D. Experience-Based Knowledge

Earlier you considered three important sources of evidence: the best available research the policies, and the DEC Recommended Practices about family-professional partnerships. Experience-based knowledge is another source of evidence to help guide your decision-making. Experience-based knowledge is the “know-how” that comes from solving problems, overcoming barriers, and making decisions in everyday life.

CONNECT staff identified parents and practitioners from around the country who have experienced-based knowledge on the topic of family-professional partnerships and invited them to share their views. These knowledgeable spokesperson are:

Janice Fialka
Janice and her husband have two wonderful adult-children, Micah and Emma. They love to laugh together, travel, and discuss social justice issues at the kitchen table. Janice is a social worker, national speaker, author, and is active in the disability justice movement. She is also the Special Projects Trainer for Early On (Michigan’s Part C Training and T.A. system). Micah is one of the new wave of adults with intellectual disabilities who attend college. To learn more about Janice and Micah’s work, go to www.danceofpartnership.com and www.throughthesamedoor.com.
Samtra Devard
Samtra resides in Bear, Delaware, with her husband and their three children, one of whom has a disability. Samtra is the founder of the HOPE Center Network for Families – which operates under the core belief that “Every Child Has Possibilities”. Samtra is a devoted advocate for children and their families and is particularly interested in advocating for systems change. She is a parent leader in numerous national and state organizations and initiatives, as well as a writer and speaker at workshops and conferences nationwide. Samtra holds a Bachelor of Science degree in Chemical Engineering from Drexel University. Learn more at about the HOPE Center Network for Families at www.hopecenterofde.com.
Subarna Dharia
Subarna is a pediatrician whose main area of interest is serving children with disabilities. After working in private practice for several years, she now works for the Infant and Toddler Connection of Fairfax-Falls Church in Virginia. Subarna is also the proud mother of two boys. Subarna works with families of children with developmental delays as a resource of medical knowledge. Her oldest son has global developmental delays and inspired her to help other families overcome the challenges associated with special needs. Subarna is interested in the early diagnosis and treatment of disabilities so that children have every opportunity to succeed.
Rosalia Fajardo
Rosalia is Director of Outreach for the Parent Educational Advocacy Training Center (PEATC). She came to the U.S. from Colombia when her advocacy as a special advisor to the Justice Minister brought threats against her life. Through her background as a lawyer, she has applied her expertise in advocacy, community organization, and empowerment to assist countless children and families with a message of hope and change. Rosalia’s personal experiences as a parent of a child with disabilities and her knowledge of services has made her a lifeline for immigrant families.
Salvadore Moran
Salvadore is an early childhood special educator who works with children who are culturally, linguistically and ability diverse in preschool programs in the Arlington, Virginia, public schools. He strives to empower parents to advocate for their children, seeing the value of building authentic relationships with families. Salvador makes learning meaningful for children by listening to their family stories and building on their funds of knowledge. Currently, he is a doctoral student at George Mason University in the Early Childhood Special Education program, concentrating on social justice for young children and their families.


Now listen to audio clips from phone interviews with these spokespersons and identify important considerations to keep in mind about developing trusting partnerships.

Audio 4.2: Janice Fialka

Janice, the mother of two children, including Micah who has intellectual disabilities, talks about her experiences with teachers sometimes only focusing on the disability and not the whole child (running time: 1 min., 56 sec.).

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I remember one time a teacher called, saying, I have to talk to you about some of the behavior that we’re seeing in Micah in the math class. And I don’t know how I had the chutzpah at that moment but I said, “Well, before we talk about that, can you tell me two things that he’s doing well?” And to my surprise and delight, she said, “oh yes, I can tell you.” And she told me, and then she said “now can I tell you what the issues are?” I think that sometimes perhaps teachers are – maybe because they’re busy or maybe they’re not quite sure exactly how to share the information. They may just zoom into the information and not giving us time to sort of sit with them and be with them. So those are some of my thoughts, I think also I’m not sure how you always do this but I know that as a parent I want to feel a sense that my child is not just the disability or just the delay or just the issues that arise in the classroom or the childcare setting or, you know, the home-based setting, wherever it might be. That he or she is so much more than that and yes, that’s one part of their life, but it’s not the entire part.

For the teacher, the provider, the childcare worker, is that if we as parents express strong emotions, is not to take it personally. That you know if we’re expressing fear or we don’t agree at all is to be, I guess the advice for the teachers would be: sit with it, don’t take it personally. For the most part, it’s not about you. It’s just that we’re experiencing a range of emotion.

