Antonia Chitty and Victoria Dawson have been researching how parents of children with special needs can protect their own relationship. Becoming a parent can be a difficult role to adjust to. Children don’t come with a manual and adjusting to your new arrival can put a strain on any relationship. When your child has an additional need this can bring huge pressures, both emotional and practical.

If your child has special needs you will know only too well about getting to grips with hospital and social care systems. You may be having an uphill struggle to get your child the education they need. If one parent is the main carer while the other needs to keep working you can feel that your daily lives are very different, which can lead to resentment. Money is likely to be tight and you may rarely get even a night off, let alone a holiday. Add all these factors together and it is no surprise that parents of children with special needs find their relationships under strain.

Early Days

Having a baby is a life changing experience and can put pressure on your relationship. This is especially true for parents of children with special needs. Many of the children Sense supports will have had very difficult early lives, perhaps undergoing surgery or remaining in hospital for long periods. Many parents describe this as a devastating time, full of uncertainty.

Lynn Wilshaw is a Relate Counsellor. She says that if you are finding parenthood difficult, you are not alone, ‘Most couple’s cannot imagine the impact that having a baby will have on their lives let alone their relationship until it happens.’ As new parents you get little time to talk things through, relax and enjoy each other’s company. At the same time, if you have concerns about your new baby’s health and development it may mean that this becomes your main topic of conversation. Your ‘old’ relationship is nowhere to be found and you have to work together and co-operate under difficult circumstances, including sleepless nights. Opportunities for sex can become non-existent. While some friends may be supportive, others simply no longer seem to understand what you are going through.

Pulling Apart

Once you know that your child has special needs, you may find yourself forced into making various unexpected life changes. If you both planned to go back to work, is one of you now the main carer? In a family where one parent takes the lead on caring, this experience can drive a wedge into any relationship. If you are the lead carer you can struggle with feelings of resentment. Leaving the house to go to work can seem like the easy option when at home you are faced with piles of washing, appointments to go to, struggles with transport and behaviour issues. At the same time the working parent can feel like they are missing out and don’t get to hear about what goes on during important appointments.

This breakdown in experience and communication happens all too easily.

You’re Not Alone

Contact a Family recently conducted research into how having a child with an additional need impacted on couples’ relationships. It surveyed over 2,000 parents from a wide range of backgrounds to find out the issues that they were facing. The findings suggested that many parents felt isolated and that there were many issues that impacted on their lives including:

• having little time to spend together
• financial pressures
• employment difficulties
• lack of support and understanding from professionals
• lack of sleep and exhaustion.

The research highlighted that those couples parenting a child with a disability are at greater risk of developing problems within their relationship, due to the added pressures that they face.

Feelings

As Sense parents will testify, when you have a child with special needs your life can suddenly take on a new level of complexity, leading to all sorts of emotions. Scope has developed the idea of a ‘transitional rollercoaster’ which highlights the feelings you can feel as you face a life changing experience like looking after a child with special needs. Read about the different emotions to help you identify where you are at and encourage your partner to do the same.

This rollercoaster of emotion takes you from the shock and denial that you feel on first hearing that your child has special needs, through the numbness and grief of the first few weeks as you start to take everything on board. You can feel confusion and disbelief too, and you may be taken back to these feelings if your child has a setback or a new issue is picked up. At the bottom of the rollercoaster you can feel despair, sadness and depression.

Everyone knows, though, that rollercoasters have ups as well as downs. If you are in the depths, comfort yourself with the knowledge that things will get better. Most people will move from sadness and depression to feeling less isolated. You can enter a phase of relief, feeling ‘It’s going to be ok. I can see a way forward.’ Then, you can even experience delight, joy and laughter. Eventually you can enter a phase of feeling informed and coping well.

Once you understand a little more about the emotional journey that you are going through, you can talk to your partner more easily about how you feel. But don’t expect that you and your partner will always feel the same way - you may have different feelings at different times. For example, one of you may be experiencing feelings of intense grief at the loss of the child that you had imagined, whilst the other is finding it hard to accept that the child has a problem.

This difference in feelings and emotions can lead couples into crisis as it is easy to think that because your partner isn’t sharing your feelings, they don’t care. It is important to talk about your feelings with your partner. No two people are going to feel the same and just because your partner is reacting in a different way to you doesn’t mean that they aren’t hurting.

Men and women generally communicate differently which can add to couples’ difficulties. Women tend to be more up front with their emotions and openly discuss how they are feeling. Men however can function more as problem solvers and may become frustrated if they cannot provide a solution to the child’s disability. Counselling can help couples to explore their feelings in a safe and secure environment which will allow you to strengthen your relationship.

