A mother’s 5-year Down syndrome journey

I have been contributing to a weekly disability column in the Observer on Sunday since October 2016. What a journey it has been! I have learned quite a lot about disabilities, attitudes around them, and their impact on families. At some point I felt it was better to have a child with Down syndrome than one with autism. I believed people with Down syndrome were generally higher functioning that those with autism.  Now I stand corrected. Down syndrome also has its own challenges that aren't present in autism - persistent  health problems for instance. Although the newspaper column was just labour of love, it was gratifying. I shall be stopping my contribution end of April, but will continue posting on my blog when i come across stories. The lack of awareness on cognitive disabilities in society makes  me realise that there is still a lot that needs to be said. Below is a story I wrote to commemorate World Down Syndrome Awareness Day. I'm grateful to Buhle for sharing.  

People with Down Syndrome
Picture sourced from the internet

The date (3/21 – month and day) was specifically chosen to symbolize a third copy of the 21^st chromosome in people with Down syndrome. As with raising most children with disabilities, it is a great challenge to raise a child with Down syndrome. It is an arduous journey usually characterized by frequent health problems and dealing with stigmatization in society.

Buhle* came forward to share her story about how she found out that her child, Bongani*, had Down syndrome and her five-year journey caring for him.  Following a normal pregnancy and normal delivery, her baby developed jaundice. It worsened as he could neither open his eyes nor breastfeed anymore. After his admission in hospital, the pediatrician said the baby’s features made him suspect he had Down syndrome, and  went on to talk about chromosomes, which Buhle did not understand much and had to read up on Google afterwards. “His neck muscles were very weak and his head dangled loosely from his head and I was worried he would never be able to hold his head up or sit on his own,” she said.

Buhle was advised to take Bongani to a lab to test for Down syndrome. After two weeks, the rug was pulled from beneath her feet when results confirmed that Bongani indeed had Down syndrome. She was advised to take him for physiotherapy. Buhle said she did not understand how the therapy would help her son and wept with very strong doubts that anything would help him.

Bongani was also found to have a hole in his heart and had to be taken to a cardiologist. The cardiologist said the hole was not very huge and if he got to two years before it closed by itself, surgery would be needed. “I cried a lot and asked God why this was happening to me yet I had had my baby at 27. I had been aware that children with Down syndrome usually came to women who had babies when they were older,” said Buhle.  Thankfully, the hole closed. Bongani was susceptible to colds and pneumonia, but following the closing of the hole in his heart, the ailments also stopped. However, when it gets cold, he still comes down with a cold but antibiotics usually sort him out in no time. Every time he got a cold, he would need to be admitted and that happened countless times. The improvement took a heavy weight off Buhle and her husband’s shoulders.

Adversity usually results in one of two reactions – devout faith in God, believing that He will heal your child against all odds, or distancing yourself from Him, bitter that He allowed such a thing to happen on his watch. Buhle said her faith in God never waned because she had adequate support from her mother, who had walked an almost similar path caring for a daughter with cerebral palsy, and her very caring husband. “My mother prayed with me, accepted the situation as it was, and smothered the baby with love,” Buhle said. She added that Bongani’s paediatrician has been another pillar of strength in her life, together with the physiotherapists who have worked really hard to assist him.

Five years down the line, Bongani’s condition has greatly improved. He is now learning to walk and still goes for physiotherapy once a week. Although he cannot talk yet, Buhle says he can hear and understand everything. He is still being potty trained, and Buhle and her husband have trained him to have bowel movement in the morning in his potty, and then wear a diaper to avoid wetting himself.

Bongani’s doctor recommended that he enrolled at a crèche with typical children and that’s where the battle began. Three crèches turned him away as they said they were not equipped to deal with Down syndrome. “I was really hurt. No one chooses to be in this situation, but God gave me this gift. I somehow expected society to understand that and accept my baby too,” said Buhle. The toilet problems have turned out to be the reason why some pre-schools will not accept him. Although some of them take 6-month-old babies in diapers, they are not prepared to take care of a 5-year-old wearing diapers as well. Bongani eventually got accepted at a crèche based at church premises where he is very happy, which has also put smiles on his parents’ faces.   