Audio 4.3: Samtra Devard

Samtra, the mother of three children, including one who has a disability, talks about the need for families to be heard and for professionals to ask about parents’ hopes for their children (running time: 1 min., 53 sec.).

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I spent probably the first 3 years looking for permission to have hope for my daughter’s future. And that just may sound maybe difficult for some to hear, but it was always looking for those who would partner with us, who not necessarily needed to see what we saw, but definitely supported us, and us being my husband and I, supported us being able to pursue those things that maximize my child’s possibilities.

One of the things that I know families often needed an opportunity to be heard. Sometimes just asking a family what are their hopes for their child. That is an inviting question. Sometimes families, when they are sitting in IEP meetings or IFSP meetings or any type of an encounter with a professional, it’s always about what is the services that this child needs, what friends do you see, and those are all great things those are essential things, but asking a family, “What are your hopes for your child?” that’s the way to, I think, engage that dialogue. It signals that family that you recognize and acknowledge that their child has possibilities, but then it also elevates their role in coming to the table with an opinion and a conversation with some things to add that they are regarded as essential to the work that’s ahead.

Audio 4.4: Subarna Dharia

Subarna, a pediatrician whose main interest in serving children with disabilities was inspired by her son who has global developmental delays, talks about the importance of making sure professionals listen to parents (running time: 1 min., 19 sec.).

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I want the professionals to understand how difficult it is to raise a child with special needs and to think about walking in a parent’s shoes for a moment before just doling out advice and really think about not just physically the difficulties with raising and dealing with a child with special needs but the emotional aspect of it. And really kind of step back before giving instruction per se. So I think that it’s very important for all professionals, just like it is for parents, to listen. Listening and really collaborating with the parents is the ultimate way to improve their child’s success. Because the carryover that is done from the school or daycare area to the home is really important and will only increase the amount of progress and success for that child.

Audio 4.5: Rosalia Fajardo

Rosalia, a mother of child with disabilities, talks about her advocacy work and about how to help families be advocates for their children, especially for immigrant families (running time: 3 min., 01 sec.).

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My first reaction, I still remember, was that “it cannot be” because I’m a lawyer and her father is a mechanical engineer. How can my daughter be mentally retarded? It’s not possible! We’re in the middle class and it cannot be! Then I started to realize that I need to know what it is, everything about. And then this new word, and discover what it is, how I can help in this life. That’s why I came to be an advocate. But it was very hard at the beginning. We have to be in charge of our children’s education and be actively participants in that process. Once one family knows about that, they are the best advocates for their children. And they are really proactive to learn and understand all the rights and all the processes and be an active participant of the education process.

We have many, many issues around ourselves as Latinos and to really trust someone we need to test in all ways possible that they really are taking our children into consideration, that they really respect us and respect our differences I think that the teachers need to understand where we are coming from. Mainly that we do not have a regular life as other members of the community – whites or Anglo-American parents – because we struggle with many things at the same time and that’s what the teachers need to be in consideration. I had an experience of a teacher who after my talks that frequently I do, were apologizing to me. Because she said, well, and she was crying literally, and she said “I thought that the mother didn’t care about the daughter and I never intended to approach her because I just said she doesn’t want to learn English and she doesn’t want to be in the system.” It happened that she really was struggling with immigration papers and she was almost out of her apartment because she didn’t have money, plus with a girl with severe disabilities. And they need to know that we’re not a regular community. We struggle with many other things besides the disability, which is one more on top of all the issues that we have.

Audio 4.6: Salvadore Moran

Salvadore, an early childhood special educator who works with diverse families, talks about the advantages and importance of involving the family in making decisions (running time: 1 min., 30 sec.).

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It’s important to get the family involved. And so that’s, I think, that’s one of the biggest teaching moments when it comes to this type of situation is understanding that you have the power. If the family doesn’t get involved or doesn’t want to take part in this, and they see you as the expert, you have so much power over what happens and if you don’t get it right, you have to live with it. And so it doesn’t feel good when you make the wrong decisions. Not only that but at that point, you start questioning: “Did I get that wrong? I should have involved the parents. The child is not making great gains in this program I should have put him in the other program.” And so that dilemma starts coming up and you start questioning your decisions, when you should have from the beginning of that year or the two years that you had the child been talking about it with the parent, should have been training the parent so that the team makes a decision, not the one teacher that has him. You can totally avoid that type of situation and be comfortable with the decision that is made with everyone involved, not just one person.