For autism mothers

DR RADICA MAHASE

“There are days when I have no idea what I am doing. I look at my son having a meltdown and I feel hopeless. Did I do something to cause this meltdown? What did I miss? How can I be his mother and not know what to do?

Mia is the mother of a six-year-old boy who was recently diagnosed with autism. Even before her son’s diagnosis, she has been physically and emotionally stressed. Mia is not different from many other mothers whose children have been diagnosed with autism spectrum disorder.

Research has shown that parenting a child with a special need or any disability can have a significant impact on parents’ mental health. According to one study by Crenguta Oprea and Andreea Stan at the Psychology Department, University of Pitesti, “Being a parent is a difficult task. Being the parent of a child with autism is a more difficult job and a challenge. Researchers found that mothers of children with autism had higher levels of parenting-related stress.” In their research, Oprea and Stan found that the majority of mothers do not see any positive aspect to their child’s diagnosis; mothers felt more judged and condemned by society; and most of them developed a sense of hope and trust in God.

Another mother, Debra, who has a ten-year-old daughter on the spectrum stated, “I felt cheated. When I was pregnant, I did everything that I was supposed to. I ate healthy food, I took my prenatal vitamins, I did my yoga, I did everything that I needed to so my baby will be healthy. When we started to see signs of developmental delays, we were shocked. We didn’t see it coming. My husband blamed me for it. He said that I must have done something wrong.”

Mia said that her fears are grounded in the fact that she feels helpless. “I just feel like I am in this alone, trying to figure it out on my own. Even with my husband and two older kids in the house, helping out, I feel like this is my fight. That I am the one who gave birth to this child and therefore I am the reason for his autism. Deep down I know that I shouldn’t put all the blame on myself but I still feel like I could have done something more, that I missed something.”

Maureen Bennie, writer and founder of the Autism Awareness Centre has noted that being the mother to a child with autism can be an isolating experience but it is important that mothers focus on their self-care. According to Bennie, “Taking time out to care for you is not selfish but necessary for self-preservation. Dealing with the issues around autism is both emotional and draining. Looking after your health and well-being is good for the entire family.”

Self-care can take many forms. Start by creating a strong support system – family, friends. It’s difficult to walk this autism path on your own so surround yourself with people who are understanding. No matter how small your circle, having even just one person who will listen, be there, will make a big difference. It might also help to shut off the voices of those who constantly criticise/blame you. If, as a mother you are already blaming yourself, you really don’t need to hear it from anyone else.

Try to make some time for yourself, even if it’s a few minutes a day. This is usually very difficult as so many children are at home and mothers are caring for them 24/7. However, it is important to find that few minutes where you can just sit and breathe and re-centre yourself so that you will find the energy to keep going. This might be a few minutes when you can just relax, take a nap, exercise, or sit down to eat a proper meal. You might consider taking longer breaks on those good days, when your child is not having meltdowns.

Self-care might mean pampering yourselves once in a while in some small way – a facial, a manicure/pedicure, a long bath, a few minutes to sit and watch a movie. The reality is, it is difficult for autism mothers to take long breaks because there is always something to do. For single mothers, self-care is more fantasy than reality. Thus, it is important to fit it in, within your regular schedule, every little bit of self-care will help in some way.

Most of the time when an autism mom is asked how are you, their response is “I’m good.” For them, it doesn’t make any sense speaking about their struggles because "unless you’re in it, you just won’t understand." In the words of Anne Frank, “Everyone has inside of him a piece of good news. The good news is that you don't know how great you can be! How much you can love! What you can accomplish! And what your potential is!” To Mia and Debra and all the other autism moms, don’t underestimate yourselves!

Dr Radica Mahase is the founder/director of Support Autism T&T