Coping with Other People’s Reactions to your Disabled Child

As parents we’ve all been there. Your toddler is having the mother of all tantrums in the middle of the supermarket aisle and you want the ground to swallow you up. We know it’s a phase they go through, ‘The Terrible Twos.’ In reality it lasts much longer. There are those who will look, casting aspersions on your parenting, making you feel that you are the worst parent in the world. But, in reality it’s happened to us all and we look forward to the day our toddlers grow out of such public outbursts. However, when you have a child with additional needs, I hate to say that day may never come.

Appropriate Behaviour

James was always very small for his age so when he was in his buggy shouting, crying etc, I imagine other peoples perception was that he was younger than his actual years. Whilst there’ll always be a few who will make you feel uncomfortable, on the whole it’s well accepted that young children are going to have tantrums and so people may give you a sympathetic smile but, generally, they’ll turn a blind eye. It’s not so well accepted as they get bigger. Whilst James is only 1.38m tall at 25yrs of age, his features and shaving shadow are a clear give away that he is not so young any more. 

Resolution Strategies

When mainstream children display what we consider to be unacceptable behaviour we have a range of tools in our armour to bargain with them to encourage them to cooperate. We may negotiate the withdrawal of privileges if certain behaviours continue: they may not be able to watch the dvd they had been planning to, bedtime may be brought forward, their friend won’t be able to come and play etc. We may offer them a reward as an incentive. And of course, even young children can be bought on occasions, rightly or wrongly by good old-fashioned bribery. Let’s not pretend we haven’t all done it at some point!! However, when we have a child with challenging behaviours they will often, like James, not have the capacity that make any of the above negotiations an option. In that situation we just come down to the fact of having to somehow manage their behaviour whilst feeling that the whole world is watching us.

How do we do that? Personally, I would say that how I’ve done that depends on several factors: where I am, who I am with, how much sleep I have had and how strong I am feeling emotionally in that particular moment. 

Public versus Private

I can think of many occasions when I have had to cope with James’ challenging behaviour in public. That’s the thing that often makes it hardest, that it’s in public. How we might deal with that behaviour in the privacy of our home may be different. I’m not saying it should be. Behaviour management experts will tell you how important consistency is and I agree but, the reality is that we often do it differently at home. For example, there are times when it’s best to ignore James’ behaviour, as long as he is not at risk of hurting himself or anyone else. James reaches a point of no return when he gets distressed and the more you try and talk to him, reassure or calm him the more prolonged the episode will become. It’s not nice to ignore his distress and, of course, if we can distract him before he reaches that point then we do, but if this doesn’t work then actually withdrawing and leaving him to calm down is often the best option. He has to work through it himself and will calm down more quickly if left alone, whilst obviously being observed from a close distance. Now I can do that at home but if I do this in public it may appear that I am not caring for James at all, or that I am not ‘seen to be’ reprimanding him appropriately. Also, when out of our home I can’t give him the physical space he needs to calm down. Sometimes the only option is to take him by the hand and remove ourselves from the situation. 

People Will Look

James is largely non verbal but he makes a lot of vocalisations and can be very loud so he does attract attention. It’s natural people turn and look in your direction if they hear a shout. I’ve done it myself but upon realising it is a child or adult with learning disabilities you look away. I am very conscious of not wanting to make anyone feel uncomfortable because I know it can make me feel that way when people stare. I can understand young childrens curiosity. I’ve had them stand right in front of James and look at him. They may ask questions, “Why is he making that noise?”. Then I’ll explain in what I think is an age-appropriate way that James is different from us and he can’t talk and often they’ll accept that and toddle off.   

Siblings

It can be really hard for siblings to cope with their brother or sister’s behaviour in public too. As a young child Harry was oblivious to other peoples reaction to James. Probably by the time he reached about 9 or 10 years old he was much more aware of people looking and watching us. Whilst I always said to Harry to take no notice, I think we have to acknowledge how difficult it can be for them. I remember one particular occasion when we were on holiday and James did not want to have a life jacket on to go on a boat. With difficulty I’d got it on him but he screamed, he shouted, he pulled it off and threw it all whilst we were surrounded by other people. Harry was mortified. And another when we were at the photo booth at the top of Asda’s escalator trying to get a photo done for James blue badge (in the days before you could do it at home online) and James was not cooperating at all. Once he was old enough, and if we were in an appropriate place, I would allow Harry to wander off and put some space between us until things had calmed down with James if it helped him to feel more comfortable. 

Waiting is Hard

There is a marked difference between being embarrassed and being ashamed. I have on occasions been embarrassed by my childrens’ behaviour, is there a parent honestly who hasn’t been? I have never been ashamed of James’ behaviour.  It is not his fault. He does not have the skills to know what is acceptable behaviour in social situations. As well as being diagnosed with Wolf Hirschhorn syndrome James is autistic. He expects things to happen in a certain way and he cannot cope when things don’t happen in the way he expects. I’ll give you an example. One of James greatest difficulties is that he struggles to ‘wait’, he expects things to be immediate. So, we could go to the petrol station and drive up to the pump and my husband could get out, put fuel in, go and pay and return to the car and James will have waited beautifully for several minutes. This is what is supposed to happen, you go in and get fuel. But if we drove into the petrol station and had to wait in a queue James will have a total meltdown. It’s just not gone the way he expected it should.  Unfortunately, day to day, a lot of things don’t go the way James thinks they should.  

It’s something we work on constantly, trying to get James to understand that sometimes we have to ‘wait.’ I don’t want him to be distressed all the time and in life there’s going to be  times you have to wait. I’ve just made him a book about going out in his car. He really struggles with having to stop at traffic lights, roadworks, zebra crossings or waiting behind bikes and horses etc. I’ve taken pictures along James’ regular route in his car to day services of all the familiar things he sees on his journey. I’ve made him a book online at Snapfish so we can use this as a tool to discuss the things he will see. I’ve emphasised that he may have to wait at the traffic lights or slow down to pass horses or bikes etc. I’ve tried to reinforce positive behaviours: sitting quietly and listening to his music or looking at a book. It’s a work in progress.

Grow Broad Shoulders

So how do I cope with the stares from others? As I say, it depends how I feel on any given day. There have been times when I’ve been really struggling, maybe had very little sleep when I’ve just wanted to cry. I sometimes have. Then there are other times when I don’t care who is watching, it’s like water off a ducks back. Of course, I’ve wanted to say, ‘What are you looking at?’, but I haven’t. And most often, it’s probably somewhere between the two, trying to resolve the situation as quickly and smoothly as possible whilst attempting to draw as little attention to ourselves as is feasible. Not everyone is so insensitive. Some people are lovely and very often when you speak to them they have a niece/nephew, a child or someone close with disabilities themselves so understand what you are going through. Some people probably don’t even mean to be rude. I do remember one day being out walking with James at the seafront. On this occasion he was behaving perfectly well and he stopped by a lady sat on a bench looking out to the sea. He stood 2 feet in front of her but she kept a fixed gaze straight past him and she totally ignored him desperately waving at her. How hard would it of been for her to just say hello? She didn’t. I took James by the hand and I said loudly, “Come on the lady doesn’t want to speak to us.” 

I couldn’t help myself.   

“There’s a story behind every person. There’s a reason they are the way they are. Think about that before you judge someone.”  Anonymous.