Ronan needs full assistance for many of his daily living skills. It makes for a lot of work on my part, but I do love that he understands more prompts this year compared to last year. Baby step by baby step, these skills can help lead to more independence. The latest one we have been working on, “Time to get your shower.” He did it! I just need to be one step ahead of him next time to help with his pajamas because, boy, was he ready for his shower right after he got up this morning. Go, Ronan!
I shared that picture and that note above on one of my social media accounts last week. I posted it not just because it was a pretty cool photo if I do say so myself, but because it was so perfectly us. If I had a file for photos such as that one, I’d name the file This Is Autism.
Thinking about that photo and why I took it – because, in our house, that really is autism, I remembered a few more images that also fall into that category. They include the siblings, the work it takes to keep Ronan safe, loads of emotions and a brief story about why I wanted to freeze that moment in time. The severity of autism that Ronan displays is so often downplayed in the news and on feel-good TV shows. Because of the misrepresentation and limited exposure of non-verbal regressive autism, people don’t realize how difficult life can be for the child with that diagnosis. Whey won’t ever understand just how draining it can be on the caretaker either. It is tiring. It is frustrating. It is why some parents are afraid to die. With the autism rate at 1 in 40 and rising, who will be left to take care of our child as well as we have? Who??
The autism we live may not be what the media or the public believes autism to be, but it’s our story, our reality, our truth. Care to see what that looks like and how much more complicated it can be? Continue reading. If you do continue to read, please keep in mind that as I share these images, they are posted in the hopes of educating others. Life with autism has ups. It has downs. It can be frustrating and loud and confusing. Thankfully, those living life with autism bring moments that are also rewarding. No matter what has happened as a result of autism, I always remember afterward to find the joy. The main subject of my photos reminds me to do that daily.
Ronan is completely dependent on us to feed him, to clothe him, and to protect him 24 hours a day and 7 days a week. He’s been that way for a long time. He very well could remain that way indefinitely. With the ups, and even with the downs, it’s an honor to serve him through all that life with autism has brought to our little family.
With that, in no particular order, this is our autism…
She counted 1, 2, 3 and then went under. Ronan got down with her for at 1 and 2 and then....ha ha ha! He only pretended to go under. She tried two more times to get him to go under water. Nope. Not gonna do it. We laughed and laughed. I just love them so much.
It's been a long (but good!) week for us. We have had So. Much. Going. On. I'm glad we had a stay-home day planned today though. He's been sitting like this for over 30 minutes. Quiet, eyes closed, peeking every now and then at his beloved black fish images, and just being still. Rest all you need, my little hubba hubba. We have all day to be quiet and still.
Waiting for this little snuggly pie to wake up after a rash of seizures last night. Those seizures scare the ever living poo out of me, but we push through them always keeping hopeful that whatever happens today will be better.
Today's afternoon plans, which included a fun day out, got cancelled. Why? Because autism (+ mito + seizures + whatever is bothering Ronan) sucks. He's not happy today. He could at least communicate that something was making him sad.
My beautiful son, I'm sad, too. 💔
Prayers, please? Thank you.
Headache? Migraine? Seizure activity coming? Not sure. He can't tell us. But that black fish - when times get tough for Ronan, that fish is never far from his side. Praying he's just having a happy, thoughtful moment about that silly black fish and that today is one of his best days yet.
He brought the black fish to the beach. He wouldn’t let us leave it in the car even after explaining that it would be there when we were done playing in the water. All was going well until it flew out of his hands in the windy wind. Headed straight for the dunes, I’ve never run so fast in my life to go catch it.
Ronan made it entirely through my niece’s remembrance Mass on Friday. He made it most of the way through the Saturday Vigil Mass (pictured here waiting patiently in the narthex like a rock star). Sunday, Ronan had seizures. I'm sure it had to do with all the fun we're having and how late we've been staying up. In order to reduce his body burden, we rearranged the Christmas schedule a tad. I went to a Vigil Mass last night while the rest of the family went this afternoon. I could be all sorts of doom and gloomy about missing that time with family, but Rone and I got to stay at my sister's and help get a head start on the dinner prep. While he stayed cool and relaxed, I made sure the turkey, sweet potatoes and other nom noms were doing their thing. I remembered to put the kids' kid wine (sparkling grape juice) that my brother-in-law got them in the fridge, and I even had time to clean up the kitchen and one bathroom. After a short break with a warm cuppa coffee, I'm ready to get the tables set. Hurry home, family. Our Christmas feast is going to be great!
Brown-headed brothers. They were mistaken for twins today. But almost two years and many, many, many milestones separate them.
Even so, each brother leads the other in a unique way. The older's life has shaped the younger in ways we never imagined. The younger knows this and understands that sacrifices have been made. Knowing that hasn't made things any easier. It's given the younger a great amount of appreciation for life though. That and a lot of extra responsibility! Seeing him work with his big brother so selflessly and so lovingly again today tells me that he doesn't seem to mind all that extra responsibility.
Lead on, my beautiful boys. I'm so proud of you.
