After things settled down late Sunday evening, I finally had a chance to look for those old blogs. Some were re-runs of my AofA posts, but a few were brand new. I had hoped to write more for AO, but lack of time, my family's growing needs, and other commitments kept me from adding any more.
While walking down memory lane, I reread the few entries that I have on the site. I wanted to share one of them today here. I obviously needed to get a few thoughts out of my head when I wrote it. I don't remember writing it, but the title I chose certainly got my attention!
Here it is again (and edited just a tad).
While I try to be upbeat and hopeful, there are days that I just can't keep smiling. Ronan looks so normal at first glance. Strangers don't understand why he behaves the way he does when they first meet him. It's painful in those moments to either try to explain things to them or to choose to move faster and farther away from them.
I struggle to envision Ronan as typically-abled on my own bad days. Sometimes I just want to blow off my responsibilities as a Mom, but I know that I could never do that. I have five kids, and they all need me in some special way. Ronan is my most needy on most days as he has many medical issues. Those include mito disease, autism and cognitive delays. As I try to manage his needs, as well as my other children's, my life includes weeks that are tornado-like. Those weeks should have high alert statuses to warn others what to expect.
Ronan walks through his life waiting for directions as he's told to do many of tasks each day. My other children dance around their brother as he moves at a slower pace. He tries to get out of their way while they do their chores or finish their school work they do on their own. Ronan looks for activities that keep himself happy and occupied (and away from me as I'm constantly redirecting him). My children thrive on heartfelt encouragement and their excitement for life has struck a new interest in Ronan. He has started to look for approval at certain parts of his day which is so rewarding. He seeks more eye contact when he signs a request for snack. He's even trying to fingerspell some of his words! He waits for verbal praise when he is able to say a word since it has required so much oral-motor planning on his part. Ronan's patience level is much lower than my other children's, but he works oh, so hard at that when he really, really, really, really wants his movie on right now and please, please, please he lets me know as he signs for me to turn it on quickly.
Ronan has also had a new surge of awareness to our world and in his own family. He's seeking me out more even though I'm the one that makes him do so much work like his ABA and speech therapy homework and activities. I don't mind this seeking Ronan is doing since it includes hugs and cuddle time. I cherish these affectionate moments when Ronan puts down a toy that he's become attached to, walks directly to where I am, and puts his arms up for a hug. I immediately embrace him because for years any type of hug that I attempted to give him would result in him pushing me away. The sensory issues were far too severe to allow for proper hugs. These hugs that I'm greeted by now are treasures. The hug isn't a 'quick thankyouverymuch; hug; now, he won't let go of me. All of a sudden, the quick hug I'm expecting turns into a crouched down, sitting on the floor still holding Ronan in my arms and now nesting in my lap hug. While he sits, we rock slowly back and forth in silence and let the world wait for us.
Another surge of awareness is happening too. We increased some of the therapy and educational opportunities for Ronan. Just today, after years of hoping and wondering and waiting, another new skill emerged. Ronan's private speech therapist has been working with Ronan for only 3 months and has done more in those few months than other specialists have done ever. Our new therapist got Ronan to blow through a straw! I witnessed that magical moment today as my child sat and waited patiently and willingly to do just what Miss Erin was showing him to do. For Ronan to accomplish this major speech goal of blowing through a straw in order to make something else move (a cotton ball) will certainly open more doors for him. His vocabulary of 4 words last month also grew today at therapy when Ronan identified a ball by saying ball for Miss Erin. He now have five words!
While most of Ronan's days are full of struggle just to do the simple things like getting in his chair without falling over, or scooping his food without it spilling out of the spoon, Ronan is victorious in some manner. Each day he faces more challenges than I will ever know. Each day he teaches me and gives me a chance to learn more and do better than yesterday. He is helping me to overcome the pain of what if things had been different, why did this happen to you and why did it happen to me too. I may just want to blow things off but that little hero wrapped up in a seven year old's body keeps pushing me along. I can't wait to find out what we'll learn together tomorrow.
What's that expression? The more things change, the more they stay the same. Yeah, that one. After reading that entry, I can see that some things are exactly the same - Ronan is still in therapy, he still requires loads of redirection, and he still has a very limited verbal vocabulary. As much as I'd love to be able to share that Ronan is now eons ahead of where he was when I wrote that piece in 2010, he's not.
His delayed speech is still delayed.
His attention span is still short.
His needs are still great.
Those needs. The intensity of them. The struggles he faces. The strain of helping him through the struggles. That's all still here. But so is my dedication to Ronan.
Despite the lows, we do experience some highs. Like at the park today, Ronan spent a few minutes kicking a soccer ball. When he'd usually rather sit on a park bench and count down the minutes until we leave, he got up and played. It lasted only a few minutes, but he was active and engaged, and we were delighted to witness it.
Sometimes life does blow. But other times, like yesterday, when the day was good and when we watched things come together, we saw moments of determination, of clarity, and of hope. I love those kinds of moments. They can be few and far between, but they are always a good reminder to never, ever give up.