Parenting a deaf child with additional needs is similar and different to parenting any other child. Where there are differences, there are usually challenges, so support and advice from other parents is often invaluable. The following information contains a range of useful advice and tips from parents of deaf children with additional or complex needs.
"Be around when required. Don't wrap them in cotton wool but at the same time guard them against danger." (Colin and Marion, parents of Helen (age 5) - learning difficulties and poor concentration)
"I mention her needs in a round about way, dropping it into conversation as if it was the most natural, normal thing without putting any emphasis on it at all!" (Lesley, mother of Natalie (age 17) - CHARGE Syndrome, partially sighted)
"Meeting other parents is essential to parents' emotional well-being. Despite being very busy I always give priority to events where I meet other parents." (Marie, mother of Alister (age 11) - Moderate hearing impairment and autism)
"Even if children have different disabilities the impact is the same. I used to be quite shy with strangers but Grace's disability has brought me out of my shell. I'm not scared now to say how I feel which is important and healthy for all parents with children with disabilities." (Dina, mother of Grace (age 3) - HDR or Barakat Syndrome)
Communication is an important aspect of family life. In some cases it may be hard to identify how a child is communicating. Parents are best at understanding their own child.
A child may communicate by facial expression, using objects or pictures, symbols, signs, gesture or speech.
The successful development of communication skills supports all other aspects of parenting a child with additional or complex needs. No single method of communicating is better than any other - the important thing is that it works for you and your child.
"I tend to talk to him loudly using basic words in a one-to-one scenario. I also find hand gestures useful for communicating, for example, holding my hands out to him for him to sit up or show him a face cloth when I am going to wash his face so he knows what is happening.
Because Paedar is deaf and has sight impairment he seems to respond very well to smells. Even though he is on a special diet and eats at different times to us, but he seems aware of when we are eating through what he can smell. He opens his mouth as if he is waiting for food and communicates with us in this way." (Bernadette, mother of Paedar (10) - Down syndrome, epilepsy, sight impaired)
"Communication is simple. By talking to him and showing him different things he knows what we are talking about. For example, if we show him a ball he knows it is time to play, and if we show him a cup he knows it is time to eat or drink. We have been working together with Jonathon for so long now that we know what he is trying to communicate, so it gets easier." (Samuel and Linda, parents of Jonathon (11) - Epilepsy and low muscle tone, cannot walk or talk)
"In order to communicate with Jonathon initially we needed to use very basic signs, for things like car and drink. We couldn't live without them! Pictures are brilliant for telling them where they are going and what they will be doing, although it may be different for different children." (John and Teresa, parents of Jonathon (9) - Down syndrome)
"I use a lot of facial expressions to show my praise along with thumbs up ("Good stopping" etc.). I always tell him what he has been good at." (Sally, mother of Ben (6) - Asperger's Syndrome)
"Learn basic signs and sign to the child from the earliest possible stage. Continue and reward for any form of understanding." (Michael, father of Callum (age 5) - Athetoid cerebral palsy and renal failure.)
Carole who is the mother of George, aged 20 months, shared a lot of tips about communication with us. George has Down syndrome and low muscle tone.
"George's favourite activities are singing games with actions. Because of his signing he is very in tune with hand movements and watches intently. He loves Heads, Shoulders, Knees and Toes. At first we found this hard to do because he will find it difficult to say 'shoulders' and it is more difficult for George to point to his shoulders, so we changed it to "heads, tummies, knees and toes." Don't underestimate the power of repetition. Recently on holiday my friends' children attempted to teach George his favourite song, and solely through repetition, he had learnt it after two weeks. It takes him longer to pick it up, but he can do it now. Other children are a great help because they do not tire of something the way adults might!"
"Use realistic coloured toys. For example, do not present your child with a blue sheep - it is too difficult to explain and hard for them to understand the difference when they are presented with the real thing."
In the speech therapy classes designed for children with developmental delay, I was expected to sit behind my child, but doing this meant I missed him signing to me. Children with additional needs have a time lag. If I waved to George, he may not wave back for ten minutes. At first I would miss him waving and thought he could not do it. It is hard, but you need to learn to work at their pace, not yours."
Can your child choose which drink, which food, which toy and so on? Parents with a child with additional needs were asked for practical suggestions they use.
