Dear Tess Stimson, and the people on the plane and in the restaurant,
I understand you had a recent bad experience when you were out because you were disturbed by a child making a lot of noise. You may have been having a difficult time and eventually snapped at the child. It emerged that the child was disabled and what ensued was a classic onslaught of verbal abuse from a mother defending her child. It's not uncommon.
As you mention in your article on Femail, a lady on a plane was photographed when she told off a disabled child kicking her seat. The angered parent then sent a photo of the lady on social media which went viral.
Well, I'm going to do something very unpopular with many people who have disabled kids. I'm going to apologise, I'm going to say 'I'm sorry.'
I have been on both sides of this. I've been the singleton making her way on a long haul flight to see friends in the USA, and had the kid that kicks my seat. I've even asked to be moved or upgraded because of it.
And I've been one half of a couple who get to a restaurant and look around for 'that' family. You know, the one I'd like to not sit near and asked to be seated far away from them.
Well, now I am 'that' family. I look into the same restaurant and ask to be seated away from all the other diners, and preferably in a corner to prevent accidental escape from the kids. A booth there is even better as it helps us contain our kids, noise and movement. No one can tell by simply looking at us that two of our three kids are classified as disabled. And inevitably as restaurants can get busy, someone may end up sitting near us. And they may have an experience just like yours. And I'd like to say to them and to you in advance, 'I'm sorry.'
I'm not sorry that my kids are playing on a loud iPad. But I am sorry that it may be loud and distracting for you. My kids need this do deal with their sensory overload and anxiety. We are working on helping them reduce it's volume, tolerate wearing headphones and listen to us when we ask them to turn it down.
I'm not sorry that my son has ADHD and can't stop moving. But I am sorry that his moving and jumping about in his seat has caused your seat to be bumped or you've had to hear another piece of cutlery drop to the floor...because it's been knocked off the table.. again. You may even have asked our son to stop playing his cutlery like the child in your article, but due to his lack of focus he would have forgotten what you had said after possibly just seconds later. Of course the snappy encounter could have caused him to become very upset - he knows he's moving and he is already trying hard to stop. Tapping and playing with the cutlery helps him stay calm. We are trying to help him use other ways of staying calm and helping all our kids learn to sit still. But it means them being focussed enough to hear our communication and use other ways to stay calm. Sometimes it means they need to take medication, and it sometimes just doesn't work.
I'm not sorry that my son is now speaking, but I am sorry that because it's loud it may disturb conversations. Our eldest son literally cannot tell that he is speaking at a volume that is totally inappropriate for the setting. But we are working on it. Slowly he is able to hear us when we speak to him and he is able to focus for longer and longer meaning he's able to have a lower volume for a longer time. But it still means he's loud a lot of the time. Our other son is non verbal like 25% of autistic people, but he makes a lot of loud squeals and shouts. Again we are going to therapies and work with him every single day to help him communicate appropriately.
I'm not sorry my son has had to get out of his seat and jump around. But I am sorry it has disturbed you or bumped you. Our younger son has finally managed to self regulate his sensory system by getting up and jumping when he needs to. This stabilizes him and means he doesn't go into a meltdown. We encourage him to balance his system before we arrive by spinning him around and jumping at home before we leave. Sometimes it's not enough.
When I ask my kids to say sorry when they do something naughty, I say they have to mean it. This means if they could do it again, they would try not to be naughty - they would like the result to be different. And that's absolutely right. I'm working really hard with my kids to change the outcome of these encounters at restaurants, in planes and everywhere else we go. I'm not interested in changing my kids but supporting them so they can function in society. This means if they are ever going to eat at a restaurant or do anything else we need to practice.
I'm pleased for you and your daughter who has managed to learn to discretely inject insulin whilst at a restaurant in a method not to cause any offence. I would not be offended at all if I saw this by the way, although it might take some explaining to my boys if they saw, which of course I'd be delighted to educate them about. But my boys will not learn everything about being discrete and exactly how to behave in a restaurant quickly. It will take many impressions and many practices. It's not as if we can even practice at home as they have difficulty with generalising - doing the same things in different places can be confusing. So we plug away slowly, picking days that seem to be the best, places that seem least full and least likely to cause an overload in the kids. And one day they'll may be able to go to a restaurant and enjoy it - just like you wish you'd been able to that day.
So all I can say is 'I'm sorry,' just now. And let you know that in that same restaurant or on that flight, I'm already feeling the stress of my kids actions before anyone else. I'm aware they are loud, I'm aware they are jumping about and I'm aware they seem to be ignoring my instructions. I'm tittering on the edge myself and whereas the sympathetic look or a quiet word from another person will only spur me to help the kids more, a 'snap' at my kids from another patron like yourself, may cause me to snap back. I definitely do not condone what was said to you during your experience but I can understand where it comes from. And after we've exchanged snappy remarks, it's just become a disappointing lunch for everyone and my kids haven't had the best opportunity to learn because everything's become more stressful.
One third of people with autism are asked to leave a public place because their behaviour is misunderstood. I'm trying really hard to help my kids function in society but it'll be an easier journey for everyone if society works a little on it too. As you say in your article, all kids are kids and shouldn't be treated like adults. But this doesn't necessarily mean telling them off, it means teaching them and that's not the same thing. Just like you say, they are adults in training, but training my kids takes many hours, many repetitions. And I'm honoured to train them and hope that it means they won't be in the third of autistic people asked to leave somewhere, or worse, in the half that don't go out at all because they fear they will be unaccepted and asked to leave.
So perhaps if I say, 'I'm sorry' and mean it, in advance and tell you how I'm trying to teach them, trying to make things better for them and you, then it might make you feel a bit better, make me feel better, make us both feel a bit less tense, a bit less snappy and we might manage to train ourselves how to get through lunch together or a flight together without it becoming another disappointment for any us.
From another hopeful mum of disabled kids
Tess Stimson has since replied to my letter in the comments below. Have a look, what do you think? The Daily Mail are currently considering an article where Tess Stimson spends time with a family who has children with autism. Email them if you think it's a good idea here
People can make places inaccessible too. Linked to #accessiblestories linky