My typical children cannot wait for their birthdays. They love the anticipation and excitement of counting down to their special day. I hang a Happy Birthday banner and place a special table cloth at the dining table when their day has arrived. Ronan’s birthday is no exception to the excitement that fills the house when it’s his birthday celebration time; he just doesn’t always show it. His siblings announce the countdown for his big day which is “just three more days to go, Mommy!!!!” Giddy sisters and a brother jump up and down for Ronan when they see that the banner and table cloth have finally made their appearance. The kids burst with excitement when the presents show up on the table. Ronan usually doesn’t show a great interest in joining the celebration until he realizes the cake on the table is his.
Ronan’s ninth birthday is this week. As each of my children’s birthdays approach I reflect on how long that baby of mine has been alive. I think about how quickly that little bundle grew right before my eyes. I pray that I’ve done the right thing for that child in the years we’ve already logged. I also cherish future thoughts of sharing many more years together. Obviously Ronan’s life and my reflections are drastically different than those of his typical siblings. The typical sibs are just that: typical, able, full of accomplished milestones. Ronan, on the other hand has much still to catch up. His disabilities, his struggles and his needs cause me to pause when I reflect on Ronan’s past. Those milestones he should have sailed through so many years ago stay forefront in my mind—talking, stringing words together, talking in sentences, starting conversations—several of those skills are still being worked on.
I catch myself spending more time thinking about Ronan in the few weeks before his birthday. Some days I cannot believe he is still here with me—he’s had some scary illnesses and situations that I didn’t think he’d pull through. Thankfully the kid is still here, still teaching me lessons in life. I am filled with many thoughts about Ronan that are full of wonder, sheer wonder as I think about who he is and how his life has changed me. Ronan’s made some major leaps the latter part of this year that leave me wide-eyed and jumping for joy. His last six months are full of wows that have forced me to slow down to immediately celebrate Ronan and Ronan’s abilities. I’ve been moved to tears watching him make major communication connections which have opened a new door to learning. We knew Ronan could read when I asked him over three years ago, “Hey, Ronan. Can you read this?” and he could sign his responses to me. I recently shared on AofA that Ronan can write and now look at what Ronan brought home from school one day. He does in fact understand ‘rithmatic facts!
Ronan matched numerals 1-12 correctly in his book.
Number sense can be such an abstract concept, but
Ronan has conquered yet again!
These latest connections fill me with more hope for Ronan and they give me more confidence in myself. After seeing Ronan’s math work that day I shouted whoops of joy, made several phone calls to our family to announce yet another emerging skill. After sharing Ronan’s math picture around the web to friends I cried. I cried tears of joy because that my boy is growing up. I cried tears of regret that I sometimes spend too much time worrying about his past. I also cried tears of relief because I can almost allow myself to see, feel and celebrate Ronan’s here and now. I was caught in a swirl of emotions that day. Thankfully the positive, happy, can-you-believe-it ones stayed present in my mind.
After that math moment I again renewed my commitment to believe in Ronan. I felt us both tiptoe forward, closer to more awareness and cognitive healing. I reminded myself to be surrounded with what I hope is positive and helpful. I also slowed myself down and remembered to look to Ronan to guide me with what he can handle and manage. If I can remember to let him set the pace I know we can both celebrate another moment of Ronan Can Do.
A little over a month ago I asked Ronan a big question I’ve started to ask him, “Hey, Ronan. Can you ____?” We were in my office on a Friday night. I was supposed to be getting the kids ready for bedtime, but I was aching to write a story. Ronan was antsy and wouldn’t stay with his own activity. I’ll sometimes let him youtube with me as long as he doesn’t get too close to the computer screen or try to shut the computer off (our monitor now has permanent pen marks where Ronan tried to trace letters on a word document I’d left open; and, buttons are buttons that have to be pushed). That evening Ronan kept coming back to me gently shoving my wheeled-office chair away from the desk. It was utter chaos as my husband was away for a business trip and my typical kids were doing everything but getting their jammies on.
