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Communication for parents of children with a disability

A mum and daughter embracing

If you are a parent of a child with a disability, you would know that there are many different challenges that come up every day. One common challenge is communication that we will explore in this post.

This blog post aims to provide you as a parent with some helpful communication tips for your child’s needs. We’ll unpack how to communicate effectively, what not to do, and essential considerations when communicating with your child’s teacher. Then, we’ll look at what else you can do to support you as a parent.

Communication can be difficult at times, but it is one of the most important things that you can do as a parent! It’s important for every parent to step up to the challenge of improving their communication skills to better understand their child, and to create a supportive environment.

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Yes we can process your NDIS invoices, remove time-consuming paperwork and let you track your spending through the My Plan Manager Client Portal. But we also help you make sure that your child is getting the support that they need, and not missing out on important items that can really make a difference to their plan goals. 

A mum and daughter playing and laughing
Mum and daughter playing and laughing

Parents and their children with special needs

Sometimes, a child with a disability may not communicate in a conventional sense. For instance, some children with Autism may not speak, though being nonverbal can also be a trait of other types of disabilities. In these cases, you may want to resort to using a system to communicate for you and your child.

You can ask your child to point to a picture, utilise sign language or use high tech communication devices or applications. Find out what makes your child most comfortable and expressive. For example, you may need to “listen” with your eyes rather than your ears.

Listening shows that you are empathetic, an essential part of communicating with your child. Showing empathy can help lessen frustration and anxiety that your child might be feeling.

If you appear understanding, optimistic, and reassuring, your child might be in a position to better cope and to work with you to form strategies designed to help them – and you – succeed.

Communication: Parents and Special Education Teachers

Once of the most critical things that you can do for your child’s education is to communicate with their teacher. While this is applicable in all cases, not just for children with special needs, it can be even more crucial when a child has a disability that can impact their learning. Be sure to ask your child’s teacher about their progress and talk about their specific needs like if for example they tire easily or need to take frequent breaks.

Listening is as essential during these conversations as it is when interacting with your child. For example, the teacher may need clarification. The child may be struggling with a specific topic or problem. The teacher could have noticed particular behavior in the classroom that might differ from what your child shows at home. If their feedback sounds harsh, chances are they’re not being judgmental or critical – we encourage you to listen with an open mind.

You might also want to extend your communication outside the classroom. For example, you can, and in some cases should consult a Special Education Advisory Committee (most districts have one), administrators or school psychologists.

When it comes to special education and communication, chances are you can never have said too much; an ongoing dialogue can ensure that you, the parent and your child’s education system are at all times on the same page.

Parent relationships: children with disability, ASD and additional needs

Key points

  • There are great things about raising a child with additional needs. But it can bring new challenges to your relationship.
  • Talking openly and valuing your time as a couple can help keep your relationship strong.
  • It’s essential to work as a team and share the overall workload of childcare, domestic chores and paid work.

Positive changes in your relationship when your child has additional needs

There are lots of great things about raising a child with additional needs. First, it can make your family stronger. You might also find that you share parenting responsibilities more and talk more with your partner.

You and your partner might see your child’s additional needs differently, which is normal. This might mean you deal differently with your child’s behaviour and relate to them differently, which can be a positive.  You might get lots of new ideas from the different ways you approach things.

To have a strong parenting partnership, you need to talk with each other about your views and feelings. Sharing your feelings can help you feel good about your relationship. And when you make time for regular catch-ups to address how you’re feeling, it can also help you work together as a parenting team.

New challenges for your relationship when your child has additional needs

Caring for a child with special needs can also bring new challenges and more pressure. Working together as a team to find solutions can help you to handle these challenges.

Finances

You might find that you have to pay for transport, equipment, medical bills or essential changes to your house, which can strain your finances. If you can, try to make decisions together about areas where you can save money.

You can contact the National Disability Insurance Scheme on 1800 800 110 to find out about getting financial support. You can also contact your state disability service for information about financial aid.

Changes in employment and family roles

One or both of you might need or choose to cut your working hours to care for your child. This can change the way you divide up household tasks. You can talk together about balancing the workload with your partner and look at flexible working hours or job options.

If you’re staying at home to look after your child, try to participate in local community groups and activities. This can help you feel connected to your community.

Child behaviour

Children’s behaviour can be stressful for any relationship. If your child’s behaviour is challenging, it can help decide how you’ll handle it so that you’re consistent. Again, talking about this regularly is a good idea.

A psychologist or disability specialist can help you plan appropriate behaviour strategies for your child.

Quality time

Having a child with additional needs can mean that you and your partner have less quality time together. However, spending time together and doing things you enjoy as a couple can bring you closer – and remind you that you are people, not just parents!

A family member or friend might be able to babysit, or your local disability service might be able to help you find respite care or babysitters who are trained in looking after children with additional needs.

A family enjoying a meal together
Mother holding her baby boy.

