Video

The Parent Professional Relationship

Steve Perreault discusses the relationship between the parents of a child with disabilities and the professionals who serve and educate the child.

In this webcast, Steve Perreault discusses the often sensitive issue of the relationship between the parents of a child with disabilities and the professionals who serve and educate the child.

Professionals often find themselves frustrated that parents don’t follow through with recommendations; however, the problem is not with the parents, but with the relationship. Teachers and other professionals need to make an effort to understand the challenges that parents face in dealing with the negative messages about their child and the parents’ own fears about making wrong decisions in the face of conflicting professional advice.

Starting in the earliest years, parents and professionals can work together to bring about the best possible education for the student, while keeping the student’s long-term happiness and well-being at the center of the dialogue.

Read full transcript »

Presented by Steve Perreault

Length of time to complete: approximately 30 minutes

Chapters:

  1. Introduction
  2. Understanding the Parents of a Child with Disabilities
  3. The Early Intervention Relationship
  4. Educational Planning and Parental Input
  5. Recognizing and Respecting Long-Term Goals
  6. Parent and Professional: An Evolving Relationship

CHAPTER 1: Introduction

The Parent Professional Relationship with Stephen Perreault.PERREAULT: The number one thing I hear — I hear it here, I hear it everywhere — is, “We just can’t get the parents to do what we want to do.” We have these things and they should be practicing and they agreed to it, but they just don’t do it.

In my mind, that’s a hierarchical relationship. You’re telling people without understanding who they are what other demands are on their lives, what their desires are, what their challenges are, what their abilities are.

You’re telling them to do something and then you’re frustrated that they’re not doing it. Maybe they can’t, maybe they won’t, maybe there’s another way, but that’s not the problem. The problem is the relationship.

NARRATOR: In a video clip, a toddler with blond hair and pink glasses listens to music on a cell phone. The girl is multiply disabled and visually impaired. Her mother stands behind her and supports her as they dance to the music.

The scene then transitions to a meeting between the mom and an early intervention specialist. The mother and specialist exchange information regarding the young girl’s progress.

PERREAULT: We as educators or providers, sometimes, I think, can lose our perspective that at maximum usually we have no more than 30 hours a week with this person that we’re teaching and are providing services to. And much more of their life is away from us, and yet we can develop the habit of thinking our time is the only time and the most important time. And our goals are the only goals. And we have the power, and we have the knowledge to shape this individual’s life.

But for the individual — the child, the young adult — the quality of their life will be much more reflective as to how they fit in every part, all the hours, all the situations. And that quality is driven from the partnership between home and school.

CHAPTER 2: Understanding the Parents of a Child with Disabilities

PERREAULT: It’s still very common throughout the world that parents are given fairly negative messages at the birth of a child with a disability. Most of the terminology they hear is about the child being less, the child being damaged. It may be couched in scientific terms, but if you really listen to it, it’s, “You’re child is missing something.” “Your child doesn’t have something.” “We may be able to fix your child to a certain extent, but we can’t fix them totally.”

The boy wears glasses with thick corrective lenses as well as bilateral hearing aids. NARRATOR: In a photograph, a young boy in China is gazing straight into the camera. The boy wears glasses with thick corrective lenses as well as bilateral hearing aids. Because of the unusual shape of his ears, the earpieces have been taped to his ears to keep them in place.

PERREAULT: And the hopes and dreams and expectations that family has are challenged. They still may be very positive, very excited, but they’re challenged. Particularly for many of the children that I come in contact with, which are children who are deaf-blind or with multiple disabilities, parents often, too, end up having interactions — actually, if they’re lucky — with multiple different professionals with different personalities, different perspectives, different recommendations, different ideas, often conflicting.

And so again, their confidence is challenged. Their decision-making is challenged. Sometimes they feel, “There is no right decision “and I am risking the future of my child “by what I decide today, even though I don’t have all the information to make that decision.”

CHAPTER 3: The Early Intervention Relationship

PERREAULT: In the case of the early intervention law in design of services in the United States, the focus is supposed to be family and the placement of that child in that family, and not just the child, but the child in context of the family and how to support that connection to the family.

Initially, one of the biggest challenges, depending on the type of disability of the baby is the bonding with the family. A child who can’t see will not develop the same eye contact, will not respond to the same faces and smiles of the mother than a child who could see. A child who can’t hear won’t receive the recognition of his mother and father or grandmother’s voice and will socially respond differently.

A father holds his young child, who is visually impaired.And the professional should be looking at how to compensate for that, how to support that bonding process, how to develop play with the parents, who have a child who’s responding differently, that needs different roots to respond in order to play, in order to bond, in order to give back those smiles, in order to enjoy those first few months in the home.

NARRATOR: In a photograph, a father holds his young child, who is visually impaired, in his right arm and offers a bright pink and yellow plastic ball for the child to touch and explore. The ball contains a bell that attracts the child’s attention when it is shaken.

PERREAULT: And to grow from that. A child who has physical issues with vision issues won’t venture out, won’t explore, and that’s an important challenge to overcome because that exploration is how that child gains knowledge of his environment, his or her environment, and starts to develop concepts about the world that are widely important for learning language and for later learning and will impact the rest of his or her life.

But I think that what happens in those initial first years can very much impact the feelings parents have about “professionals”. Or people outside of the family.

CHAPTER 4: Educational Planning and Parental Input

PERREAULT: I think in education, when the child is school age, it can be difficult because we’ve become more and more regulated in what school is about — what needs to be taught, what needs to be accomplished.

