Stress and disabled children

Finding out that your child has additional needs can bring about a whole array of emotions. Getting a diagnosis might take some time – according to the Genetic Alliance UK, about 50% of children with a learning disability don't have a definitive diagnosis. Parents may worry or feel guilty that their child has a disability, but it is important to remember that it is rarely anyone’s 'fault'.

Whether you have a diagnosis for your child, or are waiting for one, it is likely that dealing with the practicalities of everyday life can seem to bring a lot of new stress into your life. Parents of disabled children often describe a constant battle for services and feeling unable to cope, dealing with professionals and the thoughts and opinions of friends and family. It’s natural for all parents to feel overwhelmed at times, but when you have a disabled child simple things like a trip to the supermarket can be fraught with anxiety, and getting your child out of the house can mean packing extra equipment or planning for bathroom or feeding breaks.

While you may not be able to make stress go away completely, it’s worth learning some tips to manage it. This will help stop it spilling over to your relationship with your partner and other children (if you have them).

How to manage stress


Sharing your worries with your partner can create a sense of solidarity and togetherness, reminding you that you’re not alone and giving you strength to cope with the challenges you face [1]: 

  • Talk to your partner about the things causing stress in your life. Perhaps you’ve had a bad experience where your child has had a very public meltdown. Maybe you’ve felt judged, or had to abandon your shopping for the safety of home. Tell your partner the story, but also talk about the feelings you had going through it.
  • Look for solutions. Maybe it’s worth paying a little extra for online shopping or waiting for the weekend so one of you can stay home with your child while the other shops.
  • If you can’t see a solution, try reframing the issue. Even if you’ve had to abandon a shopping trip, you’ve still made a brave attempt to get out. Learning something the hard way is still learning, and every tough experience makes you a little better at doing what you have to do. Reframing experiences like this can make it easier to cope in general.
  • Find ways to relax together. You can search online, or ask your child’s professional caregivers for local organisations who offer breaks to carers, but even just making a half-hour weekly window to unwind can help you manage the day-to-day stress.

Supporting each other helps you maintain your relationship during stressful times, making it easier to reduce stress and cope with negative emotions [2]. Approaching things as a couple, rather than as an individual, increases your capacity to deal with stress [3].

How to help your partner cope with stress


If your partner is feeling stressed, you may need to step up and offer support. As an example, let’s take one of the big worries for parents of disabled children – money. Your situation may have changed dramatically since the birth of your child. Perhaps one of you has had to take on extra shifts to make ends meet while the other has stopped working to take on childcare. This can put a big strain on both of you.

When your partner hits a bump in the road, it’s easy to become affected yourself or to shut the stress out, but you can help your partner cope by engaging and responding positively [4]: 

  • Make some time and space for your partner to share their feelings. Stop what you’re doing and give your full attention, even if you find it stressful too.
  • Take your partner seriously. Show an interest in what’s going on – while you can help your partner to reframe the situation, it’s important not to downplay the stress itself.
  • Let your partner know you are there to support them, but also that you have faith in their ability to cope.
  • Work with your partner to find a solution. For example, anyone who has attempted to fill in a claim form for Disability Living Allowance will know that it’s a stressful process that pries into some of the most difficult areas of your life. Though you’re probably tired and stressed yourself, helping out with something like this can ease the burden on both of you [1].

Many parents tell us that the best support and advice comes from other parents. There may be a local support group where you and other parent carers can share experiences and support each other. Parents describe meeting other parents of disabled children as a huge relief, finding out they’re not alone. Local support groups are also great way to find out what is happening in your area and get tips from other parents about local services. To find a support group near you, try the Contact helpline on freephone 0808 808 3555 or helpline@contact.org.uk.

It can also be helpful to know that you have a right to taking a break from caring for your child. Short breaks allow you to spend time either with your other children or alone, so you can recharge your batteries, catch up on sleep, do vital jobs, and spend time with your partner. Remember, asking for help is not a sign of weakness or being a bad parent. Spending time away from your disabled child can also help foster a sense of independence in your child. This is particularly helpful for them as they grow up. You can find out how to go about getting a much-needed break on the Contact website.

We all go through times of relative calm, and changes and challenges. If you feel you’re experiencing overwhelming stress it’s important to reach out to others for support – either a local voluntary organisation you’re in contact with, friends and family or your GP. Take advantage of all the support available.

References


[1] Bodenmann, G., & Shantinath, S. D. (2004). The Couples Coping Enhancement Training (CCET): A new approach to prevention of marital distress based upon stress and coping. Family relations, 53(5), 477-484.

[2] Herzberg, P. Y. (2013). Coping in relationships: The interplay between individual and dyadic coping and their effects on relationship satisfaction. Anxiety, Stress & Coping, 26(2), 136-153.

[3] Badr, H., Carmack, C. L., Kashy, D. A., Cristofanilli, M., & Revenson, T. A. (2010). Dyadic coping in metastatic breast cancer. Health Psychology, 29(2), 169.

[4] Bodenmann, G. (1997). Dyadic coping-a systematic-transactional view of stress and coping among couples: Theory and empirical findings. European Review of Applied Psychology, 47, 137-140.

[5] Crouter, A. C., Perry-Jenkins, M., Huston, T. L., & Crawford, D. W. (1989). The influence of work-induced psychological states on behavior at home. Basic and Applied Social Psychology, 10(3), 273-292.

[6] Fergus, K. D. (2011). The rupture and repair of the couple's communal body with prostate cancer. Families, Systems, & Health, 29(2), 95.

[7] Lazarus, R. S., & Folkman, S. (1984). Coping and adaptation. The handbook of behavioral medicine, 282-325.

[8] Repetti, R. L. (1989). Effects of daily workload on subsequent behavior during marital interaction: The roles of social withdrawal and spouse support. Journal of personality and social psychology, 57(4), 651.

[9] Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: psychological adjustment to chronic disease. Annu. Rev. Psychol., 58, 565-592.

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