Being a parent of a child with special needs is no small feat. One thing is certain; as parents WE ARE THE EXPERTS in the care of our children. It doesn't matter if your child has a rare or common genetic disorder, if they have physical or learning challenges. 

Some of the pearls I have learned over the years:

  • Don't be afraid to speak up!  You are the best historian for your child, the one that provides continuity of care. If you feel that your child is not being cared for in the best possible way, your advocacy can save their life. If you don't feel comfortable advocating on your own, often times States will provide an advocate, social worker, or other care team representative that can help advocate for you.
  • Doctors make mistakes! Yes! Nobody is fallible. Often our children do not fall under the auspice of 'normal' treatment guidelines. Be present and at your child's side as much as possible. Know your child and his or her 'typical' presentation. And don't be afraid to talk to your healthcare team about how these presentations were best treated before. 
  • Ask Questions and Educate Yourself: The more informed you are, the better care you and your child's health team can provide.
  • Don't be afraid to push back!  If you don't agree with your healthcare team's plan, speak up and advocate! Healthcare providers can learn from you, too.
  • Be careful about getting caught up in the statistics: The internet is a powerful resource, but not every child falls within 'categories' nor will they have all of the symptoms listed for a particular condition.  Remember that your child is unique, and that only you and your child know what symptoms are unique to him or her.
  • Make a Care Plan: I can't underscore the importance of this. It is frustrating when you present to a new healthcare provider during a hospitalization or for a specialist appointment, and that doctor has NO idea of the plan for your child. It is important to make sure everyone is on the same page. I recommend making sure that this care plan is flagged at that you keep and carry a copy to each appointment and/or hospitalization.
  • Know your child's medications: This is vital for ensuring proper dosing, reduction of medication related errors, and preventing side effects and drug interactions.
  • Try to have a solid plan for caring for your other non-affected children: Siblings suffer too. They are often left out and will vie for your attention, struggling to compete with their sibling with special needs. Validate their feelings and try and have reliable options for child care when need be. 
  • Take Care of Yourself!!! Don't forget the old adage of strapping on your own oxygen mask before putting one on your child. If we don't care for ourselves, we are at risk of physical and mental stress. Take time to sit down for a cup of coffee, read a magazine, or lose yourself in a nice bath or shower. This needs to happen daily.
  • Advocacy in the Schools: Make contact with the child's school early on, and request an IEP evaluation. Your child has the SAME rights as every other child. If the school is providing push-back, consult a school advocate. Always have access to medical notes and exact needs for your child while they are on school grounds.