Pastoral Care to Parents of Mentally Handicapped Children
“We Received a Baby”
A happy and thankful father informs his elder, “We received a baby!” After the elder’s question whether everything is fine and after the confirmation of the father, a sincere “congratulations!” is expressed.
The baby is born on a Friday. The following Sunday the congregation is informed, as is usual in the church where the parents are members: “In the family of brother and sister A. a baby son was born. The Lord has made everything well with mother and child.”
In the course of a few weeks the parents notice that the baby does not react “normally” — the baby is their fourth child. After one or more check-ups they are told that their child is mentally handicapped. There is no way to say as yet whether it is a light or a serious type of handicap.
But it becomes clear: the baby is mentally handicapped. A hard conclusion. It feels as if you’re losing ground under your feet. You were well aware that something like this was possible. Before the birth you discussed it together. You have taken it into account—which is something different from “you counted on it”. But then when it becomes reality there is bewilderment, also with believing parents. Questions about the future present themselves. Doubts about God may occur. Questions arise: why us? How did we deserve this?
The elder is informed and goes on a visit. He makes his appearance, yet he is speechless. The only and all-comprehensive thing he has is God’s Word.
Oh no. He does not enter and right away open up his Bible in order to read a fitting passage about a deprived or handicapped person to whom Jesus showed mercy. In itself it is true: the Bible provides clear evidence that God chose the weak and insignificant. In itself it is true: the apostle Paul tells us that God has so composed the body (his church) that he gives more honour to the parts that lack it so that there may be no division in the body and that all church members would show equal care for one another (see 1 Cor. 12).
And yet, in the first instance the Bible remains closed. At the same time the parents and the elder know they are speaking with an open Bible.
The elder allows the parents to express themselves. Words are said in which we can hear bewilderment, sadness, doubt, perhaps rebellion. The elder is listening. He does not interfere, also not when rebellion against God becomes public: do you think that this child has been wonderfully made? Can you say, brother elder, that the Lord made all things well, as was announced to the congregation?
Sure, there is another possible reaction. Sometimes a parent can assume an attitude of acceptance in the sense of: there is nothing we can do about it; it is God’s will that we receive a child like this.
Such an attitude may have the appearance of more faith and strength in faith than the attitude of the parents who are upset. However, that is an appearance only. Pastoral care will be different in either case. From this it is also evident that it is difficult to speak of “the” pastoral care for parents of mentally handicapped children.
However, someone who rationally, pragmatically, and believingly accepts a handicapped child may not have properly processed the true nature of the handicapped child. Later on that can have unpleasant consequences. Someone who is emotionally processing the handicap of the child and in this way, a way full of struggle and depths, reaches an acceptance in faith, will often have fewer difficulties later with all that the handicapped-ness of the child entails.
Incidentally, when we speak about “acceptance” we mean the acceptance of the handicapped child. That is something different than that we accept the handicap of the child. The same holds true for a “normal” child: parents need to love their children with all their shortcomings, which does not imply that they have to love the shortcomings of the child.
We go back to the couple we were discussing. The elder has not said much yet during this first visit. When the parents are done talking, he will not start off with words that in and of themselves are true, such as: “Yes, but you do know that this too is a child of God, don’t you?” Or: “Once there will be a new earth where there will no longer be any handicaps.” The elder will first have to show that he has a proper understanding for the bewilderment of the parents. However difficult it may be, he will attempt to put himself in the situation of the parents, who see a big red X through all that they had expected for the future. He may not soothe them with words such as “Perhaps it will not be all that bad”. Finally, he may point to him who has promised to give strength in such situations. Also strength to process having received this baby, and to learn to see the child as someone embroidered by him. When the elder concludes his visit with prayer — a proper conclusion — he will suffice with praying for the parents that they may receive God’s strength.
In the following weeks the elder will bring extra visits to this couple. In these subsequent conversations it will focus more and more that also this child has been wonderfully woven by the Lord; that this child too is engrafted in the palms of God’s hands; that no one will be able to snatch the child out of his hand; that this baby has rightfully been baptized and that he or she has an honourable place within he congregation; that without the presence of this young child the church is incomplete; that the presence of this child brings into remembrance of the members that the church has a Saviour who is merciful, who heals, who promises a future and a hope, also for those for whom this life offers few chances.
