A Family’s Unplanned Journey

1. A Family’s Unplanned Journey Raising a Child with Special Needs

2. Parent Education Network (PEN) Parent Education Network (PEN) is a Parent Training and Information Center (PTI) that provides training and assistance to parents of children with disabilities and to parents of children with learning and behavior problems.

3. IDEA Section 300.30 – “Parent” Parent means-- (1) A biological or adoptive parent of a child; (2) A foster parent, unless State law, regulations, or contractual obligations with a State or local entity prohibit a foster parent from acting as a parent; (3) A guardian generally authorized to act as the child's parent, or authorized to make educational decisions for the child (but not the State if the child is a ward of the State); (4) An individual acting in the place of a biological or adoptive parent (including a grandparent, stepparent, or other relative) with whom the child lives, or an individual who is legally responsible for the child's welfare; or (5) A surrogate parent who has been appointed in accordance with Sec. 300.519 or section 639(a)(5) of the Act.

4. Welcome to Holland https://www.youtube.com/watch?v=r15PuYoID94&rel=0

5. In the beginning… • Strong Emotions • Difficult Choices • Interactions with many different professionals and specialists • Ongoing need for information and services • Changing family/relationship dynamics

6. Common Emotions…

7. Common Thoughts and Reactions… • “I wish we were like other families.” • “ My family members, relatives and people in my neighborhood think I’m not a good parent.” • “I am afraid of what will happen to my child if I wasn’t around.” • “I am getting so much pressure from family and school. I am so concerned and confused. Maybe I should try different diets and/or medications, even though I fear what might happen.” • “Will my child be able to make safe decisions as he gets older?” • “Will my child be able to take care of himself once I am gone?” • “I wish people would see my child’s good qualities instead of all the problems.”

8. The Grieving Process

9. Denial… • “ This cannot be happening to my child. I completely disagree with the diagnosis!” • “This is not my child. She can do what you’re asking, under the right conditions. She is just having a bad day.” • “He’ll outgrow it. Everything will be fine!”

10. Anger… • “I hate this!! I give up! Why is everything always so hard on me?” • “Why me? Why my child? What did I do wrong?” • “If the teachers/doctors/insurance company/society would just do what I tell them to, everything would be fine.”

11. Bargaining… • “If I quit my job/sell my business/dedicate my life to getting that out-of-district placement/cure/experimental therapy, everything will be fine.” • “If I am a good mother who serves only healthy food and follows through with the sensory diet and all the therapy appointments, then my child will miraculously, magically become neurotypical.”

12. Depression… • “No matter what I do, nothing will ever be fine. Ever.” • “What’s the use? Nothing I do makes any difference. Nobody cares about me or my child. My child is who she is, and there’s nothing I can do about it.” • Nobody understands what I am going through or how difficult this is. I might as well sit in my messy house and let my kid zone out all day?”

13. Acceptance vs. Adaptation • “It is what it is. Sometimes it’s actually fine.” • “My child has some amazing strengths. There is a place in the world for her. I will do everything in my power to make sure she has what she needs to live a productive life.” • My son is truly a gift. I love him for his uniqueness! • I had big dreams for my child. I am now learning to dream differently.

14. Challenges to Adaptation…

15. Ways to Help Families… • Attempt to understand family life • Learn about the child’s disability and special needs • Communicate positively with members of the family

16. Understand Family Life… Respect the extra work it takes for families to care for and educate children with special needs: • Therapy Appointments (OT, PT, ST, MT, etc.) • Medical Appointments (Multiple specialists) • Behavioral Health Rehabilitation Services (BSC, TSS, MT, etc.) • Medications/Special Diets • Sleep Issues • Rigid Routines • Financial Strain • Marital Strain • Sibling Strain • Difficulty finding childcare/respite • Social Isolation

17. Learn About the Disability… Understanding a disability can help you better plan for the child’s learning and better meet the family’s needs…. • Child’s family may be best resource for information • Borrow books/library • Internet search • Publications/newsletters from various organizations • Talk with other parents of children with special needs

18. Communicate Positively with Families… TWO-WAY communication between families and professionals is KEY!! Introductory meetings are helpful in: • Getting to know each other/the child • Learning about family’s goals for their child’s learning and development • Learn about the culture of the family • Discussing roles/expectations and program specifics

19. Communicate Positively with Families… Be consistent and follow through Listen with acceptance and understanding of family’s concerns and feelings Be honest and offer realistic encouragement Provide appropriate resources Assist parents in building their confidence about their parenting skills Focus on the positive/child’s strengths & interests

20. Additional Thoughts… • Not all “Gloom and Doom” • Evidence of resilience in many families of children with special needs • Personal Transformations: • New roles in family, community, careers • New traits (ability to speak out/advocate) • New found convictions and faith • Relational Transformations: • New perspective on life and how to relate with others • Stronger marriages/Healthy family outcomes • New friendship networks

21. The Cracked Pot https://www.youtube.com/watch?v=RcdR0msPs90

22. References Barnett, D., Clements, M., Kaplan-Estrin, M. & Fialka, J. (2003). Building New Dreams: Supporting Parents’ Adaptation to their Child with Special Needs. Infants and Young Children, 16 (3), 184-200. Parenting a Child with Special Needs (ND20, 3rd Edition, 2003). NICHCY. Retrieved August 18, 2014, from http://nichcy.org/families-community/journey or http://www.parentcenterhub.org/repository/journey/ Ray, J.A., Pewitt-Kinder, J. & George, S. (2009). Partnering with Families of Children. Young Children, 64(5), 16-22.

23. For Additional Information The Center for Parent Information and Resources (CPIR) serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities. http://www.parentcenterhub.org/

24. For Additional Information The mission of the Pennsylvania Training and Technical Assistance Network is to support the efforts and initiatives of the Bureau of Special Education, and to build the capacity of local educational agencies to serve students who receive special education services. http://www.pattan.net/

25. For Additional Information The Parent Education & Advocacy Leadership Center (PEAL Center) was established in October 2005 as an organization of parents of children with disabilities reaching out to assist other parents of children with disabilities and special health care needs, and professionals. 1119 Penn Avenue Suite 400Pittsburgh, PA 15222 412-281-4404866-950-1040 Toll Free412-281-4409 TTY412-281-4408 Fax pealcenter.org

26. For Additional Information