#emotions #caring #study #nature #specialneeds #family
Hi everyone , how are you?
This week’s work has been slightly different it began with super hot days , humid night’s seizures and sickness, but has ended with dancing singing and smiles. Going to admit though this week I really felt the tiredness creep up on me. Glad to have my own room and bed back that spare mattress is not the most comfortable thing to sleep on great for laying in the garden and watching the stars though.
So Hayley went home for the week with all her washing clean and dry, all fed and smile on her face. She did say she is going to miss me though, and she isn’t going to be completely without me, I have to go everyday to her with my laptop to do her zoom meetings with the day center.
On a positive they are beginning to sort something out as we slowly open again and move forward to getting back to some normality.
Not quite back to an open day center but out in the community with some of the day center key workers so she is really looking forward to that. We had our first outside meet up with the staff from day center on Friday. It made her whole day.
Great to see if she is able to follow these things when I am not their to remind her, I left her with the staff in the park and went for a walk with my Niki. Came back she was still sitting in her spot with her mask.😀
The other thing about these gardens which I am very happy about is the brand new wheelchair access playground that’s been added since Covid started our town has made great strides in making some wheelchair accessible places.
Next time I go I will get some photos because it truly is something that should have been done years ago, we have had sensory parks added to one of our local adventure playgrounds too that I have taken my kids to.
Now what we need is more adult and older child changing places for those who can’t physically change themselves , to many families of kids, adults with physical disabilities who have had to change those they look after on dirty floors and places that are undignified , there is a massive campaign fighting for the basic human rights to have accessible places build. Which I 100% support.
Maybe they also need to think about parking spaces not only for wheelchair users but designated parking for invisible disabilities too.
Because so many time those with invisible disabilities get abuse for parking in a wheelchair accessible spot, even though they may have a blue badge. Their is still a lot of stigma around all types of disabilities, and although things are taking a huge step in the right direction I think we can do even better. Our benefits system needs a huge over hall with regards to understanding all types of disabilities and the costs associated with special needs, huge waiting lists for things like wheelchairs and repairs, hoists, adaptions, the lists could go on forever I have seen a huge seen a huge influx of parents of special needs kids having to come up with fund raisers, wish lists, asking friends for help. Kids are missing out on that one to one time they really need because parents are just trying to find second incomes start businesses, anything they can to get equipment their child needs to make life assessable to them to give them the best chance and a better quality of life.
Complete change of subject now, I get a little too passionate sometimes about things that are not going to change anytime soon in the way I hope.
Hair colour , Niki gone from pink to purple she looks very cute she is 20 now so she gets to choose most things for herself hair colour is something we go with the flow with a because she is no longer a child and also because she is very creative their is always so character she creates and then wants to be , artistic flair she will sit and draw it design the look , write a script and then the creation begins the hair the make up the clothes down to the minute details eye colour she has all different colour lenses. becoming an author for me wasn’t such an easy thing it doesn’t flow as natural for me but my Niki she just has it its one of her real strong abilities. She even turns her animal crossing character into same .
work with the kiddo’s Friday night was super fun, Hayley came with me but wore a mask and socially distanced from everyone , it’s great practice for her . She was super happy to relax in their Jacuzzi on her own for a while and I think it really helped relax her muscles.
Tom was in such a happy mood every time i tried to put my phone down after photo’s he kept touching phone for more, I finished early after mum and dad got back so am making up the extra hours today and tomorrow, after I do Hayley’s zoom meetings with her. She had a great zoom meeting today friendship club. Dads car decided not to work after he got it out of his parking space so got my muscles out and helped put it back in his coveted parking spot and lent him my car to do what he needed to do. Which reminds me I have to book my MOT god I hope it passes first time. can’t be without a car its so needed for my job, and for my family.
Today with the kids was super fun, music with tom to start with, then took him and Ellie for a walk round the block, I waited away from people with Tom while Ellie popped into shop bless her she put her mask on. She is such a sweetie we took turns in pushing Tom, the one thing that really amazed me was when we got to the crossing in the road toms hand came up to push the button he was so pleased with himself he had a huge smile on his face. I think pushing that button for all kids is a fun thing. I know when we were kids me and my brothers and Hayley all used to fight and race for it we always all wanted to be the leader, think we drove our parents mad. Even our dog Wobbly wanted to be leader of the pack he played dirty though used to bite our backsides if we got in front of him . Whats the saying pets are like kids Wobbly was the biggest kid of all of us.
With Tom’s Mum finally got her to join our selfie. It was a lovely photo great for toms memory book.
Was a little sunny out but nice to get them out for some fresh air .
Little Holly, needs more physical things to do she is a very active person so we went out on scooters for ride round the block and a walk through the woods we got creative together and she was choosing trees to climb and saying how we should capture the shots, she is very aware of all her surroundings, picking out things that shouldn’t be in the environment like dropped litter, aware of the stinging nettles and the wasps. she was great at navigating us all the way home through the woods. Note to self though always wear flat shoes crazy lady on a scooter in heels i have blisters on my blisters, but it was so worth it to see Holly engaged with some of natures true beauties.
Holly is slightly bonkers like me , i love that about her one of her endearing qualities. we both have way to much energy sometimes this time though she wasn’t even out of breath, me though that really got my muscles working hard today my legs are super feeling it tonight.
I had a real beautiful weekend , kind of was off social media for the best part and actually listening to music while doing chores made it go so quickly, also was able to use the canva app a little to get a bit creative for some of my posts, quite easy to use it has a simplistic format not to techie for me.
I know a typo but i like to try and be a little more creative though.
Did I mention the sky today was beautiful plus it rained real heavy I just got this urge to go out and dance barefoot on the grass , Jake got caught up in the moment and joined me in the garden best couple of minutes of the day.
Anyway good night , sleep peacefully , now I have Blogged I can carry on with my study with a clear head.
Much love Faye xxx