Yesterday, my wife and I took our oldest son to Harley Street in search of a definitive answer to a question that has remained unresolved for nearly a decade. After two hours of gruelling questions, the diagnosis was uneqivocal: Asperger's syndrome. Suddenly, everything fell into place.
In many ways I feel relieved. My son will now hopefully get the help he needs and my wife and I will no longer be blamed for his problems. However, I feel sad that so many years have been wasted. I wish that I'd been more assertive with the succession of professionals who implied that my wife and I were neurotic parents, making a fuss over nothing.
Perhaps my son could have been spared a lot of unnecessary suffering.
This morning we walked to Landport Bottom, where the town is celebrating the 750th anniversary of the Battle of Lewes. It may not look terribly exciting, but the events that took place here changed the course of history:
In many ways I feel relieved. My son will now hopefully get the help he needs and my wife and I will no longer be blamed for his problems. However, I feel sad that so many years have been wasted. I wish that I'd been more assertive with the succession of professionals who implied that my wife and I were neurotic parents, making a fuss over nothing.
Perhaps my son could have been spared a lot of unnecessary suffering.
This morning we walked to Landport Bottom, where the town is celebrating the 750th anniversary of the Battle of Lewes. It may not look terribly exciting, but the events that took place here changed the course of history:
My older son stayed at home. His younger brother staged a silent protest, refusing to take his hood down and I wondered what we must look like. Occasionally, people would greet us with a breathy "Hi! How are you? What have you been up to?" We smiled back and said "Oh, nothing much..."
I watched some children dancing around a Maypole and tried to imagine either of my sons taking part in a group activity:
I watched some children dancing around a Maypole and tried to imagine either of my sons taking part in a group activity:
The field was surrounded by stalls. Children were laughing at a Punch and Judy show, whilst mothers in medieval costume were preparing some craft activities. Everyone seemed to be inhabiting a different, happier world to us and I felt as if I was passing through like a ghost.
But of course this was nonsense. I looked around me again and saw a woman with a life-threatening illness, a friend whose mother had just been diagnosed with Alzheimer's and a neighbour whose husband had recently left her for another woman. Beneath the surface, most of us are struggling in one way or another, smiling for the camera.
The happy world of perfect families only exists in Ladybird books. And sometimes even Ladybird lets us down.
25 comments:
My nephew (who is pushing 40) was finally diagnosed with Asperger's after many years of head-scratching (he was once described by a professional at school as 'severely gifted'...). It didn't make him any easier to live with, but suddenly there was a support network, both public and private. My sister has been involved with the Asperger's support group in Brighton for years. She's learnt a lot about dealing with medics, officials, etc. Let me know if you'd like to be put in touch - though I'd be amazed if there wasn't something similar in Lewes.
I am glad you found out what was wrong with your son. It is sad. Life is sad. As you say, some pleasure, some pain. Thank you for the children round the maypole. Courage as you all move forward. Blessings, Susan
I think I'd keep my hood up if confronted by a lot of ppl in medieval dress... hope things go better.
I am glad that you now have a diagnosis. But don't blame yourselves; I think you'll find that most diagnoses are made at about this age or older. I do hope you get all the support that you and he need,
Thanks Mike. There is a support group in Lewes, which I expect my wife will contact. I also noticed that there are "family fun days" in Sussex, which I find hard to envisage. I'm sory that your nephew had to wait for so long.
Sukipoet - Thanks for your kind words. I think you're right - we will be moving forward, after years of going round in circles.
Lucy - I always dodge the people in medieval dress and woe betide anyone who offers me an activity sheet!
Helena - I suppose that conditions are harder to diagnose in younger children, as they're all a bit bonkers. By 14, the difference between an Asberger's and neurotypical child is hard to miss.
As a speech pathologist with 40 years experience with all sorts of kids let me tell you he'll get there. The symptoms of Aspergers actually get better with age generally and they are by far the most interesting kids on the planet. They have these wonderful, intelligent brains and once you teach them social skills which is what they need most, you'll find life easier. He's still your son, you know him best and everything else in life is a bonus. You're right about all of us dealing with something. We just all hang in there and support each other and we get through everything. Take care. Love your blog by the way. Read everything on it. Pam
Support groups look uncomfortable and pathetic until you don't know where else to go. Once you know you are not alone, you will not feel like a ghost, and you will regain hope. I know this from experience.
Thanks Pam. I think he will get there in the end, with help and understanding. My son has many good qualities - he's bright, funny, loyal to his friends and has a strong sense of justice. He may not know (or care) what month it is, but that doesn't matter. I think he'll find more like-minded people as time goes on and feel less isolated.
Brett - I'm sure you're right. We have got to know a couple who have a son with severe OCD and occasionally have dinner together. It's been very beneficial for all us to be able to talk freely about our innermost fears.
I am so glad you have an answer at last and I'm sorry it's been such a long difficult process. I hope now there may be some help that actually does some good for you all. How hopeless that the various schools and doctors to date have been so thick
It's good to have answers, now you can start a new phase of parenting where the rest of the world is now in tune with you .............
Thanks Zoe. I feel fairly confident that things will begin to improve now that we have a diagnosis. I'm relieved that we will no longer have to waste time trying to make my son fit into an educational system that is completely wrong for him.
sustainablemum - Yes, it will make such a difference when people stop saying "Well why won't he go out? I'd just tell him that he has to whether he likes it or not."
