Michael and Desirae Pillay
I am an Assistive Technology Advisor for Inclusive Solutions, Blogger (A Million Beautiful Pieces) and Motivational Speaker. I won the SAMommyBloggers Most Inspirational Blogger Award 2017.
Michael is a Resources Manager.
Age of parents:
Age: 21 years old.
Is this your only child? No. Talisa who is 15 years old and Eli Michael who is 10 years old.
Diagnosis of child: Savannah is an autistic person who also has cerebral palsy. She had a scoliosis correction operation when she was twelve years old and was recently diagnosed with a spinal cord regression. Scoliosis is a curvature of the spine which is common in people with cerebral palsy. She was diagnosed with spinal cord problems which is causing intermittent physical regression and pain.
What are the biggest challenges facing your child on a daily basis?
Her biggest challenge right now is that she is lonely and unmotivated. Savannah is now a young adult and due to her complex needs, it is difficult to commit to her attending a day facility. She fatigues easily when the physical and mental demands are too much for her, which means sitting in the morning traffic in Johannesburg to travel to a day facility is exhausting for her. Although we have a wide circle of friends and family, people are busy and often forget about Savannah until we throw a party or arrange a get together. She is aware that she is a person with a disability and feels the impact of that now as she gets older. She relies on her dad, her granny and myself for her entertainment which isn’t always fun and cool for her.
What are the happiest moments you have with your child on a daily basis?
Savannah has a lovely way of enjoying music which she does everyday. She makes gleeful,happy sounds when listening to her favourite tracks. Our entire family enjoy how she enjoys music. We often say, we would love to be in her head because that party must be awesome. She also has a great sense of humour and loves making us laugh.
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
I divorced her biological father when she was about a year old and that had nothing to do with her diagnosis. I married Michael when Savannah was five years old when I was still grappling to come to terms with her diagnosis. Michael chose to parent Savannah and legally adopted her which changes the dynamics quite a bit. I felt this happened to me and it was unfair to lay this on him, Michael felt differently, he wanted to be her dad in every sense of the word.
I learnt to be a better parent from Michael because he saw Savannah as just a little girl and not as a person with a disability. Yet, Savannah’s complex needs did affect our marriage. It took both of us a little while to learn to be as good spouses to each other as we were parents because we always put Savannah first. I guess that may seem like the right thing to do as parents but we also needed to be there for each other outside of being Savannah’s parents. As parents we don’t naturally have the vocabulary to explain the complex emotions that we feel nor the emotional strength to endure the highs and lows that seem to come in never ending waves. Michael and I promised each other to always be brave to speak our minds but we also had to learn to be patient with each other when we did that. Now, so many years later; making time for each other, prioritising each other even when Savannah or the other children need us is more instinctive and natural.
What has your child taught you about yourself, both positively and negatively?
My child has taught me that I am much stronger than I ever believed I could have been. I was a teenager when I fell pregnant with her and went through a marriage, divorce and the reality of her first diagnosis by the time I was 21 years old. I did not believe I would have survived anything like this, yet here I am not only having survived but now thriving. It is amazing and humbling to me that our story gives hope to so many families through my blog A Million beautiful Pieces
I think if I had to look at the negative aspects, I have been more sad than I admitted and yes, I have some regrets. There have been tough decisions I have made that I may not have made in different circumstances. Trying to build a family while being constantly exhausted, emotionally drained and lonely was unbelievably tough. I also struggled to accept that my choices in life were limited by being a parent of a child with a disability. I still have moments when I feel inadequate as a parent because I have been unable to ensure that
Savannah has everything she needs. Now, I find that I am in another strange reality as Savannah and I both learn to accept that our futures are bound to each other in a way most other mothers and children are not bound together. On that point, it is equally hard for her, a young adult as it is for me, her aging mother.
Are your family and friends supportive?
Yes and No. I have learnt that there are seasons for people. Different people have been supportive at different times. However, both Michael’s immediate family as well as my mother, my brother and his family, and a few members of my extended family have been there for us through all the seasons we have lived through. I count that as a huge blessing because I meet many parents who have no support at all.
Do you take time out, if so what do you do to relax?
I only started giving myself permission to take time out a few years ago. I have a small group of close friends and every so often we love to have dinner and go dancing. Music is a big party of our family life and dancing is something we enjoy together as well as alone when I just need to release some tension and get those endorphins flowing:). I have also entered the Tammy Taylor Mrs South Africa Women Empowerment programme to highlight the journey of families with adult children with disabilities and also to be an example to my other daughter Talisa. I want her to know that being a woman is also about being dynamic, diverse, and fun. I hope by giving myself permission to take care of myself first, both my daughters will learn this valuable lesson as they grow.
What has made the biggest difference to your child’s quality of life?
The biggest difference for us has been in working with a great team of professionals a few years ago who helped us to understand Savannah’s point of view. Often what we thought was best for Savannah was not important to her. Learning to see the world from her point of view helped us to make better decisions that gave her a better quality of life. In our case, accepting and supporting Savannah as a person with autism improved how we defined her quality of life. The second biggest difference was when we accepted that she was more independent using a wheelchair than leaning on me when she walked. That was hard for me to accept but she has been happier and enjoys doing things for herself when she is not in too much pain.
What is your dream for your child?
My dream is for Savannah is to see her excited and motivated again about life. She used to enjoy sending emails and messages to friends and family members and stopped doing that a few months ago. She lives with a great deal of pain and this has affected her motivation. I hope she finds her happy place again and that we can figure out how to help her deal with loneliness.