But if that education, to me, diverges too broadly from a connection with the life of the family and the choices of the family and the goals of the family, many times what is taught during the school day is lost in the home environment because there’s no mutual agreement, mutual collaboration, to bring those skills forward. And I think it’s critical.

Meeting between the early intervention specialist and the mother of the young girl who is multiply disabled and visually impaired.You know, the education law says the parents have a lot of right to oversee the individual education plan of the child and have input to it, to have a statement of what their values are and what their priorities are.

NARRATOR: Again we see the meeting between the early intervention specialist and the mother of the young girl who is multiply disabled and visually impaired. The mother has a dossier of her daughter’s medical history that will help to inform the development of an educational plan for the girl.

PERREAULT: In reality, though, it’s a legal process. And the language has been evaluated over and over again to make sure that it fits the legal requirements but may not fit the common understanding of families who are not part of the education system, who have not been trained or had advanced degrees in education terminology.

So that there are many ways that you can do all the right things with parents being involved — and the actual process of deciding the education plan for the child, and the parents are at all the meetings and they sign all the papers — but if you haven’t done the background work and the education, really, the parents are left out. Because they really didn’t, at their heart, understand what was being said or what was being signed.

CHAPTER 5: Recognizing and Respecting Long-Term Goals

PERREAULT: There was a survey done by the National Family Association of Deaf-Blind and another one by Dr. Jerry Petroff. They’re looking at what are parents looking for when their child is ready to leave school. Also, informally, it’s something I’ve asked in many groups of families. Overwhelmingly, the number one thing is, “That my child be safe.” And, “That my child be protected.” And the number one worry is, “What’s going to happen to my child after I’m gone?”

A young woman is preparing traditional Indian bread over a propane burner.NARRATOR: In a photograph, a young woman who attends a school for students who are deaf-blind and visually impaired, is shown preparing traditional Indian bread, or naan, over a propane burner. The cooking instruction is intended to help her develop her independent living skills.

PERREAULT: Well, it’s a worry of parents. And I think it’s very hard for some to participate, honestly, in a process of planning how to leave school and go into adulthood if the level of concern about that safety is so high that it’s hard to invest in other kinds of goals or other kinds of activities.

Underneath that, some of the other things you see is, that my child as an adult be loved, have friends, have a community. And yet, I think we know as professionals, that’s one of our biggest challenges, is creating that connection between a child, particularly those with the most complex disabilities, in a larger world with people that create an interrelationship that’s valued and productive and enjoyed.

Several of the children in wheelchairs visiting with farm animals at a camp. NARRATOR: In a series of photographs, we see a number of families who gather annually at a camp. Each of the families has at least one child who is multiply disabled or visually impaired.

Several of the children are in wheelchairs. At the camp, they take part in activities such as a hayride, visiting with farm animals, and participating in a talent show.

PERREAULT: I think many times I see meetings that go through where those things are unspoken.

All the right things are talked about — “We’re gonna have this practice job placement, we’re gonna have this time to learn how to do this,” but you won’t hear the word, “We’re gonna look to address loneliness in adulthood for this person with a disability.”

Many times, we’re putting vocational first or other things first and saying, “This is what our job is, so we’re gonna do that.” Sometimes it works, but I wonder if we’re losing some of the energy of the parents by not starting with the happiness piece, or whatever they’re valuing.

CHAPTER 6: Parent & Professional: An Evolving Relationship

PERREAULT: There are a number of best practices. If you could boil them down is, I think there needs to be a dialogue, a conversation between the parents and the professional that’s truly safe, that uses language that’s commonly understood by both, that is without judgment, without hierarchy, but is free, allows for free interchange.

And perhaps some ground rules about roles and who will do what, but a safety net to say, “Let’s reevaluate. “Let’s check in to make sure that what we understand, “what we’re doing together here is in the best interest “of what we both are seeing for the child that we’re working with.” And I think that, looking at that — how to create a lifetime of smiles — is something parents respond to.

At an early intervention program in Uruguay, a young girl who is visually impaired laughs as she plays with a large orange exercise ball.NARRATOR: In a photograph taken at an early intervention program in Uruguay, a young girl who is visually impaired laughs as she plays with a large orange exercise ball. A teacher sits behind her. A boy in India sits on his mother’s lap.

The boy, who is multiply disabled and wears glasses, is smiling broadly as he clutches several brightly colored plastic balls.

A boy in Guatemala is shown nuzzling with a baby puma at a wildlife park. The boy wears glasses and a hearing aid and he smiles contentedly as he holds the young cat in his arms.

PERREAULT: You do need to build all the other things around it, but you lead with that, you understand that. This parent is looking for a lifetime of smiles for their child. And I meet them there and then talk about all the things that might help getting them there.

But if I talk about all the things they have to do without talking about the smiles, it just makes them tired. And it makes them think I’m very smart, but not want to do what I want them to do.

And it’s an example of meeting somebody at a place of understanding and then finding a plan of how to move forward.

The Parent/Professional Relationship webcast with Stephen Perreault.

SHARE THIS ARTICLE
Donut with icing and sprinkles.
Activity

April Fool’s Day lessons

Photo of Kate explaining the tactile telescope model to a high school student.
Guide

Accessible astronomy: Tactile telescope

A smiling child holding a toy eagle
Activity

Bird song book and bird-related activities