Angelman syndrome

6 Tips for Parents Raising Children with Genetic Conditions

Children with genetic conditions may struggle with many aspects of their life. Their social life may take a hit, and the same with their mental health.  But, most times, they are often not alone. Their parents share some of their struggles, worries, fear, frustrations, and pain.

Some of these parents’ frustrations stem from not knowing how to help their children cope with their condition. Below, we have highlighted six tips to help parents raise children with genetic conditions.

 

What is a Genetic Condition?

Clubbed foot

A genetic condition or disorder occurs when there is a change or mutation in a person’s DNA sequence. While this condition isn’t life-threatening, it can affect the well-being and overall health of the affected individual.

Common genetic conditions experienced by children are:

  • Clubbed foot
  • Cleft lip/cleft palate
  • Carpenter syndrome
  • Crouzon syndrome
  • Angelman syndrome

Parents who have children with genetic conditions can care for and raise them with these tips.

 

  1. Seek early intervention: Quick intervention can save your child’s life, so don’t sleep on it. Instead, visit a children’s clinic for help as soon as you discover signs of a genetic condition.

The medical team assigned to your child will help you determine what’s likely beneficial to your child’s condition. And if your child is an NDIS participant, good news. You can discuss early intervention with your NDIA planner.

 

  1. Seek practical information regarding your kid’s genetic condition: What is your child’s genetic condition? Is your kid experiencing Crouzon syndrome? You can speak to other parents who are in your shoes. Alternatively, you can join a rare disease or condition support group for emotional support.

You can also visit a children’s hospital and speak to a health professional for expert advice. Seeking information about your kid’s condition will help you understand it better, thus ensuring you provide the best care for your child.

Genetic Conditions

  1. Speak with your child regarding their condition: Don’t ignore the opportunity to talk to your kids about what they are facing, especially in a language they understand. Speaking to them can create more awareness of their condition.

When speaking to your child, you might need to tell them that they need to do things differently from their peers. Or that they’ll visit the hospital regularly for checkups or treatments.

 

  1. Promote your child’s mental health and well-being: Children with genetic conditions may struggle with several aspects of their lives. The best thing you can do as a mother is to promote their mental health and well-being.

You can do this by being aware of their feelings, building healthy and good relationships, and helping them live healthy lives.

 

  1. Help others understand your child’s condition: While you attempt to help your kids understand their condition, you should also try to do the same to grown-ups.

When adults understand your kid’s condition, they can interact more meaningfully with them. You can request a fact sheet from your child’s professionals or a support group.

Alternatively, you can make yours and give it to grown-ups like teachers, and GPs, so that they understand your kid’s condition and know how to interact or cater to their needs.

 

  1. Be your child’s advocate: Health experts understand your child’s condition and can give tips on managing it. You, on the other hand, understand your child. And because you do, it is very OK to advocate your child’s needs, particularly if you worry about certain aspects of your child’s health, well-being, or growth.

 

Work with a health professional.

Many genetic syndromes are rare, making them complex. Because of this, it’s important you maintain close communication with health professionals. In the beginning, this might seem too much for you. But in the end, you’ll be glad you did.

Angelman syndrome

Conclusion

Children with genetic conditions may seem like outliers. Their situation may affect their social life and mental health. It is your job as a parent to ensure that they get the care and love they need to cope with their condition. And what better way to do that than learning how to cater to their needs?

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