Handing Over the Dictionary

Every parent of a child who does not use words keeps a dictionary. Nobody sat down and wrote it. It was learned over years, one meal and one bad night at a time. A low hum means content. Hands pressed over the ears mean the room is too loud. A body that goes stiff and turns towards the wall means no. Biting the side of a hand can mean pain somewhere, or fear, or a day that has gone on too long. Some children say a few words, some sign, some point to pictures on a card or a tablet, and many use all of these on different days. Each family’s dictionary is different, and every one of them is a real language.

At a crowded family dinner, a father sees his child rocking faster than usual and takes them out to the verandah before anyone else has noticed a thing. An aunt watches him go and says, fondly, Only you understand this one. She means it as praise, and she is right.

But a child who needs help with the bath, the toilet, changing clothes and, for many older girls, periods, has a lot of people around them in a week. There is the attendant at home and the therapist on Tuesdays. There is the helper at school, the driver and the escort in the van, a grandparent, an uncle, a cousin who sometimes steps in. If only one person in that circle can read the child’s no, then for most of the week, nobody can.

Families who share the care are doing the right thing, and most of the people who help do it with real tenderness. Harm comes from a person who chooses it, and the blame always belongs to that person. What a family can do is make sure the child’s language goes everywhere the child goes.

Where the risk comes from

Researchers have pooled the studies from around the world twice, in 2012 and again in 2022, when the review took in 98 studies. Both times, children with disabilities faced roughly two to three times the odds of sexual violence that other children faced. The studies covered many kinds of disability, including children who are blind or Deaf, children with physical disabilities, and children who are autistic or have an intellectual disability.

UK government guidance for people who work with children with disabilities sets out the reasons in plain terms. These children often need help with the most private moments of daily care, sometimes from several adults. Many find it hard to tell anyone, or have nobody they trust enough to tell. And when their behaviour changes, the adults around them tend to put it down to the disability and look no further.

In Israel, researchers studied more than 40,000 interviews with children after suspected abuse. The children with disabilities were less likely to tell, and more likely to tell late. They were also more likely to have been abused by someone in a parent’s role. In India, the health ministry’s 2014 guidelines for doctors describe the same trap for women and girls with disabilities. They depend on caretakers who may also be the ones harming them, and when they do report, they are often not taken seriously.

How often this happens in India, nobody can say. The national crime records count child victims by age and by state, but not by disability. In 2019 a United Nations committee raised concern that India’s crime records had no such figures, even for women and girls with disabilities. So these children are missing from the very numbers used to plan help.

Seva that includes the door

Much of the care in this house is seva. It is sewa in Punjabi, sevai in Tamil, seba in Bengali, and in Urdu the word is khidmat. Indians use it for care given without counting, to an elder or to anyone in need. Many families of children with disabilities have given it every single day for years.

Seva at its best has always had a second half. The person being served keeps their dignity. Nobody is hurried or handled like a parcel, and the one giving care does not decide everything alone. For a child whose body is in other people’s care, that second half matters most. In practice it means the child is told what is coming and given time to answer.

Most homes already have unspoken rules about who helps with the bath. Say them out loud, and make them the same for everyone:

• Name the people who help with bathing, the toilet, dressing and periods. A new helper does not do this alone until the family knows them well and has watched them do it.
• Before each step, tell the child what you are about to do, in the words or signs they know, and wait for their sign before you go on. Let them do as much as they can themselves.
• Close the door for the child’s privacy. But this care is never secret, and someone else in the house always knows it is happening and who is doing it.
• In schools, therapy centres and vans, ask that intimate care happens with another adult within call, and that the child is not left alone with one adult for long stretches.
• Nobody takes photos or videos during care, for any reason, and nobody makes it into a game.
• When the child shows stop, everyone stops. If something truly must be done, explain first and go gently.

Where you can, let the child choose who helps them, and listen if an older child would rather have someone of their own gender. These rules protect honest helpers too. A good attendant or teacher has nothing to lose from them, and many will be glad the family has said them plainly.

