The Ups and Downs of Non-Verbal Autism
Posted by Cathy Jameson
From my personal notes, November 15, 2010: Ronan said ball today. He was watching a video of School House Rock and there was a ball on the screen. The result was “bahhhwl” while he was also signing it. Hello pre-linguistic boy whom I love so much!
Ronan signed and told Ball another time that week. He raised his little arms, looked at me, and signed a perfect ‘ball’ sign. The look he gave me filled me with such gratitude. Curious as to whether I had documented further verbal successes, I looked for further entries. November 1, 2009: We know Ronan can speak. It tries to teach him that he can. That’s the hard part. We heard about prompts being used to take control of the class (love the ABA) and wahoo! It works.
Six weeks later we heard even more verbal kindness. 12/17/2009: Ronan said go ahead and be done this week. He’s working on Yes and Rainbow and Film and Daddy !!
Back then, I had used flash cards with Ronan to teach him to read. I was sure he could read, but how could he tell us that he understood everything that was written when he couldn’t speak? Desperate to hear him utter words, I continued to pray for language. I focused all my energies on finding some form of communication, any form that would be effective, and started labeling things around the house – some labels had pictures above the word, others had no pictures. It was a slow process, but his hard work paid off.
March 16, 2010: Ronan read the letter M today and said / M / nice and loud. In addition to learning to read recently, he has learned some of the letters and words as well.
In the summer of 2014 I noticed the following: He was back at mass (and said amen!).
Those weren’t his last words. He would say a few more.
Aug 22, 2014: With encouragement from the super siblings, Ronan said a few more times tonight. Not clear as the day, but the approach was functional, was made with full eye contact and was followed by some belly laughs. When Ronan said again, Big Sis said his favorite line of Cars 2. Every verbal request he made was granted over and over again. After today’s roller coaster ride of emotion watching my newsfeed explode with the CDC whistleblower messages, I kept hearing Ronan’s sweet, sweet voice.
Ronan is a foodie, so every time he ate something tasty, he would say “tasty” pretty quickly and effortlessly to show us how much he liked the food. He had had that word in his head for a while.
April 3, 2012: So Ronan was sitting with me at a tea party, feeding me my ‘food’, making sure I had ‘eaten’ it, then looking at me and waiting for me to say “yummy” … and then he also said “delicious”.
October 15, 2015: Ronan did well in mass tonight, even though he was on my back most of the time (piggybacking – even when I was waiting for communion) … he said beautifully and loudly YUM * when * I received communion . He wouldn’t stop saying yummy until I said it, which was halfway to our bank! It was just a touch a few minutes ago, but he made it to the end of the show, which means we all made it to the end of the show. Bringing Ronan to church can be tense. But we smile, exhale a big sigh of relief, and remember to thank God for amazing church moments, like those happening tonight.
He doesn’t say much anymore. When we now ask Ronan to say delicious, we barely hear a whisper of the last sound / m /. That’s it. It’s frustrating for Ronan. It makes the siblings sad. Ronan’s silence is a constant reminder that parts of life with regressive autism are not what we expected. Receiving the kind of mail we got for two weeks was another memory.
With Ronan’s delay over the years, I knew the day would come when we would officially become our son’s guardian. Of course, I wasn’t surprised when I received a mail about it last year. I paused before opening these envelopes, knowing that they would trigger some emotion. As this 18th birthday approached, one of the official letters we had received contained a court date. As long as we had all the necessary papers, we were ready. Gathering forms, evaluations, and tons of documents – that was part of the long, arduous legal process that I knew was necessary, but I didn’t think I would really be ready for it.
As in the past, I made a note of where I was in life. I sat at our dining table, surrounded by large folders, file folders, Excel spreadsheets, doctor’s letters, and anything else I could think of to support our cause. Oct 18, 2020: This doesn’t include any of his IFSP or IEP documents, add 2 more 4 inch folders for that. But do you think I have enough files to prove that Ronan is disabled? I have more files to print and share. What an emotional day I sift through every piece of paper. Even Willem said it was overwhelming to have to do.