The kids took full advantage of me being exhausted while I tried to sneak away from their bedtime routine. I kept trying to shoo Ronan away too, but he kept coming back signing “computer.” After 3 or 4 more interruptions, instead of the two of us butting heads I gave in and said, “Ronan, do you want to watch a movie?” I love how Ronan assures me he’s listening. I also love how he’s able to tell me that I’m doing a good job communicating with him. He smiled his goofy smile and signed yes. I moved the keyboard in front of Ronan and said, “If you want to watch a movie, you need to type your words. Ronan, can you type?” Before he could sign anything I opened up a new word document, increased the font size, turned the caps lock on and watched Ronan spell what he wanted to watch. How floored was I to discover that Ronan can type on a keyboard! He successfully typed CAT. His next word was HAT. I immediately switched to youtube and found a favorite “Cat in the Hat” clip. While the movie was playing I raced downstairs to where my other children were and squealed, “Ronan just typed a word! He typed CAT!!!!!” I bounded back to the office computer before the movie clip was over.
Pulling up the word document I asked Ronan, “Hey, can you type something else?” It took a few slow tries in the beginning but Ronan was able to hunt and peck for the right keys. He hit the caps lock key off which slowed down recognition of the letters as they appeared on the screen. Still, Ronan had good accuracy and as always, showed great determination. Ronan looked toward me, signed “b” and “baby” and then went back to the keyboard. I said, “Do you want to watch Baby Einstein? Spell baby.” He typed out:
Hoping to draw more words out I asked Ronan, “You still want to watch it?”
I played a short clip and then reopened the word document again. Ronan had pointed to a green puppet in the youtube sidebar. He signed “yes” when I asked if he wanted to see that video next. As I sounded out green for Ronan to type, he produced this:
My eyes were a bit wet as I tucked my children in that night. If I hadn’t taken a break from what I wanted to do and if I hadn’t asked Ronan if he could type what he wanted would he ever have been willing to show this skill? Plus, would I have ever allowed him to use my computer when in the past he’s shut it down, locked me out of it and scribbled all over the screen? Because I’ve seen my son overcome more struggles than other children will ever have to face, I am thankful that I keep taking chances on Ronan and his abilities.
Since that Friday night Ronan and I have shared more typing and writing moments. He can now type simple, full sentences. He signs, I articulate and sound out his words and he types. This was one of Ronan’s latest typing episodes:
PLAY MOVIE YES
NEW MOVIE YES
I WANT MOVIE
I caught video of Ronan showing me with signs what he wanted while he made vocal attempts and signed his request:
With these recent breakthroughs I have had more reasons lately to look forward with Ronan than to look back. On these good days, I stay truly hopeful and find peace in many of the decisions I have to make for Ronan. Upcoming birthdays like Ronan’s ninth one this week have the potential to be one of those really tough days to get through. Bittersweet, not what I expected, resentful and why bother could easily be words or phrases of how I might have reacted to past birthday. I can’t say I won’t feel those emotions again on Wednesday. Ronan isn’t going to be nine in the truest sense of the word. He still lags so very far behind. He can’t take care of himself and I am surrounded by constant can’t, won’t and doesn’t. Dealing with both kinds of days, good and bad, and with the many emotions that flood each type of day is truly overwhelming. Since I’m a true believer in finding something hopeful I pray that I will truly be able to celebrate Ronan and where he is his life right now.
One of the last sentences Ronan typed earlier this week was “I WANT BABY” for one of those Baby Einstein videos he still likes to watch. Seeing that sentence hover on a clean white word document reminded me of how sad I can still get when I think of Ronan as that perfect little baby he was. I too want baby, my baby, that baby I carried and then lost to delays, silence and autism. I crave time that went by too fast and time I can never get back. Ronan’s baby days were filled with no thoughts of regression or wandering and being non-verbal. I yearn for how young and carefree I felt as a new mommy never thinking twice about Ronan’s future except that it was going to be happy, easy and wonderful. As much as I’d like to jump into a time machine to change some of what happened to my child, I would want to use that time machine to whisk myself away to Ronan’s future. I can’t wait to see what else this little boy can and will do in life. I’d love to get a sneak peek at myself too to see how I handled everything. I’m sure the two of us will have worked hard to overcome and to celebrate many more moments together.
Knowing that I have to live and relish each moment I face now brings me out of those time machine thoughts. I had that baby of mine nine years ago this week. That baby is a growing boy constantly teaching me that what happened in the past is part of the past. The past does affect the future, but I can be in charge of gently pushing Ronan to keep him going forward. I’ll always be ready to shape and encourage his abilities through one successful and believable moment at a time.
Cathy Jameson is a Contributing Editor for Age of Autism.