Another important factor to note in Down syndrome children is that they are not usually as strong as other children even if they appear to. This knowledge would make you not to stress them up and not over-expect physical fitness from them. Such children always like to lie down on their backs with the face up or lie down on their stomachs with the face down or up as the case may be.This is because they have a problem with their back bones. Their back bones always take a longer period to be firm and strong. So, early detection and therapy are very important. In one of the hospitals we attended, we were shown a wooden chair constructed with a belt which was meant for the baby to sit on for the first six months to a year. The chair is supposed to help in strengthening their back bones and necks; upright sitting posture.
Parents and care givers should endeavour to take advantage of such services provided in the hospitals, so that their babies’ conditions do not get worse. Physiotherapy and neurological management of such babies as often said may not eliminate the condition but will help the child to cope and prevent his condition from deteriorating.
A note of warning here; often times when one has a baby with critical health challenges, many unsolicited counselors would emerge; informed and uninformed ones; qualified and unqualified ones as well. But one needs to remember that most of these ‘pocket’ counselors may not be experts, so one should ignore their advice and rather go to the hospital to be diagnosed and treated.
Giving excuses such as ‘I do not have some money’, ‘there are always long queues and less attention in public clinics’, may not be tenable and dangerous too.
Delay may be very dangerous, even if you want to go for prayers, know the magnitude of the problem so that you can give God due praise when the problem is solved. It is advisable to couple prayer with doctors’ advice and run with it. Consulting herbalists, spiritualists and Rastafarian prophets will do more harm than good. Obedience and absolute confidence in the power of God will not fail.
What Should Parents Do if their Child is Diagnosed of Down Syndrome?
The news that your baby has Down syndrome may not be a palatable one, especially for a mother who probably puts to bed for the first time after a long time of barrenness or delayed marriage. For mothers who are not aware of the condition yet, it raises a lot of curiosity in them. Those who are already aware of the condition, receive it with shock. This is probably due to a lot of challenges affecting the condition and the uncertainty of what the future holds for them. Such worries may also stem down from carefree attitude of the doctors who may not be able to match their diagnosis with adequate counseling; some of them will start by naming all the diseases which such children are vulnerable to. When I was told the number of diseases that my baby is prone to; I was so confused that I could no longer remember that the phrase ‘prone to’ actually means ‘vulnerable to’, not that the child is bound to have them.
Some mothers may actually be in my shoes that would be so overwhelmed to the extent that simple words would become difficult to understand. Social stigma is another factor that makes affected parents worried,
As the medics mentioned various diseases which Down syndrome children are prone to, on different appointment dates with my son, I was almost rendered speechless on each occasion but I always summoned courage to go back; hopeful that all would be well with my baby no matter what. I reasoned that some people train dogs as pets to an extent that they almost behave like humans, how much more a human being with two legs and two hands; ‘I will train him’, I concluded. No man or the devil can create a human being. In recent times, we have heard news of some scientists’ cloning of sheep with plans to do same to humans. But up till date, no human clone success yet.
It is not unusual to be heartbroken and weep when one is faced with the reality of the news that one’s child has any of these neuro developmental disorders. At first one may be worried about what neighbours will say; I mean stigmatisation. How does this tally with the promises of God and all that for Christian parents especially?
However, there are four suggestions I have that can enable one cope with such a reality:
Accept the professional findings of your doctor; create an enabling environment for you and the baby; and protect the baby. Let me shed more light on them accordingly:
First, accept the professional findings of your doctor or doctors after confirmatory tests and also accept their advice.One may think and ask,‘why must I accept? This is common especially with believers of the Word of God. He may reason further, ‘Does not the Bible instruct we believe and accept the language of faith? Therefore, I reject it, it is not my portion’. Sometimes this reasoning does not depict that some of these professors have enough faith to surmount their situations.
