Posted in autism and covid19, Emotions

Am I overreacting?

I want to talk about why we now own these two DVDs

I used to love DVDs, movies are a big passion of mine and had over two thousand DVDs not including TV box sets or Christmas films. About two years ago we realised like many other people that they were just gathering dust because we had become more reliant on streaming services which made me a little sad as I had been collecting them since I was about thirteen and finally decided to get rid of my VHS. When I met Dave he too shared my passion for movies and our collection just grew. I remember the last DVD I bought was for Dave for Christmas 2014 and it was The Guardians of The Galaxy. We gave almost every single DVD away, Big Nan got first dibs of the chick flicks, I kept the Disney classic in a DVD folder and the rest went to our close friends.

We don’t even own a DVD player but yet yesterday Dave bought these two DVDs ๐Ÿ˜•

Yesterday was Williams 6 month eye check at the Eye Hospital and as I was working and only one parent is allowed to attend due to Covid-19 restrictions Dave went on his own… I’m getting better at trusting anyone other than myself to ask the right questions now… sometimes. They always struggle to do his eye check as he isn’t fully cooperative, They have told us at the last two checks that everything seems fine but they can’t be 100% sure because he won’t let them check as thoroughly as they would like. Because of this we keep going back, waiting for the day they will discharge us as a patient. William didn’t get to see his Auntie H either as she was super busy.

As a treat afterwards for being a good boy Dave took William into the town centre to get him a treat for his dinner. This usually results in copious amounts of cheese straws and sausage rolls from Cooplands. The boy is an absolute savory fiend.

Anyone that knows Dave knows that he loves his Playstation. Not as much as he love William or Rusty but I think it’s on par with me ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ so he popped into CEX in Prospect Centre to look at some games. This is somewhere that when at the height of my DVD addiction I used to frequent on my lunch break when I worked in the offices above. ๐Ÿ’ฟ The staff have always been pleasant, helpful and friendly.
William is a sneaky bugger when he wants to be, we’ve been in shops when he has grabbed something random off the shelves because it caught his eye and I’ve nearly left with it or when he has started trying to eat a wrapped chocolate bar and ‘ve had to pay for it knowing full well he doesn’t like turkish delight (It’s a good job I do… keep up the bright wrappers Frys ๐Ÿ˜‰)

Dave got shouted at by a woman in CEX.
I will repeat that… shouted at by a woman in CEX.
That’s CEX the most relaxed shop in the world.
‘You’re not allowed to touch!’
‘He can’t touch that!’
‘Covid!’
Now I’m not sure if I am overreacting here but William sits in what is in my opinion clearly a disability stroller. There is a hidden disability lanyard hanging from one handle and a large disc on the other. I’m really angry that they chose to address this by shouting and for anyone but Dave, this could have caused upset or major embarrassment, I speak from experience when I say that on some days life as a special needs parent is one comment, look or cough away from a breakdown. She at this point had no idea if he was planning on purchasing the items or not.
I understand that in the current climate you have to be so careful but these DVDs are wrapped in plastic and could easily be wiped down, We carry antibacterial wipes in our change bag and could have wiped them down ourselves.
I’m also not saying that because William has additional needs that he doesn’t need to follow the rules but there should be at least some modicum of understanding. or a better way of going about it.
Dave bought the DVDs and basically told the woman that was his intention all along despite not knowing William had hold of them as a way of saying fuck you. Mr however I think I would have shamed her, told her loudly all about Williams needs and difficulties and made her feel like an idiot, offered to wipe them down or to buy them if that wasn’t feasible. She could have gone about it in a much better way; she could have walked over and explained to Dave who would have apologised and explained but she didn’t… she chose to berate Dave across the shop floor.
I’m not sure if i’m being oversensitive but I do feel in the year 2020 people should be more understanding before jumping to conclusions. William wasn’t running amok in the store he was confined to his stroller clearly displaying he had additional needs.
If you aren’t allowed to touch the DVDs or Games how are you supposed to read the back to ensure they are suitable? They’ve all been wrapped in the clear plastic, for what reason?

My current writing situation ๐Ÿฅฐ

On a positive note…
Last night William had just had a bum change (not the positive bit ๐Ÿคฎ) and he reached his arms out to me like he wanted to be carried and when I reached down he placed his arm around my neck and put his head on my shoulder. He wanted to give me a cuddle ๐Ÿฅฐ He has never actively cuddled before. He will climb up next to you and snuggle in but he initiated a cuddle for the first time. ๐Ÿฅฒ I cried and ruined the moment because he then pinched my glasses and ran away laughing but it was so worth it!

