Purple Day!

Written by InnocentCharmsChats. Posted in Special needs

6 years and 2 months ago you came into our lives, I knew in my heart you would never leave but doctors tried to tell me different. You came again 3 years ago, this time you were horrible tainting a laugh, stealing a part of my little boys soul. But still doctors told me it was ok.

Last year you came for good, you showed yourself to the doctors, over and over, you shocked them in disbelief, Grayson was tainted with your name, but it was ok, my Superhero fought you, he started to kick your arse and although these last 2 months you have tried to take control again he is fighting you with every ounce of his being because he is AWESOME!

Wonder who this is ?

Epilepsy! 

epilepsy

Today is Epilepsy Day around the world, today the 26th March people all over the world are showing their support for the great fight to stop this awful neurological disorder which effects over 600,000 people in the UK alone, that means 1 in 100 people are affected. Grayson being one of them.

I am not sure I can go into explaining epilepsy, it is so vast, there are so many different types that cause a huge spectrum of seizure types and damage as a result of them.

Grayson has had everything from what I am sure you all think a typical seizure looks like, to episodes that most people wouldn’t even notice including absent moments and hysterical laughing.

For me the Laughing was always the hardest, a noise which should only ever be of pleasure was tainted for us for many months and these seizures known as Gelastic took a piece of our little boy, they changed him forever and still to this day I can not accept that.

Today Grayson has mainly controlled seizures, they thankfully with his medication are not stealing much of him, but that may not always be the case, that is what is scary about epilepsy as it can evolve over night – one of Grayson’s closest friends is in this position currently, in the past year she has gone from a mild occasional seizure to now multiples everyday where she has pure fright on her face, a dreadful fear for us all.

Grayson

So this is why Purple Day is so important! It may seem such a small thing wearing purple today, but it causes people to ask, to question and to be educated, that is why you are here reading our story now and if only one person is affected by what I write or donates a £1 I have helped with the battle to try to  learn how to support those being affected.

Thank you for taking the time to read this post, if you have any questions please ask, we love questions, it’s how we learn and I have to end with saying I am so thankful for the support Grayson has received today online, how he has touched so many people’s hearts, that is a proud Mummy moment for me.

Being a Superhero’s Mummy

Written by InnocentCharmsChats. Posted in 2015, grayson, Special needs

Your smile is the most precious, your heart beats so hard and I am glad that I get to experience it all.

special needs

Mother’s Day gorgeous-ness

My everyday with Grayson is similar to my everyday with my other babies, similar to yours I am sure – actually in some ways honestly it is easier, he never shouts back at me, never screams and cries, never whines about what I make him for Dinner.

Not everything about being a Mum to Grayson is a negative, it is hard to write that at times, especially these last few weeks when at 1.30am I am standing outside my front door chucking sick covered bedding in the wheelie bin and quietly sobbing in my dressing gown, I am not angry though, I am sad for my little boy, sad that he suffers when he really is the sweetest child on this planet – that is a serious statement but I fully believe it.

But with all the negativity that has come from having to be on a ventilator and severe epilepsy there have been positives that are just so outstanding.

My Superhero has finally seen me again, this must sound crazy, he is not blind, but when it came to me he just didn’t see me, I existed in terms of someone who changed his nappy or put Mickey Mouse on the TV but I hadn’t really seen his eyes in years or felt his touch in so long I had forgotten – but with all this pain he is changing, he sees me, he looks at me and smiles, the most amazing smile. He cuddles me, like actually nestles into my armpit and touches my hand, he allows me to hold his face, to kiss his lips. I don’t think words really can make you understand the importance of this. I feel like he knows I am his Mummy again, that I am there and he is willing to share his life with me.

special needs

Best Friends for Life

Why am I telling you all this ? Well other than to be smug as it is my super proud Mummy moment, but it is cause Katie of Mummy, Daddy, Me got me thinking, she made a statement that her and Mr E did not feel they were old enough to have a kid of 4, not as an age thing but mentality wise and I totally got this. The Hubby and I did the same thing only a few weeks ago, we were both in our late twenties/early thirties when Grayson was born, it never crossed my mind that we were not mature enough, then life threw us a curve ball and Grayson and our lives became a whirlwind of hospital stays, loosing him and starting a new life. It wasn’t till this past year I realised what life had really given us, we hadn’t had time to stop and think and I can not believe that I have been trusted with my children’s care, to make them, to caress them into amazingly well-adjusted human beings, me someone who is always tittering with my mental health worries, me who is dealing with a child with such complex needs on hours sleep a night.