“I was in class and we were playing a game where we had to go up to the board and write the answer to a question the teacher asked. It wasn’t my turn, so I was sitting in my chair when another kid walked past me on his way up to the board. He came up to me and pushed me hard. He didn’t say anything, just pushed me. After he wrote the answer on the board, he started to walk back to his seat. He walked near me again on his way back, so I asked him, ‘Why did you do that?’ He didn’t say why he shoved me but he said, ‘Well at least I don’t have a brother with autism.’ https://www.ageofautism.com/2017/04/my-brother-has-autism-a-world-autism-day-reality-check.html Mom, why would he say something like that?”
Not ironic that he chose this page tonight after a rash of seizure activity. I bet it hurts, buddy, and I'm so very sorry. Love you, my beautiful boy. Get some good sleep.
See that girl in the bright yellow shirt? She loves that brother of hers something fierce. After about an hour of watching other kids go down the slide, Ronan decided he wanted to go down it also. It took a few attempts to get Ronan up the stairs because fear took over, but that wasn't going to stop his little sister from helping. She did that by holding Ronan's hand slowing herself to match his incredibly slow down-the-slide pace Ronan was keeping - he. was. terrified. but kept signing 'again slide again slide' each time he bravely went down. So they kept going. All the kids joined in at one time and smiled the biggest smiles. Another kid who'd seen Ronan earlier joined in, too, and said, "Come on, bro. You can do it!" It was a sight to see!
Some will see this as an annoyance - teenaged kid drops clothing on the floor and leaves it there. I see it as a win. Years ago when my typical kids were toilet training, they'd peel off all their clothes right before they felt the urge to use the bathroom. Ronan is almost there. He's been taking off his clothes after a big pee (in his diaper) indicating he needs a diaper change. Next? Well, besides getting the kid dressed again, I'm hoping and praying he wants to take his bathroom business in the bathroom.
Lookee what Ronan typed out with assistance from his little sister last week!!! He signed diaper but it was all sorts of awkward, and we couldn’t understand him. I said, “Buddy, can you please type it?” He could! He did! Then he signed change, so we asked him if he could type it, too. He could! He did! Then he added please. Diaper change please. You got it!
Things he'd rather do than go to PT: rake leaves with a snow shovel.
Fear not! With some help from our people, he's did make it to therapy.
Transitions to/from therapy can be disastrous. But look at Ronan walking into therapy like a boss with little sister. She had the day off from school today and could've stayed home and played. But she opted to go with Ronan in case he needed help. All the feels. Every single one of them.
I was hoping for another few quiet minutes to myself but not because the kiddo is overheated and wiped out from a simple walk down the street. Thanks for nothing, mito dysfunction. You stink.
Ronan won’t allow the seatbelt warning to go on his seatbelt, so we keep it on the floorboard instead. We clued in long ago, but here’s a little reminder for others: autism is medical. Seizures are not uncommon and often do go hand-in-hand with the diagnosis.
You know what I don't like? I don't like it when my little boy is in pain and cannot tell me. Do you know what I do like? I do like that Ronan has figured out how to relieve some of the mysterious pain by using the back massager as a foot roller. Lord, please help Ronan's pain go away. Amen.
Silent Sunday. Ronan was up at 2:30 am. For the day.
We are on tip toes now while he sleeps. Hug your babies.
Not an easy task to hike with a kiddo like this, especially when the week before Ronan had a seizure while on Daddy’s shoulders, but a Daddy does what he must for his little boy.
I love that my friends bravely use social media to remind friends and family why many of us cannot and will not embrace autism this month or ever. Here's my contribution.
Well, for a few reasons, including reason #3011.
Slow mornings. Everyone has them every once in a while. When you have multiple slow mornings several days in a row, your mama tries not to worry. Too much. But she can’t help it. So she worries.
Some days can be so hard. On this particular day, Ronan would not get out of the car. I wanted him to. I needed him to! One of the sibs had a game, and I wanted so badly to be there. It took loads of encouragement for him to understand and to muster the energy, but after 35 minutes Ronan was finally able to get out of the car. Not every day is easy, but every time Ronan can be successful, we happily take it as a win.
It's taking twice as long to prep his food and more than twice as long for him to eat it. (Thank you, dysphagia and aspirating. P.S. I hate you.) Mondays are hard anyway but can be even harder for this sweet kiddo as he has therapy right after breakfast which I now can't rush. It took a tiny bit of extra encouragement for him to get to the door after he was done eating and for me to sing one of his fave songs a few times to keep him going once he got outside. Go, Rone! You got this, Buddy.
Who hates mornings? This girl!! Who loves quiet morning snuggles with this kid? This girl.
Every day this week we've gotten some quiet time to just sit and be. It's beautiful how his entire body relaxes when he rests his head on my shoulder. It's been a little uncomfortable though - I'm sitting on the edge of the tub holding and rocking an 85 pound lumpa love up to 20 minutes before he's ready for his shower! But it's all worth it.
Enjoy your day, and get an extra snuggle from the ones you love.
Cathy Jameson is a Contributing Editor for Age of Autism.