Parenting a “Special Needs” Child
Does your child have lots of play-dates? Do you get to hang out consistently with other moms or dads? Or do you have fewer opportunities for social time? Or even very few, or none? What's it been like for you over this Holiday season?
Social interactions frequently stretch my son Rylan's window of tolerance, yet he longs for companionship, fun and time with others. Living out in the country, play-dates and get-togethers with friends and family are definitely a planned affair for us. After the Christmas holiday a close friend and I arranged a get-together to have coffee while her sons, Mason and Isaac, eight and five years old, played with Rylan for a few hours.
Both Rylan and I were excited to be having friends over. Feeling some niggles of anxiety beginning in my tummy, I remembered how supportive prehearsals are for the needs of predictability and trust, especially when venturing out into the social world. Naming those needs for myself, I felt my internal system calm. Inviting Rylan to join me, we snuggled together on the couch. I asked, "Do you remember what happens for Isaac if you begin to feel overwhelmed?" "He gets really anxious and worried about whether or not I'm okay," Rylan replied. "Ah, he really cares for your well-being, doesn't he?" I affirmed.
"And Rylan, have you noticed anything about Mason?" "He wants to choose what he'll do all the time now." "Yeah," I agreed, "he's growing up quickly, isn't he? When you're bigger, you like having lots of choices, don't you?" "Yeah," Rylan smiled in agreement.
"Remember to run to me for support when you notice your energy is getting big, okay? I'll be right here for you, buddy." "Okay, Mom."
While my friend and I visited, I observed Rylan expressing anxiety, his body squirming and his face wincing, when the boys asked to have a turn playing a game together on the PS2. I moved in close to help them transition by placing myself between Rylan and the boys. As my hands touched the game system, Rylan's nervous system ignited, and grabbing both of my hands with force he exclaimed, "Do not ever touch this again - it's mine!" "Rylan I'm here," I exclaimed with surprise, and the little boys ran quickly to their mother for support and safety.
Gathering Rylan to me, I moved to the bedroom for privacy and reconnection. My own nervous system was so stimulated, that I said honestly, "Rylan, I'm noticing all I want to do is give you information, so I'm wondering, what is up with you?"
"It's just so hard to stay calm. I need Jesse!" Rylan moaned, "He's my only friend, and only he calms me down when I get upset, instead of me needing to stay calm for others! I wish I had a knife! I'd just stab myself here," he said thrusting his hands on his chest, "and no one would have to calm me down again ever!"
"Oh Rylan," I began to express as I felt my own system begin to flood. Then he suddenly threw his arms about my neck, pulling me close, saying with urgency, "Quick, we need a limbic tackle!" Instantly I felt my nervous system calm and warmth radiate out from my belly. "Ah Rylan, thank you for remembering how to calm us both," I said with a deep sigh. Holding him close in a warm embrace, I felt a sense of awe at his new-found ability to track and take action to meet his needs as well as my own.
After resting a few minutes, Rylan wanted to reengage with his friends. "I'm sorry, Isaac, I didn't mean to scare you. I'm sorry, Mason." "I accept your apology." Mason said solemnly. "I accept your apology too." Isaac said with a smile. "Here, you guys want to play Batman and Robin together?" Rylan the young man had stepped forward, "I'll set the timer for you."
Later that night as we were falling asleep, Rylan whispered to me, "Mom do I have autism? Like Temple Grandin?" Remembering the movie we had watched together, I replied, "Autism...you mean are you sensitive like Temple, seeing things differently than others? Like it's hard to get what others want socially and stay present with what you want at the same time?"
