When Everything Changes

Dear Parents!

Every child that announces itself with a pregnancy brings something new, unique and unprecedented into the world. Many young parents suspect that children do not come from another, mysterious world to certain parents by chance. Once the birth is overcome, the child is often perceived as a miracle. Not merely because the baby is physically there, but because a personality, an individual ‘I’ is enriching the world. Whether the baby is healthy or has a disability. In this special mood of the first days, parents may have more or less conscious questions that are usually asked only in extraordinary situations: who are you? What do we have to do with each other? Where have you come from? Where are you going?

Image by DenisKuvaev/Shutterstock.com 

Prenatal care (with ultrasound), prenatal birth preparation and later prenatal pediatric examinations easily distract from this. But not necessarily. After all, concern for healthy physical, mental and spiritual development is related to these issues. When parents learn that their child has a disability, whether during pregnancy, after birth or even later, many things change. Major crises often come, differently for every parent, but often at certain stages. Maybe only partially, in a different order and with a different intensity. These crises mean a lot! They signify development that other parents do not experience in the same way.

Fear

When “something is wrong”, especially during pregnancy, then joyful anticipation can be mixed with anxiety. This can range from uncertainty to paralyzing fear. But still there is hope, because maybe everything will be different. The gynecologist plays a role in this fear: his look, his words, his certainty may convey fear or help it dissipate. He can at least give confidence! 

Special help in this phase of great uncertainty is usually provided by midwives. Often they are the best counselors of the mothers concerned. Rarely are there mothers who, after the initial shock, do not let fear rise up inside. Such mothers “believe” in their child, as the child is. (Some mothers are so connected to their child on the first day after birth that they overlook a cleft lip and jaw, for example, until it is brought to their attention.)

Grief

At some point, the diagnosis becomes certain. All hope that things will turn out differently is gone. This can happen during pregnancy (such as in cases of genetic changes), or can gradually emerge after a birth defect, or even much later. There may be sadness, resignation and loneliness in the face of the unalterable. Even conversation between the parents sometimes threatens to freeze. Sometimes parents hide themselves (and their child).

When genetic disorders are diagnosed during pregnancy this often leads to parents attending a genetic counseling center. Most commonly this happens with Down’s disease (trisomy 21). There, they are presented with their child’s possible developmental prospects and complications in terms of statistical probabilities. This leaves many parents perplexed. Wouldn’t it be very helpful if they could also hear parents of children with Down’s disease tell about their experiences? The current high abortion rate of about 90% would presumably drop significantly.

It is precisely conversation that is important now. Also with the pediatrician: his experience, his understanding, his patience can give courage.

Resistance

Either before or after a child with a disability is born, but before a real sense of intimacy has developed, the “ego” of the parents may come knocking – with defensiveness, rebellion and anger. “Why me? Why us? Whose fault is it?” One may accuse oneself or others: the doctor who prescribed a dangerous drug, the obstetrician who made mistakes... Or one might argue with God. Some mothers wish their child were dead. It should be understood that such feelings may arise. At this stage, the parents do not yet properly see their child in his or her own right. Disappointments are often in the foreground: the threat of losing hoped-for personal and family happiness – or one’s professional career, vacation plans, friendship visits, hopes of how one’s child would later appear on a soccer team, play music or do something else. It takes time to open up to the child as a unique individuality. Yet especially the first weeks are often filled with examinations, checks, initial therapies. Antje Thiessen, a Berlin midwife who specializes in accompanying affected parents, recommends that only the most urgent appointments should be scheduled during the first eight weeks. Because an undisturbed deep mother-child bond is more important. Such a bond makes it easier to adapt to the changed life situation.

Adjustment

Life goes on! The child needs attention! Often there are major problems with breastfeeding or other nutrition, sleep disturbances, frequent crying episodes, perhaps seizures, medical check-ups, hospitalization, physiotherapy, etc. The first one or two years often place a very heavy burden on everyone – on the one hand. On the other hand: how deeply the mother and child, the father and child may get to know each other, as well as the parents each other and themselves! There are quiet moments when the baby smiles for the first time, perhaps only at six months. Or reaches for something. Or babbles his or her first syllables. What joy the smallest progress can mean! Often, parents feel that their child is on some sort of arduous trek, but always reaching new goals along the way.

The pediatrician can also help a great deal to improve the parents’ perception of their child: by refraining from using intrusive “necessary” medications – e.g. fever reduction, antibiotics, etc. – whenever possible, by strengthening the child’s own forces through homeopathic and anthroposophic medicines, and by showing the parents how they can help – e.g. with compresses, nutrition, etc.

Acceptance

At some point, life becomes more serene. The child has entirely arrived. The feeling in the family is: “You fully belong to us – just as you are!” Even though fears, grief, anger, etc., can continue to accompany them: loving acceptance has come to the fore. Now parents dare to go out in public with their child differently, without inhibitions! Not everyone succeeds in reaching this stage of accepting their child unquestioningly, that is, loving their child unconditionally. But for many, this is a significant developmental step. It is a “peace treaty with destiny.” 

Quite a few parents say: “We believe that our child chose us as parents. Because we are a good match. Because other parents wouldn’t be able to manage it!” This thought actually presupposes a spiritual existence before birth. Thus, parents were asked if they had also thought about reincarnation and destiny while living with their child. Wouldn’t one then look differently for meaning in “blows of fate”, wouldn’t one see an individuality spanning many lives as the core identity of the child, an individuality who has tasks for the future?

Commitment

It takes acceptance to get a clearer view: of the child and of other things. The child with a disability wants to participate in life with everyone, to be part of it, to belong. This is the basic idea of inclusion, which numerous countries set as a goal in the Convention on the Rights of Persons with Disabilities in 2006. Inclusion means equality of all people in terms of their participation in life. In the past, the only goal was integration: that children with disabilities should come as close as possible to what “normal” children experience in school or otherwise. Inclusion is more: full recognition and participation in life as a human being despite having multiple motor, speech and cognitive limitations – which is an ideal! At this point many parents become active in support groups or volunteer to participate in relevant groups. For example, there is even an Association for Fathers of Disabled Children because a father had noticed that he was not taken seriously as a man. For example, he was told: “I am writing this down for your wife..., Your wife can call me with any questions...,” etc.

Confidence

Sometimes the next level is reached after a relatively short time, but usually much later. Or not at all. The confidence and serenity that things are all right as they are. Some manage to say after years have passed: “It’s best the way it is!”  And not merely: “We made the best of it.” They then no longer have any fear of the future. Then it also becomes possible to confidently place their child in an appropriate facility, especially when the child gets older. (Which is difficult for some mothers because they are very “attached” to their child.) Now, especially for the mother, life resumes, that is, she can take up forgotten or new life impulses completely independently from her child! When parents have achieved this confidence, they have undergone a great step in development. It would not have happened without their disabled child. The following interviews bear witness to this. Click here for the questionnaire. 

Parent interview questions 

The interviews with parents of disabled children should express how they experience and experienced their life situation. We would like to offer support, mothers and fathers, who may find themselves in a similar situation. 

• Questions about the child’s current situation in the family. The diagnosis.
• The course of the pregnancy: was the disability already known? How was it handled?
• The circumstances of the birth. The parents’ initial relationship with their child. The role of the fahter. 
• The first years: the times spent in hospital, with doctors and therapists. Life at home. Did the relationship between the parents change? Other children in the family. Problems with officials, insurance companies. Acceptance in society.
• Experiences in kindergarten and at school? 
• Looking back: on their child’s happiness. On the parents’ happiness with their child. Did the parents experience themselves as learners? In search of deeper meaning.