This is a challenging area. For some children road safety will be a real issue, for others it may be eating something dangerous or choking on a meal. Every parent knows the value of teaching your child to be aware of danger, and parents of deaf children with additional or complex needs have said that this is an area where there are likely to be problems. Parents have developed strategies and found a range of useful and practical resources.
"Jonathon has no sense of danger. He doesn't understand danger." (Samuel and Linda, parents of Jonathon (11) - Epilepsy and low muscle tone)
"For safety in public you have to be constantly aware of where they are and what dangers are around. If necessary hold on to them. Jonathon wouldn't stop to think if something were dangerous. You have to go over it again and again." (John and Teresa, parents of Jonathon (9) - Down syndrome)
"We need to take a lot of precautions with Paedar because he is epileptic. It is vital to keep him in a safe environment and to have an adult with him at all times. We have carpet in all the rooms in case he has a fit and the corners of the fireplace are padded to prevent him hurting himself. When buying new tables and chairs we have to be careful that the legs are rounded so that he does not hurt himself. It is impossible to guard them against everything." (Bernadette, mother of Paedar (10) - Down syndrome, epilepsy, sight impaired)
"Have lots of locks on your house, especially window locks. The need for these have eased now Ben is 6 but it has only been in the last year that we can relax a little." (Sally, mother of Ben (6) - Asperger's Syndrome)
"Use toddler harness/reins when out, put locks on windows, make sure the garden is secure and the gate is difficult to open. Use the child lock on the rear car door and employ general accident prevention as per any young child." (Colin and Marion, parents of Helen (age 5) - learning difficulties and poor concentration)
"We find portable CCTV is great as it enables us to have a camera in Carmel's room while she is sleeping and we can keep the monitor wherever we are in the house. It saves us running up and down the stairs if we need to check on her. We can remain constantly aware that she is OK, and she can still have her own space." (Eileen and John, parents of Carmel (17) - Epilepsy, cerebral palsy, orthopaedic abnormalities)
"I use a harness when Grace has refused to hold my hand. As soon as I put it on she's as good as gold and cooperates wonderfully." (Dina, mother of Grace (age 3) - HDR or Barakat Syndrome)
"Always tag your child when out with a wrist band with vital contact details - my child being deaf and autistic could not offer any information. He would not have been distressed when separated from us so it would have been hard for people to know he was lost. We lost him on two occasions on holiday, it was very frightening." (Sally, mother of Ben (6) - Asperger's Syndrome)
It is important that your child can communicate their emotions to you. Barriers to communication often prevent this taking place effectively. Parents of deaf children with additional or complex needs stress the importance of finding some way in which to discuss emotions, even at young ages. In this section our parents suggest a variety of strategies including, connecting with emotions through stories and books; using facial expressions and gestures; and making sure you include emotional vocabulary when developing communication.
"Ben used to get upset about crying, he didn't like his tears. I always explained to him what he was feeling. Ben's sad so that he could understand what he was feeling." (Sally, mother of Ben (6) - Asperger's Syndrome)
"When George is tired he takes his hearing aids out and puts them beside him as if to say, That's enough for today. " (Carole, mother of George (20 months) - Down syndrome and low muscle tone)
"We know the difference between his cries. He has a different cry when he has hurt himself compared to when someone has taken his toy. We can tell he is hungry by his cry." (Samuel and Linda, parents of Jonathon (11) - Epilepsy and low muscle tone)
"Dealing with emotions can be very frustrating. Jonathon couldn't understand what he is feeling and we found books and stories very helpful to show him that others may get upset or angry in a particular situation. This helped him to understand what he was feeling." (John and Teresa, parents of Jonathon (9) - Down syndrome)
"I say, 'I know you're upset/angry/frightened.' Alister will often calm down when I say this and come to me for a cuddle." (Marie, mother of Alister (age 11) - Moderate hearing impairment and autism)
"Use Makaton to reaffirm a particular emotion, i.e. scared - show examples of a character in a book or television program being scared." (Dina, mother of Grace (age 3) - HDR or Barakat Syndrome)
"I always allow my child to express his emotions (in the appropriate environment). We have talked about it afterwards and discussed better ways to improve frustrations or emotions." (Jayne, mother of Scott (9) - Hydrocephalus and learning difficulties)
"I gave Natalie a diary for Christmas so that she could put all her thoughts down. Animals bring out the best in children. Also puppet gloves encourage them to share their feelings." (Lesley, mother of Natalie (17) - CHARGE Syndrome, partially sighted)
