Real Life Stories

One Father's Journey of Love for His Son

By Henry Tejada
Parent Leader
New Jersey Statewide Parent Advocacy Network (SPAN)

Mercedes Rosa
Director, Family Voices/Family to Family Health Information Center & Culturally Competent Outreach & Support Project of the Statewide Parent Advocacy Network of New Jersey

May 21, 2006 was the happiest day of my life--my first child was born. Family and friends celebrated with us and each day we watched his development with great anticipation.

I began to worry about his development when he was about 12 months old and not reaching the targeted milestones. My son at times appeared deaf and would not respond or make eye contact and did not play appropriately with toys.

We contacted the early intervention program in Hudson County and within 40 days someone came to our home to evaluate my son’s development. I also took my son to a developmental pediatrician and he was diagnosed with autism. Autism, a-u-t-i-s-m, the words and letters rang hollow at first. Then I began researching, and the implications of this diagnosis seemed to slowly shatter our world. What would this mean for his future?

We struggled to accept his diagnosis while moving forward with the therapeutic and intervention services recommended by the Early Intervention (EI) team. I began to grow extremely frustrated after just a few months and I saw no evidence of progress. I questioned my son’s EI Case Manager and requested some additional services for my son who had become increasingly more withdrawn since we started therapy. I was not prepared for the personal attack that ensued after my simple request for additional services. The EI Case Manager reported my family to the Division of Youth and Family Services for suspected abuse and medical neglect. The case was investigated and later closed due to no evidence supporting the claim.

I decided to seek help and other supports for my family. I was connected to Mrs. Yolanda Quintero who is affiliated with New Jersey Family Voices and Parent to Parent and Mrs. Mercedes Rosa, Director of the New Jersey Family to Family Health Information Resource Center (F2F HIC). New Jersey Family Voices and Parent to Parent are funded through the New Jersey Maternal and Child Health Block Grant, and the F2F HIC is funded by the Maternal and Child Health Bureau. This was the beginning of a new chapter for me and my wife.

We were literally overwhelmed by the support and attention we experienced. We immediately participated in a parental training series that SPAN offered in my county. We joined the monthly support group, Winning Angels that Yolanda created to support Immigrant families of children with special health care needs (CSHCN). I was thrilled to meet other dads and Latino families that had CSHCN and also were victimized by state agencies when they tried to advocate on behalf of their children.

Meeting these incredible people truly opened up a world of learning and opportunities for my family. I began attending conferences and joined other local support groups for autism that I never knew existed. I was amazed at the amount of supports that existed and wondered why they were so difficult to locate. What good are programs if you don’t know they exist? I was so glad that I was connected to SPAN and they have been a source of strength to my family.

We have learned so many things. I am extremely grateful for all the information, patience, and significant investment of their time they so willingly have given to help me become a better parent for my son. I learned about my parental rights and how to navigate the healthcare and educational system which has made all the difference in the world for my family. I was recently able to advocate for my son’s needs at his very first Individual Education Plan meeting. I understood and exercised my rights and role at the meeting and helped to develop a well thought out educational plan that will address his needs.

I am training to become a parent leader for the Statewide Parent Advocacy Network (SPAN) and I continue to attend support groups so that I receive and give support to other dads who may attend the meetings. I realize that my journey is just beginning as a dad and I am only starting to really navigate this complex world of children with disabilities. Now three years later I think that I may have made more progress than my son. I know that that will change because I feel more equipped and ready to help my son and to make the world and my community a more welcoming place for him. I realize that I need to remain involved and relevant in every aspect of his care so that the systems that were created to help us and him do not hurt us instead.

If it were not for all the help I received, I am not sure where my family would be right now. We are a strong couple and have all the supports we need, and most importantly, we know how to access them.

To learn more about SPAN, visit http://www.spannj.org/.