Finding out your child has special needs

When you get a diagnosis it can be like having the rug pulled from under you - all your assumptions and hopes for your family life and your child's future (ie growing up, moving out, a career, relationships) are all yanked into focus as everything is thrown up in the air.

You have to deal with the loss of the dreams you had for a 'normal' child - "one who walked at the right time and did everything in the way it was supposed to happen" - and this can feel like grieving.

"It all just hurts so much," says one mum. "I want to wake up and she's walking and can do everything that she wants to." This grieving process is normal, so don't beat yourself up or feel that you're going mad if you get upset watching the little girl next door playing in her garden.

"Be warned that you can think really nasty things about your child, about not wanting them or feeling that they have ruined your plans," cautions one mum. "It is normal and does not mean you are bad."

Friends' and family's reactions

Don't feel that you have to tell people as soon as you have a diagnosis. You may not feel ready to tell the world immediately.

When friends and family do learn of your child's diagnosis it can be a difficult time. Their natural reaction will be to ask "But he will be OK, won't he?" - asking you for reassurance that you may not be able to give.

In particular, a diagnosis of special needs can be a huge shock for grandparents, who have a tendency to idolise their grandchildren. A negative reaction to the diagnosis from your own parents can be extremely upsetting. 

Given the choice between thinking that you are a bad parent and thinking that their beloved grandchild is disabled, they may choose the former. "It's just human nature to go with the most painless option," explains one mum, "but it means you'll be undermined by your own mother when you least expect it."

Among closer friends, there is a natural tendency among to be reassuring: "Oh yes, it's OK, little Archie does that all the time."

"It's comforting if you are talking about licking the window to see how it tastes," says one mum, "but it's not comforting if you are talking about standing licking the window for hours and hours. In fact, you will feel belittled and possibly want to kill them, but until you have a special needs child yourself you don't realise the difference." 

Why counselling helps

A lot of Mumsnetters recommend counselling as a means to get through coming to terms with your child's diagnosis. It can be hugely helpful to talk to someone outside your circle of friends or family, who want to 'say the right thing' but who are also struggling with their own feelings.

What Mumsnetters say about finding out your child has special needs

  • The diagnosis was like a brief period of mourning for me, for the future I thought he would have, and then a slow realisation that he probably would have a future - just a different one. Luckylady74
  • Sometimes friends without children can be surprisingly supportive. You get understanding and compassion in the unlikeliest of places. Totalchaos
  • The first couple of grieving stages are denial and anger; later comes bargaining, and then depression, and then acceptance. It's a long road and it's not easy, but you do get there, you will get through this and your child will make you proud. I promise. My daughter makes me proud every day. Cappuccino
     

 

Last updated: 20-Jun-2013 at 11:19 AM