"Body contact (i.e. a cuddle when frightened/hurt) and eye contact can help children deal with their emotions." (Colin and Marion, parents of Helen (age 5) - learning difficulties and poor concentration)
"Use happy/sad teddy bear puzzle to talk about emotions Trying to use the appropriate words in everyday situations, e.g. 'See that little girl crying? She is sad.' 'You broke the ornament. Mummy is angry.' 'We are at the seaside. Are you happy?' etc. We try to use the appropriate words to express emotions at the time." (Jeanette, mother of Aidan (7) - severe learning difficulties and global developmental delay)
"Read to them. Use drawing and mirror faces to help them to understand emotion (e.g. happy/sad). Use puppets to express feelings and story telling. Children feel less threatened speaking to a puppet rather than an adult. Puppets can be silly! Repeating back his emotions to him when you read them, i.e. 'David is smiling. He must be happy.' 'Libby is crying. She must be sad." (Peter and Delilah, parents of David (age 4))
Independence means different things to different children. It may mean learning to feed yourself, choosing what you wear or going on the bus by yourself. For parents, the challenge can be to let children gain independence. Stepping into the unknown can be frightening for you and your child.
"As a working mother, my child has attended a variety of clubs/play schemes in the holidays and I think this has helped him to be confident with strangers. Despite his autism he is happy to be in the company of other people." (Marie, mother of Alister (age 11) - Moderate hearing impairment and autism)
"Celebrate all the 'small achievements' as though they are 'huge' because they are really!" (Eileen and John, parents of Carmel (17) - Epilepsy, cerebral palsy, orthopaedic abnormalities)
"It is slow and it is hard not to overprotect, but just letting them do little things that terrify you can give them a huge boost of confidence when they succeed, and to let them know you have faith in them." (Teresa, mother of Juliet (9) - Leopard's Syndrome including heart disease)
"We always look out for things our son is good at, however unusual or unexpected, and help him to practice, and praise him. He takes great photos so has unrestricted use of my digital camera, which he hasn't broken - yet!" (Annabel, mother of Freddie (7) - Down syndrome)
All parents enjoy having some time to simply relax. When a deaf child has additional needs, such time may be particularly difficult to find. Children may need help with feeding, moving or toileting, or have a complex medication routine or demanding behaviour. Sleep patterns may be very disturbed. Parents may feel physically and emotionally drained. Here parents underline the importance of making time for yourself and tell you how they manage it.
"I enjoy time to myself - asleep!" (Carole, mother of George (20 months) - Down Syndrome and low muscle tone)
"You should not feel guilty for relaxing when you can grab some time. In the afternoon for instance, book a massage and always say you deserve this. As someone once told me, 'You can't give if you have nothing left.' Always take time to restock your energy levels." (Sally, mother of Ben (6) - Asperger's Syndrome)
"When taking time to ourselves we relax without the children needing supervision, take part in our hobbies and watch adult TV in peace." (Colin and Marion, parents of Helen (5) - Learning difficulties and poor concentration)
"I leave all the children with my husband for two weekends a year and go away on my own - ideally to a health farm. I save up every month over the year. The children live on junk food for the weekend but seem very happy to survive without me." (Annabel, mother of Freddie (7) - Down Syndrome)
"Going out for a run or a walk. Visiting a museum or gallery. I can think of many things to do, if only I did get the time! Both of these activities can focus your mind on something other than your situation." (Donna and Simon, parents of Oliver (2) - Cerebral palsy, epilepsy and learning difficulties)
"Sit down with a cup of tea and watch TV uninterrupted, go out for lunch with friends, go to the cinema, go for a swim." (Marie, mother of Alister (age 11) - Moderate hearing impairment and autism)
"Deep breaths. Count to ten." (Jayne, mother of Scott (9) - Hydrocephalus and learning difficulties)
"Do something totally absorbing which allows you to switch off from everything - for me, it's gardening, exercise, card making and sewing." (Sally, mother of Ryan (8) - Ocular cerebral hypopigmentation syndrome)
"Going out with friends and being able to relax and talk without constant interruptions or keeping one eye on the door, looking for potential danger." (Jeanette, mother of Aidan (7) - severe learning difficulties and global developmental delay)
"As hard as it may be sometimes, try to remain calm. Evaluate the situation and talk about it afterwards. If possible, and there's another person around, ask for a break. You're not being a bad parent." (Dina, mother of Grace (age 3) - HDR or Barakat Syndrome)
Parents have told us about many different types of support, both their own family, other families and from services. Some of the most useful practical advice comes from other parents. As many families meet a range of professionals they share hints on how to get the most out of services for your child. Parents stress the importance of self-trust and of staying in charge of the situation.