How to get counselling

• Talk to your partner. The idea of counselling usually comes from one partner and it can take time for the other to come round to the idea. Look for leaflets about the benefits that you can talk through together.
• Your GP’s surgery is a good place to start looking for a counsellor. Unfortunately not all surgeries offer counselling but if yours does you should be able to get a number of sessions free of charge. Ask if the counsellor has specialist expertise in couples counselling.
• Contact your local Children’s Centre. In some areas they may be able to put you in contact with a counsellor, again for a limited number of sessions free of charge. Ask if the counsellor has specialist expertise in couples counselling.
• If you are able to pay towards your counselling, Relate is the leading UK organisation for couples counselling. It offers face to face, telephone and email counselling. You can find out more about local availability and fees at www.relate.org.uk. Some Relate centres offer subsidised sessions, but fees are set locally.
• The British Association for Counselling and Psychotherapy, www.bacp.co.uk, lists private counsellors and you can search their database for those with relationship counselling expertise.

Listen Carefully

It is vital for couples to communicate effectively in order to keep their relationship healthy. When you have a child with a disability you may well find that you have more issues to face and less time to communicate.

Listening is an essential skill to develop in order to maintain a happy relationship. Of course this is far from easy when you are under a lot of stress, but it is vital that both partners feel listened to in order for a relationship to be successful.

Rachel has a child with an additional need and expresses her frustration at not being listened to, “My marriage ended recently and the main reason was that my husband did not listen to me. Whenever I tried to bring up a problem he went on the defensive and tired to blame me for the difficulty. I wasn’t looking to blame anybody, just to express how I felt and I wanted to be heard.”

Tips for effective listening

• Turn the television off and make time to listen.
• Focus on what your partner is saying and don’t become distracted.
• If you are distracted suggest that you discuss things at another time when you can give them your full attention.
• Try not to interrupt what is being said, even if you don’t agree.
• Check that you have understood what someone is saying, summarise what you have heard and ask if you have got it right.
• Don’t immediately try to ‘fix’ the situation by offering solutions. Often your partner will begin to feel better just because they have been listened to.
• Remember, listening is a skill that has to be worked on!

Communicating clearly

Sometimes it can be difficult to openly say what you mean, particularly if it is related to your child and their additional needs. You may not want to admit to how you are really feeling for fear of upsetting your partner or because you are struggling emotionally yourself with your feelings.

If you are finding it difficult to say what is troubling you, you could try writing a letter to your partner and sitting down with them while they read it. If you feel more comfortable speaking with your partner you could try writing a list of the points you want to cover during the discussion to make sure that you don’t miss anything out.

Make sure that when you do speak with them you always try to be respectful and to avoid insults or accusations. When you are in a difficult situation it is very tempting to find someone to blame. Blaming others is a natural thing to do but can increase your stress levels and damage your relationship. Take some time to acknowledge how you feel; it is OK to feel angry, sad, anxious and a whole range of other emotions. It is good to express these feelings but in a way that doesn’t hurt those closest to you.

Julie tells us, “I used to get really angry inside after we’d been to an appointment. I wanted answers and nobody could give them to me. Why was my little boy visually impaired? Who was to blame? When the professionals couldn’t give me the answers that I craved I turned the blame onto myself and my husband. Perhaps it was something that I’d done wrong in pregnancy? Maybe it was genetic, after all my husband’s sister has problems with her vision. After counselling I started to realise that this approach isn’t healthy for our relationship. I still feel sad and sometimes angry after appointments but now I express this openly and in a more positive way. I sit my husband down and tell him, `I’m feeling really down after seeing the Consultant,’ and I explain to him why I feel down. He knows now to listen and not to try to offer solutions or try to make me feel better.’

Intimacy

Intimacy plays an important role in healthy relationships. Sometimes when you are parenting a child with an additional need you are too busy to invest in developing this side of your relationship.

Intimacy does not have to mean sex; it can mean emotional intimacy too. If you are exhausted and cannot even begin to think about the sexual side of your relationship then consider touch as a way of bonding with your partner. Holding hands and cuddling can help you to instantly feel more connected with each other. You may want to offer each other a massage or a foot rub. Setting aside 15 minutes each day to catch up with your partner can help to put your relationship back on track. Ask each other what kind of day you have had and listen respectfully without interrupting. End the conversation with a hug.

Celebrating the positives

There are many positive steps that you can take as a couple to strengthen your relationship. You could take some time to discuss this article with your partner and be proactive in working out steps together that you can take to ensure your relationship stays strong.

It is also important to take time to reflect on the positives of parenting your child and the joy that this brings you as a couple. Reflect on how well you are doing, not only as parents but also as partners. Celebrate your child’s achievements, no matter how small they may seem. Keep your relationship alive by talking, enjoying activities together and remember that you are also lovers, not just parents.

About the authors

The rollercoaster was developed for Scope's Strengthening Families training package which aims to train professionals to support parents’ relationships.

Victoria Dawson has worked with children with special needs and their families for ten years.

Antonia Chitty is an experienced writer who has worked in the field of visual impairment for a number of years

They have recently published Special Needs Child – Maintaining Your Relationship.
Published by White Ladder Press £12.99 ISBN 978-19054 1056 – 9