It may sometimes mean an outburst of utter disbelief and surprise when some Christians are faced with difficult situations. People of faith like Hezekiah did not do so; he was not rude to the prophet whom God sent to tell him to set his house in order for it was time for him to die. He accepted the message calmly and went back to God after the prophet had left. So, you should accept the message first too, and then go to God. At the place of prayer, he will speak to you to hasten or control.
In the case of Hezekiah, the verdict was changed, see 2 kings 20:1-10, but in the case of Apostle Paul, God told him, ‘ My grace is sufficient for you’. See 2 Corinthians 12:9, this means my son you can drink this cup for a reason best known to me. So take that child with love and care for him whether his condition changes or not. God allows him to come like that for a reason best known to God. God’s ways are past finding out.
Recently, a story was told of a Christian woman who rejected by faith the positive result of Human Immune Deficiency Virus (HIV) test when she was pregnant. She also refused to take advantage of the Prevention of Mother to Child HIV Transmission programme and ended up passing the virus to her baby, thereby making her case worst. My people perish for lack of knowledge of orthodox medicine as an extension of divine outreach to humanity.
The second thing that such a mother should do is to encourage herself. At this point, I will cite Israel’s King David during his travails before enthronement, as recorded in the book of 1Samuel 30:1-20.The Bible makes one understand that when David came back to the city of Ziklag, he discovered the city had been invaded and his wives and children taken captive by the invaders. He wept bitterly and his frustrated fighting men whose wives and children were among the captives nearly stoned him.The situation seemed hopeless but the Bible account shows that David eventually encouraged himself in the Lord his God and enquired of Him the next way forward.
God told him to pursue, overtake and recover. Of course he did pursue, overtook and without fail recovered all the enemies took away from his camp.
In the same vein, be encouraged that the situation you face is not hopeless. It is a battle to be fought and won; decide to ignore in advance- insults, gossips, and mockery by neighbours, relations, bosom friends and even Christian friends as you forge ahead.
It is a time when some Christian friends will remember all your ‘sins’ that made God to allow that to happen to you. Just ignore them and forge ahead, I urge you.
The third one is to create a conducive and enabling atmosphere for the baby. Normally, the news of the condition can trigger a lot of worry and fear in the home, but now that you have already encouraged yourself in the Lord, begin to form a positive attitude towards your baby, cherishing him and yourself once again. Begin to show an unfeigned love for the Creator; with these you will be surprised how the arrival of the baby with Down syndrome creates a stronger bond between the couple and sometimes between the baby and the older ones or siblings as the case may be.
In due course, it unites the home and builds affection. Consequently, children from such homes learn how to care for the less privileged in the larger society. Above all, the family is being drawn closer to God, for everything works together for good to those who love God.
The last point to consider is protection of the child. Remember the baby has some particular features which distinguish him from other children, especially his facial appearance which is very unique. Many out of ignorance and some erroneous beliefs detest such babies and stigmatise them. It is the duty of the parents (mother especially) to protect her child. You may ask how do you do this? First, through eye contact; if any onlooker tries to look at the baby somehow, just fix your gaze on the person and such a person will definitely mind his or her own business. But do not utter any word or feel bad.
When the child starts crawling or walking around with other children, always be vigilant to curtail him from places of resentment and stigmatisation. Again do not feel bad about that. Remember, the people may be ignorant of all you know about the condition of your child. The attitude of the mother who gave birth to the baby goes a long way to affect others who come in contact with the child.
If you look discouraged and worried, it will reflect in people’s attitude towards you and the baby. It is very important, do not hide the baby rather introduce him first before other children in the family, if there are others at all. Do not entrust the child’s care momentarily to anyone you are not sure is caring enough and understands his condition. When the child starts school, please endeavour to see to it that the teachers wholeheartedly accept him and are ready to collaborate with you to give meaning to the child’s development and learning. The tendency of bullying by other children is higher because Down syndrome children do not talk fast enough and sometimes notas fluent as other children.
They may also not be as strong as other children in the same age bracket with them. So you will do a lot of soldier work all through his childhood especially, and you will always be there for him, bearing in mind that they keep learning all their life time.