These things will feature more and more in the prayer of the elder. The prayer at the first visit — for strength — gains more and more in strength when afterwards it is prayed that the parents may perceive that it is an honour that they received this child: God deems them capable to accept and to care for this child.
Elders will pray that the Lord will continue to grant the parents that they pay attention to the other children in the family. The thankfulness for what the Lord has given also in the other children may not be lacking.
The elder will also give thanks for the possibilities that are offered to make thankful use of professional care organizations such as provided by “This Child of the King” (in the Netherlands).
“And this on top of it...”
After an indeterminate number of months or years it becomes clear that the young child is severely handicapped. The child will never know or recognize his parents. It will never be able to say Daddy or Mommy. It will not take long before the child needs to be placed in a special home. Again: great disappointment and intense sadness. For the parents are still busy processing the fact that their child is handicapped. They have made progress, by the strength God gave and in the power of prayer.
But again what they see looks like the future is collapsing. For to have a severely mentally-handicapped child looks so much worse than to have a child with only mild symptoms. With such a child you can have contact, even some communication. But this will never be the case with a severely handicapped child.
Here too pastoral care during the first visit will consist mainly of listening. Especially the elder will try — also with a view to his prayer — to hear from the parents and to get to know the most profound problem in this situation. Does it have to do with the wound that was healing, but now has burst open again? Or is it the fact that contact will always be impossible? Or perhaps is it concentrated in the fact that this child now has to be placed in another home? Or is it a combination of things?
In the conversations that now take place the elder may say that it is also true of severely handicapped covenant children that they are God’s children: children of the King. They too were created good. This means that they respond to the purpose God had when he created them. These children too have a purpose; their life is not meaningless. Without them God would not move forward quickly to the great day of Jesus Christ.
No — no one may ever underestimate the great challenges if parents can never have contact with their child.
In the course of time the elder may however point out that these children themselves have no notion of their handicap; that they will not notice that they have been placed in a different home. These children can never be pulled away from God. They are not susceptible to Satan’s temptations. God has promises for these children, without demands. Therefore the glory of God’s grace is so marvelously great for them. Later it will also appear that the parents are capable of giving these children much love, without ever expecting it to be returned. Is this not a gift from God our Father?
Precisely because of this love for the child, parents find it difficult for their child to leave the parental home. Yet the responsibility for the other children, and the impossibility to keep this child at home, make such a decision possible. In this period that the child leaves the home, pastoral care is needed. Praying together can mean so much! There is prayer that God will stay near the child; that the parents will receive the strength to still look after their child and continue to give their love. There will be prayer for those who in a home or institution receive the care for this child.
After this the elder will continue to check in with this family, where the severely handicapped child now has been placed in another home. The elder will pray with them, and sometimes he will accompany them to the place where the child receives care. The child does not notice, but would un under-shepherd not care for the sheep to whom the Chief Shepherd gives all his attention?
“Our child has died”
A last (?) stage of pastoral care for parents of severely handicapped children: the child dies.
Pastoral care will not differ much from the care for parents who lose a “normal” child. In this case it may receive extra emphasis that perfection has been reached for this imperfect child.
It is certainly improper and wrong if the elder accentuates the fact that the parents how now been relieved of a burden. That is not at all correct. I am not saying here that having a handicapped child is not a burden. But when the child passes away, this is not a case where a burden falls away for the parents: their child is no longer here! And the fact that the child is no longer here on earth may never be belittled by saying that now there is a burden that was taken away.
The loss is very real to the Christian parents, perhaps even stronger than with an “ordinary” child because the parents could and had to give so much love to their handicapped child. For the kingdom of God belongs also to profoundly handicapped children.
The father said to the elder, “Our child has died.” The elder may verbalize the biblical message in word and prayer: “You child is alive!” For God is not a God of the dead, but of those who are living: of the living Abraham, the living Calvin, the living Schilder, the living ...... . Here parents may fill in the name of their severely handicapped child who had died. This name may stand there, in this row. It is a miracle of grace. The Lord has wanted to make everything right. The elder may include this in the words of his prayer. There is sadness, but Lord — you do not make mistakes. You took ...... into your glory. Together with the parents the elder may confess in his prayer the majesty of the Lord, which becomes visible in both giving and in taking away. He prays for strength and for further progress on the way to Life.