Blog#19: Dear families and friends

Dear families and friends of parents with PDAers,

Firstly, let me just tell you this. From the bottom of my heart. We GET it. It’s really hard to understand our lives. We see the disbelief in your eyes, the way you wince when you witness situations that seem entirely out of our parental control. You think: this is no way to live! You think our family life has been turned on its head and we’ve lost our control. And we know you think this, and we really can see what it must look like.

It’s just that you don’t understand. In order to fully understand, you’d have to live our lives, and of course that’s not possible. Perhaps you tried to understand at first, or perhaps you just don’t believe things you can’t comprehend. I’m guessing this is way out of your frame of reference.

You remember what life was like for us a few years ago, when we our family appeared ‘normal’. School and jobs and parties, and getting together for Christmas…How did things get like this? When did things start to fall apart and why didn’t we fix it?

One day we were where you are now. Doubtful, as we too had no reference for the family situation we found ourselves in. Because you, as we once did, think that all a child needs is a stronger hand, more discipline, and to see there are consequences for their actions. Once this is implemented, they will begin fall in line. Fall in with all the other kids who get up, go to school, play football at the weekends, go to swimming lessons and have family holidays.

But for too long our child has thought they were the boss, right? They think they can do literally anything. Speak to anyone in any way they like. They refuse to go to school, to family gatherings, to leave the home. They don’t even say please and thank you. This is not normal! Kids don’t behave this way if they’ve been brought up properly. So, what’s gone wrong in our house?

Were we being lazy parents? Well, the whole situation is so incredible that maybe that’s the case. Maybe we just wanted to be popular with our kids? Be their friends, and we all know you can’t be your kids’ friends. Otherwise everything becomes chaos. Which is what we’ve got, right?

It must be our parenting. We didn’t show them who was boss. We didn’t force them to leave the house, to go to school – so they would be the school’s problem. This is probably why they are no longer compliant.

Lockdown didn’t help, did it? You think maybe they’ve just got too used to being at home and having their own way. And as for screens, well we’ve really made a rod for our own backs there haven’t we! What did we think was going to happen? It’s because there are no rules, no boundaries. Kids NEED rules. They need to know where they stand. And with us, maybe they don’t, right?

We know this is what you think. And perhaps some of you think that we are exaggerating our situation – for attention, maybe? But, stop. Let reason and common sense come in for a bit here. Let me ask you some questions.

Do you really think this life is the easy option for us?

Do you think that we choose to live lives of isolation and constant uncertainty?

Do you think that we enjoy seeing our children anxious and unhappy?

Don’t you think that we would jump, leap, GRAB at the chance for our children to be happy and a part of society? For them to be fulfilling their potential, rather than being in and out of schools, constantly misunderstood, attending appointments with professionals, afflicted with extreme anxiety which prevents them from doing the very things they used to love?

You may not know but we spend a lot of time explaining, justifying, evidencing and fighting with educators and medical professionals for recognition. It’s not just you that doubts us! We know the drill; nobody takes anything we say at face value. We are used to having to explain our choices and motivations on a daily basis. But, believe me, it gets extremely exhausting. To be disbelieved or misunderstood regularly is not only frustrating, but it becomes soul-destroying. On bad days it makes us question ourselves. It can be so frightening and isolating. Did you know our mental health is more fragile than it’s ever been?

Sometimes we stop talking to you. We don’t tell you what’s happening in our lives as we feel that we have drifted too far away from you. There’s a lot of water under the bridge between us, and we don’t know how to get past it. Don’t blame us for this, we’re just exhausted, our spirits have been broken. Sometimes having to explain and justify our situations again and again is just too much, so we may take the easy option and just retreat away from you.

We turn to other families like our own for help. And when we find allies, we jump head-first in to unconditional friendships of understanding and support. That’s what the saying ‘find your tribe’ means. But you were there first, you were once Our Tribe. To have you by our side once again, without questioning us, would be of huge comfort.

You can help us, you really can. It’s simple, honestly. And it costs you nothing.

Believe us. Even if you don’t understand us, even if our experiences are polar opposites from yours, just believe us. Just because our child doesn’t have a ‘visible’ disability, it is there. It’s lifelong. It’s real.

Support us unconditionally. Even if you don’t agree with our choices, just accept our situation is different and support us.

Educate yourself. Don’t make us educate you. We’re tired of having to do this all the time. Do some research about PDA so you can start to understand on your own terms.

We want you to take that leap of faith, and give us the benefit of the doubt. Try believing us, and see what happens. See how your understanding and support can actually change our lives for the better. See what happens if we know you are a safe space that we can turn to where we know we won’t be judged. The fact that we want you to be a part of our lives means we really care about you, and we don’t want you on the opposite side from us. This life is hard. We need you. Our children will face more obstacles as they grow older, and we worry so much about their future living in an ableist world. They will have to fight everyday to achieve things you and your children may find easy. They will need people around them who choose to show them unconditional love, support and understanding. Be one of those people.

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