Living everyday as a miracle

When Nia Desanker prematurely gave birth to her beautiful daughter Nyasha at only 29 weeks, she did not know that God had just put her on a journey of intense testing, tears, miracles, strength and a motherly love that would enable her to discover light amid her darkness.

She shares her touching story of refusing to give up on Nyasha, who was diagnosed with autism in 2008, living with an autistic daughter in a country that does nothing much for sufferers and pushing to help Nyasha reach her full potential as a gifted and special child.

Great expectations

My name is Nia Desanker. I am 38 years old. Nyasha is my first and only child. I had her when my late husband John and I lived and worked in the UK, in 2005. Her pregnancy was normal, up until the 27th week scan revealed that she hadn’t been growing for five weeks.

It showed that her body had not been receiving sufficient amounts of oxygen and nutrients at all due to placenta insufficiency; the little that she was getting was going to her brain. I was hospitalised and closely monitored. They injected me with steroids, which would help her lungs develop so that she would not have difficulties in breathing when she was born.

On the 14th of September 2005, doctors discovered that nothing was going to the brain. They told me that Nyasha would have to be born the next morning, at 29 weeks, if she was to survive.

15-September, 2005

My daughter was born through a Caesarian section. I didn’t see her for the first two days, but she was very small and was kept in the high intensive care unit (ICU) of the neonatal ward. 

Because she had been fed through a tube for so long, she developed a sensitive gag reflex, which meant that she could gag or even vomit if anything solid went down her throat. Due to the complications she had, Nyasha was in and out hospital for the first year of her life.

Coping

I cried a lot during this time. As a pregnant mother, I never even looked at the premature baby clothes when I went shopping. No mother imagines that her baby might have something wrong. No one prepares for a disaster. It was a huge shock and I had no one to support me.

I had to leave my baby at the hospital every day and each time I went home at night I couldn’t sleep because my heart was with her.  For a while after she was born, I refused to name Nyasha because none of the names seemed appropriate to me.

When she moved from the high intensity to the low intensity ICU 10 days after her birth, I remembered a Shona workmate who had told me of the name Nyasha and its meaning; abundant grace and so I named my daughter.

A brief moment of sunshine

About a year after she was born, all of Nyasha’s problems, except the gag reflex, disappeared. She became a regular, normal bouncy baby. We finally began to enjoy her. I was ecstatic. But then, her father suffered a heart attack. He had to work less hours. I went back to work.

I was anxious at leaving the two of them alone and soon lost my ability to sleep. My doctor put me on sleeping pills and soon diagnosed me with depression and anxiety. They put me on antidepressants. At 20 months, our daughter started talking, crawling, standing and walking. She did the last three within three months!

Trouble in paradise

Soon after this, we started noticing strange things. For me, the light bulb went on when we took her to a wedding one day. There were about 10 children her age, all of them playing together and Nyasha was just standing at a corner, staring lifelessly at the wall.

As a mother, I knew something was wrong with her. Soon after that, she started running around the house on tiptoe. She would do that nonstop. Then, she would flap her hands back and forth or bang her head continuously on the wall, without appearing to feel any pain. Slowly, she stopped talking and started groaning.

We took her to the doctor and he asked us to record everything she did on video.  In June 2008, Nyasha received her diagnosis. She had autism spectrum disorders which is a pervasive developmental disorder characterised by impaired social interaction and communication, and by restricted and repetitive behaviour.

Different reactions

My late husband did not want to accept the diagnosis for a very long time. I quickly accepted the situation because I felt, as her mother, I was the only person who could fight to make things better for Nyasha and the sooner I did that, the better.

I spent hours on the computer, looking up autism, what it meant for our child and how we could make life better for her. We isolated ourselves because we didn’t want to answer questions from people who understood nothing about what we were going through.

By June 2008, John was on dialysis; he had suffered kidney failure and he soon stopped working. I had to work two jobs to keep the family afloat. My world was caving in around me. Even though I am and had been a born-again Christian for a long time, at this time I stopped praying because I felt God had tested me beyond what I could endure.

Enduring the pain

At around this time, a friend came to visit with her mother. The mother was a well-known woman of God. Without even telling her a word, she read through my situation. She said “Nia, you are depriving that child of the most important thing that you as a mother can give her; you are denying her prayer. You can do whatever you want with your life, but you’ve got to pray for Nyasha. She can’t do it on her own.”

That made me snap out of my prayer-free days. I looked up and ordered a truly inspirational book, Finding God in Autism, written by Kathy Medina, whose son was also diagnosed with autism. The book was a 40 day devotional publication with a verse for everyday that seemed to speak to me.

My husband and I prayed the devotional and praised God for the challenge he had given us. I asked God to give Nyasha the power of speech, even though the doctors said she might never speak properly.

Losing John

In September 2008, my husband passed on. Nyasha closed down and went into a world of her own. That is how people with autism deal with trauma. Another way in which they express distress is through smearing their faeces on a wall or on furniture. Nyasha did this twice after her father died.

