Raising a child with special needs

It is perfectly normal to find yourself grieving because your child has special needs. It doesn’t mean you love your child any less or you don’t respect them. It is important to allow yourself the time to grieve because it is not easy to find out that your child will live with a special need or condition for the rest of their life. The problem starts when you lock the grief in. Grieving takes many cycles until you learn to let go and it is worthy to note that each cycle brings you closer to healing and is not a step backwards.

A roller coaster of emotions

Usually when a parent discovers that their child has special needs, they feel lost and blame themselves and ask what they possibly did wrong. Heartbreak, shock and guilt are just some of the emotions they will experience as they navigate the life changing news. It’s easy to fall into a trap of sadness but you need to realise that your precious child is a miracle, far more than a label or a diagnosis. A priceless mystery who will open your eyes to life in ways you could never have imagined.

Dealing with the strain and pain together

As parents you may not take the news the same. One partner may cope better than the other. Because you treat the situation differently, it is easy to cause a lot of bickering and confusion. In turn, insecurity, hurt and frustration grow and can trigger anger. Hurtful words and actions can follow and impact the relationship. This is a time you need to stand together and be strong for the sake of your child.

Understanding the grieving process

As you both continue to digest the news, so will your process of grief. The grieving process involves the following elements which can happen in any order but always ends with acceptance.

• Denying the problem
• Bargaining with God
• Anger
• Depression

Positive strategies

Remember that you and your partner are in the same corner- it is not a competition. You are in this together. Recognise the emotions that underlie your thoughts and actions. Have an emotional unpacking session at set times each week. Follow two rules:

• You need to listen to me, not comment or judge me. Just allow me to unpack and feel heard.
• Recognise each other’s vulnerabilities and fears. Respect them. Treat them with care, even if you don’t agree with them.

If you feel that you cannot cope doing this on your own, then best you seek professional help from institutions like Families South Africa (FAMSA).If you separate, be the strongest parents you can be for your child and be both present- it means a lot for the child as well. Your child can sense it when the claws are out as well when there is mutual respect between the two of you.

Here’s how to cope

As you learn more about your child’s condition, you might feel overwhelmed and like you are drowning from the medical information and opinions. You’ll become familiar with a lot of medical professionals you might not have heard of before. Although this may come with deep gratitude, at times you will feel it’s all too much. The best way to cope is to try get into a comfortable routine. For example, on Mondays deal with the paediatrician and the occupational therapist and give yourself a breather until Thursday when you see the speech therapist. Collect medicines from the hospital while your child is in therapy, so she doesn’t have to extend her stay at the centre.You might feel there is a lot to go through and yes, that is true. But one thing is that you need to be emotionally present for your child and as they grow, so will your level of understanding of their condition. The best weapon is conquering any challenge is love.

Fear of the future

Death is another reality you have to deal with. You worry that if anything were to happen to you, what would happen to your child and who would take care of them. Financial and emotional planning for the future provokes intense fear in most parents. Thinking about life after your death can be daunting. Here’s how to cope:

• Know your child’s legal rights.
• Prepare a detailed will.
• Consider establishing a trust.
• Consider sheltered accommodation with employed care for your child.
• Know that uncertainty is the greatest problem but will ease in time.