Things I Learned On I-75

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”

7 Things I Swore I’d NEVER Do…

There’s a great quote I can’t find that goes something like this: “Before I had children I had a few strong opinions. Now I have a few children and no opinions.” Wise words indeed. But even more true for those of us raising special needs children. For we never imagined the complexities and situations we find ourselves in. My dad has always told me not to tempt God to prove you wrong. These days, I find these to be even wiser words. ;)

Here are the seven things I swore I’d never do - before having a special needs child:

1. Have an un-toilet-trained child over the age of two. Now, stop laughing at me. It’s most unbecoming you know. Seriously, my late and beloved grandmother was a firm believer that all children should be potty-trained by the age of one. No, really. And both of her children were. She didn’t work outside the home at the time, and she spaced her non-special needs children seven years apart. So, yes, she had the opportunity to use training techniques that many today would call “intuitive” or “listening to the child’s cues”, etc. It worked for her. So, I was of the opinion that we would early train as well. Yeah, life is funny like that.

2. Allow my child to sleep in my bed. I have all kinds of strong, yet useless opinions about sleep schedules and the importance of parents having a sacred space. I’m serious about that laughing. You really must stop. Our NT daughter was a good sleeper. And, despite (or because?) of being a precocious little imp, she actually took two naps a day for us up until almost three. And I am one of those obnoxious individuals who rarely needs a nap, falls asleep easily, wakes using a mental alarm clock, and doesn’t drink coffee. So, my son’s sleep issues have probably been the hardest thing for me to adjust to. Because I am so quickly alert, it is virtually impossible for me to go back to sleep once awakened. And Callum was still waking approximately 4 times a night well past two years of age. In light of my strong views, it’s kind of ironic that some of my favorite memories of him are the ones of us awake together in my bed, snuggling and quietly watching Yo Gabba Gabba in the wee hours of the night until he fell asleep again. I have no idea what his future will bring, but I cherish every moment of that now while I can.

3. Allow a child over the age of one to drink out of a bottle. Yes, my son can drink out of a cup with a straw and uses a sippy cup. But he still wants to snuggle with me on my lap - and drink out of a bottle. We confine this to home now. But he is such a little sensory seeker that he craves this - touching my face, running his little hands and feet over my arms and legs, and pulling my hands to him to squeeze him. And I’m a wimp to his happiness. So, there you go.

4. Bring an electronic entertainment device into a restaurant. Oh, I well remember my haughty disapproval of this. I could not believe that some parents would allow their children to tune out others at a dining table and not learn good manners. Now I carry my iPhone or an iPad everywhere I go. It helps him tune out the background and focus- and us to catch a quick meal. I know I should be teaching him social skills, but he isn’t there yet. And I’m not willing to let him scream his head off in a restaurant. There are people there without special-needs children- with their own stresses- who need a quiet meal too.

5. Allow my young children to watch TV. I still don’t really approve of this in theory. But I’m tired. And no one has sent in backup. Nuff said.

6. Share my son’s diagnosis. I used to think that it would do him a disservice. Now I think the disservice is not preparing his path in the world by helping the world to understand him. So I tell anyone I think needs to know at any time.

7. Discuss my most private hurts, missteps, and worries in public. I know that seems strange to hear for those of you who don’t know me personally. But, in my day-to-day life, I am actually a fairly restrained person. I don’t curse in public. I’m pretty modest in my dress. I’m so ridiculously afraid of embarrassing myself in front of others that I don’t even dance. My friends have long amused themselves and shared stories of various pranks on their part to embarrass me by calling out my name on an intercom or poking fun at my need to be ladylike. And you should have seen my horrified reaction when my husband decided to apologize for an argument on Facebook. I’m not a prude (though an enormous fan of Miss Manners), but I am of the opinion that there are just some things one does not do in public if one has any class at all. Blame the southern belle in me. But I’m also of the opinion that if you are going to do something, you should do it with gusto. I think this blog qualifies, don’t you? ;)