Well, buddy, that was it.
Thank goodness I was reasonably organized to keep these files (and copies of each) in all of Ronan’s Great Big Books of Everything! They certainly came in handy today and will be the tools we need to continue helping Ronan. Thanks also to a sweet friend who sweetened my day with these flowers when I was just about to work on this project. Little did she know I was about to work on a task that I had been utterly scared of for a long time. But I did it. And I feel much better prepared for the upcoming meeting.
Long before I sat down at the dining table to make sure I had everything I needed, I had searched for answers to questions about guardianship that I never thought I would have to ask. I called and spoke to several lawyers who gave me more time than I thought to understand everything. On that day, the clerk even gave me and my husband time that we didn’t know we would need. After we raised our right hand in front of her to officially promise to take care of our adult son with special needs, she left the room for a few minutes. I don’t know if she really had to go over to get something she told us or if she just said that to us to give us a few minutes to cry.
The day was emotional and we cried.
As I buried my face in my husband’s chest, I cried tears that had welled up. Those he had shed showed me how difficult it was for him too. While I do most of the paperwork, he’s totally invested in everything else we need to do for our son. We share everything – the ups and downs and do what we have to do for Ronan, even if it overwhelms us. When more mail came in last week with more memories of what Ronan still can’t, I was a little overwhelmed again.
The letter came from an agency we were in contact with immediately after the guardianship process was over. By the time I was helping adults with intellectual disabilities, I had already gone through their pile of paperwork and lengthy screening assessment. I had successfully shared files and got some of Ronan’s doctors to come up with supporting evidence as well. I was told it could take approximately 4 months to approve a response to the services we requested. After 6 months had passed, I knew something was wrong. I’ve been told that COVID has had a major impact on your department and delays are likely. But 7 months, then 8 months, then 10 months with no response seemed too long.
Her lack of communication, like Ronan’s, made things difficult.
It reminded me of another time when I had to talk about life louder than I ever expected. June 5, 2013: Who am I? For real. I am not who I was ten years ago.
Today I yelled at an employee of a government agency in an email about how ridiculous, time consuming and archaic their system is, and how their stupidity denies Ronan his rights. I went to another politician’s office and asked what he would do about rising autism rates. I helped a new mom understand the dangers of vaccines. I supported a local group’s efforts to provide services to families with special needs. I had an insightful conversation with a dear friend and another conversation with a lovely cousin of mine. I also saw my kids get super excited that mom was giving them large pieces of cake as a snack.
It’s not so much who I have become, but rather having the courage to stand up for what needs to be done. And that I can still be a really cool mom.
Maybe one day I’ll lose this cool mom status, but I hope I’ll always be able to stand up for Ronan and my family. Be it fighting for services or fighting for prescription redemption, or demanding that Ronan jump off a waiting list he should never have been placed on … like Ronan, I had to learn to communicate his needs effectively. When I send my message effectively, better things will happen to him. When he’s better, we are better too.
Sometimes things aren’t that great. We remind ourselves once again to look for helpers.
November 30, 2021: (after a trip to the emergency room with a recent injury) Ronan became scared. Something definitely hurt when we rolled him on his side, but he couldn’t say that other than the frightened look in his eyes … he grabbed my hand and didn’t let go of it. The young man then worked faster and made sure we were both very well looked after, encouraging Ronan and doing everything to comfort him the whole time.
As we left, I thanked him and the other medical staff who came in so quickly and only showed sympathy for my son. Ronan doesn’t rarely get this kind of care, but it’s always valued.
Happy helpers, including the strangers we met on this trip, keep us from falling apart. I can’t always put into words what these people and their kind gestures mean. But I can tell others about our positive experiences. I like to admit that some of it is difficult, but I make it a point to speak of the grateful moments too. I do this in the hope that others can also be filled with hope and happiness.
Cathy Jameson is co-editor for Age of Autism.
