April 2020 – After the NICU

As we all have learned, prematurity is a life-long journey. Babies born prematurely are at higher risk for developing autism spectrum disorder. Here are some helpful tips as you navigate this diagnosis:

  • Speak up: Our children are dependent on us. When issues arise, this is the time for us to be persistent with our voice and use it on our children’s behalf when dealing with medical professionals, when insisting on getting evaluations done, negotiating with insurance companies and advocating for support at school.
  • Be informed: Advocacy goes beyond speaking up. Stay informed of policies and current events affecting your child. When attending IEP’s, make sure your voice is heard when it comes to your child’s needs. Remember: YOU are the expert on your child.
  • Build relationships: Join support groups with others who are on the same path. They are the ones who understand and can empathize with your circumstances. Join groups and school committees and be THAT parent. Let others know who you are and be a support system not only to your child but to his team.
  • Practice patience: Be patient with yourself and your child. Children with autism have unique needs. As the spectrum is vast, there is no exact manual and many times you will be figuring things out by trial and error.
  • Look for your child’s unique gifts: Find out what works best for your child. Learn what your child loves to do most, whether it’s read about animals or build with blocks – this will help build a bond of trust between you and your child.
  • Teach self-advocating: For elementary age children, transitioning from advocating for our kids to advocating with our kids can be done by talking about different disabilities and use names of diagnosis. Talk about people at school who help your child, use their correct titles and explain their roles.
  • Understanding: By understanding, accepting and honoring your child’s individuality and their unique differences that impact them day-to-day will help them thrive. Understanding and empathy go a long way. Also, understand your needs as a parent and honor those needs. Practice self-care and be gentle with yourself.

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