Over the years I have witnessed how many parents label their children with disabilities as either low or high functioning individuals only a couple months or years after they have been born. This practice is simply not right because there is no way to define the future of a human being and their potential. Labeling in this manner limits him or her without giving them first the opportunity to live and grow. On the other hand, we cannot and should not evade the responsibility of accepting that there is much work to be done. No matter how much we’d sometimes like to deny the fact that our child has a disability, our child has special needs that need to be accepted and addressed.
It’s true as well that the advice of inexperienced professionals leads families to believe there is a way to determine their child’s future at an early age. Based on assumptions and prejudice they set eternal limitations or create false expectations that take away from families the essential and most important vision that every parent should have: Children are the reflection of the miracle of full acceptance and consistency. You as a parent enable your child to make your child capable of every life experience.
Further, by creating differences based on lack of acceptance, we hear parents saying things like, “my child doesn’t look like a person with Down syndrome,” or “my child is not like the others with the same condition.” This language isn’t helpful to anyone.
Dear families, every child is unique, wonderful, and the most beautiful and capable in our eyes as their parents, but these tendencies to diminish others by trying to become the exception is neither positive nor inclusive. In the case of my two children, they look like people with Down syndrome because the physical characteristics are obvious. They have intellectual and developmental challenges because it is totally natural that people with Down syndrome will face these corresponding with their diagnosis. There is nothing wrong about living with a disability.
By denying the facts or trying to make an exception out of our child, we are not making any contribution to the normalization of disability. The influence of the extra-something (whether it be chromosome or something else) is a set reality. However, the influence of our love and faith in their lives is what allow them to maximize their abilities in a world full of opportunities that will push them to reach their full potential.
The first step is full acceptance, and no, it is not always an easy step.
It may take hours, days, months, or years for you as a parent to recognize the disability as part of your child and to love it as a part of him or her. The time it takes doesn’t make you a better or worse parent. It makes you human. You have the right to be yourself and live every stage as a natural step that will allow you to become the best parent possible for your child. Many parents hate to face this kind of conversation with themselves or with others, but if this subject still upsets you in some way, it is time to reflect on why. For the love of your child, face your fears, overcome your prejudice, and keep in mind that it is ok to feel confused and overwhelmed sometimes. This is not about lack of love for your child, all the opposite, this is about love and your human reaction to an unexpected situation that you were not ready for, and for which most of the time, no one can be ready.
Your child doesn’t need labels. The ones that the world assigns to him are many times unavoidable; however, the ones that you choose are the only ones that define him or her
I agree labels are limiting and no one needs them, but you may still face ignorance and obstacles due to the labels that people try to impose on your child. Remember that in reality, the only labels that really count are the ones that you choose. That said, if your heart is hurting or feeling insecure about what the others think or feel, that is going to reflect on the way you deal with the labels. If instead, your heart is strong, happy, and proud, you will see the best of your child, everything is going to be easier, and things will make more sense. You cannot change how others see your child but you absolutely can influence the way your child sees himself by ensuring your vision of him or her is label-free.
When full acceptance is in your heart, that is when the “how” stage should start
You have overcome denial, anguish, or melancholy, so now is the time to start the stage of “how”. How do I help my child develop to the maximum extent of his or her abilities? How do I help my child by providing all the support he or she needs without taking away from him or her the natural experience of being just a child? How do I include my child without violating his or her individuality and avoiding the typical mistake of believing that he or she needs to be “fixed”? A one-size-fits-all answer doesn’t exist, and if you have arrived at this moment and you are ready to make a difference, you will naturally understand that your child is unique and no one can do it for you. Even though you may face the feeling that no one knows or can give them what he or she needs, it is up to you to keep learning, to change the circumstances, to persevere and realize that most of the time, you are the only one who will see the ability behind the disability. It is your job to make others see the same.
Living with no rush but without pause
Finally, the biggest lesson that I have learned from my children and that I think can benefit anyone in their role as a parent is to learn to live with no rush but without pause:
- Learn to celebrate your child as an individual. He or she doesn’t need to look like anyone else to be perfect.
- Feel proud of yourself for doing everything you can to give the very best to your child, and don’t let social pressure numb your task of loving and accepting your child in his or her strengths and weaknesses.
- Don’t obsess or get caught in the hype of “miraculous” products or methods. The real miracle is the result of consistency, dedication, and individualization, and those sacred and unrepeatable moments in which your child feels connected, loved, respected, and celebrated by being him or herself.
- Surround yourself with positive people that support, love, and accept you. It doesn’t make sense to live in a constant competition in which we attack one another trying to conceal our personal insecurities. Protect your energy because love is all you need and deserve at all levels.
We can choose to complain about everything we are missing or we feel we need, but in your hands and in your heart, is the possibility and the intention to fulfill the miracle of love through the full acceptance of your child in collaboration with consistency and complete dedication. In the end, no matter how atypical things look, they are in fact very typical if we realize that we are supposed to be doing what every other good parent is trying to achieve day to day: To raise their children with love and faith, despite the challenges and the unexpected circumstances that touch us all at some point in our lives.