From my personal notes, November 15, 2010: Ronan said ball today. He was watching a School House Rock video, and a ball was on the screen. Out came, "bahhhwl" while he signed it, too. Hello, pre-verbal boy that I love so much!
Ronan signed and said ball another time that same week. Lifting his little arms up, he looked at me and signed a perfect ‘ball’ sign. The look he gave me filled me with such gratitude. Curious if I’d documented any other verbal successes, I searched for more entries. November 1, 2009: We know Ronan can talk. It's trying to get him to know he can do it. That is the hard part. We've heard about using prompts to gain instructional control (love that ABA), and wahoo! It's working.
Six weeks later, we heard more verbal goodness. Dec 17, 2009: Ronan said go and all done this week. He's working on yes and rainbow and movie and Daddy!!
I’d been using flashcards with Ronan to teach him to read back then. I was confident he could read, but how could he tell us he comprehended anything written if he couldn’t speak? Desperate to hear him verbalize words, I kept praying for speech. Focusing all of my energy on finding a form of communication, any form that would be effective, we’d begun to label things in the house – some labels had images above the word, some labels had no images. It was a slow process, but hard work on his part paid off.
March 16, 2010: Ronan read the letter M today and said /M/ nice and loudly. Not only did he learn to read recently, he learned to speak some of the letters and words. <insert beaming Mommy smile here>
During the summer of 2014, I’d noted this: He sat through Mass again (and said Amen!).
Those were not his last words. He’d go on to say a few more.
Aug. 22, 2014: With encouragement from the super sibs Ronan said again a couple of times tonight. Not clear as day but the approximation was functional, made with full eye contact and was followed by some belly laughs. When Ronan said again, Big sis said his favorite Cars 2 line. Every verbal request he made was granted again and again and again. After today's roller coaster ride of emotions watching my news feed blow up with the CDC's whistleblower news I needed to hear Ronan's sweet, sweet voice again and again and again.
Ronan is a foodie, so whenever he'd eat something delicious he'd quite quickly and effortlessly say 'yum' to show us how much he was enjoying the food. He’d had that word down pat for some time already.
April 3, 2012: So, Ronan sat with me for a tea party, fed me my 'food', made sure I 'ate' it, then looked at me and waited for me to say "yum"...and then he, too, said "yum."
Oct. 15, 2015: Ronan did well at Mass tonight, although he was on my back for most of it (piggy back - including when I was line for communion)… he said nice and loudly YUM *as* I received communion. He wouldn’t stop saying yum until I said it, which was half way back to our pew! It was touch and go for a few minutes before, but he made it through to the end of Mass which means we all made it to the end of Mass. Taking Ronan to church can be tense. But we smile, breathe a big sigh of relief, and we remember to thank God for amazing church moments, like tonight's, when they happen.
He doesn’t say anything much anymore. When we ask Ronan to say yum now, we hear barely a whisper of the last sound /m/. That’s it. It’s frustrating for Ronan. It saddens the siblings. Ronan’s silence is a constant reminder that parts of life with regressive autism are not what we expected. Getting the kind of mail we got two weeks was another reminder.
With how delayed Ronan is, and has been over the years, I knew a day would come that we'd officially become our son's guardian. I was, of course, not surprised when I received mail leading up to that last year. I would pause before I opened those envelopes knowing that they would stir some emotions. As that 18th birthday approached, one of the official letters we’d received included a court date. As far as having all of the necessary paperwork, we were ready. Collecting forms, evaluations, and loads of documentation - it was part of the long, arduous legal process that I knew was necessary but one that I didn’t think I’d truly be ready for.
As I’ve done in the past, I made note of where I was in life at that moment. I was sitting at our dining room table surrounded by large binders, file folders, excel spreadsheets, doctor’s notes, and anything that I could think of that would help support our cause. October 18, 2020: This doesn’t include any of his IFSP or IEP documents, add 2 more 4” binders for that. But do you think I have enough files to prove that Ronan is disabled? I still have more files I can print and provide. What an emotional day going through each piece of paper. Even Willem said it would be overwhelming to have to do that.
