Both of my children have Usher syndrome type 1; they were born deaf, are progressively losing their vision and have severe balance issues. Now that my oldest, Ethan (20 years old), is in college and my youngest, Gavin (17), is about to graduate from high school, I am beginning to reflect on the efforts of so many that got us here. I wonder if the professionals that worked with my children really know the impact they had on our lives.
I have shared our journey with “Advocating as a Family in the Community” in the December 2019 edition of EP magazine: https://reader.mediawiremobile.com/epmagazine/issues/205614/viewer?page=25 I also wrote about the efforts to include “Mentors, Role, Models, and Peers” in my children’s lives in the 2021 EP Guide: https://reader.mediawiremobile.com/epmagazine/issues/206890/viewer?page=26.
None of that would have been possible without the professionals, across three different countries, that have supported us at different times, from initial diagnosis to now, 20 years later.
I am blessed to have found professionals that we consider a part of our family even though most are not working professionally with our family anymore. Many live in different countries, states, and/or provinces. However, because of the relationships we developed, we maintain contact with most through Christmas cards, social media, and even visits when possible. I know that I can pick up the phone or send an email at any time asking for advice or a recommendation.
This relationship does not happen automatically so it is important to take the time to find the “right” professionals, to find the services that meet the unique and individual needs of your family. We want professionals who are mindful of family priorities and at the same time ensuring that a family is receiving appropriate services. We understand the need for therapies, treatments, and other types of appointments, but as parents, we want our children to still have the opportunity to be children and to not have these times feel like extra work they want to avoid. And at the same time, as a family member, we are aware that our expectations and approaches influence the relationships our children have with the professionals in their lives. Our approach and openness will affect their attitude towards these times and the success of the particular treatment or therapy.
The parent professional partnership is a relationship that is nurtured through the mutual appreciation for what each brings to the table. Families need to be actively involved in the decision-making process with the support of the professionals’ knowledge and experience. Consider the following tips when building a team of professionals and to sustain a positive relationship with everyone on the team:
Determine desired outcomes: Determine desired outcomes for your child and choose the intervention approach and professionals who will help your family achieve them. Find the professionals who will include the family in activities and be aware of the changing needs of families. We looked for collaborative relationships and a family- centered approach because we felt we needed professionals who asked for our input and listened to our needs as a family.
Clearly state goals and expectations: Clearly state the family’s goals and expectations to every professional involved so everyone is on the same page. Having a handout with the information can ensure that the professional has the information in the file for reference. You can go into the appointment with clearly set goals, but at the same time, be open to new ideas so you are not locked in on an approach that may not be working.
Turn an appointment into a visit: When visiting a clinic, walk its halls, saying hi to everyone on each visit, not just the professional being seen that day. Take the time to develop these relationships and familiarity with the area so it feels less like a medical visit and more like a visit to a familiar place with familiar faces. Bringing treats can express your appreciation to the staff, while allowing your child to be acknowledged for something other than the reason for the appointment.
Make an adventure out of it: Often, appointments can take the better part of a day depending on travel time. Appointments can be turned into an adventure by planning to do something fun that day either before or after. Visit a tourist attraction, go to a museum or the zoo, or maybe a visit to a relative who lives in the area. If it is an appointment that is close by, get a special treat afterwards or have a small surprise to give to your child once everyone is in the car. This can take the focus off the appointment and also provide a conversation starter once you have arrived.
Show respect: As with everything, it is important to give respect if you want respect back. It is ok to disagree politely, but it is also important to listen and have an open mind. Being overly demanding never helps a situation and certainly doesn’t help foster relationships. Being personable and asking about family sets the example for your child in developing a relationship and encourages your child’s establishment of positive interpersonal relationship skills.
Provide information to professionals: Let the professionals know the extra-curricular activities your child is involved in, enabling them to develop an intervention plan that can be incorporated into those sports/activities. Professionals may also use these extra-curricular themes in their own therapy plans. Better yet, this is an opportunity to have your child provide information. A truly effective relationship is developed through mutual trust, honesty, and open communication.
Include school professionals: Always include and involve school professionals by sharing reports and the goals and expectations set by outside professionals. If they are aware of everything happening outside of school, it assists them in putting together an effective plan with a better opportunity for success at school. Also provide the school with the names and contact information of the professionals who are working with your child so they can be invited to be a part of special education team meetings. We feel very fortunate to have had a school district that worked with us, with the input of all of the professionals involved, to have a plan that truly addressed my children’s needs.
