Hello, my name is Marie. I have 2 daughter's, the youngest is Abbie (3) and we know there is something wrong. We have an appointment on the 27th Feb and I hope this is the start of getting some help and understanding and hopefully a diagnosis. After 18 months of research I have discover pathological demand avoidance, the signs and symptoms explain Abbies behaviour perfectly. Life can be extremely difficult, everything you ask of Abbie becomes a drama. Most days getting her to the school to take my eldest daughter is extremely challenging. Her meltdowns are extraordinary and quite frightening. She had a terrible episode in Sainsbury's yesterday, and after getting her out of the lift she laid on the floor and screamed at the top of her lungs. If I attempt to touch her or even carry her when she's in a state like this she will hit her head on the pavement so I have to be very cautious in my actions. If I do manage to pick her up I can't hold her for long and could drop her. I was dealing with it well, I was calm and felt she may be coming out of it slightly, then this woman appeared and starting having a go at me for allowing my child to be on the floor and making so much noise. She told me that I was doing everything wrong and need to pick her up immediately. I calmly explained that I couldn't do that due to Abbie hurting herself and then this Woman tried to pick Abbie up. I asked her repeatedly to leave me alone to concentrate on my child and that she was making me emotional and to please leave us alone. She went on to tell me that I shouldn't be dragging a small child round the shop and that they get tired and that this behaviour wasn't normal and must be my fault. She proceeded to tell me how she has children and grandchildren so she knows all about it. Eventually she left after I used a few harsher words. I was left on the floor in tears. I can't take much more of the filthy looks and ignorance that I receive, sometimes even from friends and family as well as strangers. I feel so alone and lost. I've never written on a forum before but I really need some support and it doesn't feel like there is any in my world at the moment
Hello Marie, I am new to this forum malarkey myself and find myself here for the very same reason as you.
My son is 10 years old and whilst not an official diagnosis (on the waiting list and likely to be autumn 2018 before he is assessed) we are told by our therapist that he is autistic (aspergers). On Saturday he had a meltdown in Tescos. Supermarkets seem to be particular triggers for children with sensory issues! My son reacted in exactly the same way as your daughter did but I was fortunate enough to not have to deal with "experts". Although I would very much have wished to have had some moral support from BlueRay.
The staff members who witnessed the struggle were marvellous and made sure I could see them standing by ready to be available if needed. My son is a big lad and I was having to physically restrain him to prevent him running out of the store and possibly into traffic. I was afraid to let him go in case he caused damage to property. He had already thrown down a toy he had taken with him. In the few times it has happened before I have been able to just hold him tight until he relaxes but not this time. The event was the worst I have had to deal with and left me shaken and upset. I was so upset because I felt I let him down. We have an individualised therapy programme and all the tools needed to deal with this and did none of it. I felt so guilty afterwards and that is so much worse than any embarrassment.
I have had a difficult week at work, been very tearful and generally unable to cope with life. I have discovered that I have a lot of work to do to ensure that we co-exist happily in my son's world and the little we have done so far (3 weeks into the programme) has made no difference. We still had to deal with this horrible incident.
I have since reflected on the situation and realise that however upsetting it was for me, my son was demonstrating his extreme distress at the chaos he continues to cope with every day. This set my resolve to do whatever I can, whatever it takes, to improve life for him. Having realised the enormity of the task and the changes I must make in my life to be able to cope I am still emotionally wrecked.
Marie, your daughter is still young and I am not in a position to offer you advice but think about any sensory issues she may have such as sound, smell and lighting. These are the most likely triggers when visiting a shop, particularly a supermarket. What appears to be a behavioural issue is likely to be caused by a sensory processing problem.
The two most important things that we have done for my son (our little family of three) is to de-register him from school to home-educate and pay for this individualised therapy programme. Those two things have made an enormous difference to my son's wellbeing but, as you have seen, do not prevent his susceptibility to the pressures he faces.
Thank you for writing about your incident because it has made me feel that I am not alone. I know your struggle and also know that you are doing your best. Keep on keeping on.