Expert Advice for Parents of Children with Special Needs
By Nancy Kennedy
Parents Are the Experts
Parents of children with special needs must collaborate with professionals in various fields in order to meet those needs. Whether the child has a medical condition, a developmental delay, autism or disability, there will likely be a multidisciplinary team of experienced doctors, therapists, teachers, nurses, and others who serve as resources to the parents.These people provide treatment, assessment, and education to help carry out the child’s individual plan of care.
Parents are naturally members of this team, and ideally are the leaders of the team. The parent has the most valuable expertise, as they know the child best and know the child’s history. This role, as the true expert, should be respected by all who are involved in the care and treatment. The child is unique, the parents know their child, and they are committed to providing the best care and creating the best life possible.
Peer Support Is Essential
Support groups can be an excellent resource for parents of children with special needs. They can be found on the Internet, in hospitals, in schools and churches and online on programs such as ZOOM. There are some major benefits: one is the opportunity to meet others who share your experience and can offer empathy that friends and family are unlikely to have. Peer support groups may have older members who are seasoned veterans on this journey. They can serve as mentors and role models, and can provide practical information and solid advice.
Above all, a good peer support group is a safe place to express your fears and doubts, to vent about the overwhelming demands on you, and to find new friends.
Support Groups in Pittsburgh:
Autism Connection: 412-515-3938
Parents Helping Parents of Intensive Care Newborns: 412-641-NICU
Children’s Hospital of Pittsburgh: 724-832-8272
Watson Institute: 412-741-1800
When Life Is Too Full
The care of a child with medically complex conditions is a 24/7 job. The physical care of the child may be sophisticated and skillful, with technologic devices like ventilators and IV pumps that surround him and demand close attention and management. Multiple medications, special feedings and physical therapy demand the parents time, energy and strength. In addition, the family’s other children will have needs of their own. Home based caregivers provide some relief, but the daily demands are overwhelming and the responsibility is huge. It’s okay to come up for air, and ask for help. That can take many forms: respite care, mental health therapy, medications, or time alone now and then. Your case worker or your personal physician can make a referral for you. As much as possible, keep up with your own health care, and live a healthy lifestyle.
Contact Parent to Parent USA www.p2pusa.org for information about emotional support and information