My son has Down syndrome, here’s what his world is like

When their son Munene Mugane was diagnosed with Down syndrome a few months after birth, Lily Mwai and her husband Ken Mugane were devastated, after all, every parent looks forward to having a healthy child with no complications.

But they did not allow themselves to get overwhelmed for long, they picked themselves up and dealt with the situation head on with a blend of firmness and love. This approach has continued to help their son not just fit in, in whatever environment he is in, but also thrive, despite the challenges that lie ahead of him.

Here is their story, as Lily tells it.

 “At birth we didn’t know our son had Down Syndrome, and only realised it when he was around three months old. We had noticed something different with him, mainly that he was very floppy, like a pillow. When we went to hospital, we told the doctor about it. We were advised to do some tests, including the karyotype test, usually done to identify chromosome abnormalities. This test confirmed the diagnosis. To help us understand our son’s condition, the doctor gave us materials to read. At first, I didn’t see anything big. I thought Munene would reach important milestones and move on. But I was wrong. We found out that this was not something that could just be shrugged off when we read more about it online. We finally understood the depth and the negative side of the condition, and I saw my baby’s facial features change, the slanting eyes and flat nasal bridge. I was fearful, but I remember telling my husband that the limitations were in our minds and assuring him that our boy could be whatever we wanted him to be if we took him there. The journey of helping our son achieve his full potential began in our nuclear family, where we started by integrating everyone in the process.

I thank God for Munene’s father, my husband, because we have worked together from the moment our son was diagnosed with this condition. He stepped in from the very beginning. When I was expecting our two elder daughters, I had prayed for girls. Having come from a family of just girls, I thought that I wouldn’t be able to raise a boy, but during my third pregnancy, my husband insisted that I shouldn’t pray for a girl, rather, wait and receive what God would give us.

He was ready to raise a boy, therefore when we found out that I was expecting a boy, he knew from the start that he was his to bring up. Not that I lay back and left him to do all the work, but he was in the driver’s seat.

From toilet training to shaving him, he has been constantly there, fully playing his role as a father.

I remember when Munene was younger, he is now seven, like any other child with Down syndrome, he had very sensitive skin, and so shaving his hair was a challenge. My husband would do the shaving, but now, the two of them go to the barbershop together. Having a child with special needs calls for lots of patience and scheduling because the whole family is involved. From the moment we wake up to when we go to sleep, our lives revolve around what is best for Munene. All of us, including his sisters, are integrated into his schedule, and this calls for consistency so that everything flows smoothly.

We usually wake up at around 6.30am. Munene is an early riser, so most of the time, he’s the one who wakes us up. I am not an early riser, but because he needs care, his father wakes up with him, and together, they have breakfast. After breakfast, we clean up and prepare the children for learning, which begins at 9am. Our children are homeschooled. We have a tutor that comes in to teach them between 9am to 12noon. Munene is progressing well. He reads well, and his comprehension in English has improved.

I'm employed, which means I work from 8am to 4pm, but thankfully, I work from home, therefore I am able to supervise my children. 

There are times when, during a meeting or on a work call, Munene comes in and interrupts me, but I am fortunate to have an employer and colleagues who are understanding, so whenever there is that interruption, I will introduce him, have him say hello before asking him to leave to allow me to finish my meeting. If I have lots of work or meetings that cannot afford interruption, I will ask his siblings to watch him and keep reminding him what he is supposed to do.

In the afternoon, we release the tutor as we prepare to take lunch. After lunch, the children are allowed to indulge in activities they love doing. For instance, they love cooking, Munene included. He calls himself chef Munene, together with his sisters, they bake cookies, which they sometimes sell to friends and relatives.

We allow them screen-time, but we try to monitor their activities on the phone to ensure what they are doing is productive. For example, Munene has access to learning apps, even though once in a while, he plays fun games on the phone.

In the evening, I usually give him a bath, but if I am not around, his sisters, Wangari, 13, and Muthoni, 11, bathe him. I am happy they're willing to be part of training him to become more independent, therefore once in a while, instead of bathing him, they show him how to do it on his own. Before bedtime, we all read a book - Munene reads as little or as much as he can. After that, we pray together. He has a prayer book which he reads before we all go to sleep.