Bongani’s brother, Sicelo, occasionally asks when Bongani is going to walk. Buhle said she simply told him that she was taking him for physiotherapy in order to make that happen. “I feel he is too young to grasp everything now. I will tell him everything when he is a bit grown up, but I think he has seen that our baby is different from others.” Bongani’s personality is starting to take shape. His mother says he is ever-smiling and is besotted with his father. He also loves to imitate everything his 9-year-old brother does and even has his own favourite cartoon series, Tom and Jerry. Buhle said all she wishes for her son is to be an intelligent big man, able to do everything on his own rather than be dependent on his parents or other people. “My biggest fear is that society does not know much about Down syndrome. I am scared that my son will be stigmatized and that will deal his self-esteem a big blow. I want to be an ambassador to inform society that people with Down syndrome are also equal human beings despite their condition, and they must be accepted and treated like everybody else,” said Buhle.

Many parents of children born with cognitive disabilities, especially of a genetic nature, are usually wary of having more children. Buhle is however undeterred. “I want a baby girl next so that she can play with her big brother. Of course, I am afraid of history repeating itself, but my trust in God is stronger,” she said. 

A mom shares her autism story

Below is a story that a friend generously shared with me about raising her autistic son in the UK. I'm really glad for her because being in the First World has plenty of advantages that parents in Swaziland and the rest of Africa can only dream of, although the personal and societal challenges remain the same . April 2 is World Autism Awareness Day. I shall be sharing more stories on the condition from mothers in my circle for the rest of the month.

I have a 3 years 5 months old son, who was diagnosed with Autistic Spectrum disorder. At birth my son appeared normal and I never thought he had any disability, but as he grew older I started noticing things that weren’t normal. I would breastfeed and talk to him, and he would not give me any eye contact like any other child would do under the same circumstances. Often my son appeared angry, scratching and kicking, especially when distracted from what he was focusing on and he would do things repeatedly and be fixated. He started saying a few words like ‘mama’ and ‘dada’ at 9 months, then lost his speech completely by the time he turned 16 months. I liaised with the GP for advice and was referred to a Speech and Language Therapist. She stated that my son had delayed language development in conjunction with social interaction difficulties. The Speech and Language Therapist also referred my son to different health professionals for further assessment and intervention. He had multi-disciplinary assessments and therapies for almost a year before he was given the autism diagnosis.

As parents we did realise that something was not right about our son and even got to the point of asking the paediatrician if he was autistic. However, because they were still conducting assessments, we had to wait until they had done all the necessary investigations before they could actually diagnose. I dreaded the day when we were to going for the feedback, and when we were told by the Child Development Team that our son was autistic, first I was shocked with the reality, then got scared and emotional as I was wondering if we would be able to meet his special needs as a family. I cried a lot and my husband was with me all the way and always giving me reassurance that we would get through this together and that we need to be strong for our son.

As a family we face the daily challenges that comes with this condition:

·         We have to deal with the frustration and anger that my son goes through when he is unable to communicate or express himself to other people and/ or when he is in an unfamiliar environment or surrounded by strangers.

·         We have to deal with the rejection and the comments we get in some public places such as play areas, schools, church, and restaurants because of my son’s behaviour.

·         The anxiety and fear of the unknown due to the unpredictable behaviour. As a family we try and keep to ourselves as much as we can to avoid the comments about our son’s behaviour from other people.

·         Working less shifts/ hours between us as parents because one of us has to mind our son to try and avoid involving strangers for childcare, therefore putting financial strain on the family.

·         Exhaustion due to everyone trying to work tireless towards supporting my son achieve certain goals and meet his needs, for example, making sure that he goes for all appointments and therapies, and family involvement in recommended therapies.

