An odd request for a guy who has never had children, "Could you write some advice for parents of kids with disabilities?" I look back on the days when I went into family homes to consult with parents of children with disabilities who had problem behaviour with a wee bit of shame. I understand now that I never really understood the issues they faced nor the degree of exhaustion that they experienced. I tried to be sensitive and creative in the approaches I designed and if they worked, which often they did, it was primarily due to the incredible determination of a mom or a dad. But, the younger I was the more I knew.
But I've been thinking about the request. There are some things that I would give as advice, things that I've seen from a distance, things I've learned from talking to parents who did the parenting thing well, so I'm going to give it a shot.
Piece of Advice 1:
Don't live in only one room in your heart. Move from room to room often, keep the doors well oiled. There is more in your life than a child with a disability, there is more in your life than battles with schools, spats with experts, conflicts with rude strangers. Continue to be who you were before children - before disability ... keep a sense of proportion, a sense of humour and a sense of self. It's a difficult world for your child and it's difficult helping someone navagate that world. But it's also a world of fun and pleasure and laughter. Experience both. Remember there are other people in your life, don't neglect your spouse, your other children, your friends ... there are many rooms in your heart - live in a mansion, not a one room walk up.
Piece of Advice 2:
Listen to the opinions of others but trust your instincts. Just because someone lands in your home as a 'expert' on disability, on behaviour, on speech, on anything - doesn't mean that they actually like people with disabilities. It took me a long time to understand that there are people who are paid to care for people with disabilities who actually don't. Who fell into the job, who enjoy power, who 'know better, know best' and love to prove it. So listen to their opinions but decide for yourself. Never give control over to another - never - they will always misuse the power you grant them. Establish boundaries early on, know what's yours and what's theirs. You will find, in time, you can tell the motivations of the 'expert' quickly. Like a dog can smell bacon a block away, you will smell conceit in seconds.
Piece of Advice 3:
Don't get addicted to your child's need of you. Don't become reliant on their role in your life. Children are here to grow up and grow away from you. It's your job to help them individuate and to ensure that they begin to assert themselves in the face of even your power. Too many parents begin to hold on tightly to their adult child, forbidding relationships, forbidding risks, forbidding independance 'for the good of their child' when really its 'for fear of my own loss'. There was a time when people with disabilities were forbidden adulthood, that time has passed. Your child will grow up, will want to have independance (from you) and relationships (with others). Parenthood really isn't about you ...
Piece of Advice 4:
Laugh. Celebrate. Be joyful. When you talk to other parents of kids with disabilities you will find that they all, the ones who are still sane a couple of years in, have whacked out and bizarre senses of humour. They can laugh at things that will startle you. They will tell stories that will curl your toes - and they will be wiping tears of laughter from their eyes at the same time. They will, the ones who are still coherent a couple of years in, tell you stories about the tremendous joy, the incredible accomplishments of their children. Laughter and celebration and joy come from parents who manage to shift their perspectives and redefine success. They see their child overcoming dour predictions of failure - they know what this means and they are joyous about it. They begin to understand that there are many ways of being successful - marks and money being two of the most meaningless. They begin to 'get life' in new and incredibly wonderful ways. And, oddly, this makes them happy.
Piece of Advice 5:
Save your anger for when you need it. Tuck it away and use it as a tool. There is so much to be pissed at. There is so much that will rankle you. This is something that I had to really learn as a person with a disability. At first I was angry a lot, at the stares of others, at the patronizing tone of voice, at the assumption of incompetence - yada yada yada - it still annoys me but it ain't worth my wrath. I keep my anger ready for when I need it for battle. It gives me fuel then, anger at the universe, at the manners of strangers is useless, wasted and it tires you out. Anger targetted can be an effective tool for change. Reserve it, use it ... then let it go.
Piece of Advice 6:
Find community. Make sure that you aren't in this alone. Through blogs like this one, or a gazillion other disability blogs, through parent organizations ... there are places where you can find others who understand the journey you are on. It is important that you have others to talk too, others in front of whom you don't need a facade, others who will get it when you say something like, 'oh my God ... schools'. The immediate understanding will let you know that you aren't insane - the world is. Get lost in their stories, talk to parents of kids who are older, they will give you the heads up for what's coming next.
Piece of Advice 7:
Talk to your child about their disability. Never say, 'you are just like everyone else' - because it isn't true. They have differences. They should know what the differences mean but they should also know what disability doesn't mean ... having an intellectual disability means having difficulty with learning, it doesn't mean that they won't grow up, they won't get jobs, they won't get married. It means that they will find some things hard that others find easy ... it doesn't mean that they should be teased or bullied, it doesn't mean that they should expect less, it doesn't mean that their life has no value. It means that they may need help with some aspects of their lives ... it doesn't mean that they have no control, it doesn't mean they have no choices, it doesn't mean they don't have power. So don't deny their disability, but don't give the disability power it does not have.
Piece of Advice 8:
Understand that your child needs all the options that every other kid has, they have a right to 'community' ... the larger community. But they also have a right to their own community. They have a right to socialize and hang out with other kids with disabilities. They have a right to their own peer group. Oddly we have come to the point where the mere idea of kids with disabilities hanging together is a political and philosophical issue. "They should not have segregated activities or friendships." What? Of course they should have opportunties for friendships and activities with any other kid. Don't teach them that friendships with non disabled kids are more valued than friendships with disabled kids - what's that saying about disability, about who they are. Be radical in seeing your child's right to a variety of communties ... not just one.
Piece of Advice 9:
Um, blush, don't forget sex. I know that's what got you into this in the first place, but sex is still - fun. I know, I know, I know I should talk about sex as being an expression of love and intimacy and all that jazz. But ... it's also ... mainly ... well, let's put it this way. A woman with a disability that I did some counselling with a few years ago could not, for the life of her, say the word 'orgasm' ... she always refered to it as 'the big tickle'. And ever since I can't think of it any other way, it's the big tickle. You may end up being so tired that you start to lose the desire. That should be your early warning system ... ALERT ALERT ALERT ... somethings off balance here. I'm going to tell you something cool. Do you know what makes the clitoris unique in the human body? Well, it's the only organ that exists for the sole purpose of giving pleasure. Isn't that cool. It's like God has a message for us about sexuality, and the clitoris is the messanger ... it's SUPPOSED to feel good. The big tickle ... you'll need it ... don't get off balance.
Piece of Advice 10:
Never read advice columns that round up to 10 or 12 or some other pretty number, all that means is that the writer felt that stopping at 8 didn't feel complete or that 11 just begged for 12.
So that's it. Ask and you will recieve. I don't know if this is helpful, wanted or even accurate, but it's what it is, for better or worse.