I am the mother of David Felipe, a boy with Down Syndrome who is 19 years old today. Being a caregiver is not an easy task, and being a caregiver mother without a support network is even less so
David turned my life around and allowed me to rediscover what gives meaning to my existence: providing tools to learn to live. Today I do life mentoring and transformational holistic therapies. My story and journey as a mother and caregiver of a person with Down Syndrome, allow me to share some acquired knowledge and experiences, which I hope will be of benefit to other mothers to raise awareness about the importance of taking care of oneself to provide help and support to the beings that are under our care and that make it possible to sensitize the general population about caregivers and Down Syndrome.
Ignorance is bold
To begin with, one of the things parents of people with Down Syndrome face is the ignorance that still prevails within society. Many people think that Down Syndrome is a disease because it is a genetic condition with physical and mental characteristics that slow down the development and growth processes. Like all human beings, they have abilities and potential that can be enhanced by those in their care, if they are given the necessary opportunities to do so.
I believe that the limitation of people with Down Syndrome is more in the mind of the person who cares for them than of themselves. It all depends on the opportunities that are given to them and the early stimulation that is provided. Well, the earlier the process of physical and mental empowerment begins, the sooner the results will be seen and their development in society will be better.
1. Enable and not re-enable
Because it is a basic condition, and not acquired after birth, one should not talk about rehabilitation in people with Down Syndrome, but about empowerment, because when we talk about rehabilitation we are talking about the possibility of the person recovering their condition and /or basic physical and/or mental state of health. In the case of Down Syndrome, the condition is basic, so what is sought with the processes of therapeutic support and stimulation is to help the person develop skills that allow them to have an active functional life within the community. society, since there are some physical and mental characteristics that need to be adequately stimulated so that they can develop and provide the person with adaptation and inclusion capacities, through autonomy, independence, development of will, and discipline.
2. Generate autonomy: if you think it can, it can
I return and affirm that the limitation of people with Down syndrome is more in the mind of the caregiver or caregivers (teachers, therapists, institutions, etc.) than in themselves. From my experience and although there are different educational methods, I consider that the best method is the Montessori method, initially developed for people with Down Syndrome by the medical doctor María Montessori. This method generates the autonomy required in children if teamwork is carried out between teachers, therapists, family, and/or caregivers.
If you think it can, it can. If, as a mother and/or caregiver of your child with Down Syndrome, you believe that your child can do something and you provide them with the necessary tools and opportunities to develop skills, they will most certainly succeed. Of course, at their own pace and according to their individual characteristics, which, in each one, as in each human being, are particular. Well, like all human beings, they also have particular abilities, which, if stimulated, can be developed.
Self-care strategies as caregivers
It is important to clarify that as parents and/or caregivers, the first and most important thing is to accept the condition of our children, understanding that they have their own pace of learning and a very particular way of living life, in the here and now, without eagerness, or worries, with the spontaneity and honesty that characterizes a child and that remains alive in them with time.
Below, I share some self-care strategies as a caregiver, which from my experience as a mother/caregiver and as a transformational holistic therapist, have helped me and which I try to apply daily:
1. Zero expectations to lower stress.
Learning to live in the here and now with our children, enjoying the process and the journey, allows us to reduce the levels of stress and anxiety generated by the uncertainty of the future. Doing what is appropriate on a day-to-day basis, accompanying, facilitating processes, and taking care of ourselves allows us to move forward with a better quality of life for ourselves to provide our children with the best.
2. Adapt our life project. so as not to lose ourselves in the care of our children.
Learning that our life and individual life project are important and deserve their time and dedication to continue developing, gives us the incentive to continue and provides our children with an example of freedom and autonomy. In the same way, it takes us out of the routine and tedium, which we can fall into when we are in the permanent care of our children.
3. Organize our time to carry out self-care activities.
To love and care for ourselves is to care for and love our children because if we are well, our children will be too. I know it’s not easy sometimes to make time for ourselves, but it’s not impossible. If goods Indeed, our life changes completely when a child with Down Syndrome is born, because they require all our attention, especially in the early years. It is also true that it is very important to take care of ourselves so as not to exhaust ourselves. Consequently, we must organize our time to exercise, read, meditate, or do some activity that takes us out of caring for others, take care of ourselves, and replenish energy.
4. Replenish energy and eat well.
I know and am aware that many of our children have a sleep disorder due to their health condition, which affects our sleep and rest. That is why it is important to take advantage of any moment to replenish energy. On the other hand, eating healthy, and suppressing the intake of sugar, flour, and fat allows us to maintain a more favorable state of health.
5. Teach autonomy and independence to our children
Teaching autonomy and independence to our children provides us with more free time and less stress because seeing them autonomous makes us feel calmer and safer.
Being a mother is a daily challenge and being the mother of a person with Down Syndrome is a special challenge that requires double effort, so we must redouble our self-care. I thank heaven for the blessing that this mastery of life has implied and I honor and bless all the mothers in the world who have accepted the challenge and invite them to learn self-care.