Learning & Information | Rukuhia Te Puna Mātauranga

Tips for getting started

A parent holds the hand of a small child

Here’s some advice and tips from parents, advocates and people with disabilities on supporting a child with disabilities.

  • Your child is a person first, always. Disability does not define your child. Having a disability is part of the mix, but so are your child’s strengths, personality and interests.
  • Every child has different abilities and challenges. Focus on the positive things they can achieve to live a good and happy life.
  • Learn as much as you can about your child’s disability. They say knowledge is power, and they’re right. You can help your child more if you understand their condition and the challenges they may face.
  • Be organised when dealing with health professionals. Take and keep notes and ideally keep all medical records together in a folder. 
  • Meet up with parents and carers who support children with similar issues. They have often ‘been there’ and have useful advice from experience, as well as empathy and understanding.
  • Parents: you know your child best. Not everything you read (or are told) about a certain impairment or condition may fit your child.  Remember he or she is unique, so focus on what information is helpful to you.
  • Acknowledge grief: grief is a natural response to loss. Most parents do not expect that their child will be born with, or develop, a disability or special need; when that happens, much of what they imagined and planned is forever changed.  For parents of children with a disability, feelings of stress are often compounded by a profound sense of grief that results from this loss of one’s initial hopes, dreams and expectations, even as you adapt to a new future for you and your child. Grieving takes time, patience and support. Here’s an information sheet on grief from the Skylight Trust. It’s important to talk to someone you trust if you’re feeling the effects of grief.
  • Many parents feel overwhelmed when their child is newly diagnosed as autistic, but Penni Winter has some reassuring advice in the Altogether Autism Journal for parents whose children have been recently diagnosed with autism.

Do you have a tip or piece of advice you would like to add or share with us? If so, contact us by selecting the ‘needs adjusting’ option below and submit your comments.

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