Well, buddy, it was.
Thanking God that I was somewhat organized in keeping these files (and copies of each) in all of Ronan’s Great Big Books of Everything! They certainly did come in handy today and will be the tools we need to continue to help Ronan. Thanks also to a sweet friend who brightened my day with those flowers just as I was about to work on this project. She had no idea I was about to work on a task I was absolutely dreading for a long time. But I did it. And I feel much more prepared for that upcoming meeting.
Long before I sat down at the dining room table to make sure I had everything we’d need, I’d searched for answers to questions about guardianship that I never thought I’d have to ask. I called and spoke to several advocates who gave me more time than I thought I needed to understand everything. On the day of, even the Clerk of Court gave me and my husband time we didn’t realize we’d need. After we raised our right hand in front of her, to officially promise to care for our adult son with special needs, she left the room for a few minutes afterward. I don’t know if she truly needed to walk over to grab something like she told us she was doing, or if she just said that to us to give us a few minutes to cry.
The day was emotional, and we did cry.
As I buried my face in my husband’s chest, I cried tears that had been welling up. The ones he shed showed me just how hard this was on him as well. While I manage most of the paperwork stuff, he’s fully invested in everything else that we need to do for our son. We share everything - the highs and the lows and do what we need to do for Ronan, even when it overwhelms us. So, when more mail came last week that included more reminders of what Ronan still can’t do, it overwhelmed me a bit all over again.
The letter was from an agency we’d been in contact with immediately after the guardianship process ended. Helping adults with intellectual disabilities, I’d already gone through their mountain of paperwork and their lengthy screening evaluation. I’d successfully shared files and gotten some of Ronan’s doctors to provide supporting evidence as well. I was told it could take around 4 months for approval to receive a reply about services we were requesting. Once 6 months had passed, I knew something was wrong. I’d been told that COVID had greatly impacted their department and to expect delays. But going on 7 months, then 8 months, then 10 months of no response seemed too long.
Their lack of communication, like Ronan’s, made things difficult.
It reminded me of another time I had to be more vocal about life than I ever expected to be. June 5, 2013: Who am I? Really. I am not the person I was ten years ago.
Today, I yelled at a state agency worker in an email about how ridiculous, time consuming and archaic their system is and how their stupidity denied Ronan his rights. I walked into another politician's office asking what he's going to do about the rising autism rates. I helped a new mom know the dangers of vaccines. I supported a local group's efforts to provide services for special needs families. I had an enlightening conversation with a dear friend and another conversation with a beautiful cousin of mine. I also watched my kids be super excited that mommy let them have big pieces of cake for snack.
It's not so much who I've become but that I have the guts to stand up for what needs to be done. And that I can still be a really cool mom.
I may someday lose that status of being a cool mom, but I will hope that I will always be able to stand up for Ronan and for my family. Be it fighting for services, or fighting for prescriptions to be filled, or demanding that Ronan jump off a waitlist he never should have been put on…like Ronan, I've had to learn how to communicate his needs effectively. If I am effective in sending my message, better things happen for him. When things are better for him, they are better for us also.
Sometimes, things aren’t great. That’s when we remember once more to look for the helpers.
November 30, 2021: (after a trip to the ER due to a recent injury) Ronan was getting scared. Something was definitely hurting when we rolled him on his side, but he couldn't communicate that beyond the scared look in his eyes...that’s when he reached for my hand and wouldn't let it go. The young guy worked faster then and made sure we were both very well taken care of, encouraging Ronan and doing everything to comfort him the entire time.
As we left, I thanked him and the other medical staff who swooped in so quickly and who offered only compassion toward my son. That sort of care isn’t rare for Ronan to receive, but it is always appreciated.
Happy helpers, including the strangers we’ve met on this journey, keep us from crumbling. I can’t always put into words what those people and their kind gestures mean. I can, though, tell others about our positive experiences. I readily admit that some of this is hard, but I make a point to also speak of the thankful moments. I do that in the hopes that others, too, can be filled with something hopeful and with something happy.
Cathy Jameson is a Contributing Editor for Age of Autism.