Share events, successes and accomplishments: Help the professionals get to know your child by sharing important events, successes, and accomplishments. Bring items that display that recognition as a conversation starter for your child to explain what it is and why he/she received it. Bringing a picture, a favorite toy, or other meaningful items can also help your child begin a conversation with the professional. This was especially meaningful to my children; since we did not live close to any of our family it gave them acknowledgement outside of their parents.
Make the appointment child centered: Help your child develop self-advocacy skills by having professionals direct questions to him/her from an early age. Make the child the focal point of appointments – after all, he/she knows themselves best. Also, involve your child in meetings regarding his/her identification and planning from the beginning. This can help your child gain confidence in expressing what is helpful to him/her and develop a greater understanding of his/her strengths and needs. My son Gavin often says that he wants people to ask him what he needs and not do what they think he needs.
Become Involved: Become involved in professional training, advocacy, and fundraising organizations focused on your child’s needs. This will further develop your child’s and family’s self-advocacy skills. Participate in a study and/or attend family events at the clinic so that the association with the building is not only about therapy or medical appointments. Families have different comfort levels, so the involvement can take many different forms. For some it could simply mean making a donation or supporting activities, some may want to become involved to help other families, or some may be comfortable in sharing their story publicly. Our family started a golf tournament in Canada to raise money for organizations that were important to us. Now, in New Jersey, we all have significant roles in Ava’s Voice and the Usher Syndrome Coalition, organizations that support families with a child with Usher syndrome. My sons have also been featured in a video journalism series, called Sense Stories, that shares stories of individuals living with Usher syndrome by the Usher Syndrome Society.
Say Thank You to professionals: The professional members of my family were all invested in the process of helping me and my husband raise and nurture our boys into the brave, strong, confident young men they have become and who have overcome the challenges they faced, with dignity and determination. They helped my husband and me build the foundation to support our children’s learning and development. They empowered us to make the choices that were right for our family, make the decisions to support the well-being of our children, and even take risks, like moving to a different country, with the knowledge that we would be OK.
The words ‘thank you’ just do not seem like they are enough, but hopefully, over the years, I have expressed the appreciation I feel for the role they played in our lives. I am most grateful for the family-centered approach we experienced at the Cochlear Implant Clinic at the Hospital for Sick Children in Toronto, as well as their openness to developing relationships with the families they served. I was able to express my gratitude to them through nominating the team for two awards based on the provision of Family-Centered Care; one was though the hospital-based Humanitarian awards and one was a national organization award. I was thrilled when they won both awards and received the recognition I felt they deserved.
Finding the ‘right fit’ professionals: I feel like I won the lottery when I think of all of the professionals who have worked with my family. But, it wasn’t luck. We researched, we moved, we asked, we visited, and we made decisions based on who we thought would be a good fit for our family. It took time and effort and we were fortunate that we could make the decisions needed to find the professionals who strengthened and supported our family.
My hope for families is that this process gets easier and that every family doesn’t have to start from scratch. Families need a place to find the professionals who are familiar with the diagnosis of their child and not have to make several visits until they find the right one. The SPAN Parent Advocacy Network is an organization committed to engaging parents and professionals as partners in improving outcomes for infants, toddlers, children, and youth in NJ. There is also an organization in Canada called Everyday Heroes Kids that was founded on the belief that connecting families with appropriate pediatric care should not be difficult. They are creating the world’s largest resource for pediatric professional services that is accessible to caregivers seeking specific professional types across different fields. They want to centralize the information so families spend less time on the search and more time on the needs of the child.
Better Outcomes: Professional Relationships
SPAN Parent Advocacy Network
Everyday Heroes Kids
PARENT CENTER HUB Find your Parent Center
Family-to-Family Health Information Center
Usher Syndrome Coalition
Usher Syndrome Society Sense Stories
All families want to find the support and resources needed to help their children. We know that finding the right professional at the right time can be life changing, as the earlier the intervention, the better the outcome. As I have observed over the past 20 years with my children, working with the appropriate professionals and actively learning techniques to face obstacles with confidence will last a lifetime.
ABOUT THE AUTHOR:
Pamela Aasen is the parent of two children with multiple disabilities, and serves as the Director of the EHDI (Early Hearing Detection & Intervention) Mentoring and Family Engagement Project at SPAN Parent Advocacy Network. For more information, see https://spanadvocacy.org/programs/ehdi
Read the article here.