Write it down and hand it over

The dictionary in your head is precious, and it is in only one place. This week, put it on a single sheet of paper. At the top, write how your child shows these things, in their own way:

• no and stop;
• it hurts;
• I’m frightened, or I don’t like this person;
• I’m happy and I’m calm.

Below that, write what is ordinary for them, such as how they usually sleep and what they love or always avoid. Below that, copy the family’s rules for care. As your child grows, let them add to the page in their own way.

Then sit with each person who helps, one at a time, and go through it. Don’t only hand it over. Show them, the way you would show a new relative how to hold a baby: When my child turns to the wall like this, it means no. Stop, and wait. Do it before any new person’s first day, and this week for the ones who are already there. Give a copy to the school and to the van, and ask both what their own rules are for helping children in the toilet.

Your child needs the other half of this too. Children with intellectual disabilities can learn body-safety rules; a small study at a government medical institute in Odisha found clear gains after lessons for 20 such children. Use the words or signs your child already has, with pictures if they help, and repeat them as often as any other routine: Your body is yours. If you don’t like something, show stop.

Then practise stop in ordinary life. When your child pushes the spoon away and you put it down, that is a lesson. Many therapies reward a child for following instructions. Ask the therapist to also teach a clear stop sign and to respect it in every session. A child whose small refusals are honoured learns that their body belongs to them.

If you have been the only one who could read your child, it is because you learned what nobody else took the time to learn. Writing it down simply lets others learn it from you.

When behaviour is the message

For a child who cannot explain, behaviour is how they tell. Take a new change seriously, especially when it is one of these:

• a new fear of one person, one place, the bath, or the van;
• going back to wetting or soiling after being dry;
• more biting, hitting themselves or rocking than usual, or new trouble sleeping;
• pain or soreness you cannot explain;
• new sexual behaviour that is not like them.

Each of these has other possible causes, from an ear infection to the start of puberty. What matters is that you look, and do not tell yourself it is just the condition. See your child’s doctor this week and say exactly what you have noticed.

If anything makes you fear your child is being harmed, do not wait, and do not handle it inside the family. Call 1098, the national child helpline, free at any hour, or 112 if your child is in danger right now. If your child tells you something with their words, signs or cards, listen and believe them. Write down exactly what they showed you and when. But do not go looking for details with picture cards or yes and no questions; leave the questions to people trained to ask them. The law requires anyone who knows a child has been sexually harmed, or fears a child will be, to tell the police, and 1098 will connect you to them. The law protects anyone who reports in good faith. For your own child, report in your own name, so your child gets every protection the law offers.

The law has thought about children like yours. POCSO treats sexual harm that takes advantage of a child’s disability as a more serious crime. The child’s statement can be recorded at home or at a place the child chooses. The police, the magistrate and the court are allowed to bring in a special educator, or a person who knows how the child communicates, to help the child be understood. Ask for this by name, because it is not always offered. You can sit with your child as the person they trust. If someone in the family is accused, ask for an independent special educator to do the interpreting, and give them your page. In 2021 the Supreme Court of India said that the testimony of a person with a disability “cannot be considered weak or inferior, only because such an individual interacts with the world in a different manner.” Take your sheet of paper with you.

If harm has happened, your child will need support for a long time, and it has to fit them. Look for a counsellor who has worked with children with disabilities, and keep familiar people and routines close. Distress can come back months later, in sleep or in behaviour, and that does not mean recovery has failed. Where you can, give your child a say in who helps them and how, within the duty to report.

None of this can stop a person who has decided to harm a child, and the blame for harm always stays with that person. But on a Tuesday afternoon with a therapist your child likes, or on a Friday in the van with an escort who has read your page twice, the people around your child will be able to understand them when they say no. The seva this family has given for years now travels with the child.

If a child is in danger right now, call 112. If a child has been harmed, or you are worried about one, call 1098, the national child helpline, free, any time of day. For emotional support, iCALL offers free and confidential counselling on 9152987821. This is a hard subject. If it is close to you, you do not have to carry it alone.