A letter to my son.....
A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.
The result has been an autism positivity flashblog, going out today, 30th April, where bloggers who write about autism and aspergers write a post which hopefully anyone googling "I Wish I Didn't Have Aspergers" would find support and encouragement from a whole community of people who understand, or are trying to understand...
"I wish I didn't have aspergers" is something I guess my son has said,or thought, or googled at some time so I thought I would write the letter that I would want him to see if he felt so low that he had to type in those words to see what came up...
I remember when you were born, our first child, our boy, our son. We were filled with hopes and dreams for you, Daddy wanted you to be an Arsenal Striker, Fighter Pilot and Doctor all rolled into one (it's OK, he wasn't serious, well maybe not about the fighter pilot bit...). But what we wanted most for you was to be yourself.
The early years with you were tough, for you and for us, you cried and cried, we put it down to colic, it was probably reflux, or those sensory issues making themselves felt. We thought it was because you were our first, maybe because you were a boy.
As you got older, your character developed and you grew into being you. You loved Thomas the Tank engine, do you remember you used to sing the Island of Sodor song to me? And how one Christmas all you wanted was a turntable for your trainset. You had all the trains, Daddy used to scour toyshops when he was travelling to pick up a train you didn't have. The teachers in school loved you, and you loved school, you loved learning, and you were so pleased that we had internet and computers at home so you could find all those amazing facts that fill your head. Your nursery school teacher still remembers you, 12 years later, asking if she had internet access so that you could go on Thomasthetankengine.com on the one and only school computer!
The older you got, the more your obsessions changed,for a while it was Pokemon, then it was Dr Who. How much did you love Dr Who? That TV programme came along at the right time for you, the boy the other mum's referred to as the little professor! You had all the cards and the model tardis and the magazines ...but this obsession also came at a time when the other boys in your class were into football and sport, something you were't very good at, and this made you a target for their cruel words, they called you geek and laughed when you burst into tears when you were stressed out in class.
But you showed them, you got top marks in your tests and got into a great school, you found friends who were on the same wavelength as you and we were happy. But as those adolescent hormones started flooding your body, the quirkiness became something more and we realised that you were struggling, not with the work, but with your ability to do your school work and homework with everything else going on around you, the noise and buzz and sensory overload must have been unbearable, your grades slipped and you began to get really bad headaches, you started to look sad. I remember coming to school one day to meet with your teacher and watching you walk across the playground like you had the weight of the world on your shoulders.
Often things at home became too much, it didn't help that we could not offer your routine and stability as your little sister was very ill in hospital. We had always joked that there was something more to you than just being bright, we thought maybe you were dyspraxic, we were told that you were so bright you probably wouldn't get any help in school anyway - what did we know? What did they know??? You were finding the world increasingly overwhelming because you see we understand now that you experience the world differently to us neuro-typical people. You sense things differently, you approach problems differently, you learn differently - well it's different for us, it's normal for you.
Sometimes all this sensory overload from our lives was too much and you had meltdowns and we realised that this was more than teenage tantrums, there was something real that you could not articulate to us. A meltdown was your way of showing that you couldn't cope, it was a cry for help, when you did not have the words to know how to ask for help.
One day we all travelled into town and spent an afternoon with a doctor, she asked you loads and loads of questions, that must have been so hard for you, to have all that focus on you, you sat playing on your ipod. I now realise that was how you were able to still your mind and focus, you heard what was being said but I guess to an outsider it looked like you were actually being very rude. The doctor gave us a name, Aspergers Syndrome. And the penny dropped and we understood that your wiring is different to ours, not better, not worse, just different, as we have discussed before, I'm wired up to be a pc, your wired up to be a mac.
Daddy and I found out all we could about Aspergers and so much fell into place, it helped us understand a little of how you feel, how things can overwhelm you - you describe it as a buzzing in your head, like a computer that is stuck. How change of plans can be unbearable, how it can be difficult to understand what your teacher is saying, how you can sometimes it just all gets too much and you lash out physically and verbally.
But that word, Aspergers, has been a key to unlocking a big door for all of us. There were so many things looking back that we would have done differently when you were growing up, we wish we had gone to visit that doctor years ago, but we are where we are now and in a way we are all in a better place for knowing about Aspergers.
You have come to embrace your inner geek and be proud of it, you have been so fortunate to have been born into a generation where geek is good, and as you know we were so proud of you when you came out to your peers about your Aspergers at a public speaking competition and you talked about how without the obsessional behaviour and attention to the minutae we would not have so many of the technology inventions the world has taken for granted today, many invented by people with asperger traits...
I know you find it tough to be in our neurotypical world, trying to fit it, trying to say the right thing, sometimes not doing it so well, but you are beginning to learn strategies to cope and to ask for help. You have found other people who are aspies like you, people who share your interests (or should I say obsessions!).
I know sometimes the black mood descends, and life is tough, it's enough to get out of bed let alone get to school, and your teachers just don't get it, and the lights overwhelm you and stupid comments in class annoy you and your head buzzes and you get a migraine and sleep for hours and hours. I need you to know that I understand and that we want to help, you are surrounded by people that want to help, that you don't have to feel like you are the only person in the world
And when you have manic episodes, when your senses are overloaded, we know that you have no control over this and you don't want to be like this, and we are working on ways to try and stop the overload so that it doesn't get ontop of you.
You are teaching us so much, by trying to stand in your shoes and understand how it feels to be you we are trying to help you. You give so much to us with your amazing knowledge and head for facts, although sometimes when you burst into the bedroom at 6am to announce that Newt Gingrich has stepped down from the Presidential Candidate race I think your obsession with politics can go a little too far...
Aspergers is the name that was given to some of the behaviours that you have and the way you function, it's a label that helps the neuro-typical world understand you better, and hopefully support you better. But when you were born we gave you a name, Theo, not Aspergers, you are first and foremost Theo, you have Aspergers but you are not Aspergers. I can't take the Aspergers away from you and I would never want to, it makes you who you are, funny, quirky, interesting, intelligent, single-minded and driven.
You will find your place in the world, no-doubt it will be in something to do with computers, programming, gaming or IT. You will go on to do great things, the road will not be smooth, I'm predicting that it will be a bumpy ride, but then you like rollercoasters, we are all here rooting for you and you will get there and while there will still be days where you will wish you did not have Aspergers, I hope those days are outnumbered by the days when you are glad to be you.
Do you remember when you started high school I gave you a book by Dr Seuss and highlighted a quote in the beginning ?
“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. You're on your own. And you know what you know. And YOU are the one who'll decide where to go.."
Keep that with you and never forget to be YOU (and that we will always be there for you).
This post was written as part of the Autism Positivity Day Flash Blog 2012
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)