The most important thing I have learned about children is that they come to this world and life with their own agenda. We are the vessel through which they pass but the journey is theirs alone.
When things are going well, we parents are happy to greet the applause. We readily accept the kudos that comes when our child is top of the class, the fastest runner in the grade, or the sweetest child on the block. Parenting is a funny thing. It brings out the competitive side in many of us and when our children do well, we revel in their glory, as though we too have won. We are convinced that our parenting is the thing that has made all the difference. No one is immune. I remember being chuffed when my son spoke early or shared his toys happily or chose an apple over an iceblock. We want to believe we play a big role in preparing our child for their shining star moment. Some of the time we do.
But I also know something else. I’m a parent of a child with a disability and despite my best intentions and parenting support, there are few wins. When raising a child who is different or disabled, there are no guarantees. There is no set path. There is no right way. They walk alone along a path that is theirs to navigate and we hover behind, picking up the pieces and mending fences as we go. They lead us. They take us to places and events and people that we would never have met ordinarily. They become our greatest teachers if we can overcome the feeling that we did something wrong. And as they grow and develop, we begin to see their true purpose, their unfolding destiny and how they might fit in this unusual world.
Teachers too, know different. Teachers get to know lots of children through their classes each year and many have the privilege to teach the siblings of a previous student. Having close relationships with different children from the same family group is a wonderful way to highlight the fact that every child has their own journey. Often, siblings have been born from the same genetic pool, and to a high degree share the same home life, food consumption, parental boundaries, rules and consequences, learning opportunities, play and leisure time activities and bedtimes. Yet all teachers know that one sibling can be COMPLETELY DIFFERENT to another. For all the lack of similarities in their personalities and temperaments, they may as well have come from different families. The contrast can be that stark.
It never failed to amaze me how one child in a family could be top of the class academically, and another one be right at the bottom. Or one child be super sporty and agile, whilst the other sibling was a book worm. Sometimes one sibling could be the sweetest angel, while another displayed behaviours more commonly found in prison inmates.
The more children I have taught, the stronger my belief that every child is here for their own journey. One that WE don’t choose.
When children are good and kind and friendly and helpful, living a normal life and behaving well, parenting is easy. Truly. Parents don’t know how good they have it until they don’t have it so good anymore.
But some of us don’t have this life. Parenting is a struggle. Raising our child is a struggle. Every little thing that most parents take for granted, we cannot take for granted. This is what it is like to be the parent of a child who is born with a challenge. Our children miss out on play dates, and sleepovers, and birthday parties. They don’t dance on stage at end-of-year ballet concerts, or join the class on excursions. And when they miss out, we miss out too. On friendships, and social events and just being part of the crowd. Our children’s difficulties become our difficulties, and our world shrinks a little. We stand on the left when everyone else seems to be standing on the right.
There are varying shades of challenges too. Some children are born with severe disability that requires the constant presence of a full time carer. Other children are born with physical challenges that can be somewhat overcome, such as cochlear implants for a child born with hearing loss, or a blind child learning to read braille and live a full life. Some children are born with heart defects or cerebral palsy, and other things that may well limit their life span.
For other families, they begin life with their healthy newborn with no insight or preparation for the trauma to come. Autism is often not diagnosed until the child’s second birthday. Aspergers Syndrome might only become obvious with the beginning of socialising in a school-based situation. Anorexia and depression commonly appear in the early teens. Disease, illness and disability can strike at any time.
But no matter when a parenting challenge begins or the severity of a diagnosis, it is something that rocks the foundations of what it means to be a parent.
We all come to this world of parenting with expectation.
- We believe we’ll be great parents.
- We believe our children will be healthy.
- We trust that they will have friends
- We trust that they will go to school at 5 years old.
- We prepare for really good report cards.
- We imagine that they will sing or perform in the school play
- We expect them to graduate, with a closing ceremony.
But for some of us, this will never happen. The challenge for parents when faced with the road less travelled is how to manage the transition from expectation to an acceptance of the real life they now have.
Letting go of our parenting expectations is actually the healthiest thing we can do. Instead, we need to believe we will do the best we can do in every individual moment and challenge we face, and do better when we know better. Instead of setting ourselves up for a fall (I’ll never smack my child, I’ll never yell at my child, I’ll breastfeed until he is 2 years old), everyone who comes to parenting can hold on tightly to this mantra, ”I’ll do my best, and when I know better, I’ll do better”. It’s a prescription for happiness, and possibly a prevention for parenting-induced depression.
With disability or difficulty especially, we need to let go of the guilt that we did something to bring this on. We need to let go of the need to appear that we are managing, and coping, and being strong. The reality is, at times, parenting can really suck. Parenting is not fair, and good parents don’t always get an easy ride. Sometimes so-called ‘bad’ parents are given angels and good, thoughtful caring parents seem to lump the difficulties. It is ok to be angry and upset and to voice that feeling to our friends and our families and our counsellors. (Never in front of the children if possible, but if that happens, let it go). It is ok to feel duped sometimes. It is ok to wave a finger at an invisible God once in a while. It is ok to scream into a pillow. We just need to be sure to get back up again and keep walking that squiggly hump-filled path.
We do our best, seeking support and assistance and help from our family and friends, and as many agencies, groups, health bodies and hospitals as we can. And when we have done our best, we can rest.
A week ago, I was talking to the parents of a 25 year old girl with anorexia. For over 8 years, they’ve been taking her to every kind of therapy, counselling, program and hospital in-patient wards to try to help with little success. I asked them how they managed in daily life, having travelled a similar path with my daughter and her Aspergers. The father commented, “We had to make a decision that her illness could consume the four of us, or her alone. After all this time and effort and energy, we’ve made the difficult decision to step back and care for ourselves too.” But it was the mother’s comments that brought home to me the hard road those of us with these difficulties face. ”If I had known that parenting would be like this, I don’t know if I would have done it. It’s definitely not the kind of parenting that I hoped for, or expected, and it has not been the rosy picture that I was given.”
For some of us, parenting is not the joyful journey we hoped for. But two things can help.
1. Seeing and finding the gifts of their journey and the individual path they have taken.
2. Letting go of our pre-planned expectations.
If we can do this, and find meaning in the story we share, then we have won too.