If you have found out that your child has a complex disability – whether you’re pregnant, have a baby, or if they’re a bit older, it can feel overwhelming. Many parents describe it as a life-changing point, where everything they had thought about seems to come crashing down and they’re thrust into the unknown. It’s totally normal to feel things such as shock, grief, fear, confusion and love all at the same time, so keep in mind there isn’t a “right” way to feel. While it might feel like there’s a lot of uncertainty in front of you, know you’re not alone and that there are many steps you can take to support not only your child, but yourself too. The future doesn’t need to be as scary as it might feel with these top tips on what to do if you find out your child has a complex disability.
Build a Support Network Early
You do not have to do this alone. One of the most important steps is building a strong support network around your family. This may include a team of healthcare professionals such as paediatricians, therapists, and specialist nurses. You might need to speak with people like NDIS Support Coordination, who are a trusted partner in navigating the complexities of the National Disability Insurance Scheme (NDIS). Speak to family members and close friends, join parent support groups and speak to charities and organizations who specialise in complex or additional needs.
Learn About Your Child’s Condition at Your Own Pace
Complex disabilities often involve multiple needs, such as physical, cognitive, sensory, or medical challenges. Understanding your child’s diagnosis can help you advocate for them, but it’s important not to overwhelm yourself by trying to learn everything at once. Start with reliable sources such as medical specialists, consultants, or recognised charities related to your child’s condition. Ask for written summaries from appointments and keep copies of reports in one place. Over time, as your confidence grows, you’ll become more comfortable navigating medical language and understanding what applies specifically to your child.
Allow Yourself Time To Process the News
When you find out the news, you can feel overwhelmed. You’ll be sent a plethora of medical terms and reports, news and information that can leave you feeling like the walls are closing in on you. Give yourself time and permission to stop, have a breather and let yourself feel all the emotions. If you suppress them or pressure yourself into “being strong” straight away, it can lead you to becoming burnt out or struggling more with your mental health. Processing the emotional side of things isn’t a weakness, it’s a necessary step to adapt to your new reality.
Finding out your child has a complex disability can be life-changing, but there are many things you do to help your child and yourself. While concerns about the future such as education, independence, care needs, and adulthood are natural, don’t let future worries overshadow the present. What are some top tips you have for helping others in this position? Let us know in the comments below.
If you have found out that your child has a complex disability – whether you’re pregnant, have a baby, or if they’re a bit older, it can feel overwhelming. Many parents describe it as a life-changing point, where everything they had thought about seems to come crashing down and they’re thrust into the unknown. It’s totally normal to feel things such as shock, grief, fear, confusion and love all at the same time, so keep in mind there isn’t a “right” way to feel. While it might feel like there’s a lot of uncertainty in front of you, know you’re not alone and that there are many steps you can take to support not only your child, but yourself too. The future doesn’t need to be as scary as it might feel with these top tips on what to do if you find out your child has a complex disability.
Build a Support Network Early
You do not have to do this alone. One of the most important steps is building a strong support network around your family. This may include a team of healthcare professionals such as paediatricians, therapists, and specialist nurses. You might need to speak with people like NDIS Support Coordination, who are a trusted partner in navigating the complexities of the National Disability Insurance Scheme (NDIS). Speak to family members and close friends, join parent support groups and speak to charities and organizations who specialise in complex or additional needs.
Learn About Your Child’s Condition at Your Own Pace
Complex disabilities often involve multiple needs, such as physical, cognitive, sensory, or medical challenges. Understanding your child’s diagnosis can help you advocate for them, but it’s important not to overwhelm yourself by trying to learn everything at once. Start with reliable sources such as medical specialists, consultants, or recognised charities related to your child’s condition. Ask for written summaries from appointments and keep copies of reports in one place. Over time, as your confidence grows, you’ll become more comfortable navigating medical language and understanding what applies specifically to your child.
Allow Yourself Time To Process the News
When you find out the news, you can feel overwhelmed. You’ll be sent a plethora of medical terms and reports, news and information that can leave you feeling like the walls are closing in on you. Give yourself time and permission to stop, have a breather and let yourself feel all the emotions. If you suppress them or pressure yourself into “being strong” straight away, it can lead you to becoming burnt out or struggling more with your mental health. Processing the emotional side of things isn’t a weakness, it’s a necessary step to adapt to your new reality.
Finding out your child has a complex disability can be life-changing, but there are many things you do to help your child and yourself. While concerns about the future such as education, independence, care needs, and adulthood are natural, don’t let future worries overshadow the present. What are some top tips you have for helping others in this position? Let us know in the comments below.
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