Fortunately, with help from therapists, we blocked this behaviour. To date, she has never had a similar incident. I, on the other hand, was too distraught and had to be hospitalised for a month. In 2009, we had to come back to Malawi because my student visa would soon expire and I didn’t want to live in the UK illegally.

I applied for leave to remain because Malawi did not have facilities in dealing with autism and Nyasha’s development would be halted, but this was refused.

A day in our lives

Nyasha is on a gluten and dairy free diet as both of these makes her autism worse. I have to constantly watch her to make sure she doesn’t eat ice-cream, cakes, biscuits and a lot of other things which contain these two.

We buy gluten free bread and flour from Savers Choice, which is, amazingly, the only shop that makes it in Blantyre. They also stock Soy milk. None of this is cheap. People with autism love routine, and breaking that routine results in a big tantrum.

If, for example, you make her brush her teeth before washing her face, she will go berserk. People with autism do not produce adequate amounts of melatonin which our brain naturally produces to make us go to sleep. Nyasha takes melatonin every evening and as this is not readily available in Malawi, her uncle who lives in Germany sends it to us.

As with many children with autism, Nyasha struggles with coordination, which is a motor skill. She still runs like a toddler, falls and bumps into things often. Her biggest challenge though is coordination using her hands.

Her skills, using her hands, such as writing, eating, dressing and undressing herself, personal hygiene, are underdeveloped compared to those of other children her age. She was due to start occupational therapy a few months after we left the UK.  

She is an exceptionally gifted child though, who is very good with spellings. She has a photographic memory and is very sharp, so she has been put in a class for older children based on her abilities, not her age group.

Nowhere to turn

Early intervention is very important in people with autism. This is done by a group of therapists, one level at a time. Nyasha is able to do a lot more things than other kids with the same condition because she had this in the UK.

I accepted her condition very early and worked very hard to get her the help she needed. I wrote emails, made phone-calls and did my own research because there are some things that doctors don’t tell you unless you ask. Now, we are back in Malawi and she is not getting any of that help.

I hear St. Andrews has a programme for autistic children but I can’t afford to send her to such an expensive school. What pains me the most is the fact that my daughter is stuck in an environment that won’t enable her to reach her full potential. 

Putting Nyasha up for adoption

I am so desperate to get my daughter the services she needs, I have even tried to get her adopted by a good family in either US or UK because I know they have advanced facilities for helping autistic children.

If she was okay and they had the facilities to help her here, then that would not be a problem. It would absolutely kill me to lose her, but as her mother, I am looking at the long term. I can’t afford to be selfish and keep her to myself when doing so is detrimental to her.

I want her to grow up to have a normal life, be an independent human being.  Even if it means never having to see her again, knowing that she is getting the best and appropriate medical and educational care and other therapies that will enable her to fulfill her full potential, in a loving family environment, is the very best thing I can do for her right now. 

Anxiety…sleepless nights

I look at Nyasha and think I am the only parent she has. I am the only person who really cares about her. If something happened to me today, what would happen to my daughter? She would probably crawl into her shell and never come back out.

A lot of people in Malawi don’t know of or understand autism.  If I died, the people that would care about her would worry about what she is wearing or what she is eating and that’s it but they wouldn’t concern themselves with the little things such as routine, that give order and calm to Nyasha’s life. I worry so much that I don’t sleep very well.

My motivation

Despite all this, I have made the decision that I am not going to wallow in self-pity. I have learnt that it is important to accept where you are in life, after which you start seeing things differently. You start to see the beauty in those hardships you’ve endured.

If I could rewind time, I wouldn’t do it any differently, I wouldn’t change anything. This journey with Nyasha has made me stronger, made me appreciate motherhood even more. I believe in miracles. Some people never experience a miracle, some do once in their lifetimes but I have had the privilege of experiencing a miracle every day since 15 September 2005. That miracle is my daughter.

She was given 30% chances of survival when she was born at 29 weeks gestation weighing just 860g. She has defied many odds including an autism prognosis of never speaking or effectively communicating, never learning self help skills and many other nevers.

I never gave up on her or on belief that she may speak some day. Today she talks nonstop, she is exceptionally intelligent and interacts with her peers. If I had given up on her and tuned into the prognosis of doom, she would not be where she is today.

Advice to mothers with autistic children

Even though in Malawi, there is a blank wall in terms of getting help for children with this disorder, there are still some things you can do with your child within the home. Talk to your child every day, don’t treat them differently.

Spend time with your child; don’t leave all the work to nannies or relatives because they won’t feel your maternal love if you abandon them. If you have access to the Internet, go on-line and learn as much as you can on autism.

There are things, such as the gluten free diet, which is not approved of but is recommended by doctors, which really helps. Don’t give up on your child. If you don’t fight for them, who will?