My son was born prematurely at 24 weeks weighing only 830 grams. He stayed in the hospital for five months after birth. In his entire hospital stay, he needed support with breathing. He stayed on oxygen support in an incubator. He only came off oxygen two days before his discharge date. The doctors warned me that he was likely to develop some learning difficulties. I was reluctant to hear that my son may potentially suffer from developmental issues because my mind was still processing the trauma and unpredictability of nursing a premature child. I just wanted to enjoy my son's health and celebrate his strength and will to live. The doctors did not think he would survive because he was born so prematurely. However, my son exceeded the doctor's expectations and survived.
Diagnosis & Symptoms
Once discharged, he was developing and meeting his milestones as expected. However, when he turned 18 months, l observed that there were certain behaviours that he was exhibiting that showed signs of potential learning difficulties. He would be walking in circles or switching lights on and off for long periods. Apart from exhibiting behaviours that were concerning to me, he had started saying words. He called me mama and pronounced his sister's name with ease. When his behavioural patterns worsened, he suddenly lost the ability to communicate verbally regressed to baby babble talk and sounds.
I took him to see the GP and discussed his behaviour and my concerns. The GP referred him to the child and Family Service. The Child and Family service assessed my son's behaviour and diagnosed him with Autism. Once my son was diagnosed with Autism, they allocated a Child practitioner. The Child Practitioner helped me to come to terms with his Autistic diagnosis. The practitioner gave me resourceful information to help my son's wellbeing and development.
As l was coming to terms with his Autism diagnosis, he started being very hyperactive, struggled with concentration and staying still. I felt devastated to find out that he also had Attention Deficit Hyperactive Disorder (ADHD) I was shocked to learn that he has another behavioural issue on top of his Autism. I was in denial l did not want to accept the diagnosis. I would argue and try to justify his behaviour giving the reason being he was born too premature. In my mind, l kept hoping that things would get better and that the doctors were wrong.
My son’s social skills were not like any other child of his age. He did not understand taking turns and he found it hard to interact with other children in the playground. He had difficulty falling asleep and remaining calm enough to sleep through the night. He also started struggling with his speech and pronouncing words. His form of communication mainly consisted of screams, baby babble and pointing to objects.
A mother’s struggle
I used to cry myself to sleep because l was blaming myself for my son's condition. I had a difficult pregnancy as a single mom because l also had to provide for my daughter, so l kept working throughout most of my pregnancy. I thought maybe if I had taken some time off and looked after my physical and mental health, he could not have been born too premature he would not have been diagnosed with Autism. My mind spiraled with guilt, all these different routes and scenarios l could have taken.
When my son started going to school, more helpful resources became available to him. This was a God send. My son has a school place in a special needs school that provides CAMHS, speech and language lessons. Furthermore, I also get short break hours and overnight respite every other week. and this gives me an opportunity to rest and have some time to myself.
My worries
As he is getting older I worry about if I would be able to continue looking after him. I am getting older as well and my energy levels are decreasing. I would never want to put him in care.
I worry about when I die what will happen to him.
I also worry about his future how it is going to be like.
At the moment I am receiving all the support I need with my son,
My worry is when he turns 18; I have seen a lot of parents finding it difficult to find colleges that would cater for their children.
I would want that transition to be smooth for my son and to be placed in a college or center close to me.
What motivates me?
Looking at my son now I am so proud of him. He has come a long way and has achieved a lot, and is yet to achieve more. I never gave up on my son, I see him as a blessing and as someone who can be someone in life. I am aware he will continue to need a lot of support. He is non-verbal but he communicates using pecs, pulling people towards objects. My son has a huge personality and a great sense of humour. When he is away from home we greatly miss him. As he is getting older, he is becoming much calmer. I hope for him to have an independent life. He is interested in cooking and computers. Also despite the challenges I have continued working which has helped me with my mental wellbeing . My daughter is my great motivator. She always sees the best in everything and supports his brother in every way she can.
My advice to other parents
Having a child with a disability is a challenge, you have your ups and downs.
My advice is try to get a lot of support for your child
Seek help from professionals if your child’s behaviour becomes challenging
Join parent groups, it helps when you all share ideas
Look after yourself, find something that interests you or motivates you.
Don’t neglect your social life
Written by Yvonne Maredza - Mother of 2 children, Advocate of her Son who has Autism.