Posted in Emotions

Shame!

I want to talk about shame and I don’t mean the shame I have spoken about previously in which we blamed ourselves or where we weren’t willing to admit anything was wrong. The kind of shame I want to talk about today is the type others try to inflict upon you for the decisions you make.

And in what I can only describe as in true Cersei Lannister style I am not sorry!

When you open yourself up like we have you kind of expect everyone to have an opinion and believe me the internet isn’t full of sunshine and roses. Its a place were someone can remain annonymous, write hurtful things and suffer no reprecussions.

Our first instance was within three months of setting up the blog, we had no social pages other than our personal ones in which we shared the blog to our friends and family, we were never the type of people to add strangers on our accounts. Within those months things went really well and we gained a few followers, a few subscribes and it felt like we made difference by sharing our story. It was maybe December/January time when I recieved a message.
‘nobody cares’
Maybe you arent trying hard enough to teach him’
you feel guilty coz it id your fault’ (actually spelt coz, are we 12 and limited to characters again?)

By this time we had grown stronger in our acceptance and I deleted it and haven’t given it a seconds thought until now but could you imagine if that was to someone more fragile than us? Someone looking for reassurance or hell even guidance!

Fast forward to May and the wonderful Beth (Check her out here) designed a logo for our blog and our newly established social media pages. A lady commented to tell me about my use of the puzzle piece and how it is a hate symbol for autistic people.
I appreciated being educated but I also felt like I was being told off. Like I was doing wrong so far into our journey and I should know better.
The puzzle piece implies that they don’t fit in, that there is something missing or that they are a puzzle to be solved. Due to the juvenile type of picture commonly used it can also lead people to believe it is something that only effects children. Like its a bad haircut they grow out of.

I absolutely love the puzzle piece symbols which is why it was incorporated into our logo, I see it as a beacon of hope for William. He is a piece of this world that fits perfectly but we just need to find the right place for him. Its not about changing him but how the world sees people like him. To try and make it a better place not only for our autistic children to grow up into but for all children and that message I can imagine is very important to a lot of people.

The infinity symbol is supposed to represent math and a love of numbers, something shared by many people on the autism spectrum (I do think this statement is a massive sweeping generalisation) but not all, so far William has no association with math of any kind so to me this one isn’t as personal to us as the puzzle piece. It is also used signify inclusiveness and the integration of people with autism into general society, since there is no beginning or end to the sign. I just don’t feel anything towards it like I do the puzzle piece. I look at it and think of tattoos loads of people in their 20s and 30s now regret (mines a tramp stamp ๐Ÿคฃ)but I don’t look at it and feel hope, I feel nothing.

And now I bring us to present day….

As a family we have always been open and honest which is why it hit us hard when we struggled to open up about William’s difficulties because it was so unlike us.
There are pictures and stories about me online that I have no shame in sharing and same goes for David. I have always been willing to share my dark days, my good days and days in which I’m just an absolute airhead and say or do something that is just inconceivable for someone of my age and education.

for example here is me in a pair of pyjamas (which at the time I felt were wholly acceptable as an adult) trying to frighten Dave by being a bear ๐Ÿป GRRR

I love and hate twitter with equal measure. I shared an anecdote about how our little boy laughs uncontrollably if you tell him to stop touching his diddle, this was accompanied with a beautiful little gif (check it out on our Facebook page here)
Twitter always opens up the floor for trolls and/or unsolicited advice and 2 men decided to tell me that I should not post these kinds of things because I would damage him when he is older, because facial recognition is soo good now that he will be identified putting a risk to any future employment… Let me tell you something, there are pictures of my passed out drunk in a field at 14 years old and I still have a good job. There are pictures of Dave in drag (as a work event for one of his Saturday jobs?) and he too has a very good job.
When William is able, I expect him to take over our pages and continue to share stories of his life just like we have our own for years with Piczo sites, Myspace, Beebo, Facebook, Twitter, Instagram and many others that have been and gone.

I want him to continue to tell the world and show them how he has grown and how he navigates life, the good and the bad. Funny anecdotes a plenty! If he decides he doesn’t want to or wants it deleted then I am happy with that too.

Much love as always, The Buckley’s ๐Ÿ˜˜