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I think that one of the biggest challenges we face as parents is to believe in ourselves confronted with the expertise of professionals. It’s hard to know when it is time to intervene and enact our right to disagree with others based on the individuality of our children. The situation doesn’t only apply to parents of children with disabilities but to every parent in general; however, it is even more important when we realize that in the case of our children with special needs, developmental delays, and disabilities, decisions are sometimes harder to make and advocate for, especially when you are fighting against unconscious biases.
As parents, we don’t have the professional preparation to diagnose our child. Many times, we have neither the academic tools to educate him nor the ability to stay home and do it on our own. However, as parents, we are and we will always be the experts in the lives of our children. The direct connection with our children is often enough to know what to do, what is right and what is wrong for them. We know better than anyone their likes and dislikes, the reasons for their behavior, their motivations, and their challenges. And understanding and owning this is not in an effort to compete with the professionals or try to put them in a bad place, it is only the natural role that every parent plays which should be received as a gift to better understand the child and ensure he or she is receiving what he or she needs.
Many professionals may become offended or upset when parents disagree with them. But instead of reacting negatively,
- It’s important for them to value the parents’ opinion to work in collaboration as a team.
- It’s important that professionals understand the value of helping parents understand all the information about their child, the diagnosis, and the plan in place in order to participate in every decision that is made for their children
- It’s crucial that professionals go a step further to learn basic but important information, such as using people first language, empathy, and the value of the individual.
Only in this way can they treat the person as a person first regardless of the diagnosis. Only in this way can they understand that we are not providing services to a syndrome, but working together on maximizing the opportunities of a unique human being.
I’d like to share a personal example of how this works. Only a couple of months ago, I was surprised by a doctor’s reaction to my son’s sinus infection. Without even looking at him, he told me “this is the way kids like him are supposed to be.” I was speechless for a moment but before leaving I clarified it for him. “Every child has the right to be treated as an individual, and no, there are no children ‘like him.’ They are all individual children and they all deserve to have the best possible life in all areas of development.” Enacting my right to disagree, I looked for a second opinion. The next doctor told me his symptoms were normal considering his condition but what he was experiencing was treatable. Like that, Emir went back to his individual normal with a new treatment.
Therefore, I want to tell parents that in cases like this one, and many other like this, when it comes to your child:
- You have the right to disagree.
- You have the responsibility and the right to look for better services.
- You have the right to have high expectations for the care provided to you and your children.
- You have the responsibility and the right to defend your child from conscious and unconscious biases that affect his inclusion, his well-being, and his future.
- You have the right to listen to your sixth, seventh, and eight sense, and use the information from your intuition to protect your child.
And you must do so regardless of the pain, the frustration, and the fatigue. Because in reality, this is something no one else can do for you, or at least, better than you. You are the only professional fit for this job simply because no one loves your child like you do.