"Yeah, sometimes it's so hard to stay calm, and people just don't understand." he stressed. I replied, "Umm, like today with the boys when it was so hard with the video game?" "Uh-huh," he said. I empathized, "You really want to play and have fun, and at the same time you feel overwhelmed how others want to play and have fun, and big energy comes up?" "Yeah - that was so hard for me Mom, to let them play the game and just watch." "I saw that, Rylan. You even set the timer. I felt so surprised at the time, knowing that really stretched your window of tolerance." "Yeah, it did. I thought I would burst!" "Wow, I celebrate with you how you stayed present, Rylan. That is really huge! You know, when you stretch yourself like that, you'll notice it will get easier over time. Each time, I bet it will feel easier." "It will?" He sighed with relief, "Good!"
The next night on New Years Eve, Rylan and I watched the movie "Where the Wild Things Are," and when the energy got big, he felt really frightened, needing reassurance. He asked me, "Do the boy and Carol, (the Wild Thing main character) have autism too?"
What really stands out to me is the need we all have to be seen and held with compassionate understanding, especially when our system feels overwhelmed and we express with "big energy." To have someone on the sidelines welcoming us with arms opened wide, to absorb all the energy our system radiates, and to cradle us in their lap with comforting warm compassion for as long as we want to be held, with no expectations to do anything, just lovingly offering understanding and calm. What a gift.
I want Rylan to feel safe and comfortable sharing his story in the world, so I always read the stories that I write out loud to him before I publish them. This time as I read, he flushed, looking at me with concern in his eyes and said, "Mom, don't write about autism! I feel embarrassed!"
"You feel embarrassed you asked about autism?" I asked. "Or that you identified with Temple, who says she has autism, and worry people will see you differently?" "I don't know." Rylan said as he squirmed in his chair.
I empathized, "You want to be seen for who you are, included, and feel you belong, especially with those you care about?" Rylan shrugged, "Maybe," he replied.
"Let's remember the movie," I suggested. "What did Temple say about autism?" Frowning slightly Rylan replied, "That she had it, and she saw in pictures." "Yeah! And so she could see things others didn't, right?" I asked. Rylan's body relaxed as he answered with a sigh, "Uh-huh."
"You know, I think sometimes it can be helpful, just for better understanding to have a word to call it. Like eyes. For instance, some people have blue eyes, some green, some brown, some hazel, and some eyes seem to change color depending on someone's mood or what color they are wearing! Have you ever noticed that?" I asked with a grin. "Yeah, like me!" Rylan smiled in response.
Nodding agreement, I continued, "Being able to name eye color helps being able to appreciate how someone is different from other people, and even helps you recognize them. Everyone is different; being able to identify how someone is different can just help you begin to understand them easier. You know, there aren't a lot of people out there that really understand how different people are, especially people that are on the autism spectrum. Autism is just a name. There are all kinds of differences people with autism have from one another, but the thing they all have in common is that they think differently than people who don't have autism. They have shortcuts and ways to think about things that other people don't. Does that make sense?"
"You mean like cheats for Lego Batman?" Rylan asked with his eyes shining bright in resonance. "Yeah, now that's a real shortcut, isn't it!" I agreed.
"I noticed when Temple said, 'I have autism', the other people could begin to make sense of why she did some things differently than they did, and they listened to her. She made a big difference for so many people, and animals, by standing up and sharing information. Do you remember why Mom writes stories about our experiences?" I asked.
"To help other Moms and Dads and kids. I know." "That's part of it," I responded, "but, you know, it really helps me most of all." Rylan looked up at me in surprise. I continued, "When I write our story, it helps me make sense of what has happened, and I can see things more clearly. Like how a posthearsal helps me see how I might do things differently next time, or understand better why you did something you did, or appreciate how amazing what you did was! It helps me grow as a Mom, and I want to help all the other Moms out there, and Dads, who may experience some of what I do as a parent. And I want all the kids out there, especially those on the autism spectrum, to be held with unconditional love and understanding. Does that make sense?"
"Yeah. Maybe you can email me the stories when I'm a dad to help me remember too!" Rylan said with enthusiasm. "Great idea buddy!" I laughed.
So with Rylan's blessing, I wish you a Happy New Year that is filled with loving-kindness and warm understanding for all.