At first I was surprised when reading that your son was diagnosed only yesterday, considering that so many posts in your journal were giving to your readers so may hints toward the unavoidable conclusion... then I read MIke's comment, and I remembered an older cousin of mine that displays so many unequivocal signs of having Asperger's syndrome, only he's turning 70, never has been diagnosed and probably never will, not being born at the right time (if you are wondering, he managed to live quite an interesting life, no matter how poor his social skills always were).
And I understood how you must have felt.
I sincerely think that having an answer is a positive thing: nothing worse than this feeling of "going round in circles" you spoke of (and I experienced in another context).
Tororo - It does seem odd that my son has only just been diagnosed, but until Friday we were just dealing with the symptoms rather than identifying a cause. I used to say to the various professionals we met that I didn't think my son's Tourette's, OCD and dyslexia weren't the problem itself, but symptoms of an underlying, unnamed "thing". They looked at me as if I was being a little silly.
I'm glad you finally have a diagnosis. I know what you mean about naming the illness. A friend suffered for years until finally a doctor diagnosed fibromyalgia. Alice said it didn't make the pain go away, but it made it bearable to think she wasn't imagining the whole thing.
There is always hope for Asberger's...a good friend's grandson suffers from it, but is doing extremely well. In fact, he just went on a class trip for four days, without incident. Also, isn't Susan Boyle an Asberger sufferer? Think of the joy her music brings to so many people.
Any health issue is sad, but please don't beat yourselves up. We all are struggling to do the best we can, sometimes against seemingly impossible odds. I feel that you and your wife have been exemplary parents.
Sending love and hugs and good vibes to all of you, Carol
Listening to a radio programme on psychiatry the other day, I heard someone say what we all know - nobody is normal. But the best thing he said was that we are all on a spectrum, with psychotic at one end, boring at the other - and eccentric in the middle. I find that very reassuring - at least we're not boring!
Try to love as much as you can, extract as much fun out of life as you can - and be proud of the boy!
Carol - Thanks for your kind words. Susan Boyle does have Asperger's, but somehow I don't think that will cut any ice with my son - I'll have to find someone that he would deem "cool". I need to look for a millionaire computer games designer!
I'm not downhearted about the Asperger's diagnosis itself. I view the condition as a difference rather than a disorder and whilst my son may struggle with some things, he's way ahead in other areas. The challenge is to ensure that he doesn't waste time trying to be a square peg in a round hole.
But the first step is getting him back to school - not his old one - and mixing with people of his own age.
Nilly - I also heard that fascinating programme and hope to hear the next installment. It's a funny society where an Asperger's person has a "disorder" but a psychopathic managing director is regarded as a success.
As far as my son goes, he's very easy to love. Whatever problems he may face beyond the front door, he knows he's loved and valued here.
Re the millionaire computer games designer : Did you find that Minecraft book I mentioned yet? Or should we tuck it in our suitcase?
I must come back to your blog more frequently - it is very interesting. I am sorry to hear about the diagnosis but at least you have something definite to go on now. Of course, the level of Aspergers varies greatly but it can be a very manageable problem in later years. No doubt you have read all the literature.
I enjoyed reading about the Battle of Lewes and seeing your photos and video. Two weeks ago I went to the re-launch of Anne of Cleves House which has had a massive refurbishment. Today we go to the Ancient Crafts Festival at Michelham Priory
I'm sure the diagnosis must be a relief, and I hope it opens up new avenues of support for you. One of my colleagues has a son who has Aspergers and he was expelled from school after school in his teens - he's now much calmer and an investment banked in HK. Never lose hope.
Dale - Please remind me, what's the title of the book?
Anonymous - I must visit Anne of Cleaves House. I always thought that it was a rather odd collection of things thrown together, so I'll be interested to see how it's changed.
Annabel - It's a huge relief. I'll no longer have to take any nonsense from certain people and my son won't have to wonder why he's different from many of his peers.
I think you're right about finding your son the right school. It seems to me that I read that most people who have Aspberger's actually have much higher IQ's than average. Which might be one reason that they find it so hard to adjust -- they see things differently, and see things we don't see. If I can find a reference to a computer guru who has it, I will certainly forward you the info. It's always good to have a role model who shows us the way. Sending love to you all, xoxo Carol
I hope things will go easier for your son and all of you now you have this diagnosis. He is lucky to have parents who love him and recognise his talents. It will take the pressure off now that you no longer have to fit him into the one-size-fits-all system.
Welcome to the world where NT doesn't just mean National Theatre or Northern Territory. It is not such a bad place and there are some really interesting people here.
Anne - I'm being really thick here, but what does NT stand for?
Steerforth, I firmly suspect my father had the same and never got diagnosed his whole life (he died last March). Ok, so things have come a long way since HE was 14, but your son is still incredibly lucky to have you for his parents. You've left no stone unturned to get here and I am sure a diagnosis can only make him feel better about himself and help him realise it's a question of learning to manage his condition, acquire the social toolkit he needs and make the best of his life rather than seek a cure as such. Even more importantly he is not alone. There are others in his position too. I prescribe a new kitten! ; - )
PS: O too has a fiftysomething brother who displays all the signs but has never been diagnosed. He has however managed to earn big money in accountancy and meet a devoted chatty partner, despite his own lack of social skills. He is also a devoted son to his elderly parents (one now with Alzheimers) and has visited them almost every weekend since he was 20 whilst the other brothers were off living their lives and paying only occasional visits home. So a lot of great qualities - just don't expect more than a few words about how his team are doing lately or what he saw on TV last night - instigated by you. He shows his warmth in other ways, though the family say he is considerably improved since he met his partner and that he has a lot more confidence now.
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