Thursday, 17 May 2012

A label doesn't always mean anything.......

Yesterday we had one of our 'big' meetings.  These are meetings that consist of lots of people with titles.  Social workers, health visitors, mental health workers, portage, nursery etc.  But also a meeting where lots of people are missing who should be there, as they are key to our family.  I could spend hours writing about the negative and devastating things that happened in that meeting, but, seen as I have been told I need to have more of a 'positive' outlook than so 'negative' I am going to steer away from that, and talk about a positive.  It may seem like a small thing to many people, but to me it means everything.

Cameron.  Bug.  He's nearly 7.  The last post I wrote about his Coeliacs disease.  But Cameron has 2 other 'distinct' features about him.  One of those is a 'microtia'.  Which is basically a malformed ear.  He's had it since he was born, it doesn't bother anyone.  He call's it his 'little ear' and while we are under a plastic surgeon who may alter it in 5 years or so for cosmetic reasons, I can't see Cameron opting for the HUGE surgery that it entails (well, 2 surgeries infact).  His hearing in that ear is compromised, and always will be.  It's not even likely his hearing would improve if the surgery went ahead, as we aren't 100% sure he has an eardrum that side.  No one has been able to see it.  It's a 'defect'.  But it makes Cameron unique.  No one really notices it, I have known people for 4-5 years and they've never noticed it at all.

Something else that makes Cameron special is his other special label.  He has a diagnosis of 'microdeletion of chromosome 16p11.2'  it's is a rare chromosome rearrangement.  It's so rare that there is no name for it yet.  The 'medical' definition of this label is as follows.

16q11.2 microdeletion syndrome has been associated with many features. These are likely to range in severity from person to person and may include medical, physical, and developmental features.
The medical concerns that exist for individuals with 16p11.2 microdeletion include an increased risk for seizures and birth defects. If a person has seizures, they may be either mild or severe and may or may not respond to medication, although this is difficult to predict.
A person with 16p11.2 microdeletion syndrome may have subtle, unique physical features. However, it may be difficult for someone other than a genetic specialist to recognize them. Also, although individuals with 16q11.2 microdeletion syndrome have been reported to have physical features that are different from family members, no specific pattern has been noticed in all individuals with the condition. However, one consistent feature is a large head size (macrocephaly).
The developmental features that are more likely to occur in someone with 16p11.2 microdeletion syndrome include autism spectrum disorders and mild to moderate intellectual disability(previously known as mental retardation). Many individuals will have a delay in expressive language, which often exists regardless of a diagnosis of autism. Individuals with 16p11.2 microdeletion syndrome are also prone to neuropsychiatric disorders including attention deficit hyperactivity disorder (ADHD), bipolar disorder, and schizophrenia. It is thought that up to 1 in 1000 people with a language or psychiatric disorder will have 16p11.2 microdeletion syndrome. Additionally 1 out of 100 people with an autism spectrum disorder will have this condition.
16p11.2 microdeletion syndrome is a rare condition that has only recently been characterized. It is difficult to pinpoint just how often it occurs because there is a wide range of disability and some people with milder symptoms may not be diagnosed. 16p11.2 microdeletion syndrome is estimated to occur in 3 out of about 10,000 people.

Now, reading that, I was horrified.  I read a lot of things like this when, at the age of 3, a letter plopped onto the doorstep.  It made me feel so sad.  Cameron seemed to fit every single thing of those above.  He showed signs of an Autistic Spectrum Disorder, he had no speech, he was developmentally delayed, about 18 months behind, he has seizures.  It wasn't looking good for him.  It took me a little while, but I just accepted that this was the way it was for him, and all I could do was push him to be the best he could be.

Starting school Cameron struggled, his speech was struggling, he was frustrated and so far behind at school.  He was little as well.  Then we had Rowan and his whole life was turned upside down, and our focus had to change for all the children, from pushing them to achieve, to holding their heads above the water.  He was still struggling at school.  Then Cameron got to year 2.  I was dreading it for him.  It all moves from 'play based' learning to 'proper' at a desk, writing, reading, and I was worried he was going to fall further behind and end up with more self esteem issues.  Cameron has always had confidence problems.  Always.

