When we hold our tiny humans for the first time, our hearts burst with the anticipation of what is to come and the life that stretches ahead for our family. We hope our children live a life of happiness. We are ambitious for their future, wanting to create a life of opportunity where our children can fulfil their dreams. In those first years, our hearts swell and we dream big.
For a SEN parent, those dreams may start to fade or shift as the years go by. We may notice our child is struggling to socialise or communicate. They may have difficulty with learning. They may find the world around them overwhelming and instead prefer the solitude of a safe space. We had a plan. We had seen a path ahead for our child:
- play
- school
- friends
- college
- university
- work
- marriage
- Yay, we can have grandchildren!
As we start to notice their difficulties, our own anxiety can start to encroach as our world view shifts. Our child struggles to play and they struggle with school – how on earth will they fulfil everything else we had dreamed of if they cannot get past the first 2 steps of our plan?! We start to feel overwhelmed as we worry about the rest of their life and what their future will be. We wanted them to thrive, but they may be barely surviving. Our hopes and dreams for our children are crumbling and we feel the weight of their entire lives crashing down on us. We no longer have the certainty of the path we were following. The journey ahead is now unknown and filled with uncertainty.
Our reality can now start to weigh so heavily on us that our own mental health is impacted. We cannot understand what our child’s life will be anymore. It was so clear to us but now as we look into the future, we only see a life of challenge and struggle because that is what they are facing right now. We need to rewrite their future, but there is no clarity and our struggles here and now are clouding the future possibilities.
This may sound familiar to some other SEN parents, and it has been the reality for me and Tony. We used to joke that our son would be the first ever President of Earth. He would bring about world peace. He would end poverty and cure cancer. He would invent warp drive and travel to far distant planets (he is named after a Star Trek character after all – no it is not Spock!). As our son’s strengths and personality started to shine through, it became clear that he had an amazing brain, huge potential and a natural ability to piece puzzles together. Our little engineer started to emerge. We saw a future where he was an engineer or an architect, an inventor and a creative problem solver (probably a more realistic dream that President of Earth!).
When he hit burnout earlier this year, all those dreams vanished. He could not attend school. This meant that he can’t do his SATs. He would lose all his friends. He can’t go to secondary. He won’t be able to sit GCSEs. He can’t do A-levels. He won’t go to university. He won’t meet the love of his life and get married. All of a sudden, we were not having grandchildren because our son could not cope in school.
At 9 years old, our son’s entire future was in question.
I realise now that it is somewhat silly for us to believe that our son’s entire future is at risk just because he cannot cope with the demands of school right now. The more I have explored and understood the reality of what all of our children are facing in school, the more I have realised that our son is paving the way to a brighter future for other children. He has shown me that the education system is so fundamentally broken for so many of our children that he has ignited a fire inside me to help others, raise awareness and act now to create change.
Yes, he is struggling right now. Yes, he is out of school and we have a long and uncertain path ahead of us towards an unknown future, but it will still be filled with happiness, love and opportunity. It will just look a bit different to what we had imagined. Different, not bad. Different, not wrong. As I have come to terms with our situation, I have started to accept and even anticipate our different future. I no longer look with fear, I gaze with wonder at what will come. Sometimes I still feel the weight crushing me, but it is getting easier to shake it off and return to a state of anticipation.
What if the very challenges and uncertainty we face right now make my son a stronger, more resilient and better equipped adult for his future? What if the difficulties we are facing are playing a small part in the changing face of education?
So, I now like to live in the here and now. I cannot see the clear route for his future, but that can be exciting. He will no longer follow the path I had laid out for him; he will build his own future and I will follow him. He will show me the way and I trust him.
Our today is not our tomorrow. I am looking forward to seeing where my boy leads me.
