The world was not rent asunder. There was not a crack in the space time continuum. More importantly, Joe survived. As I've written here before, Joe has a 'get in the car and go until goal' approach to driving. Me, I'd like to stop every now and then to see roadside attractions. We are often a bit at odds when on a longish trip. But I announced to Joe on the way through Buffalo on our way to Syracruse that we would be stopping for lunch at Fuddruckers. They have an amazing swiss mushroom veggie burger, I was determined to get out of the car and actually eat at a table. Joe was surprisingly flexible and agreed that, since it was a short drive, we could stop.
After ordering the food, I spotted only one table that would be comfortable to sit at in the wheelchair. It was vacant, so I headed over to the spot to grab it. Ensconced at my place, I took my wheelchair gloves off, set them on the table and then began to look around the restaurant. My eyes finally setted on a family, obviously not one of great means, sitting several tables away. Mother and daughter sat with their backs to me. Father sat facing me.
The daughter seemed to be engrossed in eating her burger, her back was to me, but even then I could see she was not part of the conversation between her parents. It's hard to guess ages from the back but from her height, she'd have had to been in her late teen years. But something was going on. Mother, beside her was constantly touching her, stroking her, twirling her hair, rubbing her back. A constant flow of touch. I can imagine a teen putting up with that for a short while and then becoming irritated. Being irritated is part of the job of a teenager. I swear to heavens, the thought formed in my head before I even saw her face, "I'll bet she has Down Syndrome."
And, when she got up, I saw that she did. There had been something about the touch which was not quite right, not quite natural, for a typical teen. But worse, when mom took a step away, her daughter cried out as if hurt and then dove towards her. She put her mothers arm around her and snuggled her face into her mothers chest. Mother, looking tired, held her briefly. They walked out of the restaurant with her wrapped around her mother.
Because of my reputation as an 'anti touch' guy (which isn't true) formed through my 'Ethics of Touch' training programme; many will already know my thoughts. I think touch is a wonderful thing, it can represent love, affection (yes and lust), it can show concern and caring, it can communicate sorrow shared and compassion offered. It can do a multitude of good things. But it can also do bad things. I don't need to list those.
In this situation it seemed like a young teen with Down Syndrome hadn't experienced the subtle changes that happen in touch between parent and child as they grow. She was stuck at touch for the age of two. It may have served a purpose at one time to reassure her, but now she seemed addicted to it. But it made her less. It made her child like and childish.
Of course I want parents to love their children, hug and hold their children. But I also want parents to recognize that their children are growing up. That their relationship needs to grow and change. That the touch they get them used to now, will be the touch they expect from others later.
Please be aware that your child with a disability needs their relationship with you to grow and change as they get older. They are only an eternal children if parented to be one.
Expectations of your child are vital.
Expectations of yourself, well, now - that's where great parenting begins.