Some people may find it difficult to accept that your child has different needs. This could be for a short time or they could stay in denial. You may also feel that they’re judging you as a parent. Other parents of disabled children may find it easier to understand what you’re going through.
People may not understand what you or your child need. Saying what you need should help.
Sharing web links or printing off advice on your child’s condition can also help, particularly if the people you’re talking to find it hard to accept that your child is disabled.
The more people understand, the more they can help you. Say:
what your child’s condition means
how this affects your child
how they can help you
The parent of an autistic child might say:
“We’re only coming to the party for half an hour because that’s all he can manage. He gets anxious in large groups. He’ll feel more comfortable if no one speaks to him.”
“We can't just drop everything and go on holiday. The place has to be accessible, and we need to organise a carer to come to help at night. It’s weird having a stranger there, and it’s expensive.”
Talking about how you feel
Other people probably do not know what it’s like being the parent of a disabled child. They may feel that they have similar challenges sometimes, like maintaining a relationship or being tired.
How things are different for parents of disabled children
“I’m scared because he keeps having fits so I can’t allow myself to sleep. I’m so exhausted from being up all night, every night.”
“I’m finding it very difficult to cope with working and all the appointments my son has. We don’t know how long each appointment is going to take, and it’s stressful.”
“I feel so confused. There are so many things to cope with. There’s hospital appointments, medical jargon and equipment, when all we want to do is just quietly be with our baby and have a ‘normal’ life.”
“Sometimes I find it difficult to talk to my partner. They’re in denial about our child being disabled. I feel like I have to be the one to ask all the questions, all the responsibility seems to be resting on me.”
“I’m really worried about how this will impact on us financially. There’s no way I can go back to work, I’m going to have to be a full-time carer.”
“Having a disabled child has been a real shock for us. We didn’t ‘ask’ for a disabled child. Please don’t tell us we have been ‘chosen’ or our child has been sent to us for a reason because we are special.”
Be prepared for people not understanding
If someone is ignoring your child, try talking about things your child has done that you want to celebrate. This could be feeding themselves, eating something new, showing that they recognised you or communicating a ‘yes’ or a ‘no’.
People may also be too focused on their own lives. Some people can try to understand, but not everybody can. You may find that some friends or family become more distant or disappear. You may find new friends who have had a similar experience to you.
For children, reading a book that has a disabled character can help them understand. These books show how disabled children might need extra support, but can still join in and have fun.