From Miami to New Jersey

October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month


Veronica and Myriam Alizo

Veronica and Myriam Alizo

When my first child was born I was a young and inexperienced new mother. My husband and I had just moved to the United States from Venezuela, and we were far away from our relatives.

I wasn’t sure if I should speak English or Spanish to our first daughter, and felt really perplexed. Everyone told us to stick to one language because children might get confused when they were spoken several languages at a time.

Once I realized my daughter had a speech delay and attention issues, I started to read everything I could about early child development. I felt very overwhelmed and isolated.

The pediatrician referred our child to an evaluation center in Miami where we lived. All our concerns and intuition were confirmed: our four-year-old child had some type of learning disability. The year was 1994, and I didn’t know anything about Individualized Education Programs (IEPs) or the Individuals with Disabilities Education Act (IDEA).

Veronica’s private speech therapy sessions were conducted in Spanish. Since we lived in Miami, a very bilingual community, the Spanish-speaking speech therapist recommended us to enroll our daughter in a bilingual cooperative preschool that existed in the community. The preschool teacher referred our daughter to our school district to have a series of tests. Then, Veronica had her first IEP. A few IEPs later, it was determined that Veronica not only had a learning disability, but she also had “pervasive developmental disorder not otherwise specified.” In other words, she had a form of autism.

When Veronica was in the fourth grade, I found a flyer in her book bag about an organization that would assist parents of children with IEPs understand their rights. That flyer changed my life!

The organization was Parent to Parent of Miami, a federally funded Community Parent Resource Center in South Florida. I contacted them and got all the information and assistance I needed at the time. Then, I decided that I wanted to work there! I wanted to help other parents, especially immigrant parents like me, understand their rights and get involved in their kids’ IEP process.

My lucky day came a couple of months later when I found another flyer in Veronica’s book bag. This time the flyer said that Parent to Parent of Miami was looking for bilingual parents of children with IEPs to work helping other parents. The year was 2000, I got the job, and I have been working within the Parent Center Network since.

Another big move awaited us, and we ended up living in New Jersey. As soon as I knew we were going to live in NJ, I contacted the SPAN Parent Advocacy Network, the New Jersey Parent Training and Information Center, to get information about the school system in our new state and to get a job or a volunteer position at the parent center. I started working at SPAN in 2003.

During my 15 years at SPAN, I have worked on several different projects from helping parents organize advisory groups to training parent mentors under New Jersey Parent to Parent to coordinating the OSEP English to Spanish Translation Glossary project to working on two national projects assisting parent centers across the regions.

My trajectory at SPAN has helped me empower my daughters to speak up, fight for their rights and have high expectations in their lives. It also has made me appreciate the impact of the civil rights and the disability movements in our society at the local and national level as well as globally as an international community.

Veronica attended a public high school in northern New Jersey where students with and without IEPs share the same building; and for most of the students, they also share classrooms and after-school activities. Veronica grew up in a naturally inclusive environment and was part of her high school basketball team. She participated in several SPAN transition-to-adulthood trainings and workshops. In addition to her high school academic courses, Veronica sampled jobs in the community, volunteered for several years at a summer camp for younger children in the spectrum, and learned to use public transportation as part of her IEP goals.

Now, Veronica is an adult who takes classes at the local community college and has a very active social life that includes a fiancée. Recently she got her driver’s permit and was admitted into the 2018-2019 New Jersey Partners in Policy Making cohort.

As for speaking English and Spanish with my daughters, I speak both languages with them, and it’s wonderful.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Posted by
Center for Parent Information and Resources (CPIR) at the SPAN Parent Advocacy Network

Autism—A Family’s Journey and the Lights Along the Way

Note: April is National Autism Awareness Month.

Carolyn Hayer with son Chris and their family

Carolyn Hayer with son Chris and their family


Carolyn Hayer is the Director of Parent and Professional Development at the Statewide Parent Advocacy Network (SPAN) in New Jersey, a federally funded Parent Training and Information Center.


Autism.

There was a time when I couldn’t even say the word out loud. It was too painful, too devastating to utter. I wanted to believe that if I didn’t say the word, it didn’t exist. But it does exist; it’s real, and it’s beautiful, and it’s challenging all at the same time. And whether I say the word or not, my son Chris has autism.

I’ve been on this autism journey for 30 years now, more than half my life. Back in 1990, when Chris was first diagnosed, there was no autism awareness month, because there wasn’t autism awareness. Family, friends, and neighbors looked at me quizzically when I shared his diagnosis. What does that mean? How did he get it? How do you cure it? But I did not have the answers. Even the multitude of doctors we saw could not provide the answers. Since that time, there has been an exponential increase in the number of children diagnosed, and almost everyone has been touched by autism in some way. So today, when a family shares the diagnosis, others are usually aware of what it means.

