Looking after the well-being of your family is never easy, especially when you have a child with special needs. Children who have special needs have a condition that makes their development happen differently from that of all other children their age. Depending on their diagnosis, their entire overall development is affected or only certain aspects of their development (eg motor skills, language, behavior, socialization, management of emotions). These children need measures to promote their functioning in their families and their integration into different environments, such as daycare and school. It is also important that parents who raise these children also learn to take care of their own needs as well.
Who are children with special needs?
Children with special needs have a variety of characteristics. They may be children with a physical impairment (eg an amputated child), a sensory impairment (deafness, blindness) or an intellectual impairment (eg: Down’s syndrome). This also includes children who have a developmental disability (eg. Cerebral palsy, Gilles de la Tourette syndrome, disorder autism spectrum ), a disorder of attention deficit ( ADHD ) or a disorder of opposition as well as children with a language or learning disability, such as dysphasia or dyspraxia.
It may also happen that children who live with a mental health problem such as an anxiety disorder or a chronic illness (eg diabetes, cystic fibrosis, Crohn’s disease) have special needs.
According to Parenting Teenagers Academy, these children need special measures to accomplish different activities in their daily life. For example, a child with a language impairment may need visual support to complete their daily routines. A child who uses a wheelchair also needs special measures to become more independent when traveling.
Not so long ago, we talked about children with “special needs”. The designation “special needs” is criticized, however, because these children have the same basic needs as everyone else. That is to say that their basic needs (food, shelter, security) must also be met. They also need to develop as harmoniously as possible, to be loved and stimulated, etc. A funny video (in English) featuring young adults diagnosed with Down’s Syndrome (21) expresses this point of view.
The shock of the diagnosis
The announcement of the diagnosis is often experienced as a shock by parents. Learning that your child is experiencing physical difficulties or has developmental problems arouses strong emotions. Here are examples of possible reactions:
- Parents often state that they do not understand all of the elements explained by professionals when the diagnosis was announced. On the one hand, they are too upset to understand everything. On the other hand, some medical terms are indeed very complex.
- Parents sometimes feel helpless when they get home. They must begin to mourn: the mourning of the “ideal” child and the so-called “normal” family. In addition, each parent experiences it in their own way and at their own pace, which can cause tensions within the couple.
- Some parents may experience anger and find the situation unfair.
- Others feel guilty about their child’s condition even if they have nothing to do with it.
- Parents can feel misunderstood by those around them who do not experience this same reality.
These reactions are normal. The diagnosis indicates to parents that they will face greater demands than those generally faced by parents of children who do not have special needs.
Requirements and responsibilities
Being a parent in general is demanding. You have to give the necessary care to your child, accept that you cannot control everything and deal with the unexpected. This reality is even more true for parents of a child with special needs, as they have greater responsibilities than the majority of other parents. Here is an overview of the challenges ahead.
Children with special needs often require additional care or more time and help to do what the majority of other children do. For example, a child with a physical disability may need the help of his parents to dress, eat and wash even if he is older.
A child with an intellectual disability or a disorder such as dyspraxia or ADHD also requests more support on a daily basis. For example, it may take longer to get dressed (due to motor or attention difficulties) or experience more frustration during transition times (e.g. the child resists when he has to stop an activity he likes to do a compulsory task he likes less).
This requires a lot of patience on the part of the parents and the implementation of different strategies. Certain problems or illnesses present other challenges for parents, such as administering medication, sometimes several times a day, or preparing special meals.
For some families, it can be a bit difficult to stay positive or keep your child positive. This is where it is going to be very important for the parents to lead by examples by using some positive thinking. It can be very beneficial to surround yourself in a positive environment. It can also be helpful to have your child read some affirmations that can uplift their spirit.
The many meetings
Sometimes one of the parents leaves his job to take care of his special needs child full time. There is therefore often a drop in income among families who have a child with such needs.
Depending on the diagnosis, the child with special needs is generally supervised by a team of specialists: speech therapists, occupational therapists, psychoeducators, social workers, physiotherapists, etc. This means that he often has appointments to obtain appropriate treatments.
The accompanying parent sometimes has to take time off from work and arrange to have siblings, if necessary. Parents also play an important role in implementing the recommendations , exercises and strategies proposed by the various stakeholders.
Many parents of a child with special needs suffer from isolation. Their reality makes visiting family and friends more difficult. The entourage may also feel uncomfortable with the situation of the child and all that that implies (different behaviors, less availability of the adult) and thus move away little by little.
The many appointments, additional needs of the child, lack of sleep, feeling of helplessness, worries about the child’s future, lack of professional services and isolation are examples of the different factors that explain why parents of a child with special needs are at risk of fatigue. In the long run, this fatigue can lead to exhaustion and depression.
How to adapt to the special needs of your child?
Certain strategies can help parents better adapt to the specific needs of their child. Its important that you keep your mind open, stay patient, and be flexible. Remember that your child did not ask to be born this way. Keeping calm and reminding yourself of your love for them will help you through the challenges you will face.