Dealing with diagnosis

Life throws at you at its will some people feel they get more shit than others. I feel there is a balance and whatever it is will make you stronger or tip you right over the edge! 

I always say to the kids you get what you get and don’t get upset and by no measure can I be upset that I was given Kodi a child who has autism! I have said since Kodi was born that she was the child  sent to test my seemingly perfect, organised she can do it all way of parenting and that she has. Often we were told Kodi has been here before she knows the drill this time round she is just doing it in her own way.

Over the past few weeks people have reacted in different ways when being told Kodi has been diagnosed. Some sad and sympathetic like she has lost a limb or has an incurable disease that will kill her by the time she is 5!

Others supportive asking questions that some maybe afraid to say out loud. Giving knowledge or advice and just saying “She is still Kodi”

Some people have found it difficult and trust me if it’s that difficult you better leave now as I we can’t hold anyone else up!

Other ASD/SEN mums have reached out to me as it’s a journey we can all relate to a journey that is tough and a journey that often needs fight! For this I am grateful 💜💙

I feel relieved that finally we can move on…. I’m not deluded it’s the beginning of a long journey however it’s also the end of one. Any parent with a child with a condition knows a diagnosis can be a long gruelling process.

First someone has to think there’s a problem, then that person has to convince others there’s a problem (This could be parents themselves) parents then have to get their own heads round said problem and convince others friends family etc Friends and family will use the word normal 100 times and then the fight continues. This is before even seeing a specialist and then everyone involved has to convince the specialist theirs a problem because there is no blood test no walk in a straight line just boxes to be ticked with behaviours that are different!

I’m happy that I can say Kodi has autism rather than Kodi is awaiting a diagnosis of autism and she’s about 150 on the list and probably will be seen spring 2020!

Before I was happy I was in a sad dark place of no hope and almost like a loss for the child I could have had that would not struggle with life’s challenges. I struggled with how I didn’t smoke, breast fed solidly for a year and gave this child the best possible start in life…..

I battled with the fact that she wouldn’t be like other children and achieve what they could. I was baffled by how she met all her mile stones early crawling before 6 months walking at 10 months and clung to the fact she was potty trained at 2!

I soon snapped out of that and remembered that as Kodi’s mum I am her main cheerleader. As Kodis mum if I don’t believe in her how can anyone else! As Kodi’s mum the fight will always be there and if I don’t have her back how can she hold her own!

I then decided to be positive and with positivity comes light. So now if something big happens I want to tell the world because you don’t all see hers I’m her guide and will tell her story. You don’t have to like just scroll past if my “My child is doing” photos and posts bore you! The truth is these lift us up and are often things I never thought she would be able to do!! Each day we take small steps but we are actually climbing mountains.

Kodi struggles with sleeping, eating, currently has restless legs often lacks iron, can not concentrate is easily distracted, struggles socially, has speech delay, squints, needs to feel pressure on her body, is often in a day dream and oblivious to what’s happening around her, she currently can’t have her arms uncovered, sometimes has anxiety and ocd behaviour and is prone to meltdowns from all of the above. Which to the uncommon viewer may see it as a tantrum! Specialists are also concerned she has a small head! A small head which hasn’t grown in almost a year. I think her head is cute and we all know she grew into her ears so let’s hope a small head is not a big problem.

Kodi needs routine, structure, to be told and reminded consistently what she should be doing and should not. Kodi also needs patience, guidance and understanding from those around her.

Kodi is also a little ray of light in our lives she is the most beautiful little girl who grows in independence daily. She has the cheekiest smile and has us laughing daily by her quirky ways! Kodi is different and different is good sometimes I wish I could join her bubble and not be bothered by what’s happening in the world.

I don’t want people to change the way they treat Kodi if she has been naughty she needs to be told off. If she is having a meltdown she needs support and if she is struggling with the day she doesn’t need people in her face! (And nor do I)

I want people to know she has autism so they can be mindful of some of the ways she may react in situations. 

I guess as we embark on this journey we are learning and everyone else is learning with us too. So if you have a question and are not sure that’s ok….

P.S Thanks to those friends and and family members who have provided us with advice and support. 

 

I’m not racist but……….

