Autism advocate and Certified QST Therapist Sazini Nzula PhD shares her experience of bringing up a child with special needs
I gave birth to my son in 2006 but it wasn’t until he was one and a half years old that my husband and I realized that there were some issues regarding his development. He was two and a half years old when we got the official diagnosis that he was autistic.
Realizing that my son had special needs left me feeling bewildered, overwhelmed and desperate. I felt as though I had just entered a parallel universe in which everything was completely alien to me. I had no idea where I was. I was lost and was suffocating but more than anything else, I felt disempowered.
I didn’t know much about autism and was obliged to defer to the “experts” for support and guidance. Although they were wonderful and very supportive, what I really needed was to feel empowered enough to deal with my new circumstances myself.
I wanted to fully take care of my son, parent him in the best way possible and to nurture and enhance his full potential. With hindsight, I now appreciate that my initial reaction was not too dissimilar to that of other parents when they first come to terms with the implications of having a special needs child.
Why do special needs parents need to be empowered?
Because not only are they responsible for their kids, they are ultimately the only ones who will be there for the long haul.
The five steps listed below helped me revive my confidence in facing up to my new circumstances
- Get Informed
You are the expert on your child. It may not feel like that at the beginning but good quality information and skills will help you believe this again.Being well-informed will stop you from being totally dependent on professionals. While they may be really good at their work, they can’t possibly know your child as well as you.
Being knowledgeable will help you to distinguish between your child and your child’s diagnosis. Not everything your child does is related to their diagnosis.
Being informed about your child’s condition is the best way for you to be their advocate. The right knowledge and skills will come handy in those tricky situations when you have to stand up to well-meaning but misinformed family members.
- Get support
Although it may feel like it, you are not alone. Get connected with other special needs parents in your community, either through social media or local support groups. People in support groups understand what you are going through, you don’t need to explain it to them.
I have also found that Support groups are an invaluable source of information, and can save you hours of lonely research. There are also many friendships waiting to be created in what will become your special needs family. Just go out there and meet them.
- Take care of yourself
In the early days most parents wake up with their child’s condition on their mind. It stays with them during the day and it’s the last thing they think of before they fall asleep. Consequently, they barely have the time or energy for anything else; least of all for themselves.
Given that caring for a child with special needs is stressful and exhausting, parents need to make concerted efforts to preserve their own wellbeing and prevent burnout, which can lead to physical, emotional and psychological exhaustion.
Even though you feel like you have no time, energy, the will or money to spend on yourself, it is crucial that you maintain that balance. Seize any opportunity, no matter how small, to decrease stress. Bear in mind that it is only when you have enough rest, sleep and exercise that you will be able to adequately provide for your child and the rest of the family.
Although striking this balance is generally difficult for all parents of children with special needs, I think it is particularly so for African parents.
Both African men and women are raised with the idea that they have to be “strong” and show no weakness under any circumstances. That kind of mindset that makes it very difficult for us to admit that we are tired and need time to rest, even from household chores and looking after our own children. We must learn to accept the logic that taking time to recharge our batteries means that we emerge stronger and in a better position to take care of our loved ones.
It took many years before I resorted back to exercising regularly after the birth of my son. I started by going for long walks, before I started jogging. One particularly stressful day, I went jogging in the middle of winter when the temperature registered -16℃. I also resumed my yoga and meditation lessons and took up painting. All these activities helped to nourish my soul and give me some well needed respite.
- Teach your child Life Skills
It’s important to understand that no matter what your child’s special needs are, they will still need some basic life skills. The diagnosis or special need that they have simply serves to inform how we as parents teach them those skills.
Too often parents of children with special needs tend to do too much for them. By so doing, you inadvertently rob your child of an opportunity to learn skills which will be crucial at some stage in their lives, such as preparing meals, cleaning up, or even behaving appropriately with their peer group and adults.
By not teaching your autistic child as much as they can handle, you are putting them at a disadvantage and reducing their chances of leading a happy and fulfilled adult life.
- Do everything you always wanted for your family
Your child may have special needs but you can still do everything you always wanted for yourself and your family. Yes it’s true that you will have to adapt but that doesn’t mean you have to stop. Your family life may not be as perfect as you would have liked it to be, but it’s up to you to live it as best as you can.
Scheduling some fun time with your autistic child and the rest of the family participating will go a long way in normalizing your family life.
As a parent of a child with special needs, you need to feel capable and in charge of your child’s future. If you are not, you have to fight to get your power back. You may even have to fight yourself but ultimately, you will prevail. You must!