Guide for parents after diagnosis

This article discusses the various possible therapies and instances that you may encounter. The situation in the Netherlands is discussed here so that the situation in other countries may be different.

In the field of therapies, the following are discussed:

1. Physiotherapy.
2. Occupational therapy.
3. Speech therapy.
4. Pre-verbal speech therapy.
5. Complementary therapies.

Physiotherapy (for children) is primarily focused on motor development. Your child is supported in learning motor skills. The emphasis is mainly on gross motor skills. Furthermore, the exercises are aimed at reducing underlying disorders by improving muscle tension, for example, keeping the muscles at the right height and improving strength, coordination and condition. In addition, the physiotherapist can help you request the necessary aids, such as a walking aid, special chair or wheelchair.

Playing is very important for your child. However, this will always be just a little, or even completely different, than for children without a disability / illness. The occupational therapist helps your child with this. They specialize in improving independent behaviour at school, at home and in leisure time. Occupational therapy exercises are focused on daily (fine motor) activities such as dressing and playing, but also writing at school for example. Just like the physical therapist, the occupational therapist can help you request the necessary aids. This usually happens in consultation with the other therapists.

The speech and language therapist offers help with swallowing, eating and / or drinking, or excessive saliva loss. The speech and language therapist also helps with practising good and clear-talking and expanding vocabulary. If talking is (too) difficult, the therapist teaches your child to communicate through gestures or symbols and / or the speech computer, together with you.

If a child has problems drinking from the breast or bottle, eating from a spoon, drinking from a cup or learning to chew, pre-verbal speech therapy can be given. This is always done through a referral from a doctor (for example, a general practitioner or a paediatrician). The latter is important because it must first be checked whether there are any underlying medical problems causing difficulties in the mouth area. Starting communicative development is also important in early development.

From dolphin therapy to therapeutic horse riding to … There are a lot of (international) therapies that can benefit a child. Sometimes they are reimbursed by your health insurance company, but often they are not. Usually, these types of therapies consist of short (very) intensive treatments or training sessions. In general, the effect of these training is short-lived and in many cases, the adventure is costly – especially the treatments that are only given abroad.

Of course, you want the best for your child, and you have to try out what feels right for you. Just remember that traveling with your child abroad means that your child is taken out of the social structure, misses school and cannot play. We, therefore, recommend that you consider any therapy outside the regular circuit in close consultation with your doctor.

In addition to the various doctors and therapists, you may be confronted with (some of them are specific for the Netherlands):

1. Consultation agencies.
2. Integrated early aid.
3. Hospitals.
4. Rehabilitation centers.
5. Further professional help.
6. Your doctor (general practitioner).
7. Social worker.
8. Family therapist.
9. Psychologist.
10. Remedial educationalist.
11. Foundation MEE.
12. Center for Youth and Family.
13. Respite care.
14. Family support.

The consultation office is a practice, with a doctor and one or more district nurses. They ensure that infants and toddlers are invited to participate in periodic check-ups and vaccinations. The purpose of the control examinations at the consultation center is to identify diseases and developmental disorders as early as possible so that they can be treated on time. In addition, the youth doctor or nurse can support you with tasks that fall outside the scope of the hospital, such as upbringing, support of sibling, choice of school, daycare (nursing). In addition, they are connoisseurs of the social map in the neighbourhood and can offer support in familiarizing your child with this.

A number of organizations (such as MEE, child rehabilitation and daycare centers) work together at Integrale Vroeghulp. It is precisely this collaboration that makes Integral Early Aid very valuable. Everyone brings his or her own expertise; your child will be looked at from all perspectives. Here you can ask all the questions you have about your child. In some municipalities, the Center for Youth and Family, for example, is responsible for this. The consultation office can help you with this.

Some appointments and examinations, such as having a pediatric neurologist make an MRI, or appointments at a paediatrician, pediatric urologist, a pediatric nephrologist and the like can only be done in a hospital. Your doctor will be informed of all procedures and examinations.

Depending on the diagnosis, you will go to a rehabilitation center with your child for the first years of therapy or daycare. Physiotherapists, occupational therapists, speech therapists, rehabilitation doctors, remedial educationalists, social workers and psychologists work together under one roof and often in a team. The rehabilitation centers work closely with hospitals, nursing homes, general practitioners, primary care and home care. If your child goes to special primary education, they usually receive therapy at school and you no longer need to go to the rehabilitation center.

