As-salamu `alaykum wa Rahmatulallahi wa barakatuh my dear sister.
As you said, Allah granted you with a son, a new life, a life to be lived, not pitied, not molly coddled (i.e.over-protective), but a life that can teach us about the true meaning of life. A child considered as being "normal" may have all his limbs and features in tact, but may have emotional or psychological problems, and then there are always those who say mentally disturbed children are abnormal. What is abnormal but socially acceptable is when we do not live our lives to the fulllest and expect others to follow suit. We "normal" people like to hamper each other and put obstacles in each others way, or give someone a complex because of our own feelings of insecurity and this is considered normal.
Let me tell you about Omar Al-Awadi . Omar Al-Awadi is a Kuwaiti with Downs Syndrome. His mother Dr. Sadika Al-Awadi rather than see her son's condition as a disability to succumb to, she saw her son's condition as a challenge. It was her and her husband's strong iman (faith), that helped them to determine how best to take care of Omar. Omar was not confied to his home, but went to kindergarten and had some special teachers too. When Omar was 12 years old, he inspired his mother to become a clinical geneticist. , "Omar was perhaps the most motivating factor behind my interest in establishing the Kuwait Medical Genetics Centre in 1979." , "Omar was perhaps the most motivating factor behind my interest in establishing the Kuwait Medical Genetics Centre in 1979." At the age of 22, he successfully completed his school diploma. He worked full-time in a special shelter workshop printing silk materials for a respectable salary. Omar at the age of 30 is a keen pianist, photographer, a licensed driver and can hold a healthy conversation. Professor Talat I Farag who knew Omar since he was a child had this to say about him: " The show presented by Omar and his friends, the "Dancing Angels", convinced me that Down Syndrome is in fact curable condition. He was taught how to communicate, how to love and how to become a member of a team. I was touched at the sight of the children singing and dancing while carrying hearts with the Kuwaiti flag, sending a message of love and peace from Kuwait to the region and the world, in an era where the world seemed filled with conflict, hostility, and war. Yes, LOVE THERAPY has succeeded in helping Omar and his friends to conquer the harmful effects of Trisomy 21" [ one of four types of Downs Syndrome].
You might not a doctor with a son that inspires you onto to do clinical geneticism, but Omar can definitely help to putyou in touch with the real meaning of life; and not as we "normal" humans choose to waste it. We can see the important role of unconditional love (i.e. loving without conditions) has played in Omar's life. Researchers in the U.K. in studying emotional intimacy between couples found that when a spouse is touched by the emotional intimacy (e.g. a facial expression) by the other spouse, that it connected the circuitary in the brain. There is a closer connection and a greater response based on a feeling of emtional security. Children need this emotional intimacy from their parents regardless of their level of "normalcy", this intimacy tests and inspires to do more out of a deep sense of belonging and hence security. I have observed a beautiful baby who had so much joy that dwindled into a permanent expression of fear by the time she was 18 months old because the mother withdrew the duaghter's right to emotional intimacy because her daughter was growing from being the "doll" that she could dress-up to a child with needs greater than looking pretty. It is a distressful sight. You want for your son to grow up to be a good practicing Muslim, which goes beyond the ritual of prayer, fasting, learning to read the Qur`an etc. These blessed acts of worship, only rise above being rituals when:
"Al-Din is a name of sincerity and well wishing. Upon this we said: For whom? He replied: For Allah, His Book, His Messenger and for the leaders and the general Muslims...(Muslim 1 #98)
and:
"When one amongst you believes (truly) till one likes for his brother or for his neighbor that which he loves for himself…"(Muslim 1 #72)
Because your son has limitations at the moment, it does not mean those limitations will remain so, depending on how you help him to develop. Also, because Downs Syndrome is a mental disability, it does not mean that your son is not a Muslim even without the ability to pray etc (which most two year olds cannot do anyway). Psychologist Yasien Mohammad tells us the following:
"Although all children are born in a state of fitrah, the influence of the environment is decisive; parents may influence the religion of the child by making him a Christian, Jew or Magian. If there are no adverse influences, then the child will continuously manifest his fitrah as his true nature. Since many infants are born with gross physical deformities, the maiming referred to in this hadîth is not meant in the physical sense; it means that all children are born spiritually pure, in a state of fitrah .."
As you pray, your son will observe, so by your actions and examples, he willl develop a sense of Islam as a part of daily life just like any other child. He might not be able to understand, but your visible acts of worship will become a part of his reality. Who knows when he might feel tempted to copy you, what an incentive to help us improve our deen as parents!
Physical Therapy is important to help exercise your sons muscles and give them strength. Physical Therapy aslo prevents any physical abnormalities from developing. Imagine lying on your back, what exercises could you do using your legs? Now imagine holding your son's legs by the ankles and helping him to do these exercises like cycling for instance.
Communication between you and your son is no less important because your child has Downs Syndrome. All humans need to be able to express themselves. Because your son may have linguistic problems, it does not mean that you should limit communicating with him; in fact it is the opposite. There is no set approach, because each child with Downs Syndrome is different. Communicate by anunciating your words like a piece of music where each note has to be identified. He might be okay with vocabulary and find grammar problematic. Just like when someone says something that we are not quite sure of, we repeat to see if that is what was meant. Your son might say a word/a few words and you can feed those words back to him in the form of a sentence. Basically, do not settle for little commucation and how much you enjoy communicating with him can make the difference between making your daily life tiresome or wholesome. This in turn wil encoruage those around you to enjoy his company and to not see his company as an inconvenience. If you can get a speech therapist who is sensitive to your sons needs he/she can give you much needed advice.
Try visiting this center in your country to get further guidance:
Downs Syndrome Association of the Philippines
Phone: (632) 813 0674
Fax: (632) 815 6319
Just when we think we know everything, live presents wonderful surprises to challenge that misguided belief, so go ahead, enjoy being a Muslim mum and see what lessons your son has in store for you.
For your further guidance, try the following links:
Toilet Training Made Semi Easy
Nutrition and Downs Syndrome
