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Beyond the Disability

Hope dandelionBy Cathy Jameson

We were at a children’s hospital last week for some testing.  Ronan had two appointments spaced several hours apart.  It was going to be a very long day for him.  It was going to be a very long one for me, too.  Despite that, I was actually looking forward to our day out.  We were catching up with one Ronan’s providers we met about a year ago.  Integral in getting some much-needed equipment and services for my son, I looked forward to hearing what else he might suggest I could, or should, be doing for Ronan.  Before that follow-up appointment though, Ronan was scheduled to see a new doctor.  He was also scheduled for some testing.  New people and new testing can make me nervous.  Understandably, they can make Ronan nervous, too. 

Ronan got through the first part of the day pretty really well.  Complimented for his patience and how he managed to deal with the intense sensory overload one of the tests caused him, the nurses and the doctors we encountered remained very positive and very patient-centered.  Speaking to Ronan, showing him the equipment they were going to use, and asking him for input knowing that he would not respond, they made Ronan as comfortable as they possibly could.  I was pleased.  Other families we saw coming in and out of the exam rooms that morning also looked pleased.  

Since we had about 2 hours before the afternoon appointment would begin, I thought we’d head over to the cafeteria to eat and rest.  But Ronan was already tired and the long walk to and from the cafeteria would do him in.  Finding a quiet area near the entrance of the clinic where he’d be seen next, I sat us down on a bench and took out the lunches I’d packed.  Ronan was happy to eat.  He was also happy to also have some time on his iPad. 

While we were eating lunch, a happy fellow walked past us.  Stopping when he saw Ronan, he struck up a conversation.  He noticed Ronan’s head phones and also the Minion Rush game Ronan was playing on the iPad.  I smiled.  The young fellow was verbal but was incredibly hard to understand.  His mom chimed in and told me a little about him – he’s in 8th grade and excited for high school where his big brother goes.  We talked about how big a transition that would be.  Commenting on Ronan’s head phones, I told the mom it was the best $11 we ever spent.  The boy laughed and said he liked them.  Then, he pointed to the game Ronan was playing.  Impressed with how well Ronan was doing, he offered a huge smile and lots of praise, “Yeah! Go! Did it!”  His mom translated everything else he would try to say to us. 

After a few minutes, they had to go.  As the boy turned toward the door, I thanked him for taking time to say hi to us.  He kept walking but was not done speaking.  This time, his mom didn’t have to tell me what his message was.  He’d already given Ronan 3 compliments, but he had one more he needed to share.  Already outside, he looked back at us and belted out, YOU’RE AWESOME!  I smiled and laughed a very happy laugh.  Down syndrome didn’t take any of this kid’s personality away.  If anything, it gave him more life.  What a treat for me to have been blessed by it. 

Because of his disabilities, that young boy, like Ronan, could potentially face life-long struggles.  Physical difficulties, emotional hardships, and other differences that typical children may never experience will be part of his life.  Those, coupled with the medical issues that brought him to the hospital that day, are his “normal”.  How that boy with Down syndrome choses to live with his normal will certainly help influence others around him, including his family.  His mom looked tired.  She did not have nearly the same pep in her step as her upbeat son did.  But she made sure to be present in the moments that were important to him, which included the few short minutes he stopped to chat with us. 

He could’ve picked anyone else in the hospital to talk to, and I was happy that he chose to spend them with us.  Clueless as to how many developmental delays Ronan has, absolutely unaware of how overwhelmed things can be for me, that young boy and his mom were a highlight to our very long and taxing day.  They, like the providers we had just seen, looked beyond Ronan’s disability and focused on what he could do.  The nurses saw that Ronan could work through some of the sensory problems his exams caused and created a better outcome for the necessary testing.  The doctor realized “less is more” and also brainstormed a new plan for another exam that Ronan needed.  Throughout both the morning, and later in the afternoon, the staff encouraged Ronan and praised him for what he actually could do.  We didn’t get done all of what we hoped to do, but together, we made some progress which we’ll hope to build on the next time. 

I doubt we’ll see that young boy and his mom at our next appointment.  The hospital is quite large and must serve hundreds of patients a day.  We’ll surely see other special needs patients when we return, and I’ll hope that we’ll encounter someone just as positive and encouraging as that young boy was when we’re there.  I loved that that kid came right up to us.  His joyful spirit was exactly what I needed in that moment.  I loved that he looked well beyond Ronan’s disabilities also, something some typical children and adults are not able to. 

As I watched this young boy happily be himself, I was able to look beyond his disability.  I focused on what he was capable of doing.  Capable of making a friend.  Of having a meaningful conversation.  Of engaging someone in the moment.  Of helping me —a tired and worried mom of a non-verbal child who has complicated medical issues.  Of reminding me to be happy and hopeful.  I wanted to freeze that moment in time and share it with everyone I knew. 

Because it can be difficult to look beyond the disability, I also wanted to share something else:  some suggestions on how others can also begin to look beyond the disability and focus on the ability. 

Talk to and with a person with disabilities, even if they’re non-verbal.  They can hear you.  They can see you, too.  Your pitch, tone, and what you’re saying is registering.  So is your non-verbal communication – your facial expressions, your eye gaze, you’re stance.  They can see, hear, and feel it all.  Instead of talking at them, talk to them.  When we get to see her, one of my oldest daughter’s friends goes right up to Ronan and says, “Hi, Ronan!  How are you?” She offers him a hug, a high five, or a fist bump.  Ronan immediately responds to her greeting (with eye contact and by reaching out to high five or fist bump back).  Lately, he even tries to verbally communicate with her!  It’s still very jumbled and unintelligible, but he’s trying to say something.  I’m not surprised.  This young woman gets all of his attention because she gives him all of her attention.  You may not get a response right away with Ronan or with someone else who is non-verbal, but you may get something more important by trying - their respect. 

