Disclaimer: This is about my particular child and my own experiences raising a child with autism. I am not attempting to represent the autism parenting community with this post. As the saying goes, “It’s a spectrum.” Yes, I already know that our situation is far better than some. And, yes, I know that our situation is less encouraging than others. Which is true about most things in life, I suppose.
Last month, we took our little family of four on our first road trip together to visit family. It’s an eight-hour drive, and –with a 3 and 4-year-old – we simply weren’t willing to do it any earlier. But, we loaded up the car, offered a quick ceremonial dance and sacrificial offering to the temper tantrum gods, and headed out. I expected the worst. What I got, however, were revelations I didn’t expect to find on Interstate 75:
1. My son can tolerate much more than I gave him credit for. He sat, happy as the proverbial clam, and just…enjoyed the ride, man – enjoyed the ride. If I turned and caught his eye or called his name, he’d just turn and smile…all the way to his eyes. I swear I fell even deeper in love with my child during those hours on the road. He is a likable little dude. He handled museums, crowds, unfamiliar restaurants, my mother’s annoying Jack Russell terrier, hotel rooms, and a rather amusing and startling exploding bath in a Jacuzzi tub. Knowing how many of our kids in the ASD community struggle in being overwhelmed with sensory issues, I recognize his tolerance of the world around him as one of his strengths. And, for his sake, I’m so grateful for it.
2. I think my NT daughter is acting out for attention. Having viewed “Glass Children” soon after this trip, I worry even more for her. I really look forward to the end of what I deem “The Great Sacrifice” — making the decision to live on one teacher’s salary while sending my husband back to school full-time. When you’ve gotten used to a bigger house and cars that consistently run, it hurts more to downsize – especially when raising very young children. Good times are coming again one day, but it’s not fun. I dream of being able to decorate a room for just her. All lavender and white with pops of sunny orange and pink – like she loves. I look forward to being able to enroll her in more activities, take her to a concert, or introduce her to the joys of Build a Bear. Yes, she’ll be just fine simply being loved, but it will do this mama’s heart good to just take her to do something fun without second thoughts. She needs our attention all the same as her brother. I so want her to feel we did right by her.
3. Although Callum certainly has sensory issues – the sensory seeking variety that will inevitably cause much social awkwardness – we are also terribly fortunate in the seemingly random distribution of autistic severity among spectrum kids. Yeah, it’s autism. But one person’s autism parenting reality is truly not another’s. Our boy loves to cuddle. He gives kisses if requested. He has never bitten or hit us – though times can change, I know. He loves to laugh. And, though by no means even approaching his correct developmental age, he is curious what we are doing. He usually comes if we call him and seeks us out when he hasn’t seen us for a few minutes. And he successfully nonverbally communicates what he wants –that he wants to play tickle and get tossed around on the bed or that he wants juice, not milk. Most of all, though he has never said, “I love you”, he makes joyful eye contact with us that says it just as clearly. Yes, I want even more for him. But I also know that in him we have an abundance of joy and rewarding interactions that parents of more severely affected children often miss out on.
4. People are beginning to become hesitant in how to interact with my child. I see the concern on the waitresses’ faces when he won’t talk back to them. I see the dawning realization on the faces of other parents who take a second look now at his flapping and odd vocalizations. I understand the awkwardness in family and friends who attempt to engage him and are ignored.
5. Everyone needs time away – including the little ones. They need a change of scenery too. Bronwyn and Callum had a ball jumping all over the hotel bed, playing hide and seek in new spaces, and running up and down the long hallways and the staircase of the hotel. Our daughter learned so much about time, distance, geography, and more. Vacations aren’t just an indulgence.
6. My husband is a great daddy. Of course, I knew this already. But time and proximity have a way of making you less aware of what you already know. He is equally involved in everything. He goes to doctor appointments, attends therapy, gets up in the middle of the night, checks school folders, and accepts our son for who he is. No parent is perfect, but his children are very aware of how much their daddy loves them. And I know I’m not in this journey alone.
7. I’m wound so tight. I used to love to plan day trips with friends, craft and decorate, and belt out classic rock and country tunes at the top of my lungs in the car. (Being a southern girl, I can sing every line of Bocephus’ greatest hits.) Yet, prior to this trip, I hadn’t done so in years. I am no longer capable of sleeping in. And I can’t return to sleep if I wake up. I become instantly alert and worries play like a broken record in my head. Yep, I’m tense alright. Clearly, I need more carefree fun and laughter. Infrequent moments of hilarity affect me more now –precisely because they are so rare. Yet ordering yourself to have fun is a little like trying to tickle yourself, isn’t it?
8. As the song says, we have a long way to go and a short time to get there. The only way to do it is to take it one mile at a time. To look back at our progress , while keeping our eyes on the road. To, while certainly using the road maps of those who have gone before us, remain aware of sudden detours and unexpected holdups.
And to sing as loudly and as enthusiastically as we are able while on the way.
If you enjoyed this post, you might also like: “Why I Won’t Be Getting Mother of the Year: Layers of Understanding”