By Samantha Toweel-Moore
You’ve heard your baby has special needs. You cannot believe this is happening to you. You question what you did wrong and you feel lost. Guilt pounds your heart the second you indulge in heartbreak and disappointment. You are in shock. You are a human being, a loving parent, who has just received life-changing news.
You may want to pretend it isn’t true but there is nowhere to hide. With time you come to realise 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.
The grieving process
It’s normal to feel 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
How to cope
- Allow yourself time to grieve. This doesn’t mean that you don’t love or respect your child. Don’t lock grief in. Release all the preconceived ideas so that you can accept the reality that lies before you. In doing this, you can embrace your child the way she is and come to know and respect her uniqueness.
- Grieving takes many cycles until you learn to let go. Each cycle brings you closer to healing and is not a step backwards.
- Be honest with yourself. Recognise and work through the stages with one goal in mind – healing.
Dealing with information and clinic overload
- You’ll drown in medical information and opinions as you learn more about your child’s condition. 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.
- 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.
- Have bags packed with everything your child needs for clinic visits, so you don’t have to stress about leaving anything behind. Check items the night before.
How to deal with strain and pain together
Your time and energy are severely taxed. Fears surface, guilt consumes you and these take conscious effort to overcome. In addition, the way you view the situation, and approach your child’s special needs, may differ from your partner. This can cause a lot of bickering and confusion. In turn, insecurity, hurt and frustration grow and can trigger anger. Destructive words and actions can follow.
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.
Once you’ve followed these two rules, open communication knowing that you’re undertaking a lot of new territory together. Feed your sense of humour and unity. You are in the same corner. Remember that.
If you separate, be the strongest parents you can from this perspective. Help each other obtain respite so your time with your child is more pleasurable.
Fear of the future
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.
Five things you need to know
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