After the explosion of the you tube video showing a woman in a mindless racist rant last week I thought I’d write a short piece on racism. (I’m keeping it very short)

Whether your black, white, asian, chinese or pink anyone of colour can experience racism it’s not just something done against black people by BNP or NF’s. Racism is on of those topics that gets everyone going last week I saw the you tube video which was being repeatedly posted on facebook and twitter, was I shocked…. Not at all

People may wander why and the reason is simple I’m not blind racism is fully alive in the UK just some people choose to ignore it, even though we live in a very vast muliticultural society racism exists whether it’s outright or in the shadows. We have come a very long way since the day’s of King and Park’s, we are definately living in more harmonious cicumstances as a muliticultural society than our counterparts in America where there is still racial segregation. But yet there is still racism in the UK.

Sometimes people take the racism card a bit far like Tulisa from Ndubz rants at Micha B trying to get her voted off Xfactor and is dubbed a racist!!! She’s not she didn’t call her a black bitch she just had an opinion whether right or wrong spoke her mind race was not brought into it at all!

I’m not condoning the woman ranting on the tram what she said was totally unacceptable and she is just one of many with these views, but if you look around even those you know even some that are close to may have some racist preconceptions. This woman is set to face jail for her very open rant however the somalian girls who visciously,racially attacked and almost killed Rhea Page have been let walk free. Should there not be a flat line rule on racism no matter who it is too?

Girls attack

How many times have you heard “Oh those polish they come over here and take all our jobs?”  How many groups are on facebook so called proud to be British where the people that join secretly wished all non UK/ British Nationals would “Fuck off back home!” How many times have you hear I’m not racist my 2nd cousins friends wife is black/brown/chinese/asian.

The thing with us all going back to where we orginally came from is a funny one as there would literally be no one left we all have a bit of something ethnic in us if we research our heritage properly!

Who remembers back in the summer the London riots where David Starky blamed gang culture on Jamaican patois?? Another racist comment but yet he will still be seen on the TV.

Is there something we are missing in education??? Children are taught about different races, religions and cultures but are they spoken too about racism and why it is unacceptable? Are they taught about how racist views can destroy nations such as the holocaust?

BNP are allowed a place in parliment even though we all know them to be a group that has very racist views, however as long as they speak in a way that is politically correct and don’t use racial slurs they are free to say what they like.

Racism isn’t as bad as it was twenty odd years ago and there are always going to be people that have some form of prejudice whether they personally want to class themselves as racist or not.I don’t know if there really is anything that can be done for us to stop racism apart from us teaching our children that it is wrong and that underneath the colours the paint us we all bleed the same!

Is The Art of Conversation Dead???

I always like to talk about things that have happened to me personally and this week’s topic is no different, but is a very broad subject.

This week I have chosen to talk about our human contact face to face, actual face to face conversations and how technology has taken over allowing us to have these previously precious moments less and less.

Sit back and think how many times in the last week did you actually sit down and have a stimulating conversation with someone that lasted more than ten minutes? I’m not talking about gossiping with friends and I’m definitely not talking about any form of interaction via BBM, Whatsapp, Facebook, Email, Twitter, phone, Skype or any other way you may choose to contact those close to you?

So, here I am lying in bed this week with my husband and when I turn to talk to him I realise he is asleep!!! (He groaned when I said i was going to write about this, he really must be careful in future what he does as I will tell the world) I then update my BB with the question “Is the Art of Conversation Dead?” I wandered if I had I bored him to sleep, but then came to the conclusion he was actually just tired. When he woke up and read my status a while later he apologised and tried to get back on the right side of me, as I wandered some more!!! We both work shifts and between, school runs, after school activities and having a social life, I realised a lot of our conversations are through email, Facebook, over the phone and BB.

Shock horror, my marriage must be doomed, we don’t talk as much as we used too, how can we possibly survive if we don’t communicate? The reality is we don’t have time to sit down and have cosy chats, sometimes ten minutes is all we have before the other one flies out the door on a kids taxi run, errand or work trip. But we are still communicating, just in a different way. Communication has evolved and I guess we have too. In a way, it means that those in relationships have to work that bit harder. If you are spending most of the time having conversations via technology your relationship looses it’s intimacy and when you are together you may not have a lot to say!! They sayVideo Killed the Radio Star perhaps technology has killed the art of face to face conversation?

I’m not going to lie, everyone who is reading this will know, I spend most of my life either with the phone to my ear or updating my BB, twitter or Facebook. I love social networking, I’m a bit of an addict. My sister says we have platinum Facebook membership. Other people’s lives interest me, it gives me writing ideas. I love the gossip and the scandal, but also having the ability to contact those I want to contact with a click of a button. If it was not for social networking, I wouldn’t have started a blog and wouldn’t be able to share what I have to say so widely? Most of my trips out are planned through BB and Facebook. I’m not saying I would not go out if they were unavailable to me, but I will say they make my life easier!!! There are times however when you just want to shut yourself away from the world, I have days when I want to lock myself in a cupboard, but with technology that’s impossible.