If you hear the diagnosis, you may have a lot to process in one fell swoop, emotional and / or practical. Is it all too much for you or can you no longer see the forest for the trees? Then it is good to know that you can go to different places for professional support.

Your doctor is primarily there for health problems, but an important task of the doctor is also to monitor the entire situation of patients. They know more about you and your family than other professionals and therefore they can help to coordinate all care around your child. It may be that you need to “remind your doctor” about this. Your doctor can also tell you exactly when he should refer you to a specialist.

At the hospital, the rehabilitation center or possibly later at the special school of your child, you will be assigned a social worker. If not, ask for this! This is a permanent person who can help you with everything that you encounter regarding your child, both practical and emotional. The social worker knows all about healthcare and your personal situation and can advise, mediate or refer you to the right body.

Do you notice that your relationship or the entire family suffers from the new situation with your child? Then do not hesitate to engage in a relationship or family therapy. Such a therapist offers therapy where both partners or all family members are present together. Everyone’s problems are central to therapy. That way you work together on a new balance.

A psychologist helps people with psychological challenges. This can be uncertainty, worries about the future, feelings of guilt about the past, relationship problems or problems at work. A psychologist first explores the problem and then proceeds to handle the complaints. This often happens in a very practical way, such as with writing assignments, role-playing games, practical exercises or relaxation techniques. After all, improvement does not occur automatically and requires time and practice. Going to a psychologist certainly does not mean that you are “crazy” or “weak”. By doing so, you demonstrate that you take responsibility for solving your problems. A psychologist can also be very supportive.

Every parent of a child who has a chronic illness or disability will sooner or later have to deal with a remedial educationalist. This is a therapist who deals with more difficult learning and upbringing situations of children and with the education of a child with a disability or chronic illness. If you run into parenting problems (for example if your child is extra demanding, or if they are constantly bored by their disability), the remedial educationalist can advise you well. There is usually an orthopedagogue in your child’s treatment team. Feel free to address them with additional questions.

You can contact the MEE Foundation for advice on practical matters concerning your child. How do you arrange help? What budgets are there for financial support? And where do you request it? Together with you, MEE maps out what is possible and they can, if necessary, help with filling in forms and other paperwork.

The Center for Youth and Family (CJG) is for all parents and educators who have questions about the upbringing, growing up or health of their child. For information, help, advice and support you can contact the CJG in your area. You can also go here for tasks in which Stichting MEE was previously involved, but which can no longer be offered due to budget cuts.

Everyone needs a break when caring for a child who has a disability or chronic illness and that is exactly what respite care offers. In another location or at your home, respite care staff take care of your child while you have the time to do something else. Or just nothing at all! Being alone to charge your battery, do something with your other child or children, do some jobs around the house … Thanks to respite care, this is all possible.

Do you have questions about your child’s development? Or would you like to talk to people who are experts in the field of disability or chronic diseases? Then family support might be something for you. This home help is intended for children and young people with intellectual or multiple disabilities. The guidance, including the number of guidance hours per week, differs per family and works closely with the parents.

1. Request and find information
   It is not about how much information you collect, but how accurate it is. Do not be afraid to ask questions, because that is the first step in understanding your child’s disability or illness. Learn to formulate your questions so that you get the information you want. And keep asking until you have received the information and understand it. Remain friendly, but bold.
2. Learn the terminology
   If someone uses a word that you don’t understand, stop the conversation for a moment and ask that person to explain it. Especially in conversations with doctors you can, may and must do this. Above all, don’t feel “stupid” because professionals are often hard to understand for everyone.
3. Ask for copies
   Ask for copies of all documents from doctors, teachers and therapists related to your child and collect them in a folder. Are you not that organised? Then buy a box where you store all the paperwork. If you need something later, at least it is all in one place.
4. Don’t feel intimidated
   Many parents feel insecure around doctors and / or therapists due to all their diplomas and, sometimes, because of their professional way of doing things. But it is not necessary at all to feel intimidated by the knowledge or background of anyone who treats your child. Like you, professionals want you to go home with a good feeling and clear answers. And … you are your child’s expert in the end! Although you can get a lot of information from books and from professionals, that does not mean that all information applies to your child. No two children are the same, so it is important to see what happens to your child.