As I reflect on the past 30 years I recall so many memories.I remember, as if it was yesterday, sitting in the doctor’s office; the diagnosis confirmed my fears following months of research into what might be causing the unusual behaviors of our little boy.

I remember…calling anyone and everyone I thought might help my family; the feelings of isolation at the playground, Sunday school, birthday parties, and all the other places where we just never seemed to fit in; the stress before every outing, wondering if there would be a meltdown or some other embarrassing event; wondering if my marriage would survive the stress; and the feelings of inadequacy for not parenting my children the way I thought I should have.

I remember the fear, guilt, and sheer terror of not knowing where my child was that day when he wandered off. But I also remember the intense relief and gratitude I felt when he was found.

I remember the vast uncertainty I felt when Chris was diagnosed, wondering what his life would be like as he grew to adulthood. And now that we have reached that point, I want to share some of the bright lights we encountered along the way, especially for those of you who may be new to the journey.

When he was four, I remember watching Chris climb aboard the school bus to begin the 45-minute ride to his “special” school. My gut told me that he needed to be with his community friends, and I spent years trying to persuade my school district to serve him in our local school. I learned about Chris’ right to be included with his neighborhood peers when I attended a workshop hosted by the New Jersey Statewide Parent Advocacy Network (SPAN), our state’s federally funded Parent Training and Information Center. SPAN became one of the bright lights on our path. The information our family received from SPAN allowed us to develop an IEP (individualized education program) that brought Chris back to our home district for high school. I remember watching anxiously as he disappeared into the building on his first day of high school, also his first day of school in a general education setting. Despite my concerns, I remember how kind and supportive Chris’ peers were to him; serving as beacons lighting our journey. I remember Chris learning math, reading, and how to play an instrument—things I was told he wouldn’t be able to do—and working with teachers who never gave up on him. And I will never forget, four years later, watching him climb into a limo with friends to attend the senior prom. My heart was so full of happiness and pride I thought it would burst.

This journey has taught me a great deal; autism has been my teacher for some of life’s most important lessons:

Gratitude.

Autism helps you to be grateful for the small things, the things you might have overlooked had they not been such a struggle to achieve: hugs, first words, friends, independence, general happiness and physical health. I’ve learned to take nothing for granted.

Community.

I continue to be in awe of, and inspired by, all the people we’ve met on this journey, most of whom have gone out of their way to help us any way they could: doctors, teachers, therapists, neighbors, friends, strangers, other families on the same path, and my colleagues at SPAN. Today, Chris has a circle of support that makes it possible for him to live a full, rich life. My husband and I appreciate the love and support of family; siblings have been caretakers and cheerleaders, and extended family members step up and help, no questions asked. Autism has taught me that I can’t do it all alone, no matter how hard I try. We need the support of others and must learn to accept it graciously.

Courage.

Fear is an everyday struggle on this journey. I fear what will happen today and in the near future, and dread what might happen to my child when I’m not able to care for him. I feel trepidation in trying something new, and doubt with every life decision. But sometimes I must take a leap of faith. In this, I have always been rewarded, either with success or increased knowledge, both very valuable. I have learned to trust in myself and follow my gut.

Forgiveness.

Of yourself and others. Don’t hold onto past mistakes and don’t carry the burden of anger and resentment toward others. Learn to let go, learn from your experiences, and move on.

Humor.

Laugh at yourself and your circumstances. Laughing releases endorphins and helps you feel good. We can learn a lot by seeing the world through a different lens and by not taking things—or ourselves—too seriously.

In closing, what I want to share with you more than anything is how immensely proud I am of Chris and all he has accomplished. He is a 30-year-old man living with autism, working and volunteering in the community, and often struggling to find his voice and get by in a world that can be overwhelming for him. Yet he manages to do it with dignity and grace, with unwavering support from the circle of love and light that surrounds him—his parents, siblings, and extended family; his peers, support staff, and therapists; our neighbors and friends. I shall always be thankful for Chris and the guiding lights that autism brought into our lives.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

A New School Year and New Opportunities

Map of U.S.

This is a repost of a Disability.Gov Blog post by Carmen Sánchez, Education Program Specialist, Office of Special Education Programs at the U.S. Department of Education and Debra Jennings, Executive Co-Director, SPAN.


