Delayed milestones: why societal attitudes worsen situations for children and their parents

His attention is almost zero; actually, he comes out as a snob. Those were the words that Gladys Wanjiku Geita used to summarize the condition that has caused her child’s delayed milestones.

Developmental milestones by definition are a set of functional age-specific skills or tasks, which most children are able to do at a certain age range. A delay then comes in when a child does not reach such milestone by the upper range of normal.

Just like any other parent, Gladys thought that it was guaranteed that her child will go through the milestones on time, but this was not the case. Just as with any other parent, delayed milestones for Gladys came with a cocktail of feelings ranging from confusion, disbelief and a fear of the unknown.

Born on July 23, 2015, Mark Geita achieved most of his milestones on time: stood at eight months and walked without support before he was two years old. But the joy of this development was rudely cut short when Gladys realized that little handsome Mark could not utter simple words like mum and baba as any ‘normal’ child would and began to get concerned. He would also ignore you when talked to him.

Master Mark Geita

“Initially, I thought that was his personality but would soon realise that there was almost zero eye contact. He pays attention to what he wants…like his favourite cartoon, animals, insects, toy etc,” said Gladys

“He can focus on something over half an hour I think to put it well he has attention deficit…  and almost two years 11 months later, there is zero speech, she added

After observing her child for some time, Gladys decided to enroll Mark in kindergarten at two and a half years despite the new policy of children joining the school at four years. This was in an effort to at least see if there would be an improvement on socialisation as well as potty training (this hasn’t been achieved either). Well, it is his second term and nothing much has happened.

“I attended their sports day and I could tell something is off with my child. The kids love him but he doesn’t love them back as would be expected and he somehow lives in his own world. When I gathered courage I visited an Ear Nose and Throat (ENT) clinic,” said Gladys

At the clinic, little Mark was diagnosed with sensorineural hearing loss and enlarged adenoids.

Mark with his mother and sister during happy times

“He was in the theatre this month for adenoidectomy and tonsillectomy. Three doctors have already told me he is autistic but Iam yet to get a confirmatory diagnosis. Which am planning to do after this procedure recovery,” she said

The journey towards wellness for Mark has not been easy and has also robbed the family coffers of a pretty penny that Gladys was not willing to disclose. As if that was not enough, she has to deal with friends, family, church members, neighbours and acquaintances who have an opinion on the condition of her son.

“Emotionally, it has been very tough for me….when you have a special child it is like a wound that never heals..and especially when people think you are the cause or your family lineage is what is causing his predicament.”

“People did not understand. They blamed me that he couldn’t talk because I don’t talk to him. How they knew this is beyond me because no one has ever asked me how it all started.  Mark is also hyperactive and the community around thinks it is because  ‘huwa namfungia’ (she never lets him leave the house),” she said

There is also, of course, our African part that believes family issues such as curses and black magic are involved.

Mark having a good time in the kitchen with mum.

It is painful for any mother and one would assume and it must be strange for little Mark as well as people keep staring at him the whole day and talking about him and his condition. It is, however, not all doom and gloom because, despite his condition, Mark is well loved in some quarters. At school, he is always surrounded although he barely acknowledges their presence.

Despite all that is going on in his life, Mark is also exceptionally good at skating. “My son began skating at 2 and a half years old. He is the youngest member of the Nanyuki skaters club. It is things like that that really encourage me. Much as it’s hard to accept my son is different I know I will get stronger with time. And deep down in my heart I know he is intelligent and given the right training and exposure, he will be everything he was meant to be,” said the dotting mum

In her message to the community, Gladys said, “People should be kind to parents and/with kids with delayed milestones. Avoid judgment of what you don’t know, seek to understand… to listen rather than be quick to judge. It can happen to anyone. I didn’t apply to experience this nor was I prepared but it is here with me,” said Gladys

“I have raised this child to be the best he can be; given him the best. I had hoped by now he would be relatively independent but he is not… And it is not easy,” she added

Gladys cannot leave Mark with anyone apart from his sister since he is oblivious of the danger.

“When I am in a lot of pain I remind myself that even if all is not well at least he can skate, feed himself and he makes us very happy. He has a purpose in life and will talk coherently one day,” she said with conviction.

Gladys plans to take little Mark for speech therapy. Whatever he is interested in, I will give him. I have seen prominent people who have various conditions and have managed because they were accepted and loved at home and shown they can

If I do not love my son, who will?

Little Mark showing off his skating moves

Gladys is not alone in this as Maryanne Wacera whose child has also experienced delayed milestones says that it is really hard dealing with people’s comments, stares, and expectations. “You either get the blame for your child’s delays or receive well-intentioned but misleading advice.”

“If you’re a mum like me going through this, don’t give up. Whatever you need to do, and are doing to help your baby catch up, do it. If you’re feeling concerned about a delayed milestone, seek professional help. I know many children catch up on their own time, but others need help to do so. It’s best to do this while they’re still young,” said Wacera

Another Parent, Jojo Njoroge, says, “I wish people would understand how hard it is and just cut the parents some slack. I particularly dislike that question of whom you are seeing (referencing a doctor) without any background.”

Apart from the community at home that needs to change, the attitude of some school teachers needs to change as well. Some have been accused by some parents of mishandling children with delayed milestones. If a teacher notes that something is amiss with the behaviour of the child they can call in an expert or recommend that the child gets help from an expert.

According to the Ask your doc.co.ke page paediatricians during their child healthcare checks normally use milestones in order to see how the child is developing. Each milestone may have a certain age level, but the age at which each child reaches this milestone varies. When we talk about normal development, we are talking about developing skills like:

  • Gross motor skills including using a large group of muscles to sit, stand, walk, run, keeping balance and even changing positions.
  • Fine motor skills which involve using hands to be able to do things such as eat, draw, dress, play, and write.
  • Language that includes speaking, using body language and gestures communicating and understanding what other people say
  • The cognitive function that involves thinking skills which include learning, understanding, problem-solving, reasoning and remembering.
  • Social skills which include interacting with other children, having relationships with the family, friends, and teachers, and responding to the feelings of others.

Eunice Mbugua, a Pediatric Nurse with years of experience in growth monitoring and practising at the Mombasa hospital attributes some of the developmental delays in Kenya to early childhood illnesses such as pneumonia, malnutrition, adverse, stressful environments, and common childhood injuries such as falls, which at times may go unnoticed. Premature births are also a known cause of developmental delays.

According to the World Health Organization, four risk factors which affect at least 20-25% of children in developing countries affecting childhood development include:

  • Inadequate stimulation or learning opportunities
  • iron deficiency anaemia and iodine deficiency.

If you have been feeling alone in this journey then you should know that there are many parents out there who are going through the same thing and can even request them for a support group. Forget about what you hear from the community at large and protect your child from negative sentiments as much as you can.

The development of a child can only be followed through by a parent-healthcare professional partnership and in this regard, you can get the best help in form of therapies from hospitals such as Gertrude’s Children Hospital and Kenyatta National Hospital among others.

 

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2 comments

  1. Anne Nyamitta Reply

    Please link Ms Geita to Jaki Mathaga who has a special child and heads one of the Autistic programmes in the country. Just search Jaki Mathaga. Bless you

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