It’s much harder than I ever thought it would be. The tears can be abundant and quick to come but so are the unexpected smiles and laughter. The good days are good and the rough days are awful. Being an autism mom is simply hard.
I’m tired about 98% of the time and not the ‘I didn’t get enough sleep last night’ tired but the soul tired where my whole body is exhausted. There are many times where I think and even say ‘I can’t do this’. Can’t take another slap to the face, hit to the arm, ear splitting scream, meltdown on the floor, freak-out in the car, 3am wake up call, pulling of my shirt or dodging an item that has been chucked at me. I know these behaviors are normal for normal children but they are intensified to unknown limits for our child with autism.
I live in a consistent anxiety bubble. Anxious about what will set him off, hoping that everything goes as smooth for him because then it will for me. Always looking into the next minute to see that all is okay. This anxiety bubble is especially apparent in the mornings with how J will be today. Can I talk him through getting ready, will his picture schedule work, will having his music on help or deter, will we get through this morning without any fights?
The public speaker that tells you to stretch in bed before you get up each morning, I can totally do as my day hasn’t officially started, my feet haven’t touched the floor. However that part about always smiling and saying that you’re great when someone’s asks how you’re doing. What a crock. I can’t lie anymore because there are days I’m not okay, I’m barely hanging on.
I’m always worrying about if I’m not doing enough or doing too much, odd concept but sometimes I need to just step away and let him be. When things are going well, I have this euphoric need to keep it going. Analyzing what I’m doing well and what is working so I can keep this trend going for as long as possible. My life is in a constant state of flex, always changing to the ever evolving J. I love the times when all seems right in our world but I know they are not meant to last and hardships will be upon us again.
I write this not for pity or concern, but for understanding and even acceptance of parent’s caring for their special needs child(ren). Our struggles are completely different, usually more intense than those of parents with typical children. We might have an off day or 5 but your smile and kind words are more appreciated than you’ll ever know.