We have not been in a rush to take him to school because our focus has been on teaching him how to communicate. We took him for speech therapy so that when he went to school, he would be able to communicate with other children. We felt he would be ready to join school when he turned five, but then we decided to homeschool him having noticed that our education system piled children with special needs together. You will find a child with autism in the same class with another with Down syndrome, yet each have very different special needs.

Children with Down syndrome copy what others are doing, therefore we decided to have him learn from his sisters by emulating them. As for the girls, we felt their extracurricular interests were not being nurtured in school. 

For instance, they are good swimmers, but that wasn’t being brought out. We wanted them trained more, and we thought it would be even better to also include Munene. When we started looking for a tutor, we weren’t searching for a special needs teacher, because the teacher would be teaching our three children. We needed someone with the heart of taking care of our child, because I know of many who view special needs training as simply a career, or purely for pay.

The reason we settled for this tutor was because she had been a shadow teacher to a child with autism, and for me that was an advantage because it was an indication that she had a heart for children with special needs. I, however, made it clear that I didn’t want Munene to be given special treatment, that he needed to be disciplined like his siblings.

Down syndrome comes with numerous medical issues, but thankfully, Munene has been fortunate because he doesn’t have medical challenges. We did a lot of occupational therapy in the early days, where he worked with a therapist thrice a week. He doesn’t need it now because he’s stable and can walk.

He also worked with a speech therapist, now, we’ve reached that point where all he needs more is exposure, taking him out there and letting him integrate with other children so that he can enhance his communication skills. We talk to him a lot and correct him. For instance, he might say a word but mispronounce it, in such a case, we correct him persistently and consistently until he finally says it correctly.

Munene feeds himself, but not consistently, and to help him, we remind him to take a bite and swallow. He also has to be reminded to use the toilet. He is toilet trained, but if he’s not reminded to relieve himself, he can end up holding it an entire day.

His biggest challenge is being understood. As caregivers, we are often tasked with trying to understand him. For instance, he will say something that we don't understand, and have to ask him what he means, or ask him to spell it, or show it. His personality is also of concern to us. It is said that children with Down syndrome are usually very happy, but the truth is that they have varied emotions just like everyone else, only that this doesn’t clearly manifest.

For instance, someone could wrong Munene, but the next minute, he will hug that person. Making friends is also a challenge. He’s been forced to socialise with his siblings’ friends. I’m a very big advocate of inclusion, therefore he goes wherever we are going and interacts with whoever we are interacting with. For him to make his own friends, we have had to deliberately reach out to other parents and educate other children so that they can understand his situation and be patient with him.

We created this atmosphere of inclusion and understanding right from the start. He was four months old when we broke the news about our son’s condition to our extended families.

Questions such as, why isn’t he stable? Why can’t he sit? Is it your milk? Are you eating?,  and many others made our decision to open up even more relevant. At first, our announcement was greeted with shock, and some of our relatives even shed tears. We gave everyone a period to mourn, but after that, we made it firm and clear that we didn’t want tears and pity, or Munene to be given special treatment, because that wasn’t going to help him thrive.

Our relatives have been supportive, and in return, we inform them of the progress he’s making. For instance, I will take a video of him reading a book and share it with friends and family via WhatsApp to show them the milestones he’s made. 

By doing this, we have included them in Munene’s life, and I know that in case me or his father or siblings are not nearby, he will need help from extended family and friends, and so they need to be prepared to handle him like any other child.

But however prepared we have been, we sometimes get anxious and wonder what the future holds for our son. In such moments, we remind ourselves how fortunate we are because we haven’t been subjected to any stigma in our circles. I’m saying this because I’ve heard heart-rending stories from other parents raising children with Down syndrome.

I am a co-founder of T21 Families Support Organization (T21 FSO), which advocates, educates and creates awareness about Down syndrome. Here, there are mothers who were told that they were bewitched, or that their children’s condition was because their husbands had not paid dowry.

Mother’s with special needs children are often abandoned by their husbands and left to care for their child alone. The man taking off often triggers the stigma they go through.

Things have been different for us because Munene’s father has taken the mantle in terms of advocacy. For instance, he ensures that fathers in T21 support group are active, especially in their WhatsApp group.

I want to encourage couples with special needs children that though it is hard initially, it gets easier with time. The easier we make it for our children, the easier it gets for the world to accept our children and help them thrive.

Also, if we hide them and refuse to expose them to other people, we are keeping them away from this beautiful world that is supposed to play a part in their development.

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