#emotions #familytime #caring #seaside
The time has come for another blog, before I start each new one I have to refresh my memory of the previous one I wrote , Gosh I have to really focus on double checking before I post, that is the thing about writing at night sometimes your eyes don’t see the typo’s and things. I put Saturday to good use by Decluttering my emails, clearing the junk folders, putting all the ones I need to keep in folders so I can find the ones I need quickly, its been a while since I did it, 12000 less in there now also sorted my cloud out cleaned up at least 10 GB of photo’s that I now got on my computer, I do tend to take a lot it helps with the creative flow.
So now I have all the relevant documents for Niki’s UC appeal in one place ready to print and send off, Then i can really focus on the blog again and tidy up some of the older posts, Defiantly something I want to get done before I focus on more book writing.
We have Jake’s phone appointment with the specialist this week, last time we had a phone conversation was a while ago now it was meant to be a face to face appointment this time I Guess it changed, they offered a video call but that is not going to work for Jake he won’t go on camera. Hopefully this time he will speak to doctor to we shall see i have told him they will be phoning, it’s a bit harder for me to explain how he feels much better coming from him.
I also have to chase up Niki’s EHCP annual review it was supposed to be in February and they still haven’t got back in touch. Her needs are pretty much the same as they have always been so I cant really add much other then this risk assessment for her walking stick. we are awaiting an appointment for pain management. we went out at the weekend and her hip kept popping it’s definitely causing her a lot of pain when it happens, makes her very stressed.
Last week we were working outside with her potting flowers, Tomatoes and Lettuce for her little garden area at her house, she choose Pinks Blues purple and Grey. My husband is the green fingered one of our house, and they worked so well together.
We also brought her a table , ready for dinner with her boyfriend at the end of May, tuesday evenings and sundays thats their routine of when fred came for dinner she is looking forward to getting that back in her routine once they have waited the three weeks after there second vaccine.
I love being able to encourage Hayley to speak for herself.
Jake and Niki
Family time yes there has been lots of it
Taking Jake out shoe shopping was an experience in itself, he hates it , sensory nightmare for him 6 shops diferent styles and we end up back at the first shop no school shoes black Trainers. Thankfully the school has been accomidating over footwear for Jake and as long as they are completly black no logo’s he can wear them. To be honest he copes better with the unifrom now and actually likes to look smart he just can’t get used to shoes the ones we used to get don’t go up to adult sizes.I bet their are a lot of families and autistic kids that struggle with this like my kids do. we also had a bit of a woopsy moment when he realised he left his new book in one of the other shops thankfully he remembered which one and was able to get it back. So yes shoe shopping is a big anxiety for our Jake.
Hayley also had hers at the same time it was great getting appotiments at the same times less trips for me and they kind of motivated each other they had the first ones together as well.
Hayleys thoughts on vaccine
Now we get to the fun bit Trip to Brighton Beach and the shopping center, Its been so long since we have been to a beach, I think they were excited my kids up before 2pm on a weekend is almost unheard of they catch up on all missed sleep during the week, wide awake and ready to go at 8 am. On a mission to get to build a bear Niki wanted to go there as her treat for working hard at college, their was a specific frog one she wanted I will tell you more in a minute when we get to that bit.
It was Sunny and warm when we woke up We know parking there can be a bit of a nightmare and very expensive so this time we choose to take the train.
We dropped our car off at dads and he took us to the station My hubby didn’t come with us this time he wanted to do some more work in the garden, and potter around at home. The train was pretty empty there price of fare was not to bad, my kids not so little now three adult fares. It is funny really so many different places change the ages to adult at 16 others class adults as 18 and some say 21. Still it was worth the price to get these kids some fresh air and excersize.
We started to notice the weather change as we drew nearer the destination. some lovely views from the train, Niki was drawing anime and Jake was showing her which one he wanted her to draw. it kepted them occupied. Niki always wears her sunflower lanyard for hden disabilities when we go out she made her own fidgit ring thats attached to it it helps when she feels anxious. they loved the trian although you know that moment as one trian passes another and you get that loud air pocket noice jake decided to lokk out of the window at that moment made him Jump.It really didn’t take long we got the trian with least stops.
