I like winding up in a jokey way the manager of my care facility but I picked her name out the bowl for secret Santa,I wanted to get her something special as she fought to get me a new wheel chair this year from my savings- everyone else kept saying I didn’t have the mental capacity to make the choice.
The wheelchair service won’t give me a new one yet as this one is less than a year old,and it’s the usual heavy nhs style not good when I have periphal neuropathy in my arms,hands legs,feet etc so I thought forget them, I will buy it myself.
The manager has fought for months and months to get me this chair ,and it was officially ordered and paid for last Monday it is a quickie neon 2 active manual wheelchair, I’ve tested it out,it is going to be made to my choices and needs.
It will be purple,black with some orange.😁
So I got her something special for secret Santa I actually went over the £10 max allowed as she deserved it.check out the photo iv uploaded,my cat (he has a immune system disability so looks flea bitten) woud not let me rap it, it NEEDS to be done tonight she is on shift with h me tomorrow.🤭😬🐈 Mr Shadow is now curled up on my knee not letting me badly wrap anything.😆
I know people like me-in care are being focused on in the news,this Christmas as so many cannot stay with our families or friends,but the manager here picks up and takes everyone home during the Christmas period, they really struggled with staffing during covid but they fought to keep agency out, as many of us cannot cope with staff who aren’t in our routine.
Most of the staff here are struggling as so many of us will be home here for the first time so they can’t see their families either.
This is helping me cope knowing I’m not the only one whose routine is messed up,I love my mum and she has had to cope all year with cancer and not being able to get out apart from going to hospital for treatment. She’s going through so much, December for me this year is about being glad for what I’ve got, not unhappy for what I can’t do or get.
I’m also so happy for services like venture arts out there who have got people like me back in the studio,I am so greatful for all they have done for me this year,whether it was loaning me an extra iPad so I coud use it for their zoom sessions and my own iPad for proloquo2go or giving me a care package before the studio shut for Christmas/NY.
So I will finish waffling, is there anything you are glad for? About? This Christmas?
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LDAutie
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Happy. Christmas to you! What a lovely cheery and positive message! You have such a lovely attitude.
My son lives in supported accommodation and this year will be the first Christmas in his life ( he’s 31) that we have not spent together. He is allowed to come home for the day but he’s decided he doesn’t want to since his brother and sister can’t get home and it will just be me and dad. The positive I take from this is that being autistic he has always found Christmas challenging so this year he has a legitimate reason to avoid it! We will miss him but we understand and are glad that he’s not upset.
Wow so awful you can't buy what you want, when you want and someone has to fight for you to get the wheelchair of your choice, from your own money! I hope you get the freedom that you need with your new wheelchair. We got my son a Trekenetic wheelchair when he was younger. He was so proud to sit in it, it was comfortable and when he was out in it, looking like a king, everyone used to remark what amazing wheels it had. It was great.
Hi Everyone! Thankyou everyone for your messages! I was actually going to go around my street with my support staff delivering Christmas cards with messages of support,but there are some thieves active in my area who are making everyone worry about seeing thieves checking out peoples houses and I didn’t want to upset anyone or end up being in someone’s online post-warning others about me/my staff checking out houses (most people here have weird letter boxes very hard to know where to put things).
I will definitely be posting photos of my new wheelie when I get it Emma_Mencap 😁👍🏻 and all who have mentioned it.
HolisticMum I agree with you. I made a poster on canvas about mental capacity-a staff designed the rhyme and wrote the words for me (I can’t write),I posted it on my artist Instagram which the home watches so they knew I was mad at them.I’d love to post it but I can’t add photos during replies, is that the same for you?
I got told by one of the now ex managers I needed a capacity assessment because they did not agree I had capacity and said I shoud not be able to buy the chair,in their mind I shoud only be given the one prescribed to me.
I knew she had a problem with me using a lighter weight wheelchair she has never understood my physical disability (caused by damage from over restraint, viewable on both MRI and a test which shoots electric through you to check reactions,I forget what it’s called)she’s never even worked with me once,only saw me to tell me bad news.
Thankfully she is gone recently.
This new chair will give me some independence and much less pain.
I can’t communicate my pain to them,I don’t show it physically or cry,even if I’m typing “I am in agony”,only my parents and my neurologist who I known for years really understands.
Your sons chair design sounds like it was the wheel/spoke guards that he loved? Big circle things on the wheels? I’ve got these on my new chair,I thought they were great I didn’t know there was a reason for them. 🙂
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