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

Written by InnocentCharmer. 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 InnocentCharmer. 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.

Please Stay With Us Mr.Happy

Written by InnocentCharmer. Posted in 2012, grayson, Special needs

Some of you will know that I have struggled the past few months to deal with Grayson’s major personality changes, I am not ashamed to say I have cried most nights (and even some days), it has caused rows with myself and Mr Innocent Charmer, it has caused me to go within myself and to be very self loathing.

Grayson was always no matter his huge amount of problems and trials an incredibly Happy little boy, people would comment everyday that they had never seen such a smiley happy child, we would be stopped in the street, he made the most immense eye contact you have seen and from a very young age knew how to make you feel the most special person in the room.

They thought Grayson was one of the very few special needs children with severe Brain damage that would not suffer with Autism, all for these reasons, then it all changed. I can’t say a certain date, but it started around 10 months ago, the boy who would always smile and giggle, who would play with toys in his own little way slipped away, at first it was gradual but very quickly my Mr Happy become introvert, we lost eye contact, smiles, and then the playing with toys all but disappeared.

So I can not describe the feeling I have had this past month to start seeing a glimmer of my son returning, the smiles are back, it’s amazing, as quickly as they disappeared they one day reappeared, as has minimal eye contact.

My Step Mum babysat Grayson last week and commented on how un-nerved she felt when through a whole meal of feeding Grayson he made solid eye contact and chatted (in his way), so much so she rung me in tears, you see this hasn’t just affected Ashley and I but our family as a whole.

Having a disabled child most days for me just feels like everyday, I know NO different, I had never had a child before Grayson so in a way this is our normal, but I can’t lie having no contact with your child and not knowing what is happening in his head is isolating and upsetting, so to feel a glimpse of my Mr Happy back in my life has allowed me to cry some more, but not just tears of fear (as he may retract back) but of happiness and relief that I feel Grayson is smiling again on the inside and out.

I just pray that he isn’t taken back off of us as quick as he has returned.

A Little Anxious – Yep!

Written by InnocentCharmer. Posted in 2012, grayson, Special needs

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Well finally after being 2 months late as I bathed the kids last night the call came.
28/29th May Grayson and I shall be back in Evelina Children’s Hospital, this time for surgery. Not major surgery. But let’s be honest, any surgery on a 3yo who weighs less than 26lb and has respiratory issues is pretty serious.
So am I anxious about the actual surgery? Not really. This will be Grayson’s 4th maybe 5th GA (not too bad), I for the 1st time have real trust in his surgeon, it’s a routine investigation plus biopsies of his muscles and skin(yuck), so nothing life threatening.
So why am I anxious, this surgery will hopefully give us answers about Grayson’s hips, I am going in hoping they say “bad damage, must operate” awful huh ? But the alternative is worse, the alternative is even if my little boys brain switches on and says “hey you have legs use them” that he won’t be able to, it means that his hips are non treatable, that his muscles can’t be lengthened or extended, it would mean
MY LITTLE BOY WILL NEVER WALK!!

Don’t get me wrong in my head I am not sure he ever will, but that is totally different from being told he physically can’t.

So whoever holds the dice, please for once let my little boy have the right answer. He is amazing, I know he is, so give him a chance to shine.

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