The Autism Parent's Bucket List
Metro Parent's March list of 101 things every child should do or learn before they grow up didn't cut it for parents of autistic children. Here's an amended list for parents raising a child with autism.
I don't live in southeast Michigan, but I stumbled across Metro Parent's Childhood Bucket List last month online. With a cheerful graphic and a happily-ever-after tone, it was one of those bright and sunshiny pieces that should leave readers in high spirits as they thought about their child experiencing the 101 exciting experiences and lessons on the list. But for me, the mother of a child with autism, it had the opposite effect.
At first it was fun to read the suggested must-do activities. But the more I read, the more I felt completely left out. Easily, I could see my four typical children enjoying many of the suggested outings, but trying to imagine Ronan doing them? Not a chance.
I'd like Ronan to experience No. 3, "Soak up the night sky away from city lights," but picturing it made me shudder. He's been under the stars alone before, but it was because of a horrible mistake I made when I accidently left a door unlocked.
Shaking that terrible memory away, I scanned further down the list to No. 76, "Make – and lose – a friend." Friends. Oh, to have friends like typical children do! The friends Ronan has are ones we choose for him. Not because we are overprotective or controlling, but because Ronan lacks social skills necessary to know how to make and keep friends.
I continued reading and skipped to No. 91, "Want something but not be able to get it." I don't doubt every day that Ronan doesn't wish for at least one thing to be "normal" for him. From knowing how to use the bathroom on his own to being able to contribute to a conversation he hears us having. Not being able to speak but having the capability of understanding everything we are saying must be aggravating. Ronan wants to communicate. He makes that very clear, but Ronan still lacks speech and is left frustrated more often than not. Ronan lives "want something but not be able to get it" almost every day.
The longer I read the list, the more I picked each suggestion apart. I, too, want Ronan to climb a tree, to go for a boat ride, to take an enjoyable road trip while building the best childhood memories possible. But I also want him to learn to do the simple things, the things every child should be able to do: to speak, to tell me about his day, to play appropriately with his siblings and to want to join our family's daily activities. Ronan tries. He tries so hard.
Looking one more time at the Metro Parent list and at these unreachable experiences my son is not ready to take on, I began thinking of my own list. What ran through my mind were ideas, activities and dreams relatable to an autism parent and those things most of us want for our children. It's not 101 items long, and it's a different kind of list. Some are goals for today. Others are hopes and dreams I have for the future. Not just for Ronan, but for all kids.
Here are 41 childhood experiences for children with autism:
1. For the non-verbal child to be able to speak.
2. For the verbal child to have meaningful conversations and to not have to script or have echolalia.
3. To be able to sleep through the night (which in turn allows the parent to sleep uninterrupted, as well).
4. To have a successful school day, a day without being put in restraints, without being neglected by staff and where, all day long, teachers are able to teach and students are allowed to learn.
5. To not have sensory issues impede activities, to not freak out about being dirty and to not be afraid to touch different textures.
6. To learn to keep clothes on and not be bothered by tags, seams or textures.
7. To know how to communicate fear, anger, disappointment and other emotions safely instead of using self-injurious behaviors to express yourself.
8. To have and keep a friend outside of a social skills group setting.
9. To not have to be watched 24/7 for your own safety.
10. To understand safety inside and outside, on the street, in the car, on the playground, at home and at school.
11. To enjoy water and the pool for what it is and not for the obsession it may have turned into.
12. To be able to play outside and enjoy the great outdoors without eloping or wandering.
13. To be able to participate in community events without being stared at or made fun of.
14. To know how to play, to play with someone and to play appropriately for the sake of playing, not because it's part of therapy.
15. To allow hugs from family members without recoiling from severe sensory issues.
16. To not be frightened by noises, lights, people or changes in your routines.
17. To go to a movie or show without having it need to be a sensory screening.
18. To be able to tolerate music instead of feeling like your head is going to explode from it.
19. To watch a movie through to the end and not push stop, rewind, play, stop, rewind, play, stop, rewind, play every time the movie is on.
20. To be free of the parts of autism that prevent growth and development.
21. To leave behind the stims.
22. To lose the OCD that restricts building skills.
23. To have the means to access useful therapies.
24. To realize that poop smears are not art work.
25. To be potty trained.
26. To be free of dietary restrictions.
27. To ride in a car without having to be strapped into a five-point harness because of unsafe car-riding habits.
28. To be allowed to learn, grow and experience what typical children are automatically allowed to.
29. To be healthy.
30. To be recovered.
31. To one day be able to live independently.
32. To have your abilities be the focus, not the disabilities.
33. To be appreciated.
34. To be heard.
35. To be respected.
36. To be loved, supported and accepted.
37. To be seen as worthy and not a charity case.
38. To be seen as the beautiful human being that you are.
39. To be an inspiration for someone else.
40. To be given your childhood back.
41. To never ever give up.