Step-by-Step
By Cathy Jameson
I had a meeting last week with some of Ronan’s people who help coordinate some of his services. When we coordinated a time to go over everything, one of the gals made sure to mention that it could be a very long meeting. It was. The agenda included a review of what Ronan can do. It also included what he can’t do. I had to answer a slew of questions that covered life skill, daily living skills, and safety skills. As the parent of a special needs child those kinds of meetings aren’t unusual, but they are never fun.
Friday afternoon, I was asked question after question after question. Here we go, I thought. Time to see how delayed he is according to their scale. Half-way through the meeting, it seemed like the theme was Ronan Can’t ____ (fill in the blank with any number of skills he absolutely cannot do) Independently.
But, because it takes several steps to accomplish a particular skill, Ronan got some credit for being able to do some of an activity:
Can Ronan take a shower unassisted? No.
Can Ronan identify hot and cold? No.
Can Ronan turn on the water? Yes!
Kudos to the kiddo for knowing step 1.
Can Ronan make a meal? No.
Can Ronan set the table? No.
Can Ronan indicate that he is hungry? Yes!
And he tells us that he’s hungry through his signs, by taking a bowl (or 7 when he’s really, really hungry), or by taking out the food that he wants to eat.
Even though it was hard to answer question after question after question, by the end of the meeting I was able to reflect on what Ronan can do. My favorite portion of the intake questionnaire had to do with family: Can Ronan identify his family members? Can he write their names? Can he call on family for help?
Being non-verbal, Ronan may not be able to actually call to them, but he knows we’re all here to help. I see that when his big sister lovingly calls Ronan over to help him begin his bedtime routine. I hear that when his little brother happily changes out a movie for Ronan as soon as one movie ends. I cherish that when I see his two little sisters giggling gleefully out the door as they accompany Ronan on an outing to make sure he will be able to navigate through the community better. Unfortunately, Ronan isn’t completely ready yet to navigate the community on his own. That’s been proven with past wandering attempts that he’s made. I was reminded of those on Friday when safety skills were brought up in the meeting:
Can Ronan plan an outing on his own? No.
Is Ronan aware of danger? No.
Would Ronan be able to call 9-1-1 if he needed assistance during an emergency situation? No.
I didn’t have to share all the details of that particular story with the interviewer, but I did. I shuddered as I recalled how quiet, how dark, and how terrifying that evening was for me and for our family. Since the interviewer works with other families who have children who wander, I then shared that because of the assistance of a wonderful organization in the autism community, I am now better equipped to handle those potential wandering situation. Ronan is still prone to wander, but the locks, the alarms, and the stop signs that we have placed in our home have greatly reduced the potential for Ronan to slip away. Not only that, it’s made our family communicate better with each other about who’s got eyes and ears on Ronan. I never want to burden my other children with the responsibility of keeping their brother safe, but keeping him safe does fall on their shoulders.
Never sure if I’ll dread the kind of information gathering and giving sessions I had on Friday or not, I actually walked away from it feeling mostly positive. Yes, I was reminded of how far Ronan is from independence, but I could also see how far he’s come from the last time I had to answer question after question after question about him. I’d rather not have had to think about some of the setbacks or worry about the life skills that Ronan is lacking. But if I don’t ever talk about them, I’ll have no idea how to address them. If I never address those skills, I may miss a chance to give Ronan an opportunity to accomplish them.
Ronan gets a lot of assistance from several people despite not being able to ask for it. On Friday, I did, too. I didn’t ask for the latest meeting nor for the review of what missing in Ronan’s life, but I was grateful for the chance to have had both. By the end of the meeting, I got to brainstorm what more I could do here at home to help Ronan. We as a family can do a lot to help get him closer to independence, and I know that through hard work we can get a teeny tiny bit closer to that goal. Baby step-by-baby step, we will do all that we can to keep Ronan moving forward.
Cathy Jameson is a Contributing Editor for Age of Autism.
The school used to send an eight-page form home with Cecily every year for me to fill out, "to better plan services for her." I had to choose among five ratings for each of two hundred skills. Things like Can she read novels for pleasure? No. Can she subscribe to a magazine unassisted? No. Does she read magazines? No. Can she write a term paper? No. Can she order items from a catalogue? No. Can she return unwanted items to the store where she bought them? No. Can she organize a party and invite her friends to it? No. Can she book airline tickets? No. Can she take advantage of the recreational opportunities of her community? No. Page after page after page, with NOTHING on them she could do by herself. I filled it out for a few years, and then never heard anything about it again. They threw it in the trash as soon as they got it back. I refused to do it the last year they sent it, and have never seen it again.
Posted by: cia parker | August 15, 2017 at 01:44 PM
These meetings are not fun for my high functioning 26 year old either. It feels to him like they are rubbing his nose in his every failure and weakness. And he forces himself to recall painful humiliating incidents to justify his need for services. The folks at California disability services finally believed him. Social Security Disability just said no and ridiculed him. They see him just as a jerk who is not trying. And when you are high functioning you pick up on what people think of you.
Sorry. Just sounding off.
Posted by: Anna Quandt | August 13, 2017 at 04:28 PM
Cathy-you have a wonderful family and are blessed to know that Ronan's siblings will always be there to support and guide him in all your family situations.
Posted by: Gayle | August 13, 2017 at 03:34 PM