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.

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

Reflections on Where We’ve Been: A Mother and Son’s Journey with Dyslexia

Dylan and Nicola at the beach

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

Nicola—a mom of three and an advocate—and her son Dylan, a college sophomore, share what has made their journey unique in hopes of inspiring others. Below, they take turns asking questions and telling their story.


Nicola: I want to start by sharing what I love most about my son. He sees the world in many dimensions. He is inquisitive, caring and creative. Traveling with Dylan is one of my favorite things to do because he sees the nuances and details of the culture, architecture, food and music wherever we are. He expresses genuine joy when experiencing new things. He is very social and adventurous, and people seem to be drawn to him like a moth to a lightbulb. But what I’m most proud about is that after years of struggling with an undiagnosed learning difference, and battling self-doubt, he is a sweet and curious guy and he has found strategies to deal with his learning and attention issues.

Nicola: Do you remember what it felt like for you when you started school?

Dylan: I remember being asked in first grade to write down my name and to describe something I liked. I didn’t know how to write or spell, so I wrote how they do in cartoons with just a scribble in a bubble on the page because that’s what I thought writing was. I felt defeated—like I wasn’t normal, and I didn’t know why. I didn’t like going to school because I felt different, but I did like seeing my friends. Everything seemed easy for them, and it was frustrating that they seemed to understand what the teacher was asking but I didn’t. I kept waiting for something to click.

Dylan: When did you first really know that I was having trouble learning in school? Was it in reading or writing? 

Nicola: When you were young, we knew you had some trouble when it came to sensory things, and we worried you’d be overwhelmed in a big school. So we started you in a small, private school with your brother, hoping that a small community would make you feel secure and you could explore your ideas.

You were very creative and bright, but when it came to writing and reading you avoided the tasks; you had difficulty writing your name, yet your vocabulary was advanced.

When we asked the school why there was such a disparity and to help us figure out what was going on, we were told that you were “all boy” and you had a late birthday, but you would eventually catch up.

I knew there was something else going on, but I didn’t know what it was.

Dylan: At what point did you finally have hope and think it would get better?

Nicola: When you were in the private school, they wouldn’t do an evaluation, so we had to get a private evaluation.

The first big moment was when we finally had a name for what you were experiencing—dyslexia and executive functioning challenges. There was finally a reason why you were having such a hard time in school. However, there wasn’t a roadmap or any guidance from professionals on what kind of intervention services would best help you.

We spent years and a lot of resources finding tutors and trying to get you the services you needed.

It wasn’t until you entered middle schools—this time to our neighborhood public school—that things really turned around.

Finally, the school was proactive. They were quick to complete a full evaluation and get to the bottom of what was happening. They worked with us to put together an Individualized Education Program (IEP) and get the right interventions in place. It was then—once they were able to provide the specific type of reading intervention you needed—that you started to make real progress.

Dylan and his family

 

 

Nicola: What do you think your biggest accomplishment so far has been? And what are your goals?

Dylan: For me, it is being able to retain knowledge at a higher level and overcome my struggles with writing and reading.

It’s hard because dyslexia never goes away. I still have to work twice as hard as my peers. Ironically, it has made me a better student, and I have been on the honor roll since 10th grade.

Taking the SAT and ACT was difficult, but I was still accepted into many colleges including Loyola Marymount in Chicago, University of Colorado, Colorado State University, San Francisco University, Syracuse University, Oregon State University, Temple University  and San Diego State University. Receiving those letters of acceptance made me feel that they valued my learning style and I had something important to offer.

In the future, I want to have a successful career that I enjoy and allows me to be creative. I am interested in design, and I can see taking my ideas into the world of advertising or clothing design.

What is very important to me is that I am surrounded by friends and family and never stop learning.

Dylan: What has been the best part of this whole journey for you?

Nicola: Even though it was hard to see you struggle and it took a long time to figure out how to help, the best part is that you taught me how to be an advocate.

You taught me that in order to succeed, you have to build partnerships. You can’t accomplish things alone, and if you don’t speak up then nothing will change. I have also met a wonderful community of other parents and educators who are passionate about children and a career that I love and never imagined doing.

Dylan: If you could talk to every parent who’s dealing with some of the same worries, what would you tell them?

Nicola: First, I would tell every parent to trust their instincts; if you feel something isn’t right with your child’s education then reach out to your teacher or pediatrician.

I would add that parents should get involved and know their rights. It is every child’s civil right to an education and because of the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act, there are protections for your child.

If your child struggles with dyslexia, make sure he receives the correct evidence-based intervention services. Question everything, but also listen and learn. You don’t have to be an expert, but you do need to be an educated consumer.

Get involved, connect with other parents and educators, and create a team to work on the situation together. You can’t and shouldn’t do this alone.

Nicola: What’s one thing you want to say to younger kids who, right now, are where you used to be?

Dylan: The world isn’t built for us, but we shouldn’t conform to regular learning styles. You have a unique brain and you can use that brain to solve problems and come up with solutions that other people couldn’t even conceive of. When school is difficult, it doesn’t mean you should give up. It means you should try twice as hard and figure out a way to change the system. You cannot change the past but you can shape your future.


