Where to Turn When Your Child is Diagnosed with Down Syndrome

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If a doctor has just given your child a diagnosis of Down Syndrome, you’re likely experiencing a huge range of emotions. Children with Down Syndrome, of course, are a blessing to any household, but just getting started in terms of organizing care and financing can be overwhelming. However, there is a vast community available that has resources ready to help you get the information, care, and financial aid you need to give your child everything they need. Here are just four major resources available to parents of children with Down Syndrome that you can tap into.

The National Down Syndrome Society

The National Down Syndrome Society (NDSS) is one of the most comprehensive resources at your disposal in terms of finding support. It works with hundreds of affiliates to provide you with easy access to local support groups or online forums where you can chat with people all around the world who might be experiencing feelings similar to yours. If you want to find other parents that can understand what you might be going through, the NDSS is a great place to start. Through this organization, you can also gain valuable tips on how to handle various common symptoms involved with Down Syndrome, find social groups that you and your child can join, and learn more about what medical complications to expect and prepare for along the way.


Explore Financial Plans

Living with a disability or caring for one or more children that have Down Syndrome can be expensive, but it doesn’t have to be financially overwhelming. Several organizations can work with you to develop financial plans and provide you with medical insurance to promote a high standard of care. You can work with an NDIS plan management specialist to ensure that you are financially covered for any conditions related to your child’s disability that may arise. Many organizations that can help with NDIS plans are nonprofit and are dedicated solely to supporting you and your child through your medical needs.

Get Help with Skills

There are ways you can help your child with Down Syndrome improve both motor and communications skills. Several guides offer tips and strategies for helping your child to work on fine and gross motor skills as they grow and learn new things. You can choose educational materials in easy-to-digest book or video formats for your convenience. Children with Down Syndrome often communicate with you in their own ways. You can learn how to understand those ways and meet your child’s needs. The National Association for Down Syndrome (NADS) has a variety of resources to explore in this area and can provide specialized programs for helping your child in their motor skill and communication development.

Consult a Child Psychiatrist

Many psychiatrists work exclusively with children and understand how young, developing minds work. Some of these professionals specialize in children that are not neuro-typical and have developed strategies to help those children succeed. These professionals can also help you better understand your own coping mechanisms and the next steps you can take. Child psychiatrists are also great in coordinating various forms of treatment, prescribing medications, exercises, and activities that can help your child reach their fullest potential. Having a professional that specializes in Down Syndrome is especially beneficial, and they will be able to give you greater insight into what you can do to support your child’s development and growth.

Any medical diagnosis that affects the life of your child can be a scary thing. However, you are not entirely on your own when it comes to caring for and nurturing your child with Down Syndrome. Don’t be afraid to reach out of the financial and emotional support that you need. Modern medicine and understanding of Down Syndrome has increased spectacularly over the years, making it easier for parents like you to get the support you need for you and your child.

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7 Replies to “Where to Turn When Your Child is Diagnosed with Down Syndrome

  1. What a helpful post! I can’t imagine the whirl of emotions when hearing this news from your doctor. I expect having a place to get the scientific facts, as well as emotional and logistical support from kind parents in a similar boat would be essential. Being reassured that it’s not the end of the world, in face you have still been blessed with a beautiful and wonderful child.

  2. While I don’t have a child with down syndrome, I do have a child with sensory processing disorder and apraxia. Not knowing anything about your child’s diagnosis and/or needs can be scary. I will be sharing this with anyone that ends up needing it.

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