But one thing I am sure of, I am certainly not a great Mummy, I am by no means probably the best for my children, but what I am is so deeply in LOVE with all 3 of my babies and I do know that no matter what happens I will forever be by all my kids sides but my Superhero I will forever help you put on that cape!

If you are interested in my life as a Mummy to Grayson and have ever wanted to ask a Question but been unsure, please do that below as I am starting a series of Q&A VLOGS on how Grayson and I work together.

What does the future hold ? I am so unsure now thanks to Legoalnd Discovery Centre.

Written by InnocentCharmsChats. Posted in 2015, grayson, Special needs

I was so upset when I came across and article on facebook this week.

Legoland Discovery Centre in Manchester are refusing entry to disabled adults. This might seem like an odd statement but these aren’t just disabled adults these are adults who have mental ages of young children. But the rules are clear.

Spokesperson for Legoland stated

Our policy not to permit entry to groups of adults, adult couples, or lone adults, regardless of circumstances, who are not accompanied by a child or children under the age of 16 is we believe therefore appropriate and the best way to constantly maintain a welcoming environment for our young visitors.

I have seen this policy at many attractions. to be honest until now I haven’t even taken much notice, but then again I don’t think I would, as I never expected an attraction take it so literal, Legoland are stopping adults with mental ages of 7 and 8 to enter and use the attraction. I understand policies have to be in place but can we not use common sense ?

Legoland clearly can’t and this was their response when questioned about the young man refused entry.

We make no apologies for this policy and believe it to be reasonable and appropriate, and one on which we make no exceptions.

As a blogging friend put it “I’m Gobsmacked, that there is a horrifying lack of humanity.” She then goes on to say in conversation “I only hope there’s been a miscommunication or accidental error of judgement that they’ll rapidly rectify.”

But at present Legoland are defending their actions by stating that they hold adult only evenings. But maybe this is where Legoland are educated incorrectly, because unfortunately although adults in the sense of the word when it comes to age, these men are still children.

I don’t normally try to get on my soapbox about Grayson, I never try to constantly shout and scream about all the inequalities he and us as a family face (and trust me there are many) but Legoland have angered me and even more they have honestly UPSET me a great deal.

It is the response from Legoland more than the initial refusal, I understand staff are made to enforce policies and I honestly thought that is what happened, then to read Legolands response was so disappointing, as a mother who knows one day THIS will be my reality I feel I have no choice but to share Legolands decision with you all.

Grayson at legoland

Grayson currently at 6 years old has a mental age of 1 year, we have been recently told it is looking unlikely Grayson will ever mentally get much older than he is now, Grayson enjoys simple pleasures, Mickey Mouse on TV, a nice simple music toy, a very basic day out, this will probably be the case when he is 6ft tall and 18 years old, he won’t work like his brother or sister, enjoy University, go on thrill seeking rides – so if places like Legoland start pushing policy so hard, without taking a second look what will others do ? What does life hold for Grayson and I, where shall we go, shall we be excluded from enjoying in “normal” places and activities, shall restaurants stop refusing entry ? Will local farm centres be the same ?

Life has such uncertainty for us as a family, I have no idea as he gets older if the abuse in the street shall get worse, how many more people will judge my superhero, but I really did not want to deal with places like Legoland Discovery Centre being so discriminative.

Legoland Windsor was a dreadful day out for us in the past, their policies there made it difficult for Grayson to enjoy the park at all, when I contacted them a few years ago about this they apologised and urged us to attend again stating they had made many changes. Addison has non stop talked of Legoland these past months after seeing an advert, once the weather was better it was going to be our 1st trip, but I honestly don’t know how I can support a company who deal with the disabled in such a way, so once again Addison has to go without due to having a brother with disabilities, this is not far!

What do you feel about the article ? I am open to all responses.

 

Elaine Lewis a mother of one of the men refused entry has started a petition against Legoland Discover Centre to allow entry if you wish to show your support.

Grayson Doing Quite Well

Written by InnocentCharmsChats. Posted in 2013, grayson, Special needs

I thought I would share a quick snippet of a session Grayson did for Communication Therapy yesterday.

He has been failed a lot by the NHS these past few years, he has had no Physio in over 6 months, or Occupational therapy in over 3 months, but my little boy seems to manage what he can on his own merit. He hates all his therapies as they are not consistent and Grayson needs routine to manage with everyday life.

Life has been tough for us all these past months, Grayson at best is only sleeping 5 hours a night, most days we are up with him before 4am, some days from Midnight, they have no way of helping him at present which is torturing for us all, especially on days when you see he is too weak to even perform his normal. But today he amazed me by doing so well in his Communication appointment after less than 7 hours sleep in 48 hours.

I thought I would share for you all to see.

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