About the authors:

Dylan Frost is a sophomore in college, majoring in product design and development. He is an avid soccer player, ceramic artist, and world traveler when there is time. He is active in his fraternity and looking for an internship this summer in product design.

Nicola Frost is the Regional Field Manager (Colorado) for National Center for Learning Disabilities (NCLD). Prior to becoming an advocate, she was an Emmy-award winning producer for the Food Network and directed documentaries. Her passion is in civil rights for all underserved communities. When she isn’t advocating she is biking the Rocky Mountains and kayaking with her family.


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.

Dylan
Posted by
College sophomore majoring in product design and development
Nicola
Posted by
Mom of three. Regional Field Manager, National Center for Learning Disabilities (NCLD)

High Achievement Requires High Expectations: My Family’s Story

Candice Crissinger and children

Candice Crissinger and children

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


“High achievement always takes place in the framework of high expectation.”

Charles Kettering, American inventor, engineer and businessman.


As parents, we all want to see our children reach their full potential. Our visions of their successes and accomplishments may vary, but we all yearn to guide our children to greatness. How do we set them up to fulfill their potential? What foundations are we building for them? What roadmaps can we provide to help them navigate on their journey?

I am the proud mother of three terrific children (Biased? Yes!). While each of them is unique and inspiring in their own abilities and qualities, my sons have some very distinct similarities.

In the early school years, both began showing similar behaviors: high impulsivity, defiance, acting out, disruption, the inability to follow direction and under-developed social skills.

Both were bright and strong willed and insisted on doing things their own way in their own time.

Both were identified by educators as “challenging and difficult” and by peers as a “bad kid.”

They were both evaluated at five years old, 10 years apart. That’s where the similarities ended.

Let’s start with my older son’s journey.

In 2007, at age five, he was diagnosed with attention deficit hyperactivity disorder (ADHD), pervasive development disorder otherwise non specified (PDD-NOS) and anxiety. His individualized education program (IEP) team, despite all good intent, viewed my son through a deficiency lens. We let the troublesome behavior take the driver’s seat. His aptitude for learning did not seem to align with his behaviors. The behaviors escalated. The suspensions began. His progress regressed, and his growth stalled. We changed schools often. Even though we began as advocates, we soon became adversaries in IEP meetings.

On the other hand, my youngest son has had a very different experience. At age five, he was diagnosed with anxiety and showed a high likelihood of having ADHD. He was also identified as gifted. We worked closely with his school to find a teacher who was a good fit and we collaborated with the occupational therapist, the talented and gifted team, and the area education team, just to name a few.

We first took a close look at youngest son’s evaluation and began the work of identifying supports and developing a plan for acceleration. His problem behaviors were seen in the context of his aptitude and understood as a part of his development as a twice-exceptional student. His IEP centers around his strengths. And yet, we have only just begun to build the foundation of his future achievements. There is still far to go.

If you ask me, the major difference between my two children is in the way that we view them. After all, children with learning and attention issues have a unique set of challenges, and my children are not alone.

Children with learning and attention issues make up 1 in 5 students in our nation’s public schools.

Kids with learning and attention issues account for two-thirds of the children with IEPs who are suspended or expelled. They are 31 percent more likely to be bullied than kids without disabilities. They are three times as likely to drop out of high school as kids without disabilities, and half of all kids with learning disabilities are involved in the juvenile justice system by young adulthood.

These numbers could describe my oldest son, and that is alarming for me.

What drives these numbers? And what can be done?

We must set high standards and expectations for our kids. We must encourage and support our kids to meet the same expectations as their peers, and make sure they are engaged and feel a sense of ownership of their learning. We must encourage our students to view a wrong answer as a learning opportunity, rather than a shortcoming.

We expect insight and reflection to instill a lifelong journey of learning. Our expectations should likewise remain lofty.

When we have low expectations of our students, we allow for minimal effort. Student engagement, self-advocacy and achievement will most definitely stall when the bar is set too low. Self-esteem and gaining a sense of confidence in one’s abilities are lifelong benefits with roots in meeting high expectations.

We can make high expectations real for so many more kids if we focus on their strengths. Using strengths as a framework for educational support and structure will allow for children to use their natural abilities and talents to reach their highest potential.

Across the country, school districts are taking a new approach with Strengths Based IEPs. The move to this type of IEP will certainly require greater professional development for educators in each district. Parents can go to school board meetings and demonstrate their value, but there are great resources for anyone who wants to begin this process within your school or community.

Using a strengths-based approach made an incredible, positive difference for my younger son. Setting high expectations and focusing on strengths allows parents and educators to view our students through a mindset of competence and high achievement. The tools are available and my family has seen the impact firsthand. So let us begin the work to build the foundations of an exceptional educational experience for every child!


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.

Candice Crissinger
Posted by
Understood Parent Fellow with the National Center for Learning Disabilities. Medical Assistant in Pediatric Specialties, University of Iowa.

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