#Caring #family #Emotions #birthday #study #EHCP
HI everyone , hope you been keeping well.
Why did I choose this Photo by Naveen Annam , I guess you could say it is because life as an advocate is like one big tunnel each light is a step you have to take just to source and sort the things you need for the people you support, Sometimes its like one long huge never ending tunnel. Just when you reach that very first stepping stone your list gets piled with more paperwork, calls , appointments. many times it is baby steps forward and big leaps back to the beginning step again.
Ultimately decisions are really out of our hands and are in the hands of politicians Really having a grasp and understanding of what is needed to support the most vulnerable people of our country , everything from money to education, disability laws, inclusion, There are many things they get just so wrong and much has to be done to affect change right at the very top.
I definitely sign a lot of petitions for change in the disability, Education and family sector. It is hugely important as an advocate to actively put our selves out their it is our families we fight for.
Well we had Jake’s EHCP annual review different this year due to covid, and all done via phone call and email, it was positive, I mean we agreed his EHCP needs to be maintained a few minor things taken off more things added really for Jakes post 16 education, just checked it over tonight for final check before school sends it off. I am thankful that is now out of the way for another year.
Niki’s UC claim is still a mine filled but we heard today, that she has a good case and it will be sent back to decision makers, You know if I had none this was going to be a big challenge I would of brought it up and had it added to Niki’s EHCP I mean why it isn’t part of the post 16 plan for our kids with EHCP is beyond me. Maybe the disability groups, solicitors, support services and even the EHCP people and politicians should maybe have a chat about this, I mean covid has showed us just how vulnerable families are with out proper support and how it has a major impact on families.
Niki’s Laptop is broke and as soon as her Uc is sorted thats the first thing we are going out to get for her, in the mean time her college has kindly lent her one so she can do her course work, so thankfull to them for that, they are also looking into whether she can use her walking stick at the college I asked them to look into it again as it really helps her for her hips and knees.
So many families are struggling without support that is vital for them. It really gives me writers block having to deal with some of these things, this year especially I haven’t written my blog as much, not because I haven’t got lots to write about their is always lots to share but sometimes it all gets muddled. I love to look at the bright side of things optimistically and write more about the positive side of our family but we go through an awful lot I don’t write about. I don’t want people to think our lives are perfect, easy and unaffected like other sen families because thats not the case. some days are better than others we are more able to cope with the tougher days together in our own way.
Jake has started new medicines for his migraines , and this elimination diet is causing him anxiety, the next few weeks we also have mock exams for him so, think thats going to be take one day at a time but like all kids that have to go through thier Gcse’s this year and next year they really have lots so much time in their education. That it most definatly will be a challenge for them and the schools to deal with, add to that disabilities and anxieties and it won’t be easy.
Thats the tough bit over with now to the bit I love the most, the fun stuff.
Niki helped with setting up the decorations for Hayley’s surprize dinner, and helped making the Cake and poster, Yes Mickey and Minnie Mouse themed Hayleys obsession and special intrest.
While Hayley went on walk on her birthday morning with day center staff i had the task of blowing up ballons and finnishing off preperations and going out to get her some pressies.
And a giant Minnie Mouse ballon.
My hubby helped Prepare the dinner, keeping hayley out of our kitchen when she got back from the walk was challenging, we got dad to come over for dinner too,she was un aware as i told her dad couldn’t come because of covid rules the shocked look on her face said it all the surprise made her day. Dad is part of our bubble and thier were only six of us thier and Niki and Jake didn’t get to close too him, maintained thier distance.
My kids are autistic so socially distancing is not an issue for them they do that anyway.
Hayley got new clothes From mum and dad she loved them, Mum lives in another area so could not be with us and she is also extremely medically vunerable to covid so is still in issolation. But with Nikis help we got her on face time so she could be a part of the surprise and watch hayley do her Cake and open herf presents , we really wanted her to feel like she was with us.
Hayley Loved her cake, and birthday dinner she squealed several times her face when she got another Elf for her collection.
She called her Hayley Elf .She left with dad about 7.30 to walk home with him. so a very successful and happy 49TH birthday for her.
Going to have to write the next part of blog tomorrow as its late here have to be up for school run and work tomorrow.
Good Night , lots of Love faye xxx