It’s been a strange few weeks here at the Ashline household.
Andrew’s been fluctuating between intense frustration and euphoric joy and none of us are getting a full night’s sleep due to his erratic night schedule.
Mikey is operating on fumes and I’m close behind.
Andrew has started stimming a lot, squinting his eyes, laughing hysterically to himself, and more than ever, it feels like he’s in another world, and we aren’t invited.
It’s hard, you know?
I suppose that’s why most of my posts have been so melancholy lately. Because when he gets like this, it’s hard not to give in to the gray that washes over the days.
And sometimes, the little things feel like such big things.
Yesterday we took the boys to the park before evening mass, and the park we chose is next to a cute little elementary school. Andrew became fixated on the yellow slides beyond the locked gate, and wanted nothing to do with the playground at the park. As he began to unravel, I tried, in vain, to employ some of the parent training tools we’ve become so fluent at over the years, but there isn’t a manual in the world that can teach you unwavering patience.
He was hell bent on that yellow slide.
“wellow. yewow. wewowowewoweweyewoweyeyeyeyoweyewow.”
And I was hell bent on us having a good time.
“Andrew, look over here! How about over there! Let’s try that or this or anything else that may distract you and salvage what is left of this very stressful family outing.”
And that’s the problem.
With families like ours, what sounds like a wonderful idea (in this case, a sunny afternoon spent frolicking at a local park) can quickly turn into an epic failure. The event in and of itself isn’t enough to break you. Plenty of parents deal with the antics of their children, special needs or not.
No. It’s more like each isolated event is a constant reminder, akin to Chinese water torture, that a good idea isn’t enough. That in your family, even the best laid plans can become monumental disasters and that it’s usually out of your control. You are at the whim of a force that is often invisible to others around you.
It kinda bites.
We’ve been at this long enough to know that the answer lies in our flexibility and willingness to modify our plans, so we packed up, dried the tears of disappointment on Ian’s face, and tried to salvage the rest of our evening.
It’s what we know, it’s all we know, but I don’t think that that makes it any easier as we watch one child struggle to express himself while the other struggles to forgive him for being so needy.
We did end up going to church, where Andrew found a few intermittent moments of peace, but he never fully recovered from the obsession of that yellow slide. The yellow slide became the blue car which became the purple one parked next to the white one which became an onslaught of stuff he wanted that he couldn’t have.
I found Mikey trying to console and decipher Andrew’s mumbles and approximations in the bathroom when we got home and I wanted to share with you a snippet of what it’s like watching our son struggle so hard to get a simple thought across.
Some of you who read this blog will be able to relate.
Some of you won’t.
But either way, thank you for watching.
It’s one more way to let you into our world, into Andrew’s world.
So that maybe we can make it a gentler, more compassionate and patient one.
10 Replies to “Parenting a non-verbal child can suck sometimes.”
Hi Jo, I am sorry that it can be so much to handle. I wish love = unwavering patience – we’d all do so much better. I hope there is a season where the melancholy is lifted soon. <3 Hugs.
PS – I wanted to watch the video to get some insight, but it is marked private.
Thank you for your comment Anna.
I fixed the setting on the video and you should be able to view it now!
I almost started clapping at the end! Yeah!
Trips like these to the park…make us appreciate what any ‘typical’ family would just call a Saturday. Do you know what I mean?
Oh Jo…this was a beautifully written post and I can’t even begin to understand what you and your family go through everyday. But all I can think is how lucky Andrew is to have a wonderful, loving family like yours who do their best everyday to love him and give him what he needs. God couldn’t have chosen a better family for him!
I started to cry when I watched the video. It broke my heart to see your son trying so hard to tell his daddy what he wanted. To see how calm your husband remained as he tried so hard to figure out what your son wanted was so sweet.
It has to be so hard on everyone in your family. I just wish I could give you a big hug!
You are your husband are very special parents and while it may seem very trying at times, you are doing beautifully at raising your boys!
Reminds me so much of my little guy… We have had days like this too. Such euphoria when we finally figure out what they are trying to communicate. You and Mikey are doing a wonderful job!!
Aww! I wanted to cheer at the end. Even the look of relief on Mikey’s face was enough to make me cry. Your unwavering patience is something to be admired for. I truly don’t know how you do it….all of you….Mike and Ian included. Thank you for sharing this video and continuing to let us be apart of your world. You are an inpiration and I could learn alot about patience from you!!
Your son is an mazing little boy and I feel you are doing your best as a parent. The video of him and his dad was very touching to watch. My son has Asperger’s and the saddest part is our own family is not at all sensitive to my son’s disability and is actually critical of the way I parent him. Parenting is not an easy job and is much harder for parents like us. Stay positive and know your son loves you very much.
I also wrote a blog post about my experience with my son. Please feel free to read when you get a chance.
Tears…heart-wrenching and beautiful at the same time. Such love and patience–from both of them.
Your son is so beautiful. I have a 10 year old son just like him in terms of his commuincation issues. He also has a (big) little sister so I can relate to you alot. I just recently found your blog and am really enjoying it. Love, Olive