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Learning your child has a disability

Having a child changes your life forever. Children are a source of great joy and provide parents with unexpected opportunities to learn more about themselves and what is really important in life. Being a parent opens us to a deeper love and capacity to care about someone else in a way many of us never previously imagined. Children bring us many gifts. This is part of the joy and wonder of parenting. Every child is unique – each with his or her own personality, qualities, abilities, characteristics and challenges. If you are reading this information guide, you have probably recently learned that your child has a disability. While you may feel you are facing many unknown challenges, you may find some comfort in knowing you are not alone. Many hundreds of thousands of parents have come before you, many are walking with you and many more will come after.

Children with disabilities have the same needs as every other child – to learn, play, be included, have friends and be loved by their parents. Whatever your child’s disability, one of the most important things you can remember is to see your child as a child first and their disability as only a part of whom your child is. As with any child, his or her future is influenced by the vision you hold for him or her and your commitment to realising these dreams.

Reactions

Parents have many different and mixed reactions when they learn their son or daughter has a disability. How you learn about your child’s disability can have an impact on your emotional reaction. You may be fortunate enough to learn about your child’s disability from someone who is knowledgeable about disability and has a positive view of people with disabilities. Unfortunately, this is not always the case. If you are not told about the positive benefits of having a child with a disability, then you have not been told the full story. It can be helpful to keep this in mind as you enter what feels like an unknown world. Not every parent will experience the same feelings, but it is perfectly normal to initially experience some or all of the emotions listed below:

  • Disbelief and denial – this must be a mistake. This can’t be happening;
  • Confusion or shock – how did this happen? What should I do?;
  • Anxiety – what else will happen? How will I cope? How will I explain this to the rest of my family, friends and colleagues?;
  • Uncertainty – how can I best help my child? What does the future hold for us?;
  • Anger – why can’t someone fix what has happened to my child? Why is this happening to my family?;
  • Despair – how can I possibly deal with this? This is not the dream I had for my child and family.
  • Determination – I will ensure this child has every opportunity to grow and learn. I will find out everything I need to know.
  • Relief – at least I understand a little better what is happening to my child. 
  • Commitment – I will love and care for this child. I will be devoted to this child.

It is not unusual to have conflicting reactions given there are so many unknowns and uncertainties. Wondering about the future is only natural. Parents want their children to be healthy, safe and secure. Now you have a million questions, perhaps some sleepless nights and few answers. You may feel powerless to change things and doubt your own ability to be a good parent. Not everyone will experience all of these emotions and each parent works through them in their own way and time.

Connecting to other parents who are further along in their journey of parenting a child with a disability can be an immense source of reassurance and understanding. Most parents soon come to understand that their child with a disability is as precious a gift as any other child. Over time, parents typically find strengths they did not realise they had to care for and raise a child with a disability. The energy that initially is consumed by anxiety and uncertainty is gradually transformed into energy that enables parents to be informed and effective advocates for their child.

Ideas to keep in mind

Upon learning your child has a disability you might keep the following ideas in mind:

Connect With Other Parents
Feelings of isolation are very common for parents when their child receives a diagnosis. Most parents find it very helpful to connect with other parents who are raising a child with disabilities.

Work Together As A Family
Talk with those you are closest to – a partner, your other children, your extended family and friends. Share your worries and hopes with others who have a positive belief in children with disabilities. Some people who are close to you may not share in your joy of your child, because she or he has a disability. Their view may change over time. It helps to remember you may not have had a positive view at first either. Having a child with a disability changes us in ways other people who have not had a similar experience may not understand.

Maintain A Positive Outlook
Remember that all children require the support and guidance of their parents to help them realise their full potential. A positive outlook can help you overcome barriers you may encounter.

Take Action
You are your child’s best advocate. Talk to other parents and participate in parent groups to learn about your child’s disability and the benefits of inclusion.

Continue to the next topic

 

Source

The information on this page was written by parents for parents, and was adapted with kind permission from the Alberta Association for Community Living (AACL) in Canada. You can find the full text from this guide by clicking on this link, or you can visit the website of AACL for more information.

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