The Parched Life of Autism
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In Times of Trouble

Irish troubles blessingBy Cathy Jameson

Waving her off, I faked a smile and then quickly turned my head.  Capturing the curiosity of a stranger, my heart sank.  I'd just encouraged my typical children to go ahead of us into the chapel.  Wishing I'd asked one of them to stay with me, Ronan and I were now in a standoff in a parking lot.  It's not the first time he'd been there.  But he was making every indication that he did not want to go again. 

I whispered to Ronan, “Dude, it's just a few more steps.  You can do it, I know you can.”   

Turning my head back toward the lady who'd come to a complete stop in her car behind us, I politely waved her off.  She was still trying to decide if I needed help or not, so I faked another big smile hoping she’d take it that we were okay.  At the same time, Ronan took one tiny, willing step forward.  Seeing him take that step must have reassured her because she zoomed away.  I wish Ronan would've zoomed into the church where his younger sisters were waiting for us.  But that one step was all he ended up taking. 

Frustrated, I said, “Can you please go?”

Before Ronan could make any sort of response, good or otherwise, an usher left the narthex and walked toward us.  Both doors that lead into the back of the church were wide open.  He had a front row seat to the struggle I was praying would end.  “Hey, can I help with anything?” he very politely asked.  Normally, my other son helps walk Ronan in, but he'd gone to an earlier Mass.  They effortlessly walk in together.  They always make it to the pew.  If Ronan shows any sort of hesitation, it’s brief because Willem turns up the encouragement which always results in a happy ending. 

I was not the fun sibling though.

In that parking lot, I was the mean ol' mom who only made demands, demands that Ronan had no interest in.  If that wasn’t bad enough, I now had a growing audience.  I sheepishly smiled at the usher and said, “Well, he doesn't seem to want to go to church today."  Nodding, he asked, "What can I do?"  As much as I wanted to do this alone, I said, “This is Ronan, and if you could take his hand, maybe we can walk him in together."  Without hesitation, the usher did exactly that.  We were just a few steps from the doorway when the woman who'd seen us in the parking lot came walking quickly toward us.   

"Is he okay?  Are you okay??"  

I was startled by her questions.  I was okay, and my kid was just being stubborn, I wanted to share.  I didn't say that, of course.  The last thing I wanted to do was make it sound like Ronan was being obstinate.  If he was typically developing, I would call his refusal to go in the building an obstinate behavior.  But the developmental delays, the communication struggles, and the sensory overload is not obstinate at all. 

It’s part of what he has to handle. 

Smiling confidently this time, I said, “We’re both okay, thanks for asking.”  She heard me but blurted out, “I’m a nurse, and when I saw you in the parking lot…it looked like he was about to fall.  Do you need anything?”  I promised her we didn’t as I pointed to the kind fellow who was still helping me inch Ronan through the chapel door. 

“I think we got it this time, but thanks,” I replied.

“Okay, that’s good.  I hope he has a good day,” she answered.  Me, too, lady.  Me, too, I said to myself because I could feel Ronan tensing up as soon as we approached the threshold.  “Ronan, we’re almost there.  Your sisters are in the choir loft, waiting for you,” I added.  I thank God that the choir loft is never used for the choir and is always open to parishioners.  It’s the one place that he will sit, and it seems, the one place he enjoys going. 

That morning, Ronan refused to even consider going there. 

The usher helped as much as he could, but soon needed to assist another parishioner.  A chair happened to be off to the side of the main entrance, so that’s where Ronan chose to sit.  I had a great view of the altar and could hear the readings perfectly clear, so I actually didn’t mind.  All went well for about 55 seconds.  Ronan wouldn’t sit perfectly or nearly as peacefully as he has done the last few weekends in a row.  He was antsy, distracted, and at one point irritated.  Pointing to the pews in the main chapel and not the choir loft, he was determined to do something other than what’s become our regular routine.  My usual tools to help him focus were not working.  He wanted the timer off.  He was not interested in his book.  He would not acknowledge the sign language I was using either. 

Growing frustrated, I could only pray harder that this church outing would end in some sort of success. 

Since Ronan wouldn’t budge, the usher brought over a metal folding chair for me.  “Might as well be comfortable here”, he said with a genuine smile.  This isn’t our home parish, but the people that go here welcome us when we do find ourselves there.  The ushers are always smiling, and the people are always respectful of Ronan and his many needs.  I was grateful for their open arms again but growing frustrated.  Something that’s become a simple task was turning into an awkward situation.  Then the Responsorial Psalm began.  I wanted to cry. 

Be with me, Lord, when I am in trouble.

Oh, Lord, it is troubling!  It is trying, and tiring and oh, so frustrating sometimes.  This kid can do this.  He’s done it so well recently and knows the routine.  He knows all of the expectations, too.  Maybe he got used to Willem being the one to walk him in, which is beautiful, but with growing teenagers come busy schedules that take us in different directions. 

His angels He has given command about you, that they guard you in all your ways…

I ask my Guardian Angel for help all the time.  I prayed the angels would help me help Ronan, especially that day when it felt like Ronan was about to dart away from me.  The small chapel parking lot is not very busy at all, but the main road right around the corner can be.  Ronan hasn’t wandered or run from us in eons. 

But the potential, and the worry that comes with that, remains. 