I went to the first parents evening of year two, and we talked about how far behind he was, and we discussed ways to help him.  Both his class teacher and us decided that rather than pushing for results and not getting them from him, the best place to start was to boost his confidence and self esteem and teach him that it was OK to not be 'right' all the time.  So we dropped his spelling list from 10 a week, to 2.  He suddenly started to get 2 right a week, instead of 0.  The big grin on his face that day he came home with 2/10 I will never ever forget.  My boy did it, and he knew it.  He was proud of himself.

                            Cameron won 'scientist of the week' at school!

From there, we took one baby step at a time, he started to read one word per page of a book.  It was painstaking, but he did it.  His self esteem and confidence being more important than the achievement.  Another milestone from Cameron was when he got a bronze certificate for reading 3 books in one week!  Considering at the beginning of the year I couldn't get him to look at a book while I read it even, it was a HUGE improvement.

So, a few weeks, I noticed Cameron was playing on his laptop.  He was playing a numeracy game.  There are cars, and he is playing against other people (or so you're led to believe). A sum pops up on the screen, and you have to type the answer, the more correct answers you give, the faster your car goes.  He found it all by himself.  He showed me how.  He used google.  He typed in 'car ading gam' well google corrects your spelling, so up pops 'car spelling game'.  He worked out that by trying, you can get something back.  He also excelled at these 'sums' and he LOVES the game.  He also started reading signs and posters.  There is a 'no fishing' sign in the lake near our house.  He stood there and said 'that sign says no fishing'.  Yes it does darling.  Then today, he was reading the packages of food.  Such a huge achievement.

I sat in that meeting, with all the shit around me, I'd had an awful day already, the meeting went on for a ridiculous amount of time, but the headteacher started talking about Cameron.  This year is 'SATS' year for him.  He is predicted......2c in reading and writing and 2b in maths.  For those of you who don't know what these means, 2c is just a smidge below average, and 2b is average.  He is confident, he joins in discussions at school, even if he's got the wrong answer he will proudly wave his hand in the air.  He comes home from school happy, he has friends at school, LOTS of friends.  He WANTS to go to school, he misses it when he has to have time off for appointments.

Cameron smashed that 'developmental delay' diagnosis to pieces.  He no longer is being looked at for autism or autistic spectrum disorders, he still has seizures, but they are getting fewer all the time.  His chromosome deletion makes it harder for him to learn, but he battles his way through, sticking two fingers to the world who told him he can't, or he won't.  HE CAN AND HE WILL.

Today we popped to the hospital for an appointment, and afterwards we went into a BOOKSHOP.  I think it's quite possibly the first time EVER I have taken Cameron in a bookshop to find a book for him and not Katrina.  He absolutely loved choosing a book for himself, so much so infact he got two.  He showed us today that he can read these books.  The books he chose are from the 6-8 section of the bookshop.  His reading age is 7.  He isn't 7 until June.  I told him he got books today because I loved that he wanted to read, and I wanted to share that with him.  He also got books today because I was so proud of him.  And he replied 'and I am proud of me too Mummy'.  So you should be Cameron.   So you should be.

The odds are stacked against Cameron, with his physical problems, and his genetic problem.  But he is proof that just because you have a label, does not mean that you know a person's future.  I know a lot of people who's children have the same deletion as Cameron, and they are the opposite of him.  While they share the same 'label' the spectrum of issues these children have is massive.  Is Cameron lucky? Possibly.  But he had to fight for it, every step of the way, and he is winning, not only that, but he is happy winning.

A child is the same child whether s/he has a label or not.  Don't let a diagnosis define the person.  Look beyond the label and see the person underneath.  It's not a life sentence.

           Funky dude, SO proud of his 'latex free' gloves that he was given at GOSH


  1. And what a kid there is underneath all the complicated sciencey bit- all credit to both you and Cameron for all the hard work.

    I love the picture at the end :-)

  2. You write really, really well - I love your blog!