A Chronic sorrow. (Invisible disability)

I have been wanting to write a blog about how it feels to fight constantly for a person who you love more than life itself. I don't want it to sound self indulgent or pitying though and I have found the  balance elusive. I want to describe what it is like at times to inhabit the world of disability. To swim against a constant and ever stronger current of questions, squeeze through ever tighter hoops and increasingly high hurdles in an effort to have someone's needs met. I am not a negative person by nature, the exact opposite in fact, one of life's optimists who tries to see the good in everything and everybody. At times though circumstances conspire to floor me and send me spiralling downwards into what doctors call a 'reactive depression' and I call despair.  Due to circumstances beyond my control and out of my reach I sometimes watch a total lack of understanding of a mind that works differently, an agonising story that plays out in a lonely, slow motion epic.

I won't go into details of what inspired this outpouring. I had experienced a train wreck of a year. I want to explain that I am generally positive about life and my now 30 year old son is a joy, a gift to the world, a gentle soul who depends entirely on the kindness, understanding and honesty of others.
Sadly his innocence, his ease of trust, his inability to recognize malice sometimes leads him into places which are dark and harsh and unyielding. He navigates the world without a compass, he at times makes poor choices and he gets into trouble. He has a whole host of invisible disabilities, a complex interplay of things which are just too much for one mind to successfully work with without support and understanding.

He is guilty only of innocence.

I  worked with the Dyspraxia Foundation for some 23 years. A Charity whose helpline saved me when everyone else seemed to think I was making up the difficulties my son experienced. It was been a fruitful time, I have learned so much. 

At 40 years old I went back to University and studied his difference, gaining a BHSc (with honours) and then a MA in Disability Studies. A PGCE followed enabling me to teach.  

Jean Ayres in her wonderful book 'Sensory Integration and the Child'  said 

' Mothers of children with problems carry a tremendous emotional load. Sometimes the weight of the problem seems too much to much to bear, and the presence or severity of the problem is denied in order to cope. Or parents recognize the severity and then they search and search for better answers to a difficult situation'  (pvii)

I was definitely one of the searchers. I researched as a kind of cathartic exercise because the lack of real motivation to help him perplexed me, the judgemental looks, the tuts and sighs. It really helped me and informed me to learn in depth about the fearfulness that surrounds disability, the 'thank goodness it isn't me' mentality. I then  set about changing the world. I have to date had three books published and lectured around the country to raise awareness. I do see some subtle shifts, some positive changes for the better, a greater representation of disabled people on the TV and in film but on the whole I find a world that doesn't really 'get' those that appear just like anyone else and yet behave somehow differently from the expected 'norm'. Those with invisibility disabilities (and there are many).
The actress Sally Phillips who has a son with Downs Syndrome recently said 

                 ' My friends pity me and yet I think they should be jealous of me'.

 I love that comment. My son greets me every day with a smile that is so full of complete love and trust, he takes the world head on, forgives unkindness in a flash and never speaks badly of anyone. NEVER. The world would undoubtedly be a much better and kinder place if it were full for people with his exquisite soul. People would be surprised to learn that he suffers with an anxiety disorder I am sure.
I recently read the book 'Birdsong' by Sebastian Faulks and a quote really struck me when one of the characters who had a son with learning disabilities said of his son

 ' His innocence was not the same thing as ignorance, it was a powerful quality of goodness that was available to all people, it was perhaps what the Prayer book called a means of grace, or hope of glory' . 

 I love that expression a 'powerful quality of goodness' because I believe it is something that we are possibly all born with but those with learning disabilities seem able to hang onto, whilst the rest of us are tarnished and dented by life experiences.

I placed my son in supported living at age 25 years for two reasons. I wanted him to learn to cope without me and I was unable to keep him safe from exploitation by others. You see he walks a boundary, between 'able' and 'disabled', he feels well placed in both (sadly ever separate) worlds. He looks just like any other  guy. He is though an open book and there are always those ready and willing to exploit and humiliate difference.
Don't get me wrong there are lots of really kind people who are willing to, and do protect and look out for him, but no one can truly keep him safe...not even me. He has a condition that absolutely affects the way he perceives the world and how to manage himself within it. It makes him 'extremely vulnerable to  exploitation'. It makes me extremely scared for him.

I am immensely proud and privileged to have him as my son, but that love does come with something that I call a chronic sorrow. A sorrow that he doesn't have buddies calling on him to take him on a night out, a sorrow that people sometimes treat him as less able than he is, a sorrow that he didn't get academic qualifications because that set him up for a world where no one is prepared to employ him. A sorrow that he can't drive a car. A sorrow that he spends New Years Eve with his boring parents and not out partying and a sorrow that he doesn't have the partner he would very much like (yet). A sorrow that everything is and will always be so much harder for him. And yet he rarely lets his struggle show.

He has a full and productive life, he is busy and well liked and we are lucky in so many ways but I just want to get across to people that while I know that there are so many positive things attached to having a 'child' who learns and lives differently and I do appreciate and celebrate that fact but there are occasions when I am not Ok with it and I am writing this because I believe that I can't be the only mother who feels like that. Its true that small achievements become immense celebrations, life is more colourful and random. There is though a real loneliness at times, an isolation in watching someone struggle with the everyday things that others take for granted. Watching your friends youngsters grow and achieve and marry and have kids. I LOVE that they are doing that, I am so happy for them, but I am on the outside. I function on the perimeter of 'normal life'. I often feel that  I don't truly belong and I isolate myself from the communities that  am often desperate to be part of. I don't often let my hair down in case I get a phone call and need to drive to him in an instant. I keep my phone on all the time. I hate letters in brown envelopes because they are usually something I don't want to deal with anymore and they fill me with dread. I have lost confidence, cherished friends, at times my sanity.  I have gained a great deal too.

Every time he is not accepted to do something he really wants to do. It hurts, really hurts (me, not him) because I want the world to include him, to make adjustments to support and make things successful for him. I want the world to see the person that I see. I want the world to be kind and to love him and to know that when I am no longer here he will be safe. I want people to challenge those who are uncomfortable in his presence, to make a stand for his absolute right to participate in the things he loves, and to give him the opportunity to adjust and adapt. When that doesn't happen, or even worse when he is grossly misjudged it completely floors me.

So if you are a professional person reading this ( 'we' tend to meet lots of professional people on our journey) please remember that we are generally happy, we do love our children but the world is so full of pressures that work against us that sometimes we are really sad, and that's OK.

We like the positivity, we enjoy the messages of support and glee, the positive stories, the anything's possible mentality but we also write the endless letters and wade through a mass of unwieldy bureaucracy and form filling, and assessments, and appointments when we just want to be playing in the sunshine and eating ice cream.

We never stop grieving  for 'what might have been'. That doesn't make us grim and negative, it makes us human.

Have I changed the world? I guess to a tiny degree I have. That's Ok.  Every person who is informed is a huge plus. Please though folks remember that lots of families deal with lots of additional pressures due to their children's perceived disabilities. Just like everyone else they are just wanting the best for their loved ones. Often that is etched with a chronic sorrow......