To families who have sons or daughters with disabilities: Reflections even after isolation

By: Yolanda Rodríguez León, Ph. D., MTS – Manager of SER Community Programs of Puerto Rico

We have been told a lot in these days of isolation about what to do to cope, in the best possible way, these days. I also left something written there; but today it calls me to reflect with and for families who have sons or daughters with some disability on issues that have nothing to do with isolation, nor with the coronavirus, nor with earthquakes or storms. I am excited that we can reflect on issues that have to do with life, with the reality of being mothers, fathers, in charge of those who came into their lives to fill them with challenges, joys, achievements, sorrows, teachings and learning. Here, someone could already be thinking… “Well, that… what all children bring”. But those who have sons or daughters with a disability know that it is not… that it is not the same. And it is not the same because in our society, as first world as some believe it to be, different continues to associate with inferiority and that has a great impact on families. The social constructions that, in general, are maintained about what a person with a disability is, seem to place them in a different category from that of the rest of the people: they are looked at, they are treated, different expectations are created or not compared to those who we do not have disabilities. Even the literature identifies four (4) stages in the history of humanity that exemplify the feeling and acting towards people with disabilities. These are: the stage of extermination, the stage of ridicule, the stage of charitable assistance and the stage of educational intervention and professional care.

            These ideas are, to a greater or lesser degree, within each one of us; so when a son or daughter is born with a disability, the family already has a great burden based on existing social constructions, prejudices and general social expectations. This does not make them good or bad. They are responding, as we all respond, to what they learned throughout their training. So, that birth that should be a space of joy can become one of sadness and anguish. The same happens if the diagnosis is established during pregnancy. breaks up with him imaginary that was held of that unborn son or daughter. Each member of the family then begins to deal with a large number of emotions and feelings; On many occasions, difficult decisions are required, ranging from authorizing treatments and operations, to determining whether or not you can return to work. This, without a doubt, affects the economy and family dynamics. Especially in the first months, the anxieties seem to outweigh the gratifications, it is necessary to identify services that are unknown or scarce, interact with professionals from various disciplines and begin to understand life differently from how they knew it. On many occasions, parents and other relatives feel bad for feeling bad emotionally And although having feelings of fear, sadness, shame or guilt is very normal and even expected in these situations, this can become an additional stressor. 

            In the book titled “Nobody's Perfect: Living and Growing with Children who have Special Needs” [1], a group of mothers giving meaning to their experiences, feelings and learning identified the following as the Adaptation Stages that families with children with disabilities go through. The main characteristics of these stages are described below. I recommend looking at the feelings and emotions that are worked on at each stage. This will allow for a basic assessment of where they are and what they need to work on to achieve the necessary adaptation:

1. Survival Stage
   1. They feel like everything is out of control because of all the appointments they have to keep, all the information they need to understand, and the emotional impact it all has.
   1. It is a cover that can last for months or years depending on the person, their skills to face challenges and how soon or late they understand that they should seek support, professional and/or spiritual help.
   1. The most common feelings are fear, guilt, confusion, anger and shame. Natural feelings when adjusting to the unknown.
   1. Parents understanding the importance of taking care of themselves is very important. It is recommended that a family member and/or professional be attentive to this dimension of the situation.
   1. Mothers/families understand that they are overcoming this stage when they see achievements, they feel optimism and hope again.

Important: What are you doing to be able to see the achievements, big or small, that are happening in your son or daughter, in the family, in the relationship with professionals? Human beings tend to be negative, so a constant and conscious effort has to be made to identify achievements that move us to optimism and hope.

• Search Stage
  • Mothers identify 2 types of searches. The external(seeking diagnostics, therapeutic services and medical services; looking for someone to tell them that "everything will be fine") and the internal (It is the one that makes them wonder what happened? Why me? What does this mean for my life?).  They are searches to understand.
  • Feelings from the previous stage prevail, but control and empowerment are gained.
  • It is important for parents to begin to identify or recognize themselves as parents of children with disabilities.

Important: How do you continue in the constant effort to identify achievements? Recognizing the stage in which they are, how are they assuming the information offered by professionals? Do they use the information to gain empowerment? How do you feel when you recognize yourself as parents of a son or daughter with a disability? This is probably a good time, if you haven't already, to seek out and/or strengthen family, professional, and spiritual support networks. Don't assume that family members and professionals know what you need, talk about how they feel and what they need.