Even with Heavenly assistance, I kept ever vigilant and constantly aware of our surroundings.  It’s second nature for me, and also the siblings, to assess where we’re going, what we’re doing, and to know in advance what exit routes exist should we need to use them.  I wanted so desperately to not have to use any exit routes that morning.  Ronan almost made sure we wouldn’t have to by refusing to walk into the building. 

He shall call upon me, and I will answer him; I will be with him in distress; I will deliver him and glorify him.

Surprising me right after the Responsorial Psalm, Ronan indicated he was finally ready to find his sisters.  That, in and of itself, was a major success. 

Ronan stairsThe girls, who’d been patiently waiting for us in the choir loft, smiled a soft smile when they saw us come up the stairs.  Keeping the momentum going, they quietly encouraged their brother to sit in the pew and read the missalette, something that absolutely captivates him.  While he thumbed through the hymns, I could feel some tension release in my neck and shoulders.  It would take just a few more minutes for Ronan to feel completely settled, but I could now focus on the Mass and the prayers that came next.

It wasn’t at this Sunday Mass when Ronan immediately put the missalette away and stood up as the priest said, “The Mass has ended.  Go in peace to love and serve the Lord,” but Ronan knew exactly what to do once those words were spoken again that day.  He knew the routine, too, that we’d have one more song to sing and then we could go. 

Standing with us for that recessional hymn, he waited so patiently for us. 

As he stoRonan headphones 3 20od there next to me waiting, I let the peace of the better moments of that Sunday Mass wash over me.  Feeling that peace, I prayed for more of it.  Without it, I know I wouldn’t have been able to serve Ronan, or the rest of my family, well.  It takes time to do things well for Ronan.  It takes patience.  It takes encouragement, for him and for us.  In times of trouble, like we temporarily experienced that morning, I sometimes do want to raise my voice and balk at what’s going on.  But it wouldn’t be right to do that.  To constantly love and serve certainly is harder; but it will always be a better option.  I hope those you love and serve today recognize your efforts.  I pray that those who love and serve you can carry you peacefully through this week and always. 

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=QaEx2A7p9Dk&t=28s 

 

Comments

MamaB3ar

Cathy, God bless you for trying one.more.time with Ronan. If one.more.time were stones, you would see that you have built a fortress for him, as safe and secure as you can make it. The effort has also strengthened your heart, given you courage to continue …

One.More.Time

Jeannette Bishop

My d. had a period (when she was much younger) of having to get her feet in the right position and right order to step out a door, otherwise she would back up, shuffle her feet, and keep trying it, I think (I'm always guessing) to get things ordered right or functioning in a familiar way in her head. She'd collapse on the ground extremely unhappy if we just moved her through.

I think I sort of understand, because I sometimes think I'm in a similar place (though I can't be sure). Particularly when wirelessly taxed for a perdio for example, I might be aiming to perform some physical task and if someone else does it, sometimes I'm hanging in an unfinished state unless I sort of go through the now unnecessary motions, check on it, whatever, just to feel finished with it. I can actually choose to not go through those motions (I don't have that much OCD, if that's what this is), but honestly, sometimes it's just the easier (despite seemingly kooky) path to take.

If Ronan was used to his brother's help, his inputs, even his voice, etc, he might have been having to readjust a lot mentally to do this differently (but I'm still guessing). It does seem, how you share this, that he wanted to make this work and he in a way "baby-stepped" himself through it--possibly he sees how important this is for you and he may find it valuable for himself also if he doesn't already (still just guessing :) ).

I'm so good to hear you had a moment of spiritual refreshment, and I hope Ronan feels a major sense of accomplishment.

But, if I'm way off on all the above, please take the (non-sensory overloading) hug your story makes me want to give to you both instead.

Gayle

Cathy-I have also had similar experiences with my adult autistic son at Sunday mass and I completely understand the stress you are going through. One time I remember that my son lasted about half way through the mass and then decided he had couldn't sit through any more of it and so he got up and we had to walk out in front of the whole congregation. The priest didn't understand our situation and he just said well I guess he doesn't want to stay for the rest of the mass. We were mortified at his lack of compassion and left the church feeling very sad and upset. The only mass he will sit through now is a funeral mass that he has no choice to attend. May God bless us all and our special children and help us get through a very difficult life.

Jody

This was beautiful Cathy. You write from the heart.
We had an "is he ok?" moment happen on our driveway this week, Stimmy man loudly vocalizing doing the butt-kick dance at the end of our driveway. I'm trying to give him a little space so I'm watching from inside the house. He knows to stay "on the driveway, front yard, backyard or in the house." I see Helpful Helen walking the neighborhood on the other side sidewalk. She'll ignore him and keep walking. Then she's at our driveway talking to him. I rush out "calmly." Is he OK? Yes. Except, HH, you have now crossed the invisible barrier and he wants to go with you. All I can come up with on the spot makes me laugh now, "Yes, he's ok. Staffing crisis. Off you go, now." I'm blocking her from approaching him with my body. Thinking wtaf, lady! You think he's harmless because he's obviously disabled. Do you usually approach men you don't know and ask them if they're ok? She walked away, thankfully. I spent 20 minutes reestablishing the boundaries wondering if our local cops will show up. Actually hoping they do. Maybe they'll take him for a walk.

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