This week Blackberry Messenger has died throughout most parts of the world and I admit to being on the “BB Hype”. I was amazed that this could actually happen, no internet, no BB, twitter or FB. What did I do I hear you cry? I picked up my laptop and moved on!! Yes it was quite upsetting, I was more pissed off that I was paying for something I couldn’t use, rather than being pissed that I could not connect with those I needed or wanted to. I actually had a nice first day without it, had a visit from an old friend and went to visit an old friend. Which meant, I was able to get the face to face connections I needed. Plus, not having BB meant people who I needed or needed me, had to use the phone. Social networking and phones do allow us to connect with people in ways we couldn’t before and also makes it hard for people to disapper if they are consumed by the hype that is technology.

In times past some people didn’t even have a house phone and we have to remember, mobile phones only became very popular in the late 90’s. I guess once a new form of technology comes our way we all want to jump on it, some more than others. Over the past few weeks everyone has rushed out to by the new iPhone 4S and Fifa 12 game. But, in years to follow these will be things of the past, as replacements and upgrades become available.

When I was thinking about writing this piece, I started to think about how technology and social networking has affected us in different ways, there are positives and negatives. A positive for me would be:

• You can contact people quickly and easily
• Ordering stuff online saves time (If the post people deliver it)
• You can look up anything you need to know (I love Wiki and Google)
• Computers and TV can be used a learning tools

Negatives would be, that I’m infact useless with technology and usually need someone to explain things to me or get someone to do it for me. I also though about internet dating and how you could arrange to meet up with someone you believe to be gods gift to men but  who ends up to be a complete freak. We also no the dangers of children and young people visiting chat rooms and being prayed upon by older men pretending to be you girls and boys.

I started to think mostly about education, how text talk and slang have affected the way we write. More so for children and young people. Some of the abbreviations people use on texts, BB, Twitter and Facebook are difficult to understand. It took me ages to work out what SNM meant (Say no more) which could easily have been confused with S&M (a form of physical role-playing). It is quite easy as this example shows for someone using abbreviations or slang to be totally misunderstood. If we are forever using abbreviations and slang, when we actually have to write something, we may struggle with words that are standard English.

Just imagine an essay posing the questions:

What do you think Shakespear was thinking when he wrote Romeo and Juliet?

What do you think is the meaning of the story?”

Answer: I think shakespeare was gassed when he wrote Romeo and Juliet. The beef between the Capulets and Montagues was peak. When they died at the end it was mad emotional but I think the moto is, give air to those who your family don’t like to stay alive!

I actually made that up myself. But it could happen and what happen’s when new slang terms and abbreviations are actually being accepted into modern day English? as the following article shows Death of the Cassette

Cassette is going to be removed from the dictionary, to be replaced by more popular words such as Retweet. Those not on Twitter won’t have a clue what this means! My four year old son will never know what a video was, let alone a cassete player. So I suppose we are just moving with the times!!!

When I asked people what they thought about the art of conversation being dead one friend said this:

“Due to Facebook, BBM, Whats App and even unlimited texting, there is hardly any reason to actually call anyone. Apart from your bank, insurance company or anything to do with national insurance. Although, actual spoken conversation’s are becoming less needed, I find that more is said through written word. An example of this is, I didn’t talk to someone as much as I could have and got a letter saying they were in prison. I wrote back and actually filled 3 pages, we actually converse more now than ever. If you look through your call history and compare the length of each phone call to the amount that is said in a text you will see my point. I love face to face conversation as you get to read body language and facial expression. Where as written word can be interpreted in any way and most often is misread!!!”

Which also made me think, I love writing, BB, Twitter, Facebook and even this blog, all allow me to express the way I feel without wasting any breath at all. Sometimes when I want a good rant, Facebook is the first place I go. If people know how I’m feeling, they know to approach with caution, but simlarly if I see a close friend with a sad Facebook status, I’ll give them a ring.  Just to make sure they are ok.

I guess, sometimes written word’s can be more powerful than spoken word. As a realist I like to tell people how it is, however sometimes I don’t think before I speak (Which often offends people!!!)  When writing things down, you have more time to actually think about what you want to say. Like everything, we have to evolve. Keeping in touch with people isn’t that hard it depends how much you let people in. I’ll leave you with this last song by Ksounds Where you at click on the link below and enjoy

Where you at?