I am a mother of 2 boys and they love each other. However my younger son’s condition has affected my older boy indirectly. Most of the times he protects his brother and understands that he cannot talk for himself verbally but he doesn’t understand why he behaves the way he does towards him (scratching and kicking him) and still be expected to understand the situation. He also doesn’t understand why we cannot go to public places as a family more often now & why he cannot go to a friend’s party with his brother, even though we try to explain to him at his level of understanding. When my son was 22 months we visited home (Swaziland) from United Kingdom and he was very unsettled and crying the whole journey, not allowing any of our excited family members to touch him when we were home and the whole family ended up not enjoying the holiday and have not visited again since. We have travelled short journeys around Europe but we use our own car, which is familiar to him and/ or a Ferry because we know he loves to see the water and run around within the ship. As far as activities are concerned we ensure that we take him to places where he can jump, climb, run and play independently and freely but still be safe. Lately we have been introduced to a bouncing church, for families of children with special needs and at home we try and provide as many activities as we can to keep him occupied.

My son is unable to communicate verbally at present and tends to get frustrated when he cannot express himself effectively, he doesn’t like being in unfamiliar surroundings and around strangers, he doesn’t like sharing or taking turns and gets fixated to certain routines and objects. He would throw himself on the floor, kick, hit, scratch and even bang his head to show his frustration. I consider my son as a strong and intelligent boy, he is very good at solving puzzles, technology such as playing games independently on the computer, iPhone or tablet. He is also good at playing musical instruments, singing and dancing, likes watching TV and certain movies. He loves big colourful and musical toys, trains and cars, also likes outdoor play with sand, water, trampolines and climbing. My son is a lot calmer now and progressing positively but I fear about his future and ask myself a lot of questions, however I still have hopes for him; to live an independent life without relying on other people, to be able to communicate verbally and understand the meaning of the words he says and to understand, interact and connect with the world around him instead of living in his own bubble. What breaks my heart about this condition is to see my son suffer and be helpless, not being able to do anything for him. It hurts to hear people passing comments about my son’s behaviour without asking what is causing the so called ‘bad behaviour’. The worst thing said about my son was when we were in a taxi and it was his first time being in another car apart from his dad’s car, so my son was kicking, screaming and hitting out. Accidentally he kicked the front seat and the taxi driver shouted at my son and even said he had never seen such a child so spoilt like my son and if he breaks anything I’ll pay for it, so I had to drop off before the situation got worse and before I got to my destination.

It is not very easy to live with a child who is autistic because some people in the community will not understand why your child acts and behave the way he does, however there is lots of support within the community as the local authority does have plans and provisions put in place for children with special needs and disabilities, starting from suitable play areas, financial support to cater for disability living, funding educational and health needs, and getting support from allocated keyworker and support groups. My strength comes from the reassurance and support I get from my immediate and extended families, friends and support groups. My son is not prescribed any medication at present and I so wish to keep it that way for as long as he is manageable without. My belief about medicating is that it does help to a certain extent, however there is lots of fatal side effects that comes with the medication, therefore should be given as a last resort/ option. Having a son with autism has taught me to accept situations as they are, not to give up but to keep on trying and to be strong for the sake of my child. I have also learnt not to judge people by their behaviour but to try and find out what is the real problem behind that person’s behaviour. I believe that my Son is not aware that he is different from other kids at the moment as he is still young and does not understand other people’s comments about him. I hate to hear people saying my son is spoilt and that is why he behaves the way he does. When there is something that brings a smile on my face, is my child’s obsession with cleanliness and tidying up, he tends to pick up even the tiniest dirt on the floor and puts it on the bin, and he would wipe his mouth after every spoon feed.

Both myself and my husband are nurses by profession and have nursed clients with autism at some point in time, however it becomes different when you have to manage your own child with autism. In the past I have had two of my closest friends having children with autism but I never thought that one day I’ll have my own child who is autistic, and have now realised that I was not supportive enough to them as I didn’t know what they were going through. Our profession has helped us a lot in managing our Son’s condition and also having friends who are going through the same situation helps, as we always refer to them and get all the support. It’s true that with our families and friends living very far, we can’t get physical support from them but with the improved technology we always have people to talk too and get emotional support. The advantage being in UK, is that the local authority ensures that all children with special needs or disabilities are assessed as early as possible and have education and health care plan in place, provisions and budget made according to the child’s needs and requirements, therefore as a parent you don’t have to be stressed about finances as far as therapies/ health and education is concerned. My message to other families with autistic children is always to think positively, follow your own instincts and never ever give up hope. And also not to forget that you’re not alone in this journey but there are other parents who are going through what you’re going through.