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How to Cope When Your Child Has Rett Syndrome

So you just found out that your child may have Rett, or they have been officially diagnosed with Rett Syndrome. What’s the next step, and how do you cope?

Rett Syndrome is a rare neurological disorder that is almost exclusive to occurring in girls. It has mild to severe symptoms that affect speech, learning, breathing, mood, and movement.  

Some key signs that you may have noticed are loss of progress or regression in some developmental milestones. 

But if your child was recently diagnosed with Rett Syndrome and you’re having trouble coping, then continue reading for our tips. 

How to Cope When Your Child Has Rett

Rett is a rare but difficult disorder to live with for both you and your family. Here are some coping tips for the challenges Rett Syndrome may bring you. 


Acceptance may be the most difficult first step for you as a parent in order to cope with the situation. Some things you may need to accept include: Accepting that some of your child’s milestones may never return, that your child’s life will not be “typical” of other children, and explaining to other parents or family and friends about your child and their differences. 

Some parents of children with Rett say, “We thought we would have to teach our child about the world, but we have to teach the world about our child due to being nonverbal and lack of motor skills.” 

This may not have been the life you imagined for your child, but accepting the situation will help with your coping. 

Accept Help 

Being a caregiver for your child with Rett Syndrome is a full-time commitment and may affect your ability, as a parent, to work, keep a job, or leave the house. 

While caretaking could be demanding for you, it may become difficult to accept help from others and trust that they can care for your child the way they need with Rett Syndrome. 

But it’s essential for you to accept help when you need it to avoid caregiver burnout. Caretaker burnout is the overwhelming physical and mental exhaustion that comes from the stress of being a caretaker.

Join a Support Group

Joining a support group is a great way to meet other families struggling with Rett Syndrome and get tips on how to handle your individual situation. 

When you join our support Group, NWRSA Family Support Group, you will be connected with friends and family of people with Rett Syndrome, where you can share your good and bad days and share your journey with other families. 

The benefit of having a support group is that a medical professional can’t offer the emotional support that you may need. Additionally, while close friends and family mean well, they don’t understand the full weight of having a child with Rett Syndrome. 

Here are some benefits of joining a support group:

  • It helps not to feel alone or judged in your situation
  • Reducing symptoms of anxiety or depression
  • Improve coping skills
  • Improve your understanding of Rett Syndrome
  • Get feedback about treatment options
  • Learn about the resources available to you 

The cons of joining a support group:

  • No Confidentiality
  • Interpersonal conflicts
  • Inappropriate or untrue medical advice
  • Misunderstanding or confusion between members


There’s no guidebook that can help you cope with the emotions of learning that your child has Rett Syndrome. Because of that, therapy can offer you tools to help you through this journey. 

Therapy isn’t just for treating mental illness diagnosis but it is also for life struggles, changes, or stressful life events. 

Some benefits of Therapy are:

  • Improved communication skills can help you feel comfortable asking for help
  • Boost feelings of empowerment
  • Improve relationships with your close family and friends
  • Aid in physical pain
  • Developing coping skills for daily life challenges

And now, even if it’s hard for you to leave the house, there are many therapists that offer online telehealth options such as BetterHelp or Talkspace.


While this may not have been what you wanted for your child, this is a stressful life event for you and your family. You may be struggling emotionally with the news that your child has Rett Syndrome. However, there are tools and resources available to you such as support groups, therapy, and the support of your family and friends. 

This is just the start of a new journey for you and your family.