Early days with a special needs baby

If your baby's condition was diagnosed while you were pregnant, then you may have had time to get to know some facts about your baby's condition. For other parents, diagnosis only comes once their baby is born, and that can be a huge shock.

This Mumsnetter says: "Her diagnosis of Down syndrome was confirmed the next morning. I spent the rest of the day sobbing and drinking tea. All the 'why me?' stuff and shock etc gushed out, it was awful. We were devastated that our big moment, announcing the birth of our first born, something meant to be so special and such a happy moment, was being robbed from us."

It is normal to grieve for the baby you didn't have - the imaginary baby that you had dreamed about for ages. "We had to choose a new name for the baby," says one mum, "because the names we had decided on didn't seem to fit this new baby in front of us."

Some parents feel guilty for having negative thoughts. You may even feel regret that you have had the baby at all. Feelings of rage, anger and grief are all normal.

Parents of children with special needs often feel overwhelmed by their new situation. Adjusting to having a newborn is hard at the best of times. When special needs are thrown into the equation, the extra tasks – and worry – involved can seem insurmountable.

Depending on your baby's situation, you will be offered help – and if you are not, then you need to demand early intervention so that you receive the help you need.

Support groups exist for almost all types of special needs: there will always be a parent somewhere who can understand what you are going through and what challenges you face – and who can offer you practical ideas for getting through the early months and adjusting to parenthood.

From now on, you are on a steep learning curve – like any new parent. You will become the expert in your baby's care and wellbeing, and start advocate for her medical needs.

What Mumsnetters say about early days with a special needs baby

  • I felt genuine grief, like a bereavement, and all I kept being fobbed off with was all the Holland/angel nonsense, which made me cry harder with grief, guilt and rage because I wasn't able to embrace the special gift I had been given. MarmadukeScarlet
  • My initial reaction was of huge grief, anger, upset. Her birth and weeks in NICU had been like some sort of tortuous rollercoaster. Truthfully, initially, I wished we had just lost her at birth. I thought this was for the best as having a child with such complex and profound disabilities was going to pan out as the worst thing ever. I felt furious and cheated. Why had I been conned into pregnancy for this? These feelings were my shock, grief and anger. Probably a bit of shock, post-traumatic shock and depression. Probably a fear of bonding and loving a child so much then having them taken away - ie a fear that this baby would have such a short life I'd rather not have got to know her at all. Pixiemason
  • In my daughter's first year all I ever seemed to do was try (and fail) to breastfeed, visit hospitals and meet health professionals. I never met any parents. And, apart from Mumsnet, much that I sourced on the internet was sentimental twaddle or not relevant to my daughter's issues. Arabica
  • Support groups were a lifeline for me in the early years, both in real life and online. I found online easier to cope with first of all. I think a real value of support groups can be that you see families living with the disability as normality, not as something terrible and mysterious that happens to other people. That really helped me to accept that my son's condition was going to be part of our life, and that we weren't the only ones in that situation. There are also people there who are a) interested in what you have to say about your child and b) don't shuffle their feet, look embarrassed, and quickly change the subject. yurt1
  • In no time at all you'll be the one telling the doctor things, and you'll suddenly realise that you will always know more about your baby than they ever will. Romy7
  • You find strength and depth of character you never knew you had, you find laughter in the darkest of places and unexpected friendships appear. You also gain very good medical knowledge! slightlycrumpled



Last updated: about 2 hours ago