Why it is important to talk to your disabled child.
Children with special needs are all very different. We know this. But every single parent reading this surely shares similar long-term goals for their child; they want their child to succeed. This is true regardless of disability or not. Success is defined differently for every child based on his or her strengths and needs, desires and dislikes. Julie may wish to see her son grow up to be an autonomous, employed, and completely independent member of his community. Peter may hope for his daughter to be receiving all the support services she needs to be able to live in a home with other people with similar needs while also being treated with dignity and respect. In order to get there, parents have to fight hard and advocate for their child who can’t advocate for themselves.
Or can they?
Self-advocacy also looks different for every individual, and it also applies to every member of society regardless of ability or wellness status. Helping your child become as strong an advocate for themselves as they can is part of the path on the journey to success. Many parents don’t know where to begin to support these skills, and many carry legitimate concern for discussing disability with the child at all.
As an adult with a disability who is also a professional in disability advocacy, I can tell you that avoiding the subject won’t make the feelings your child may feel go away. Your child will experience some of what you fear, but they will be okay because you will have equipped them with a strong foundation of self-advocacy skills that will only build as they grow. The late self-help author Susan Jeffers, Ph.D. used the motto “feel the fear and do it anyway.” I try to use this in my everyday life, and I’ve been able to do much more than any doctor, therapist, or even my parents ever expected. Have I reached “success” as my parents envisioned for me? No. I think that over time, however, the definitionof success becomes taking ownership of your own journey. This, to me, is self-advocacy. And you, parents and caretakers, and siblings are the ones who help build that foundation. But where can you start?
One place to start is by talking with your child about their disability, and I will present several strategies of how to do just that. Beginning the first steps, you need to think about where your child is at emotionally and cognitively, and of course, adapt what I offer here to be a conversation they can engage with.
Reference the name and meaning of the disability or diagnosis.
It’s important that the child is familiar not only with the fact that they utilize x form of assistive technology such as a wheelchair but also the reason they do. Tell your child: “You have what is called [insert diagnosis].” Using the medical diagnosis doesn’t have to be in support of labeling your child, but rather in being familiar with the vocabulary they will hear doctors and other providers use will help them be more able to engage as a valued member of their care team. Also, give them a brief idea of what the diagnosis means. For example, explain that spina bifida means that their spinal cord didn’t develop properly. Depending on the child’s abilities, explain what some of the characteristics are and if there are various forms, explain them and point out which one they have. Again, this doesn’t mean your family home will all of a sudden sound like a hospital wing, but just that your child will understand when they hear these terms. They won’t be as easily left out of their own care.
Don’t let the disability define the child; it is one of many aspects that make them who they are.
Help your child think of as many different traits, skills, and characteristics they can about themselves. This disability should be one of the traits listed. The goal here is to show that although it’s easy to see how these special needs can impact every aspect of our lives, they are only a tiny little bit of who we are.
Discuss positive and negative encounters they may face due to their disability.
Many children with visible disabilities find it difficult to fit in with their peers socially. At times they will be teased, stared at, and asked questions that are no one’s business. Use some family time to think of possible encounters and how your child can respond effectively. You can even role play some of these scenarios. Think about non-social encounters that may be tough as well such as handling scary medical procedures and the like.
Foster positive thinking about the disability.
While disability is seen as a negative thing for so many people, remember that we talked about how it is part of who your child is. It is a lens through which they see the world. It is part of the reason they think and emote as they do. Without that disability, your child would perhaps have fewer struggles, but they would be a completely different person. I encourage young self-advocates to make an active choice to have disability pride and to block out shame. Of course, there are days where I curse arthrogryposis and throw myself a pity party, but most of the time, I see my disability as a positive part of who I am. You couldn’t pay me to change it, and it has given me opportunities I likely never would have had if I didn’t stand out from the crowd in my bright green powerchair. Help your child complete this phrase: “My disability makes {insert activity/skill] difficult, but it also makes me really good at {insert activity/skill]. Pride, not shame.
Promote social interaction early on.
Encourage new activities and experiences with their peers both with and without disabilities. They shouldn’t be isolated and self-segregated with only those with disabilities, but they also need to have a few friends who can relate more directly to their experience of disability, people who “get it”. Inclusion is key in most cases, be it social, community, or especially education. This will provide great opportunities for your child to talk with and educate others about their disability, encouraging self-advocacy. It also will help to end the social stigma associated with disability as we become a more inclusive society.
Include siblings in the conversations.
Siblings have so many feelings about disability that can be long-lasting, and they are often not dealt with. In all the hubbub, sometimes siblings are forgotten. Left unresolved, these feelings can become problematic throughout the life course.
Ask and answer questions openly and honestly within your family.
This is essential to building a strong support structure for all members of the family. Disability and chronic illness can feel quite isolating, but a strong family support system will lessen that feeling. The point is to remember that a family is a team that has each member’s best interests at heart. Be there for each other and do so in love.
Lauren Beller
Disability professional, educator, presenter, activist, and self-advocate
Philadelphia, Pennsylvania, USA
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