• Balance Stage
  • Reaching this stage is a great achievement.
  • The external search will consume less time, since the child is already more stable in medical services and at school.
  • Parents feel that they already have more control over their lives.
  • This stage implies, above all, a change in attitudes.
  • It is realizing that you are handling a lifelong process, so priorities must be reevaluated.
  • Parents identify new skills and strengths, they have more information, greater confidence, processes are better known and support networks are recognized.

Important: Arriving here implies that you have worked with your son or daughter, but also that you have worked with yourselves... with your feelings and expectations; that an adequate relationship has been achieved with the professionals who care for your son or daughter; They have learned to see their son or daughter's strengths as well as their weaknesses. It is reaching the recognition of what you have and will have for the rest of your life, seeing it in a positive and natural way.

• Separation Stage
  • This is a normal process in the life cycle of a family, but in these cases it is a slower process.
  • Parents are expected to prepare for this process.
  • The family may feel like they are going back to the outside search stage, but this time to seek independent living services.

Important: The process of separation or independence begins in infancy... if you do not allow your son or daughter to make decisions, do chores at home, develop independent living skills from the time they begin to demonstrate the possibility of doing so... do not expect that in their adulthood, which is the old age of the parents, begin to do things spontaneously. Knowing your son or daughter well and having good communication with professionals will make this task easier for you.

Needless to say, these are not recipes, because each family is different and the situations they face too... but the experience of other families can help you.

            I end by presenting a list of strategies proposed by the mothers who worked on the book Nobody's Perfect and others that the families I have worked with at SER have taught me. I hope you find it useful.

Strategies for a Successful Adaptation:

• Seek assistance from other parents. It's okay to ask to learn from those who have already walked a path similar to ours, but identify that source of support well. Look for someone with a good attitude, who looks happy, active, empowered.
• Talk to your partner, children and other family members (support networks). It is not always easy to talk about what worries us, hurts us or makes us feel guilty...especially if it is about a son or daughter, but it is necessary to do so. You may be surprised at how positive this experience turns out to be.
• Trust in positive sources of life (spirituality). We are bio-psycho-social-spiritual beings. Begin to know or return to aspects of spirituality. For many people, this dimension becomes fundamental to face challenges positively.
• live one day at a time. Nothing more real than the fact that each day brings its own eagerness. Remember that.
• Find information and services. There are many ways to educate yourself and get facts about services, but also know when to stop. It is essential to take pauses in the searches and concentrate on what you have, on what you have achieved, on how your son or daughter is doing with what you are receiving. That way you can direct your searches with greater certainty. 
• Don't be intimidated by professionals or information you don't understand.  All professionals talk about what they learned one day and now it is your turn to learn. Always ask that they speak to you honestly and deeply (you want to know all the details), but clearly. Carry a notebook with you to make notes, ask about concepts and processes that you do not understand, pay attention to what is being explained to you. No one should know your son or daughter better than you.  
• Don't be afraid to show your emotions, feelings and concerns. Being honest with yourself and how you feel is essential in this process. You don't have to always look cool and in control, no one is judging you. Your responsibility is to work with yourself to deal effectively and appropriately with the feelings that arise.
• Keep positive aspects (model strengths).  As I mentioned earlier, it is important to identify the positive aspects of life in general. We will strive to achieve it.
• Stay in touch with reality. This is not always easy, but it is necessary. To achieve this, it is important to maintain communication with professionals who offer truthful information. Analyze what you are facing in a calm way or with the help of others who can support you in that process.
• Take care of yourself physically and mentally, seek help when you need it.  Think about your needs, too, and even if you can't meet all of them, identify what you can do to keep yourself well. It can be reading, exercising with a video at home, chatting with a friend. There are ways that do not take much time and help.
• Decide how you will treat others.  When you have a son or daughter with a disability, people can approach you with good intentions, but do or say things that bother you. What to do?... you decide. One day you may feel like giving guidance and another day simply ignoring the situation. What should not happen is that you become emotionally affected by what someone said who probably did not know what he was saying.
• Remember that this is your son or daughter. Especially in moments of greatest sadness or frustration, remember that this boy or girl is yours... that it may not meet your expectations as a mother or father, but that is your baby... take a deep breath, move on.
• Remember that you are not alone.  Difficult situations sometimes lead us to isolation. We don't want them to see us as vulnerable or to think that we don't love our son or daughter, so we keep quiet...we hide ourselves behind masks of courage or total well-being...Knowing that we are accompanied by others makes a big difference. Other families, professionals, friends, support groups will become great allies. Do not miss the opportunity.

[1] Miller, Nancy B. (1997). Nobody's Perfect: Living & Growing with Children who have Special Need. Brooker Publishing

Photo by: Anna Kolosyuk on unsplash