Looking after yourselves and your relationship

It’s easy to get caught up in looking after your child’s needs, but looking after yourselves is essential too.

Part of looking after yourself is finding time to do things you’re interested in – as individuals and as a couple. It might be sport, music or social groups. A bit of time out helps you feel good – and when you feel good yourself, you’ve got more energy to put into your relationship.

Raising children is a big job for anyone, and raising a child with additional needs can mean an even more significant workload. Of course, you and your partner don’t have to do the same things, but sharing the overall workload of childcare, domestic chores and paid work is essential.

You could think about doing a weekly chart of duties and responsibilities to make sure things are fair. This can also help you make time each week for yourself.

Talking openly about your feelings is essential. Using ‘I’ statements can help you do this – for example, ‘I feel as though …’, or ‘I wonder if we could do this differently’.

And listening to each other without blame or judgment helps you give each other emotional support. For example, when talking about complex issues, you can show you’re listening by saying things like ‘I understand what you mean’ or ‘I didn’t realise you felt that way.

Working together on problems in your relationship

Conflicts and tensions happen in the strongest relationships, and having a child with special needs can add extra pressure.

Here are some strategies that can help you with handling conflict and problem-solving:

  • Make time to talk about things you’re worried about, just don’t do this in front of your child.
  • Sit down together and focus on what your partner is saying. Listen to your partner’s thoughts and feelings without interrupting.
  • Try to say exactly what the problem is. For example, ‘I feel like I’m not getting any time for myself. I haven’t been able to get out for a walk for two weeks’.
  • If you disagree with your partner’s statement, try to focus on the problem, not on your partner. For example, you could say, ‘I’d like to try a different approach this time.
  • Brainstorm lots of different solutions to the problem to see what might work best. You can also talk about what the answer might look like. For example, you could ask, ‘Are we both comfortable with this?’ or ‘Could we do this better?’
  • Ask how your partner is feeling after the discussion, and make sure that you both feel you’ve had a chance to say what’s on your mind.

Finding support

Support will help you deal with stress and workload. For example, perhaps you could get a friend or a family member to look after your child while you and your partner spend some time together.

Support can come from:

  • family members and friends
  • other parents of children with additional needs
  • peer support groups like MyTime
  • disability associations or community agencies
  • professionals like psychologists or relationship counsellors

When to get help to support your relationship

Learning about your child’s diagnosis and working through the challenges of parenting a child with additional needs can trigger feelings of grief for both you and your partner.

It can take time to understand your child’s diagnosis and process your feelings about your child’s additional needs. You might go through many different emotions – despair, guilt, denial, depression and eventually acceptance. These feelings don’t always follow a clear pattern, and you might feel all of these emotions at various times.

Every couple will deal with their child’s diagnosis differently. But your relationship might need attention if you experience the following:

  • withdrawal from each other
  • frequent arguments that you can’t sort out

If you’re worried about your relationship, the first person you should talk to is your partner. You can deal with many worries by talking openly – don’t be scared to talk about how you feel. You might also want to get in touch with a relationships counsellor or a psychologist.

Coping with your feelings about your child’s additional needs: tips

If they don’t at first, most parents and families eventually start to feel OK about their child’s different needs. They have positive emotions like love, joy, acceptance and satisfaction, and they start making new plans and having new dreams for their children.

These tips might help you manage your feelings if you are finding it difficult to cope.

Looking after yourself

  • Accept your feelings, whatever they are – don’t push them away. Acknowledging your emotions is a healthy thing to do.
  • Give yourself time.  If you feel sad, isolated, stretched or lonely, these feelings won’t stay forever, but they can come back from time to time – for example, at your child’s birthday, when someone in your extended family has a child, when there’s a family wedding or graduation, or when your child starts preschool or school. Over time, you’ll get better at recognising the feelings and putting solutions in place to deal with them.
  • Be kind to yourself. Take care of yourself and keep healthy.
  • When you’re ready, talk to people close to you, particularly your partner, about how you’re feeling. Try to accept that other people might have completely different feelings from yours.
  • Get to know other parents who are in similar situations. It can help talk to people who understand what it’s like to have a child with additional needs.

Enjoying time with your child

  • Try to avoid comparing your child with other children. Every child is an individual.
  • Celebrate successes and milestones – yours and your child’s – and focus on positives and progress. Your child might be developing differently from other children but will be reaching their own goals and milestones along the way. There will be lots of reasons to feel positive.
  • Recognise when your child is happy and thriving, and enjoy these moments. You have done this as a parent.

Seeking help

  • Collect information about your child’s diagnosis from reliable sources like government, hospital and university websites. Unfortunately, not everything you find on the internet is based on reliable scientific research.
  • Seek professional support and information. Your local GP and community-based early childhood intervention services are good places to start.

For a while after the diagnosis, all I could see was his cerebral palsy. But, with time, it’s like I got Jack back. I almost stopped seeing the disability and starting seeing the person that we love and are raising.

– Parent of a teenage child with cerebral palsy

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