Parenting is difficult. I get that. I really do. Those of us who don't have children often get the 'but you don't have kids' look when we express any opinion on parenting at all. No, I haven't parented, but I do know that parenting is difficult and full of emotional challenges and pitfalls. And while I've never parented, I have indeed been parented and I think that counts for something. Those of us without children did NOT grow up without parents. We've all of us, been caught in that tangled and difficult relationship that comes with having a parent.
All this is to say, carefully, that I find sometimes when writing certain blogs I get real cautious because when I write something that says anything even, maybe, half way critical of a parent or a a parenting style, I get some immediate and angry responses. Some on the blog and some to me personally. I remember one woman, a parent of a fellow with a disability, sitting and bitching to me about her own parents and how they don't understand her, don't appreciate her, don't acknowledge her as an adult. OK. All fair things to say. A little while later I suggested that she needed to look at an interaction she had with her child. WOW. WOW. And, WOW again. I got this huge angry response. I'm just an uncaring professional (um, I'd been a friend up until then, I'd never actually worked with her or her son) that PARENTS KNOW BEST WHAT THEIR CHILD NEEDS, that PARENTS ARE THE ONLY ONES WHO LOVE THEIR KIDS. It was a truly frightening spectacle.
Now, of course, most parents of kids with disabilities are wildly reasonable and easy to talk to, most are reflective people who want to learn. But I fear any time I'm going to write a blog where in a parent is the 'bad guy' in the picture. It is possible for parents to be the one making mistakes. One of the biggest is the belief that because they love their children they know best what their child needs. Ask yourself this question - all of you reading this have parents, did the fact that your parents love you give them any insight at all into your needs or wants? How many of you had to 'shake off' parental love for a bit, even with all the wrenching pain that went with doing that? Sometimes love is not what a child needs. Sometimes, it's respect.
Do you know that this is the first time I've written an introduction to a post! I must be really on edge.
So ... here's the post:
They were sitting right beside me. Not figuratively, literally, beside me. I couldn't help but overhear. I tried not to. I knew it was personal. I knew I wouldn't be able to hold back writing something about it. So, I've waited weeks and weeks from the event, that way, this can't be placed in time. A man in his thirties, with Down Syndrome, is out with a care provider. They are sitting and chatting. A man came along, much older than the two of them and was shocked to see the fellow with Down Syndrome. They greeted each other warmly.
The care provider did not know the older man but recognized that the fellow she was with did. She looked at him and said, 'Would you like some time to visit with your friend?' He nodded. She got up and said, 'I'll just walk around a bit while you talk'. The older man sat down. I noticed that the staff never went far enough away that they were out of sight, but without question, she had given them privacy. She could not have heard what was being said.
The older man asked the fellow with Down Syndrome how he liked living in his own apartment. The man with Down Syndrome shook his head, sadly. 'What's wrong?' Seconds later there were tears. The older man reached out and comforted the fellow he was talking with, 'Come on, we've known each other for a very long time.' Then, through tears a story was told.
In effect the man with Down Syndrome was feeling completely controlled by his family. The called him every day. Even his cousin who lived far away, called once a week. He was expected to be there for the phone calls. They called to remind him about the rules. 'No girlfriends.' 'No booze.' 'No cigarettes.' 'No drugs.' 'No parties.' 'No staying up late.' The list went on and on. The fellow with Down Syndrome counted down on his fingers rule after rule after rule. He said that if he wasn't there for a phone call he'd have to apologize and explain where he was.
'Why do you think they are doing this?' the man asked. 'Because they love me,' was the answer. 'No, because they want to control you.' The older man shook his head, 'I've wanted to say this to you for a long time.' A long pause followed and the younger man asked, 'What?'
'You know I'm gay?' the older man asked, the younger nodded his head. 'You were the only person that was kind to me when I came out, that meant a lot to me,' words said with real emotion. The man with Down Syndrome said, 'I didn't know what it meant at first.' They both laughed, not like at something funny but like they both needed to. 'Well, my parents kept telling me that I needed to change, that I needed to move back home, that I needed to stop seeing my boyfriend, that I needed to see a doctor, that I needed to stop drinking. They had a long list too.'
'I don't know if anyone has told you this,' the gay man continued, 'but you are an adult. You are a fine man. You make great decisions. You need to learn how to tell people that love you to back off and let you be yourself. You need to be the man you are, not the child they think you are.' The man with Down Syndrome was incredulous, rebellion was being suggested, 'But they'll be mad.'
'Of course they'll be mad!!!' the older man shouted so loud that everyone turned, he didn't notice. He continued, 'That's what happens between parents and children when children grow up. There's always yelling!! Always! My parents yelled so much, they even told me that they'd stop loving me.' The young man's eye's opened wide, 'They said that?' The gay man wiped tears from his eyes, 'Yes. And they did stop loving me for a while. But you know what?' A shake of head responded. 'I never stopped loving me and that's what mattered. Later on they all came round but I had to stand up for myself. That's what adults do. Adults upset each other ... all the time.'
'So what should I do when they call?' It seemed a reasonable question, 'Don't do that!' came the sharp reply. 'Don't ask me what to do. You have been taught that other people know best what you should do. Decide what you think you should do and then do it. Damn the consequences.' There was a pause, 'I like to talk to my mom and my dad and my cousin, but I don't want them always telling me what to do and how to live in my apartment.' The gay man grabbed the younger man's shoulders, 'See, that's not so hard, know what you want, then go get it. Make people respect you. I had to learn that it was my job to get respect, even when people didn't want to give it. It's the same for you.'
The staff woman was making her way back, 'I so don't want to bother,' she said, 'but we've got to be going.'
The man with Down Syndrome, pause, swallowed and then said, 'Not yet, we're not done. I'll call you when we're finished.'
She was stunned, but she listened. She turned to walk away and give them more time. The gay man had his tears in his eyes as he said, 'That wasn't so hard was it?'