Questionnaire for Interviews with Parents of Children with Disabilities

Name, date of birth, address of the children:
Interview with:
Date:

1. The current situation

1.1  Can you tell us a little bit about your child: what is his or her name, how old is he or she?
1.2  Which disability is present? Can you describe that a little? Can your child walk, for example? How does your child move? Does your child talk? What impression does your child make?
1.3  When was the disability first noticed?  Was it already during the pregnancy?
1.4  Is your child mainly still at home? Or where?
1.5  Does your child need “all-around care”? Who mainly provides that?
1.6  What therapies is your child currently getting?
1.7  What is your family situation? Do the child’s parents help each other? Do other people help?
1.8  Are other children present? How old are they?

2. The pregnancy

2.1   Was it a wanted pregnancy? Were you in joyful anticipation? Some mothers seek a kind of inner conversation with their baby. Or they have special dreams; intuitions. What was it like for you? Did you feel anything about your child’s specialness?
2.2  When you suspected something was “wrong”, did you immediately consent to further testing to get a definite diagnosis, or did you hesitate?
2.3  When it became clear that your child would be impaired, what did that mean to you? Were you in conversation with each other?
2.4  What was your doctor’s role – in communicating the diagnosis, in accompanying you? Did you feel that your concerns were being addressed?
2.5  What helped you the most during that first period? What helped you to engage with your special child? Other people, certain thoughts, biographical memories, religious beliefs or other?
2.6  Did you do any research on the internet? How did you feel doing that?
2.7  With some diagnoses, the issue of abortion comes into play. If that happened in your case: was that an option for you? How do you feel about abortion in the case of other disabilities, or even rape?

3. The birth

3.1  Did you know about the disability before your child was born?
3.2  Most of the time, there are great worries and fears associated with it, e.g., a cesarean section must be planned, as well as intensive postpartum care. What was it like for you?
3.3  When medical considerations are continuously involved before a child is born, the birth appears to be a purely biological phenomenon, yet that is just the external side of things. There is also the other side, the special emotions in the soul... Do a child’s soul and spirit somehow emerge from a physical nucleus, from molecules? This is a habitual thought, a kind of dogma. But on a concrete level it is inconceivable! What is your position on this?
3.4  Many parents express this sentiment after the birth of their child: it is a miracle ... How did you feel when you held your child for the first time? How did you, the father, feel?
3.5  What was the first reaction of relatives, friends?

4. The first years

4.1  Children with multiple or particularly severe disabilities demand an incredible amount from their parents in their early years. Out-of-town appointments with doctors, hospital visits, therapists. And at home, for example, there might still be sleep disorders, refusal of food, seizures, etc. Especially mothers sometimes describe their lives as seeming to be controlled by others. Have you also experienced such pressures? How can you help yourself? What gives you strength? What particularly stresses you out?
4.2  What role do/did the doctors play? And other therapists? Are you in a self-help group?
4.3  There are countries where disabled children are rejected so much that their fathers usually leave immediately. This situation also puts partnerships to the test in our country. Can you describe what that was and is like for you?
4.4  Do you have other children? Do you feel that they are missing out? How would you characterize these siblings?
4.5  Were there any major problems with authorities, health insurance companies, municipalities?
4.6  Regarding society: in this country, there are very many support services for children with disabilities. But have these children with their otherness really arrived in the midst of society? Can you perhaps give a positive example – as well as a negative one?

5. Kindergarten and school

5.1  (if applicable) What does kindergarten or school mean for your child?
5.2  Is your child in a state, church, private, or Waldorf institution? What do you particularly appreciate there, what do you miss?
5.3  Do you have experience with integration assistants?

6. In retrospect

Relating to you child
6.1  You can’t know in the beginning what you’re going to face with a disabled child. Many are afraid – of the unknown. But now, if your child is maybe a few years old: can you tell if he or she is content on the whole? Are there moments of happiness? What has particularly touched you?
6.2  Abortion advocates often argue that they want to spare a child suffering. How do you see this argument in retrospect?
6.3  People with disabilities greatly shift ordinary standards of evaluation: “normal” children, for example, learn to walk, speak, write, read, etc., almost effortlessly. But when people have disabilities everything must be won with a lot of effort. Maybe there will be many things that these children will not achieve, but they can still gain enormous inner strength. Have you had such experiences with your child?
6.4  Other qualities often develop instead. Can you describe something about that?

Relating to the parents
Three steps can be taken in a life with disabled children: 1) You accept the situation because there is no alternative. 2) Another step is to fully say YES to your child: this is right, this is how it should be. 3) There is a REASON hidden in it. Looking for that reason is another step.
6.5  Even when infections, medications, genetic constellations, lack of oxygen, etc., during pregnancy can explain a disability – but why here, for this child? For some parents, being religious, believing that they are securely connected to a divine world, is something that gives them strength. But much more concrete is the idea of reincarnation and karma. And with it the idea that a child chooses his or her parents. How has your relationship with your child developed? Are you familiar with such questions about the deeper meaning? What helps you – maybe there were experiences, conversations, thoughts that opened doors for you?

7. Your message

When you think about young, concerned parents who are dealing with such issues, like you once did of human development that differs from the usual: What do you find particularly important to share?