A new school year is a new opportunity to build the relationships that strengthen the foundations of support that are so important for our students with disabilities. As one parent engagement professional stated, “Parents and schools should reach out and open lines of communication in a time of peace before that first poor grade or behavior issue. Find out how people would like to be addressed and their preferred method of communication.”

But how does a parent start the conversation in a way that is focused on strengths just as much as need? A Positive Student Profile is a great way to introduce a child to teachers at the beginning of the school year. Here’s an example of one way to introduce the profile, which can be customized to fit your student:

Dear Mr. Rogers,

Alex and I are excited about this new school year! I am writing to share some things I believe will help make this successful year for him. You likely received Alex’s individualized education program and are thinking about how to implement the supports and accommodations listed in his IEP. But while the IEP does a good job of describing Alex’s learning and needs, it doesn’t fully describe him or who he is. I am including a profile (http://www.parentcenterhub.org/repository/pbp-student-profile/) that Alex prepared that tells about his interests, his strengths, and what works best for him to help him learn.

Our family has high expectations for Alex, just as we have for his sister. And we know that he requires some supports and accommodations to meet these expectations. We are always looking for information about Alex’s abilities and challenges. We have come across several resources that have really helped us and Alex’s teachers work together to help Alex learn. Here are some that might be of interest…

Want more tips on how to make the best of the new school year? The Parent Training and Information Center (PTI) or Community Parent Resource Center (CPRC) in an area or state is an excellent source of resources, materials, support and connections for families of children with disabilities. PTIs and CPRCs can help families understand student’s education rights under the Individuals with Disabilities Education Act (IDEA), Every Student Succeeds Act (ESSA), Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act. They can also help families understand more about their child’s disability and needs as well as promising practices in education. In addition, they can help families learn how to effectively communicate and work with school personnel and other providers in meeting their child’s needs. PTIs and CPRCs provide information on the phone, through workshops (in-person, on-line, live and pre-recorded) and through a treasure trove of materials and resources that are shared on their websites and social media. They may also provide these materials in other languages based upon the needs of families in the community.

Centers are run by well-trained and knowledgeable staff, most of whom have children with disabilities themselves. PTIs and CPRCs answer families’ questions with practical advice or refer families to other organizations in the families’ community that can help. Most centers also extend their training and information services to professionals who work with children with disabilities and their families. And through the PTIs and CPRCs, families can also connect with other families and professionals for support and problem solving.

Many families can feel overwhelmed dealing with multiple issues raised by their child’s needs. PTIs and CPRCs help families sort through the issues and provide strategies to help parents and professionals address them together.

In addition to the PTIs and CPRCs, the U.S. Department of Education’s (ED) Office of Special Education and Rehabilitative Services funds a network of technical assistance and dissemination centers that can connect parents and professionals to best practices in special education and early intervention services. Some of these centers include:

And, check out ED’s Early Learning site full of information.

Finally, the new school year is an excellent time for students, no matter what their age, to learn how to advocate for themselves. Whether it’s focusing on using a communication device to indicate what they want or need, or leading their own individualized education plans, parents and teachers can work together to include self-advocacy skills in all that they do with students with disabilities. One good resource is the RAISE Center, Resources for Access, Independence, Self-Advocacy and Employment, also funded by the Department of Education, and the National Resource Center for Supported Decision-Making, funded by the U.S. Department of Health and Human Services.

Here’s to a positive, productive new school year for all students!

About the Guest Bloggers

Carmen Sánchez

Carmen Sánchez

Carmen Sánchez is an Education Program Specialist in the Office of Special Education Programs at the U.S. Department of Education. She is the program lead for the Parent Center Program, which consists of grants for Parent Training and Information (PTIs) and Community Parent Resource Centers (CPRCs) to train, inform, and engage families of children with disabilities throughout the country; and a national, six regional, and two topical technical assistance centers that support the PTIs and CPRCs. She is also the mother of a young adult with disabilities.

Debra Jennings

Debra Jennings

Debra Jennings is the Executive Co-Director of SPAN, a parent-led non-profit organization that empowers families as advocates and partners in improving education, health, and mental health outcomes for infants, toddlers, children and youth. Debra leads SPAN’s parent leadership development activities and also directs SPAN’s national technical assistance centers that are funded by the U.S. Department of Education to provide information, resources and support for the almost 90 Parent Training and Information Centers and Community Parent Resource Centers serving families of children with disabilities and also youth/young adults with disabilities across the U.S. and its territories.

Posted by
Education Program Specialist, Office of Special Education Programs, U.S. Department of Education
Posted by
Executive Co-Director of SPAN