Packaging designer & Entrepreneur
Age of parents:
Age: 9 Years
Is this your only child?
Yes, 1 (sister), 5 years
Diagnosis of child:
Sensory Processing Disorder
What are the biggest challenges facing your child on a daily basis?
Having an invisible disability. People don't notice what she endures on a daily basis, being surrounded by sensory challenges, which seem like every day happenings to the rest.
These children try so hard to keep it together while in public, hence that they fall apart when they arrive home to their safe place. Often taking out their frustrations on the people that love them most.
Her body does not sense when she's hungry or thirsty, hot or cold, in flight or fight mode - causing major anxiety. As parents we need to keep checking that she has eaten or had something to drink, so her body can function properly, but as she gets older, this constant 'interference' causes problems and leans towards a tendency to not eat at all.
Her anxiety also causes 'selective mutism' which means she cannot speak in some situations. This causes her a lot of embarrassment, as it is either perceived that she is shy or that she is ignorant and rude not 'wanting' to speak. Socialising and crowded spaces is also a big no-no, making any situation away from home stressful - being school or a kids party.
What are the happiest moments you have with your child on a daily basis
The little bits of time that we spend alone - car rides to and from school, chats before bedtime. It really makes me happy to have these little bits of bonding moments.
Are you married?
Has your special needs child had an effect on your marriage?
Yes, almost all our time is invested in her, adapting our lives to try and make her as comfortable as possible.
Are your family and friends supportive?
Yes, they try to be. But even so, most don't understand what we really deal with on a daily basis. I have a friend and family member in similar situations as myself, who truly understand, and it's so special to be able to touch base with them, especially during the downs.
What has your child taught you about yourself, both positively and negatively?
Patience! Some days you are forced to stop whatever you are doing, and focus on the important things in life. The influence you have on a young life, totally dependent on you, and you are able to shape their future. Reality is that you constantly need to acknowledge and encourage and positively try to deal with negativity and meltdowns, that you as a parent get burnt out. You try to be patient and not get angry, because you know your child is having a hard time instead of giving you a hard time. You also have a sense of pride, wanting to say that you are 'very well' when people ask how you are doing. No matter what, you are your child's best advocate and you will do anything for them.
Do you take time out, if so what do you do to relax?
Very rarely. Spend most of my 'free' time trying to work on my business.
My garden is therapeutic and we try to involve the kids too, to get some fresh air and physical exercise.
What has made the biggest difference to your child’s quality of life?
The bond with me, even though it's extremely tough most days, it makes a difference to know I am there to shield her.
I think the most important thing is for her to know that she is loved and supported.
What is your dream for your child?
To be happy, positive and well-adjusted.