We live in a Middle-Eastern country where there are not many opportunities (like in the west) to help people with Down syndrome. I mean like training that would prepare them for adulthood life. I cannot imagine her being married and having kids although I read on the internet that it is possible! I am really confused. She does not really go anywhere where she meets other people like her. She likes school and has friends there though.
Recently, a mom who has a son with Down syndrome (older than my daughter by a few years only) came to me and asked whether I would agree to marry my daughter off to her son. Honestly, I panicked! I don’t believe people with Down syndrome should marry and be left alone in their own home. Would they have kids with some kind of mental disabilities? On the other hand, I know they have such feelings, and maybe it is their right, too.
How could marriage work with such people? How would they handle issues like sex and parenting? Maybe they could live together with the parents under one roof, under the eyes of the parents who make sure nothing “that” happen between them? Please help and/or direct me to any organization that could help me with this issue. What does Islam say about it?
Answer
In this counseling answer:
• It will depend on to what degree your daughter desires to be married as well as to what degree you and the boy’s family would be willing to help them to live towards a successful and happy marriage.
• What needs to be taken into consideration to a lesser degree (as we all can get sick) is the general health of both your daughter and the boy.
• I kindly suggest reaching out to your daughter’s teachers and physician for referrals and groups to help prepare her should she decide that marriage is what she wants.
As-Salamu ‘Alaykum sister,
Your daughter sounds like a wonderful young lady, ma sha’ Allah! It sounds as if she is successful at school, socially as well as at home. While I can imagine this proposal came as a shock if you think about it from a different perspective, it makes sense. Not only would your daughter have a companion to share life with who can understand and love her, in sha’ Allah, but you also will be getting additions to your own family, creating a stronger bond of support and love with another family.
Have you talked with your daughter about what she would like to do? Have you discussed sexuality with her and what she might be feeling? According to the National Down Syndrome Society, teens and young adults with Down’s syndrome often express an interest in sexuality, getting married, and having children, something I am sure you are aware of. I would kindly suggest that at least you talk with your daughter about these issues. If you need the support of a counselor or specialist in this area, please do engage one that you are comfortable with to aid in the discussion so she can process the information in an appropriate way.
Many people with Down’s syndrome marry. They too, as all of us, have desires, enjoy companionship, and seek bonding as they get older. In the USA, there have been many cases wherein married couples have enjoyed wonderful marriages and home life with the help of family or caretakers. It will depend on to what degree your daughter desires to be married as well as to what degree you and the boy’s family would be willing to help them to live towards a successful and happy marriage.
Also, what needs to be taken into consideration to a lesser degree (as we all can get sick) is the general health of both your daughter and the boy. What, if any, health issues may arise in the future which are associated with DS and what kind of care would be needed? I kindly suggest, sister, that if your daughter decides to go forward with the marriage you discuss all topics and concerns with the boy’s family so you both can have a clear picture of what this marriage would look like and how both families can agree and support their marriage. While I am not an Islamic scholar (and you may wish to consult one), in good conscience, I cannot advise you to try to prevent your daughter from enjoying the benefits of marriage, such as lifelong companionship and a halal means of sexual expression.
While I understand the area you live in has limited resources, you could always join webinars, parental meetups, and other groups via the Internet for support and information regarding your situation. Some encouraging and informative articles include: The Disabled Muslims Network, Lydia and Tom got Married, and The National Association for Down’s Syndrome. While these may not answer your questions directly, they do offer some insight and ideas on how to create a happy life for your daughter should she chose marriage.
I think, dear sister, that in analyzing your and your daughter’s options is to explore the many abilities and contributions young adults with DS have made and can make, realistically realizing the special needs they may have to reach their goals.
Check out this counseling video:
https://www.youtube.com/watch?v=pJ8b9NWNSpw&t=1s
Hiba Al Sharfa is an example of one young women in Palestine who has DS and is making great contributions as a teacher of students with DS. Sister Hiba is a former student of The Right to Live Society which was founded by Nabeel Aljaneed. “The Right to Live Society is supported by Alwaleed Foundation, which works to provide facilities to students with Down syndrome so that they can live a successful life like everyone else. It also works to spread awareness among the people who are still quite unaware of many intricacies of the disability”
These stories inspire, encourage, and open new doors for parents of children with DS as well as individuals with DS. Education about marriage, sexuality, and partnership is vital for both you and your daughter.
I kindly suggest reaching out to your daughter’s teachers and physician for referrals and groups to help prepare her should she decide that marriage is what she wants. Should she decide she wants to marry, I would kindly suggest discussing birth control with her and her physician to see if that would be the best option and to determine if that is what she wants as well. While a few couples with DS do have children, the rate of passing DS down to the unborn child is high, so that would be another discussion you may want to have with her. Islamically, I cannot find any rulings, so again you may wish to speak with one of our scholars.
As the boy’s mom approached you with a marriage offer, it seems that, in sha’Allah, his family would be there as well to help them throughout their marriage. Additionally, in sha’ Allah, the family would also become close with you, thus providing you with the comfort and support knowing your daughter has now two families that love her and are there to help care for any needs that arise.
While I can imagine that this is not easy for you, please do understand that it is possible for them to have a happy and successful marriage. It will take education, work, and some sacrifices from both of the families, but isn’t that what parenting is?
Sister, please do make istakharah concerning your daughter’s proposal if she accepts the idea and encourages her to do so as well. In sha’ Allah, keep in mind that nothing is perfect, that is why we need Allah (swt). He (swt) is most merciful and most loving. You are both in our prayers. We wish you the best!
Salam,
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