Positive about Down syndrome

Positive about Down syndrome provides information and support to new and expectant parents of a little one with Down syndrome.

We have amazing online support for our families, we know how important it is for them to have access to accurate contemporary information and so provide our book #NobodyToldMe the truth about Down syndrome to families and literature to maternity units.

We have recently introduced online early development groups for our preschoolers, baby Makaton signing courses for new parents and Makaton training for members’ nurseries/childminders.

We believe every parent should receive the best possible care and support.

We believe the arrival of every baby with Down syndrome should be celebrated.

We believe every child with Down syndrome should be given every opportunity to flourish and thrive.

  /  Into Childhood   /  Qeis Sheikh

Qeis Sheikh

Babies of any race or religion can have Down syndrome. Mum Tania Naima Khan joins us today to tell us all about her supportive Muslim community and their pride in her son.

As always we are happy for you to share.

I gave birth to my second child a few months after we shifted to Cambridge, UK from Pakistan. Before the year was over, we were now looking forward to settling our family in Cambridge. Our new baby boy was barely 9 months old, when we were surprised with another pregnancy.

 

Time flew by caring for our new baby boy, settling our 6 year old in school and adjusting to the norms of a new culture. Before we knew it, I was in the delivery unit with my husband beside me. I delivered another baby boy, who was being checked by the pediatrician. Within twenty minutes of his birth, the doctor announced that he suspected Down syndrome. Neither I nor my husband had a clear idea of what that meant. Following that, we were handed leaflets and brochures stating the possibility of our new child having speech issues/ physical and mental disabilities/possible heart problems.
My husband and I both shed tears- in shock mostly. I spent the night at the hospital sobbing at the thought of raising my ‘disabled’ child. The next morning my husband came to me with an email he had composed for family and friends. The email started off with a joyous announcement that our two children now had a baby brother; that mother and baby were doing well, with photos to show how beautiful our new baby boy was. The email then carried on to say that our new baby had Down syndrome. Very casually, it was also mentioned that there were links attached to learn about Down syndrome, for those that weren’t familiar with it. This email took a load off me- I had been overwhelmed with how to announce our baby’s condition to our large extended family units in Pakistan, who were mostly oblivious to any disability.

 

I slowly warmed up to my new baby, who was still unfamiliar to me. There were daily phone calls from family members from Pakistan. Both our families were extremely supportive, particularly from an Islamic perspective. I was told that this baby is Allah’s blessing to us; that we were fortunate to have an angel amongst us. As comforting as these words were from family so far away, I still wondered how I would cope. As much as I tried to see our baby’s disability as a blessing, I really couldn’t.

Soon I was introduced to another Pakistani Muslim woman on Facebook. She had three daughters with a rare genetic disability. These girls were now in their early teens, but were bed ridden. Their mother’s posts were often accompanied by ‘Al-humdulillah’ (by the grace of God) It is an expression of gratitude. I was taken aback by her approach, and asked her what exactly she thanked god for. Her answer resolved my faith as a Muslim. She thanked God for her feet to walk over to her girls, and her hands to attach their oxygen masks so that they could breathe through the night.
I picked up my sleeping baby and laid him on my chest. He picked his head up and I saw ‘noor’ (light) on his face. He didn’t need an oxygen mask to breathe- he needed just love and acceptance from me, as Allah’s special little gift to care for.

Since then, I very often repeat Al-humdulillah as well J Allah has selected him to lead us to an exalted position! Not a minute goes by that I don’t thank God for my son with Down syndrome J He loves unconditionally, has no expectations, forgives instantly, empathizes instantly…His abilities match no other person I know- He is a perfect human being!