Supporting individuals with special needs.

How do we bring up a child who has special needs? With some trepidation I touch the topic, knowing full well that there are no easy answers. It is important from the onset to realize that all children are different and no two children, raised in the same family, are the same. This seems to be a universal rule.

However there are a number of things we need to point out and when done in a loving manner, it may help parents to consider what they do and perhaps in some areas adjust their styles.

As our children grow up into adulthood we teach them appropriate behaviors. Children learn from their parents the values of work, appropriate dress, language, behavior etc.

However, somewhere along the line our brothers and sisters with a disability seem to miss out. Where does all this start?

Expectations:  often we find that there are no expectations placed on our children. Each person may progress at a different rate, yet all can learn. It is imperative that we teach our children as much as is responsible. Often our children can do more if we give them the opportunity to grow.

Boundaries: Then when we have taught something, we also need to teach boundaries. Once a person has learned how to use the telephone, we need to teach how not to use the telephone. At length we need to explain that there are inappropriate times to call. Also the frequency of calls, whom to call and the cost of calls need to be addressed. Some individuals may need a written list of rules and specific times to call. Once the routine is in place, the level of anxiety reduces.

Routines: While routines are important, we do not want to be stuck in the rut. We then need to teach individuals that there are exceptions to every rule. This is a hard concept, but it needs to be dealt with. We have set a time to pick up a person and we teach punctuality. We also want to be consistent and pick up the person on time. One day you are five minutes late and the individual is totally upset. Here we may need to explain beforehand and work on a strategy. Explain that from time to time you may be late. In some communities the train can create a good excuse. Next, work out a plan. What to do if you are five minutes late. How long should the person wait. Phone call? Walk home? Inform employer? In other words, you have to provide a plan to make sure the person will be safe. If you fail to do so, the person may start walking, taking rides from strangers etc. 

Self centered: Individuals with a disability are used to a world of catering. I am not suggesting that we ignore people and be unsupportive, but at times we have created ‘monsters’ (covenant monsters) with the best of our attentions. Yes, a person with a disability may need a lot of support, but the other children in the family also need attention. Helping others, volunteering are good ways to focus less on self. Sometimes we talk too much about our problems and lack the joy of faith.

Control or support: As our children get older, some feel that our actions towards them are controlling. Often they have acquired that attitude from contact with social workers who have been brainwashed with the ‘rights’ philosophy. There is a big difference between control and support. Individuals may need support with managing their money, the use of email, support with finding employment etc. This can be done in a positive way. We do not have to give in to every whim, especially if we know that it will harm the person.

Overprotection: There us also something as overprotection. Lest we forget, all children fall from time to time, scrape a knee or break their glasses. Sometimes it’s good to give a person a reasonable amount of money and allow them to make bad choices. If this occurs too often we deal with the situation and use them as teachable moments.

 Money: Some of our individuals have no idea about money. Often they are the lucky go happy types.  Others are very focused on their money. I think from time to time we need to provide a reality check. If the ODSP cheque arrive, how is the money spent?  Is there anything wrong with charging room and board?  Could you not support the work of the churches, schools and a number of charities? Could you not pay lunch for the volunteer who drives you to work?  It is important to teach the value of money and its responsible use.

Employment: It occurs to me that some of our individuals are somewhat lazy. Lazy is different from being slow, extremely particular or inability to multitask. On the whole we underestimate the abilities of our brothers and sisters with special needs. I also know that employment is not always easy to find and you may go through a few trials. Nevertheless, offer your services to an employer and be realistic about the wage. Short days are usually preferred and there may be medical issues at stake.

Mothering: As you may have noticed each topic flows into the next. Bringing up children and adults is a complex task. Often the person with a disability is the last to leave the house. Parents often feel somewhat guilty about placing their child in a group home. Yet the vast majority of persons who have left their parental homes have blossomed. Part of this has to do with ‘mothering’ we make life too easy for the person. Instead we need to be proactive. Please make your bed before breakfast. Cut the front lawn before we have coffee. Tonight is your day to cook. We need to get our adult children involved in activities outside the home, from summer camp to church baseball and volunteering in the library.

Faith life: As our youngsters mature, we also talk more about faith issues. This includes the difficult topic about accepting one’s handicap without anger to God.

Acceptance of a disability may also mean that marriage is not responsible for the person. I say this carefully, because it depends on many factors. Some parents have talked about it with their children at a young age. Others have avoided the topic and a life long struggle may follow. Although I only wrote a few lines here, I remember a sermon where the pastor spoke about being ‘equally yoked’ that marriage is not in the first place ‘physical’, but much more ‘mental’ if you will.

Contrary to popular doctrine of ‘support’, we believe that a person should be responsible, able to provide for his family and be stable.  This is not to say that people with a disability could not love, or would need no companionship. It does mean that some people need to seek fulfillment in single life and God will also give strength to do that.

Anger, swearing, disobedience, laziness are not acceptable. We should not use our disability as an excuse.

Medication: Naturally, certain behaviours are also caused by damage of certain areas in the brain or imbalance. We need to work with the physicians and psychiatrists. We can be overly afraid to use medication, but we can also be gullible. Doctors do what they think is best. They go by experience and previous history of the patient. They also make mistakes and each doctor has different insights. Good medication and solid support are the key elements in a balanced life.

Food: Food is often an issue. Often due to medication and the lack of exercise and employment, our individuals gain excessive weight, with all its side effects. A reality check may be needed. Our children need to learn the need to restrain themselves. If that ability is not there, we need to help them. If one cookie with the coffee is a rule, insist that it stays one. If a plate full of food has been finished, don’t offer second helpings. If all people have seconds, then provide a small portion the first time. If there is still coffee in the pot, drain it to remove another temptation. Water should be preferred over pop and vegetables and fruit are healthy ‘fillers’.

Community response: At times it seems that what you have built up is undone by others. Teachers have complained that all their labour is undone during the bus ride home. We know better, but there certainly are a number of frustrations. Employers, friends, social workers (definitely not all of them) may tell our children that they need to stand up for themselves, set their own rules, have their own bank cards etc. Sometimes a meeting with those ‘others’ may be helpful. These others may even be relatives who feel your rules or the rules of the group home are too restrictive. Our response is often that to live with other people, we need to have rules. We are not the centre of the universe, and we need to live at peace with others.

The covenant community: We have seen a lot of support from the covenant community and we are grateful for the love and concern demonstrated over the years. I encourage you to treat our residents as adults, help them work through their struggles, include them in your study society and take a little time to listen. We are members of the same body, with Christ as the head. 

BVG