Stay At Home Mom
Age of parents:
Daniel and Emile
Age: 13 and 9 Years
Is this your only child? No other kids.
Diagnosis of child: Both our sons have autism spectrum disorders with severe developmental delays and sensory processing disorders.
What are the biggest challenges facing your child on a daily basis?
Emile is mostly non-verbal and not potty trained so communication is a great frustration for him. They both still need help with some activities of daily living like bathing and brushing teeth. Anxiety is a real problem for Daniel, about anything that changes and although he is able to communicate, he is not always able to communicate his feelings or when in pain or feeling sick.
What are the happiest moments you have with your child on a daily basis?
We love dancing in the car to lively music when I fetch them from school. Snuggle time in the evenings with Emile is the best as he is the most loving child and just seeing life through their eyes is enriching and humorous!
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
Absolutely! As parents to two special needs kids, you have to sacrifice a lot! Marcus is a very hands- on- dad, but also has to work a lot of time out of the country to make ends meet. You have to make a conscious decision every day to keep open the communication channels and to not dwell and mope about how it could have been. We are both on the same page about what we want for the boys out of life and will cross any river together to get to that point. We do not sweat the small things in life anymore and concentrate on our blessings, this has made us stronger!
What has your child taught you about yourself, both positively and negatively?
Positively: How strong I am and how well I can cope with setbacks and hardships that this kind of life throws at you. I never knew how patient I could be. Negatively: I have unfortunately become more cynical of other people. The way in which our kids are sometimes treated and the verbal abuse we as parents go through from strangers, can be very harsh.
Are your family and friends supportive?
Unfortunately very few people have empathy for disabilities that cannot be physically seen and even fewer make the time to research about these conditions. Our unique circumstances of having two disabled kids makes it very difficult to maintain friendships as we can not take our sons to unfamiliar places and have to think ahead about how to keep them occupied. Autistic kids are very easily labelled as naughty by the uninformed. My parents play a huge supportive role in our lives however and without their encouraging love and support for us and our sons we would not have survived! The boys are furthermore enrolled at Footprints Special needs school who have been a pillar of strength to us and have become a part of our family.
Do you take time out, if so what do you do to relax?
We try and spend most of our time together as a family. Marcus and Daniel have gotten into road biking recently and we also love the outdoors and going for long walks. I have alone time, I love digging in my garden and reading.
What has made the biggest difference to your child’s quality of life?
I firmly believe in unconditional love and boosting their self-esteem. Believing in them and having faith that those milestones will be reached, not matter when or how late it may be. A solid routine is very necessary in our household which has been made possible by me giving up my career to always be there for my kids.
What is your dream for your child?
Firstly that Emile will find his voice! Our dream is that the boys will be able to take care of themselves and that they will be there for each other and not be alone. Also that they reach their full potential in order to find something meaningful to do with their lives and to just be happy like everyone else.