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Emotional Impact on Parenting a Child with a disability

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Finding out that your child is disabled or has additional needs can take time for you to adjust. There’s no right or wrong way to feel and everyone reacts differently.

How are you feeling?

You will experience a range of positive and negative emotions. It can take time to work through these.  A disability diagnosis impacts the entire family. However, parents often feel it the most. In fact, many experience a wide range of emotions, including shock, fear, sadness, disbelief, disappointment, self-pity, anger, numbness, guilt, grief, denial, envy and even shame.

Other parents feel so shocked that they initially experience disbelief and numbness to the situation until the reality finally sets in. All of these feelings (or any others) are more than understandable — you just received a lot of information! You may feel scared for your child and yourself as a parent.

 

Some parents describe the period after diagnosis as a period of mourning, while others feel like it is like a bad dream, or that they are living in a bubble outside of reality.

Your emotions may vary wildly, and parents have told us that they were quite frightened by the feelings they had at this time. This is perfectly normal, and you are not alone. Some parents approach it like they were faced with an unexpected and life-altering event and therefore experience uncertainty.

You might feel relieved too if you get a diagnosis, especially if you’ve been worried about your child’s development for a while as it means you can ask questions about your child’s development and get support from professionals and peers.

Emotion Examples of how you as a parent might display the emotion
Scared You may feel scared of what the future will hold for your child. You may feel scared for yourself as a parent and in particular bonding or connecting with your child.
Denial You may deny your child has a disability.
Anxiety You may go through dramatic change that might affect your attitudes, values, beliefs, and routines.
Fear You may feel concerned about letting your child with a disability do certain things (protective).
Depression You may experience uncontrollable tears, sadness, and feelings of hopelessness and Isolation.
Guilt You may feel you are somehow to blame for the disability or the situation.
Anger/Frustration You may act out your anger or direct it toward another person.

A diagnosis can sometimes help. It may help you understand your child’s condition better. When your child receives a diagnosis, you will probably receive a lot of information all at once, and you may find this it is too much to take in. In fact, it may be weeks or even months before you feel able to find out more about your child’s condition. Some parents find that getting as much information as possible about their child’s condition helps them to cope and plan for the future. Others find their emotions are enough to deal with and prefer to get to know their child as an individual before finding out more about their disability.

 You may find it difficult to talk about because you’re scared of being judged or blamed. Sometimes it can be too hard to talk about or you feel there’s no one who would understand. Although you can try to push your feelings down and ignore them, it will not help.

 In fact, you’ll need to navigate these emotions and process them so that you can help your child and find ways to thrive in your family’s new normal.

As you are juggling so much, it’s hard to know what to do with those feelings of guilt, sadness, anger, and envy etc. One of the best things parents can do during this time of diagnosis is take care of themselves. Increased stress can lead adults to neglect themselves. It’s important that you take care of your physical needs, but it is vital to take care of your emotional needs during this time.

Also, you need to learn how to recognise and accept your feelings and give yourself the time and space to fully experience them. Although your current feelings won’t last forever, but for now it’s best to meet yourself where you are and be gentle with yourself no matter what you’re feeling. Finally, when you’re ready, opening up to loved ones you trust or another parent through peer support can help you cope with everything you’re feeling. These people can support you and provide a listening ear without judgement, and sometimes having a moment to vent is the best medicine out there for overwhelming emotions.

Its not your fault

Try to focus on the positives rather than worrying about what caused your child’s needs. Look at what your child can do instead of what they cannot. Your doctor may be able to tell you the cause, but it may take a long time to find out. Sometimes doctors will not be able to tell you the cause or why it happened!

Some parents  may have questions going on in their minds such as:

  • “What if I didn’t care for my child in the right way”?
  • “Do we have enough money to support her”?
  • “What is now the meaning for our entire family”
  • “Will I still be able to work”?
  • “Will I be able to juggle the needs of all my children”?
  • “I saw my daughter through a limited lens; I saw only her differences”.
  • “I was optimistic. Maybe the experts were mistaken. Surely there would be a cure in a few years”.
  • “I was sorry for myself. Why did it happen to me”?
  • “How do I tell my family”?
  • What do I tell and support siblings
  • “Would he live with me forever”?

Help with negative emotions

Reading about or watching other parents share their experiences and feelings can help. 

When you feel ready, sharing your own feelings with someone can also be a great help. Parents often find the most useful support is from talking to other parents of a child with the same condition or joining a peer support group.

Communication is important for your mental health and emotional wellbeing. It can be the difference between feeling isolated or overwhelmed and being supported.

You may find it takes some time to talk to friends and family about your child’s condition. Do everything at your own pace. There is no right or wrong way to do it. You may also find it hard to talk to your partner about your feelings, fears and worries. Talking to your partner can help you to support each other better and understand each other’s feelings

Getting some rest, looking after your mental health and asking for support can help you and your family manage better.

If you can, try taking a little time off. Try relaxing by:

  • having a bath
  • going for a walk
  • watching TV
  • reading a book or magazine
  • catching up with friends

You could also try:

  • reading or writing a blog
  • watching other parents’ video channels
  • visiting online communities and parent forums
  • calling a helpline
  • going to or setting up a local support group
  • talking to a counsellor
  • Changing your routine, i.e., joining a new club/ new hobby

Emotions will become easier to manage

It is also important to remember that, with time, your emotions will become easier to manage. Many parents have said that after a diagnosis they discovered hope, strength, love, determination, positivity and pride that they didn’t know they had.

 In fact, many families find that their child with a disability has positively impacted their lives by:

  • Increasing their ability to love and to accept differences
  • Strengthening their family ties
  • Giving them a greater sense of pride in their child’s accomplishments
  • Leading them to learn more about disabilities and advocacy roles
  • Making them more patient, understanding, and tolerant
  • Teaching them to enjoy the little things in life

What you can do!

Focus on your child not their condition

Every child has different likes and dislikes, strengths and weaknesses.

Try not to compare your child to others. Focus on your child as an individual.

Enjoy the good days. Celebrate the achievements or highs, however small. These experiences may not be what you were expecting but they’re just as important. It is much more beneficial for parents to focus on their child, not the diagnosis label. After all, every child is different, even two children with the same diagnosis, so getting caught up in comparison may leave you feeling even worse than you did before.

Instead, just spend time with your child doing normal, everyday things. Depending on your child’s condition and the severity, their life may start looking very different than their non-disabled peers. Therefore, it’s important to enjoy moments of normalcy when you can, even if it’s something simple like playing at the park or playing with their favourite toys.

When your child makes progress or hits a new milestone, celebrate it! Just because your child has a unique diagnosis, that doesn’t mean they don’t still deserve to celebrate small successes along the way.

 A mum who was getting accustomed to living with her child’s disability summed up her perspective: “Life is not a problem to be solved, but a mystery to be experienced.”

One day at a time

Plans can be helpful, but they can also cause unnecessary pressure. You can start to feel overwhelmed with everything you need to do. Sometimes the smallest thing can be a tipping point.

Try to be flexible if you can. You might not manage anything on your ‘to do’ list. But you can do other things instead. Your child might be having a bad day and dealing with this is all you can manage.

Research your child’s condition

You might find doing research helps you to understand your child’s condition, impairment or additional needs. Every child is different. Some of the information you find may apply to other children with the same condition but not yours. Bear in mind that not all information online is by experts.

To find information that relates to your child:

Below are links for reference