Before I publish any of this, I will have to ask three wonderful young people’s permission to do so. As I wrote a little while ago, my story is not merely my own to share, and I must take their feelings into account before I make anything public. So why do I feel it important to write any of this? Our story has been difficult, sometimes (maybe often) traumatic, and I have had many reasons for sharing some of it as we have journeyed along our little life. The two main ones were the following:
1. Writing was and continues to be therapeutic for me. It is a coping strategy, I suppose, and while some things may be difficult to read, I hope that I have always written with respect and integrity. I have always believed in the power of honesty and truth, and I have always been aware that truth looks different depending on your perspective. I hope that if there are things that people object to in my writing, they will at least know that it was and is “my” story and in that, it is true and honest. There have been times when sharing that with the universe was the only way I knew how to keep upright and deal with the everyday.
2. When things were tough, I felt utterly isolated. But somewhere, I did know that I was doing my best, and that my parenting was not the core problem in our lives. If that was indeed the case, then there must be other families experiencing not only the challenges of daily life with special needs, but also the isolation. I suppose I wanted in some small way to break that isolation. To have the courage to say, “This is happening to us. We are doing all we can, but it feels hopeless and I feel a failure.” And hopefully to hear back from others that they felt the same. I also hoped to hear from parents who had been where I was, and who could maybe reassure me that there was hope.
I did find that community, and it continues to exist. Through the amazing work of people like Mark Brown, about whom I wrote recently, and Yvonne Newbold, there is growing awareness of the hidden reality of life as a special needs parent and more importantly, how a child with such needs experiences childhood. Children branded “naughty” and “disruptive” (some of the kinder words that have been used) are slowly becoming recognised as deeply distressed and traumatised, and there is a small section of society that is beginning to realise that we all have a duty of compassion towards those children and young people.
The reason that I feel compelled to write now is that my amazing Offspring should not be immortalised in their childhood pain and suffering. They are more than that, and they are all slowly heading into young adulthood with optimism and (I hope) a knowledge that their inner hopes and fears have been heard.
So I would like to immortalise where we are now and the progress we have all made. I would like to stop and reflect on the lessons we as parents have learned, and hope that the Offspring forgive the mistakes we made along the way.
I also, desperately, want to give hope. To the families that are wading through despair and darkness, who love their children but have no idea how to help them in the day to day, I would like to say, “Have hope. Things can get so much better. For you, but most importantly, for them. Hang in there. Keep loving them. Keep listening to them. Keep fighting for them. They are so utterly worth your efforts.”
So this is where we are now… without specifics for they are unnecessary, but in truth and honesty as I see it:
We are living as a happy family, all under one roof. After years of residential school, our amazing First came home and has been a joy to live with. He is caring and compassionate. He is stubborn, and is looking out on the precipice of adulthood with a more than healthy dose of fear, but I think and hope that he knows we are there to support him in the ways that he needs. I think he knows that we will always have his back. He is increasingly showing, or discovering that he has rather brilliant “brothering” skills, and in that he is helping not only his siblings, but us as parents too.
I have learned that I need to listen to him. That his difficulties in engaging with people, or leaving the house are real and MUST be respected. In return, as we have given him that respect, he has been more able to act and move forward with his life. He will go at his own pace (in fact, as we all do) and I have no doubt that he will do very well indeed. I sometimes forget. I sometimes rush him, and that is never helpful. But that is MY problem to deal with. I have to remember that timelines imposed on young people are societal constructs that never take into account an individual’s capacity, resilience or indeed wishes. This young man may need a little extra time, but he is becoming a wonderful person. Anyone who knows him agrees… (though he may not!).
My only Daughter is home. After years of investing her whole life into “doing the right thing”, and not being heard by those who were there to help her (sadly and shamefully including me at times), she reached her limit as we all do in such circumstances. It still amazes me that she was able to hold on for so long. We have had and are having a difficult year. As a result of the complicated nature of her life and that lack of responsive “listening”, her mental health has spiralled somewhat out of control and she is now grappling with a mind that is “messy” (her words).
I don’t want to minimise what she is going through, nor do I want to publicise it. So I will go no further.
However. This amazing young woman is now learning from home. She is taking her time to heal, to learn to live in her body and her mind, and I am more proud of her than I can say. We are all working so very hard to hear her, to respond appropriately to her, and to let her know that we have heard. She, on her side, is working to believe that. Not an easy task when your needs have been ignored or brushed aside for so many years.
She is the best daughter a mother could have. It wouldn’t be right to say that she is my best friend. I don’t think we are “friends”. I think we are a mother and a daughter who see each other as individual people, and who rather like what they see. She is, as ever, a brilliant sister, but she is trying to let her brothers be the “looker-afterers” to some extent. Like the First, she is caring and compassionate. She puts her friends before herself. She “sees” people: their wonder and their pain, their weakness and their strength. She is quite, quite wonderful.
The Youngest has made the most enormous strides in the last year. Again, I have to attribute this in part to the fact that I made myself listen. He has taken more control over such things as his bedtime (and oh my goodness is it difficult even as an adult to make yourself go to bed early when you are tired!), and his eating.
After a lifetime of severe eating difficulties, he has managed a beautiful, fragile and phenomenal transition to the world of oral eating. When I look back over the past six months, I can see that we were communicating amazingly well and yet using no words. At no point until the summer did we sit down and decide anything about food. I just sat back and gave up control.
And in time, he started to eat a little… and then a little more. And I changed what food I gave him via tube, without really knowing why, without really questioning anything. The only thing I did was ask him to know his weight. And he happily took to weighing himself regularly and telling me. Little by little, he began to take charge of his own eating. So much so that in June or July (I cannot remember, which in itself is pretty amazing) we stopped tube feeding altogether. I felt a confidence in him that was new and unexplained, but I decided to heed it.
Youngest has been eating orally now for about two months. He has even made the decision to take his meds orally. He is clear that there should be no conversation about removing his button for some time to come (even next summer feels too soon for him), and so we do not talk about it. We do talk about food. Every day. Because it is still very difficult. But in a great many ways, it has become HIS problem, that he comes to me for help with.
Maybe the biggest change in me in the last year or two has been a surrender of sorts. A realisation that these three small humans may well be “unfinished”, but that they are complete humans nevertheless. And as such, I owe them as much respect as I owe any adult. As I write this, I do not know whether they will allow me to publish it. I deeply hope so, and in many ways, this is the most vulnerable piece of writing I have ever done because I am putting it in their hands.
What wonderful, amazing hands they are, though! Whether they say yes or no, I could not be prouder of them, or love them more. I hope, for those families who are finding daily life so difficult, that they will allow me to share. Not so much my happy ending, because really it is only their beginning, but whatever we call it because it is really, deeply happy.
At what age do we consider a human person to be an individual with a unique identity, with a sense of self sufficiency to make decisions regarding their emotions, their clothing style, hair choices, whether or not to pierce their ears?
I’m sitting here, reeling once again from the shock of diagnosis.
Simple Tangles 