Show interest in what they’re doing in the moment.  If possible, ease into the activity with them.  Ask if you can have a turn.  Ronan’s not going to give you his iPad even if you ask nicely, but talk to him about what you see on his screen.  Comment about the video, the game, or the image he’s pulled up on the screen.  If you don’t get a turn, don’t be offended.  Some kids are unable yet to respond with that kind of request.  But that shouldn’t stop you from trying. 

Engage yourself.  My children have become somewhat of a magnet to other special needs kiddos because they make it known that they see them, they hear them, and that they are genuinely interested in what they are doing (and sometimes in what they are not doing).  I know that it can be incredibly uncomfortable in the beginning, especially if the person is unable to communicate, but take a chance on chiming in.  It could be as simple as offering a polite hello or a quick hand shake.  If it’s someone who needs assistance getting into or out of a building, hold the door open.  If you see someone in a scooter or a wheel chair at the grocery store that could use a hand, offer to load the groceries on the conveyer belt or in their car for them.  If a family needs extra space so that they can maneuver their child to a table in a restaurant, to a seat in the movie theatre, or through the mall, or around the park, move a seat or two over or make enough room so that they can get through without incident.  Even with all the practice and all of the opportunities we’ve created for Ronan, being out in public can still be tricky.  It can lead to some embarrassing moments, too.  The last thing I want to do when we’re all out together with Ronan is to cause a scene where more people can watch whatever is about to unfold.  Strangers who recognize that we sometimes need a wide berth, and who do so without rudely staring or muttering under their breath, are a godsend to us. 

Be positive.  In a world where individuals with disabilities are looked down upon, be the light.  Find one quality that that person has and focus on it.  Be helpful, kind, hopeful, and happy while you are with them, too.  You may be the only person who treats them as a whole person that day. 

Spread that positivity around.  Don’t just be kind because you’re capable of being kind; be kind because it’s the right thing do to.  Then, make sure your kids are kind, too.  Lead by example.  Ooze that positivity wherever you and your kids go.  It will make other people smile.  When that young boy yelled YOU’RE AWESOME to Ronan, another mom was walking into the hospital with her young teen.  The mom was rigid.  The girl was, too.  Neither of them looked happy to be there.  As the young boy’s message sailed through the air toward us, this mom slowed her pace and uncrossed her arms.  Walking past me, she said, “That was sweet,” “Yes,” I replied, “it really was.”  So was the smile that slowly started to spread across her face. 

Special needs parents and their children face many kinds of moments.  The ones that bring smiles are the best kinds.  Those happen when we, and those around us, remember to look beyond the disability.   

Cathy Jameson is a Contributing Editor for Age of Autism.  

Comments

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Morag

What a good article, all in a days experience of it. We booked a holiday to a holiday camp in Skegness for 4 of the kids ,all with varying degrees of "The Behaviours" We had a great holiday ,but after a full week of fractured and lack of sleep us 4 staff were feeling a bit bedraggled from it . One train change with Porter assistance for the huge amount of luggage required for a week away .
Problems at change over ,after 20mins the Station Master had to sort out the mix up .We had transferred to the right seats but on the wrong carrige on the train .After 20mins of telling other passengers "Go sift your seats ,we are not shifting ours" Was it the Porters mix up or mine I honestly don't know ? but I had to take the stick and the sniggers of it cause I was in charge of the group for the week . The tannoy announcement said the London to Glasgow train will be arriving 20 mins late.
"What an embarrasement !"

cia parker

I bought a Waldorf book on autism nearly fifteen years ago. It suggested pairing an autistic child with a Down's syndrome child at school, as the Down's syndrome children were nearly always very friendly and outgoing, which both benefited the autistic child directly and furnished a good role model.

Managing Editor Kim

Robin - hi. I'm grateful for the progress my 3 girls have made, but I agree with you that no one who isn't living our lives understands the magnitude of the exhaustion and difficulty. For our kids first and foremost and yes, for us their aging parents. XOX

Robyne Rohde

Been at this for 20 years. When I see parents of children with severe disabilities, they are in a daze, tired, worn out, but mostly so very sad.

My 20 year old son is profoundly autistic, nonverbal and still not toilet trained. I grew up with an older special needs brother...

And for the record, I would give my life to have a child like my brother or a Downs Syndrome child.

While I love my son more than life itself, the financial, emotional, and feeling of isolation makes having a positive outlook quite draining and wishing we could have one 'normal' day.

Grace Green

Cathy, Ronan IS awesome, and so are you! Well done to both of you for managing your difficult day productively.

I remember reading in a book by Uta Frith (and I know she's not too popular with folks here) that she, or maybe it was Simon Baron-Cohen (ditto) performed an experiment into autism, using a group of autistic children, another of Downs Syndrome children, and a control group of unaffected children. The result showed that, in the deficits specific to autism, those children gave a poorer performance than either the "normal" kids or the Downs children. I always remember that when people fail to recognize my difficulties. I find people with Downs charming and delightful, and I'm sure no-one ever accused me of being either of those!

Laura Hayes

Thank you, Cathy, for the light and encouragement you share and bring to the table. They are both very needed and appreciated! I loved this precious recap of your encounter with the other mother and son :) We families with disabled children share a special, unspoken bond.

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