to hug, to rub his face on my face, and any sort of skin to skin contact, as long as he’s not in the middle of a tantrum. All that other stuff? They’re just challenges to work through, which every child has.
But it’s becoming more clear to me by the day that he has, at the very least, special needs. He’s been in our school district’s special education preschool since November for 2.5 hours a day and has shown no progress, so we’re exploring other options. A more specialized learning environment made for kids with autism. We also have an appointment with a developmental specialist to help determine a specific diagnosis and plan for treatment.
It’s exhausting. Constantly having to describe the worst parts of him as though the wonderful traits don’t matter. Physically chasing him for the simplest of tasks because so much is such a struggle. Cleaning up the toilet paper bits on the floor all day long. Keeping doors and drawers constantly locked because we can’t keep him from eating and destroying everything. All it will take is for us to make one mistake and he could get seriously hurt.
It’s isolating. We’re really not able to go many places with him because of his tantrums. He requires so much energy and attention and I feel guilty leaving him alone with my husband because I feel like we should always be tag-teaming him. I end up canceling plans with friends and typically only leave the house when absolutely necessary. I can’t take him to other people’s houses because he will destroy everything — he’s like a little hurricane.
I feel judged. By family and the professionals in his life. Trying to explain why we can’t go out to the ice cream stand because he is sure to have a tantrum when we try to get him to sit down. I worry that people think he’s an abused or neglected child. That my family thinks I’ve spoiled him too much and his tantrums are a result of not getting his way. That I’ve “created this.” I see the raised eyebrows and the rolling eyes. I can only guess what they’re thinking and my guesses are never good.
I feel alone. We don’t have a lot of help because our family has their own challenges and/or live far away. I don’t have a ton of friends. I don’t know anyone else who is experiencing the same things. I wouldn’t even be able to attend a support group because of my work schedule and my husband’s work schedule.
I feel helpless. So much of this is out of my control because trust me, I’ve tried to control this. I can’t.
I feel petty because I worry that I won’t ever be able to travel or even take my family to a restaurant.
I feel scared because I don’t know what to expect down the road. Will he ever start talking? Will he be able to go to school? What is his life going to be like? There are so many unknowns.
But today I’m feeling hopeful. He’ll probably be starting this new program next week and they seem to get what’s going on. They seem to love what they do. To appreciate how his brain works and how we can all work together to help him.
Humor. Grace. Forgiveness. Yesterday I wrote about remembering to offer those to myself and those around me. I’m going to keep trying.