Genetic disorders are caused due to abnormalities and mutations in one or more genes. The mutation happens before the development of the embryo; in some cases, it is inherited by one or both parents. While in many cases, it occurs spontaneously.
Most of these health problems are present at birth but are rare. According to WHO, only 2%-5% of live births are diagnosed with such health conditions. Some of them are; Williams syndrome, kabuki syndrome, microcephaly, and more. Children who suffer from genetic diseases often need special care and support from their parents.
So, if you are parenting a child with genetic syndromes, you will need to put extra energy into raising them. It may be challenging, but not impossible. This article mentions a few ideas to assist you in raising confident and healthy kids.
Common challenges that children with genetic disorders face as they grow up
Children with genetic conditions such as crouzon syndrome, Down syndrome, and more have particular challenges. Interestingly, many of them have shown improvement by getting timely therapies, treatments, and counseling for the same. You may find the following traits in them:
- Lack of motivation
- Reduced self-esteem
- Difficulty in fine and gross motor skills
- Anxious about participating in social activities
- Easily distracted
- Poor non-verbal communication and more.
The social traits may or may not be seen in every child. However, they are seen in most kids.
How can parents support the development of their kids with rare conditions?
All the kids need a warm and loving environment to grow in their best mental, physical, and emotional abilities. You must ensure that you have a loving relationship with your child. However, we know that it takes extra effort to raise kids with rare health conditions. Therefore, we have mentioned some points to help you streamline the process:
-
Seek Early Intervention
Some conditions may be diagnosed during birth, while others may take a few months to clear. However, it is vital to seek early intervention as it will pave the path for you to raise your child well. You should talk to the healthcare experts and ask about what is your child’s requirement at the current stage. You can take help from professional planners and coordinators to develop a comprehensive plan for your child.
-
Let your child know about their condition
One of the best practices to create a strong bond between you and your kid is to talk to them about their condition. They should know how they are different from others, but that doesn’t make them any less human. You can also make them meet people with similar health conditions. They should know what is suitable for their situation and what might worsen it. Speaking to them about their health issues will make it easier for you both.
-
Advocate for your child for the best treatment – for them
The healthcare providers know the medical condition best, so they give the treatment accordingly. However, nobody knows your kid better than you do. So, always be an active advocate for them. Speak up for them when it is necessary and requires attention. It is especially true when you are concerned about their health issues. It will serve as a positive reinforcement to your kid that their parents are available for them at all times.
Bottom line
Regardless of the condition, raising children with rare health issues is challenging. Parents and children need to put in extra effort and do things differently than others. But this should not drop your morale; instead, work with professionals and get the path right. Remember to focus on your and your child’s mental health too.