“It’s a fascinating world, that’s for sure.”
Those are the words of one of the staff at the Texas School for the Blind and Visually Impaired. I just so happened upon a bunch of students with their attendants (one-on-one) at the Thinkery Children’s Museum on Wednesday. I’m not making this stuff up y’all. I’m like a magnet to these people. I run into people with disabilities all the time. Instead of pretending not to notice and look away like I used to, now I’m just diving into the awkwardness of it all and sharing N’s story and asking a bazillion questions. Every time I do, I walk away so incredibly blessed.
The Thinkery was M’s reward for being a super duper good big brother at N’s four hour long aerodigestive appointment. I had no idea we’d be there that long. I’m not even going to try and sugar coat it. It was an awful and exhausting appointment. So what better thing to do then let big M burn off some energy at the museum while I zoned out on a nearby bench with N.
We were upstairs playing with the water tables and mechanics when this man comes in with a very obvious special needs little boy. He leads him to the table and puts his hands in the water. Immediately I could tell this kid was so happy. Happy in a way you don’t see kids happy. Happy like every cell in his body was enjoying the experience of the water. Water he cold not see except through the exploration of his hands. Every splash gave him enjoyment. It was very beautiful to watch.
TSBV was doing an end of the year field trip at the museum for the students. Theirs is a residential program for kids many of whom are blind, some also deaf, and this particular group of kids was on the very low functioning end of the special needs spectrum. Within the course of two hours I got to talk to two of the attendants and saw several students exploring the museum in their various unique ways.
The spirit of one of the students reminded me of WALL-E. If you’ve seen the movie, you know that WALL-E is so curious and innocent and friendly and just makes the most of his situation. Well this kid in particular came up to peak into the buggy where N was lounging. The whole while his attendant was signing to him and carefully navigating the boundaries of letting him explore and yet reigning him in so as to protect N.
Suddenly he reached out and grabbed M’s water bottle from the cup holder of the stroller. He was fascinated by it. He looked at it from every possible angle. Tipped it upside down to try and pour the water out. Started pressing the button on it. His curiosity and obsession was very endearing. His mere presence brought a sense of humor and lightness. “He likes containers,” his attendant said. Like I said his personality was like WALL-E and the only thing I could think is, “This kid is not from here. He operates in the spiritual realm.” That’s the moment his attendant told me, “It’s a fascinating world.”
The other attendant caring for the blind boy back at the water table said to me, “I thought he was going to hate it. You never ever know with these kids.”
And that my friends, is what scares the bgebees out of me.
Not ever, ever knowing.
The lack of predictability that comes with having a special needs kiddo astounds me. I think, “Well then I am going to need to come up with – not just a back-up plan – but a plan for every possible scenario.”
“You’re crazy.” you’re thinking. You’re right. I am crazy, but controlling scenarios is in my blood. My biggest fear is finding myself lost and abandoned without a plan. Without a way out. It’s also exhausting to come up with these so-called plans. Really it comes down to depending on the One who has the ultimate plan. I know this, yet I don’t know this.
There was another kiddo who was part of this group who would walk about five steps and then gently yet persistently lay herself down on the floor and intensely chew on her sensory toy. The attendant would slowly, and also very persistently, stimulate her trunk to get her motivated and standing again only to manage another five steps. It was exhausting to watch but it was also refreshing.
I’ve seen parents struggle with their special needs kids outbursts in public several times before. The emotional battle that goes on is almost as intense, or more, than the physical struggle itself. It was different this time. With this little girl, her attendant was emotionally disconnected in way that enabled her to only care for her safety. She was not concerned with people staring (yes, including me) or how it reflected on her. She tempered the little girl beautifully. She was frustrated at points, yes, but overall she remained the steadfast and steady caregiver. Other attendants had to take turns caring for this little girl – an advantage that most parents don’t have. But I mean you guys, I almost wanted to stand up and start clapping and cheering by the time they all made it to the elevator because that was a super big deal. As in, let’s go home we accomplished our goal for the day.
We got to the darn elevator.
I got to thinking. Really how much our society could learn from these kids. We, I, try to cram so many goals and To Dos into my day. If I accomplish nothing, then I feel terrible about myself. Because somewhere along the way I learned to assign my worth to what I can accomplish. What I can get done. What I can do. But what if I’m supposed to enjoy playing at the water table for a little bit? And who cares if I’m obsessed with containers? And what if some days, getting to the elevator is a really big deal? Maybe that’s all I was meant to do for that day. So what if I needed two different people and a whole heck of a lot of patience to help me get there. That’s probably the way God views me some days anyway. He’s the patient parent. I’m the high needs kid.
I also see myself needing be that steadfast person. The caregiver that I’m called to be for N. What if I could take some of the emotion out of it – the futile emotions and anxiety that doesn’t serve me well – and just focus on the single goal set before me?
At the close of this week, I realize yet again that the single goal is for me to do today with N as I depend on God.
I need to sort through the emotion of it all of course. I need to make space to grieve and cry and bang my head against the wall, or my husband’s chest. Then, once I’m finished, I turn it off and forge forward steadfastly.
Because I have to.
Recently there has been a change in N. I’m not sure if it’s because we are approaching that year mark and the baby phase is ending – yet it’s so not ending – but I’m noticing his disability a whole lot more. It’s hard.
If I can just focus on getting to the elevator then maybe I can get to the next thing. Then the next.
I’d like to skip all those steps. I’d like to just click my ruby slippers together and arrive at the destination. But it’s a long journey. And it’s not a journey through Oz where everything is magical with colored horses, and all you have to do is follow the yellow brick road to the Emerald City. It’s a whole different sort of fascinating that I’ve entered into and I can only explain it to you as I struggle day-by-day off the beaten path with my Creator and my child to just get to the elevator.
“May the Lord reward your work, and your wages be full from the Lord, the God of Israel, under whose wings you have come to seek refuge.” – Ruth 2:12
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!