"Our Speech pathologist put us into contact with other families with deaf children with additional needs. It is important to meet someone who knows exactly what you are going through." (Carole, mother of George (20 months) - Down Syndrome and low muscle tone)
"Go with your instincts regarding your child's health. Professionals always give a worse-case scenario. Go with your belief as you know your child and live with him 24/7 whereas a professionals sees the child only on occasion for half an hour." (Michael, father of Callum (age 5) - Athetoid Cerebral palsy and renal failure)
"Try and keep them all up-to-date with each other. Don't put them on a pedestal; they are only doing a job. Don't be frightened to ask questions. Ask for help or be referred to others." (Colin and Marion, parents of Helen (age 5) - Learning difficulties and poor concentration)
"Keep a file with all letters from professionals, so if they ask for names, etc., it's all together. Ask professional questions - tell them what works and what doesn't." (Jayne, mother of Scott (age 9) - Hydrocephalus and learning difficulties)
"Try to keep a notepad handy in the house in order to write down on a regular basis things that will be discussed with professionals. You can't always remember details so it is good idea to keep a diary of events." (Sally, mother of Ben (age 6) - Asperger's Syndrome)
"Be confident with them. Most have been helpful but I have found it distressing if they had not read the notes before seeing me and her." (John and Rosemary, parents of Susannah (age 24) - Multiple disabilities)
"Be armed with knowledge if you can. Question fully, don-t be fobbed off, trust your intuition. Stand your ground. Ask 'why not,' and expect a sensible answer." (Eileen and John, parents of Carmel (age 17) - Epilepsy, cerebral palsy, orthopaedic abnormalities)
"Be prepared. Take a list of questions with you. Be yourself. Be friendly. They are just normal people who may be able to help." (Sally, mother of Ryan (age 8) - Ocular cerebral hypopigmentation syndrome)
"Always remember that you are the expert on your child and that professionals often have very narrow areas of expertise. Be assertive when dealing with professionals and don't be afraid to question their advice. Listen to what all professionals have to say and then make your own mind up about whether to act on that advice. Be weary about professionals giving advice/opinions outside their area of expertise, e.g. educational professionals giving health advice and vice versa." (Marie, mother of Alister (age 11) - Moderate hearing impairment and autism)
"Remember you know your child better than anyone. Have the courage to say no. Don't accept the 'tried and tested' if you are convinced it's not right for your child." (Carol, mother of Charlie (age 14) - Attention Deficit Hyperactivity Disorder and language disorder)
"Don't be intimidated. You know your child better than they do. They are humans with lives too and everyone's goal should be best for your child." (Teresa, mother of Juliet (age 9) - Leopards Syndrome including heart disease)
"Always question them on any issues you dispute or do not understand. Use them as a resource, build a good relationship with them and remember that you are the expert on your child's ability." (Norma, mother of Conor (age 10) - Cerebral Palsy and diabetic)
"Other parents of special needs children will be happier to let you talk about your feelings and will understand better than parents of non-disabled children." (Sally, mother of Ryan (age 8) - Ocular cerebral hypopigmentation syndrome)
"Meeting other parents can and does help. However, just because you have this in common doesn't necessarily mean your outlooks will be similar." (Donna and Simon, parents of Oliver (age 2) - Cerebral palsy, epilepsy and learning difficulties)
Please note: The parents' views are their own and not necessarily endorsed by the National Deaf Children's Society
16-Nov-2015 6:26 AM (AEST)