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The Autism Parent's Bucket List

Bucket listBy Cathy Jameson

A few weeks ago Metro Parent magazine, a regional publication in Michigan posted a bucket list.  Included were 101 exciting activities to be experienced during childhood.  With a cheerful graphic and a happily ever after tone, it was one of those bright and sunshiny pieces that should leave a reader in high spirits.  Obviously geared toward typical children and their parents, I was left more dejected than filled with joy.  

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.  It’s hard enough for him to do one normal every-day activity let alone attempt 101 reach-for-the-stars adventures.

Pushing the article out of my thoughts, I looked for something else to read.  While doing so, I reminded myself how much Ronan has had to overcome.  I am proud of how successful he is and the fact that it’s because of his sheer will that he makes much of the progress he makes.  It may take ten thousand times more effort than the average child for Ronan to go through the motions, but he proves over and over again that he is no quitter.

While thinking about how long it takes Ronan to inch along, I got caught up in my thoughts.  Instead of continuing to think about Ronan’s amazing personal feats, I unknowingly started to compare him to his peers.  Glancing back at the 101 bucket list ideas, bitterness fell over me.   Those incredibly fun things are just not going to happen for my child.  They won’t happen now or any time soon for that matter.

I couldn’t help but think of how completely unreachable some of the must-do activities were.  Not just for Ronan but so many children like him—their childhoods are so different than a typical child’s and their skills minimal or completely absent.  The longer I stared at each entry the clearer Ronan’s abilities paled in comparison to whom these activities were geared toward.  Also very apparent was the reminder that we’re years away from even considering introducing some of them.  Sure I’d like Ronan to soak up the night sky away from city lights (#3), but picturing him outside in the dark of night under the stars 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.  Make—and lose—a friend (#76).  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.  The people Ronan is surrounded by are people we trust and people who appreciate him for the skills he does have.  They enjoy his company even though his attention span is fleeting, and they never judge when his interactions with them are sparse.

Because of who we’ve let enter into Ronan’s life, a great deal of acceptance and unconditional love has been given and shared with Ronan.  I do believe he knows that and that he feels it, too.  While Ronan may not be able to reciprocate a verbal “I love you,” response, he is receptive to when we say it and when we show how much we and others love him.  Experience unconditional love, #39 on the bucket list, goes without saying; and, I would expect nothing less for every child, typical or autistic.

I continued to reading and skipped to # 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 exactly 101 activities.  It’s a different kind of bucket list.  Some are goals for today and for right now.  Others are hopes and dreams I have for the future.  And not just for Ronan, but for all of our children.

Ronan isn’t able to manage much of the world outside our own home just yet though.  When he is it’ll be a day worth celebrating.  I want to give Ronan the world, and I think most parents want that for their own children, too.  For now, while we both build the skills it’s going to help to get Ronan through each and every day I’ll remain right by his side.  I’m ready to guide him, to nudge him gently and to point him in the right direction.  It’s the least I can do.

An Autism Parent’s Bucket List

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 a day 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 prevents 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.

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

Silly Mummy

To stop being afraid and to have another baby.

Frances Franklin

For everyone to understand...and not have to hear "He don't look autistic!" Or "If he is You can't tell he is."

Gen

This is amazing! Thank you so much for writing this. As a mother of a beautifully autistic boy, I feel this all the time when I'm reading articles. Although it can be very heartbreaking this list is so true! We wish for love, acceptance, and safety! He is so amazing. I love watching him grow. I pray that he can have success in so many of these things. Thank you.

Benedetta

Maybe not live independ -- but at least have a job and earn money - keep a job, Drive to that job, to have benefits, pay for their own seizure medicine, attention deficit medicine and video games. To have a job to take them away from video games for at least a few hours.
To have a job so they will feel self worth,--- and some day when I am gone -- they can still afford to live in my house, and pay the electric and water bill.

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