We took a slow walk to shopping center stopping a few times on the way for them to rest, and to pick up a drink and snack, we arrived at build a bear and there was a booking system which was great we only had to wait fifteen minutes the kids handled wait well had there drink and sat down for a while.
Then it was that time for us to go in i felt a little sorry for Niki she had her heart set on the frog as she collects anything frog, she took a moment to compose herself she was crying a little, I thought it was going to end up a bad experience but she didn’t melt down we got her to choose another one. she choose a rabbit, the excitment wasn’t the same as the other times just because it wasnt the frog but after a while her rabbit had a heart and was made all squishy, and she got to by it an outfit and a little face mask with frogs on and of course glasses like hers. That’s one of the best things about build a bear it has disability aids for the teddys.
She then went over and named it and it got its birth certificate, a new addtion to her family of build a bears, the staff were amazing giving her time to dress it and put it in the box before we left.
She brought herself a couple of new tops. Jake was not in the accepting a treat mode just yet, he is very difficult to let you buy something for extremmely concious of money.But he deserved to have a treat to they have worked so hard on there school work .
Jake had some dizzy spells and Nikis hip kept popping so it was a very slow walk to beach we had all day so it was ok, and we stopped at the waffel house for lunch yes waffels is one of Jakes new foods he will eat, his was plain though, niki choose one with cream marshmellows and sause and me oh mine was so delicous cream strawberries and drisseled with cocolate, the best waffle I have had. we had to find a doorway to sit in because the heavens opened up and all the outside seating was wet. bless him as soon as the rain started he took his coat off and put it round his sisters shoulders what a true gent my son is. He aslo carrried her bags for her.
while we were sitting this lady came over talked directly with Niki about her outfit asking where she got it from as it was her daughters birthday and they were lokking for the same style suprisingly Niki spoke and answered her questions. talk to my kids about there special intrests and they can be very verbal. The shops on the way down to see from were awesome we went in a few book shops, one was selling first editions of some pretty classic books. we didnt stick around long though because there nice clean floor had Jakes soggy trainer prints all the way through.
The beach at last
Brighton is known for its rocks and pebble beach and the pier and the lanes of shops.
The little shops along the beach selling little trinkets shells some little art shops, my hubby had told Niki no more rock collections or shells, see a pattern there my kids are collectors of many things.
Every time you revisit a place you have been before you see it with a fresh perspective then you did the last time you went, sometimes with different people as a child as a teen as an adult one. We walked on beach for a while Niki saying near the top.
Jake though a little more daring wanted to get closer to water and do the stone throwing.
Although he almost went all the way down by himself he came back a little to get me to go with him. Niki waited with the bags. The stones a little unstable for her. we found some where to sit a while where it was empty and looked at stones took some more photos
It is amazing really at just how many different colours the rocks were, was pretty clean beach to no rubbish.
Bit of a tounge twister coming up, A Seaside isn’t a Seaside without a Seagull
One time when Jake went to beach with his grandad they stole his chips and icecream.
Next up was a walk along the pier the acrcades are still closed the kids always love to go in there and try to win teddies and use the wack a mole. some of the rides were open but i forgot to bring cash and there card machines looked very dodgy and old. they were really rusty.
The kids were beginning to get a little tired and grumpy so we mad our way slowly back to the trainstaion stopping when we needed to and of course the local waterstones books shop , finally a treat Jake would accept some books. we were so ready to go home and luckly the train was only a five minute wait again another quite ride , My dad picked us up and took us back to his to pick up car.
Niki went to sleep early pour thing had a lot of hip pain, Jake how ever took ages to go to sleep he was to busy with his head buried in his knew books.
That’s my blog for today, Good Night,Sweet Dreams much love Faye xxxx