#caring #emotions #book #children #autism #anxiety #mentalhealth #valentines
Hi all sorry for lack of posts my focus has taken a backward turn, I guess that happens sometimes. These last few months have been slightly more stressful, Transitioning to adulthood with additional needs some what of a battlefield with a lack of support out there for this most difficult time.
It kind of throws you back emotionally to before diagnosis when you look for resources and support that really just isn’t there. There is this ever pressing need to sort things quickly so that progress made isn’t lost.
I will talk a little more about this after I share some of the positives that have happened over the last couple of days since my last post, after all I want my posts to be real to what we experience as a family, I want other families to know they are not alone on there journey’s . It’s a mixture of the hard days and the easy, that is just life somehow we always pull ourselves up and try again each new day that begins, someday’s we want over quickly others we hope never end. I always try to start the day with a smile and end it the same way.
Spending the evening before preparing and getting it all looking nice for when we woke up. The kids Wanted to choose presents for everyone themselves they wrapped them up and put them on the back shelf this year was the first year they really got into the spirit of the day.
How our morning started my wonderful son setting a really loud annoying alarm to go off a 6.30 am so he could wake up and with help make everyone pancakes for breakfast, especially a heart shape one for his sister. I wonder if the neighbors got an early morning call that day to as everyone one of our 4 smoke alarms went off. we each opened the small gifts before Niki went off too her placement.
I had to try sort out one of the issues I will talk about later in blog really not something I wanted to spend my day doing. and a real mood killer, I choose not to let it spoil the rest of my day, Jake had the day off as he broke up for the Holiday.
I picked Niki up while my hubby prepared our valentines dinner, I treated her to a pretty dress, just because her boyfriend could not be here to celebrate with her.
Us girls Got dressed and I set the table ready for the meal
Just before the dinner was served Jake disappeared up stairs when he returned he had put on his suit as he said if we are all going to get dressed up he might as well join in .
The meal was delicious , Niki and Jake ate there Own kinds of meals we choose what they like so as not to have any difficult meal time. They ate quick and went up to there rooms, to do their own thing and chat to their friends. think they wanted mum and dad to just chill together. we chatted for ages with music in the back ground. we even spoke to our oldest son on the phone as well. Perfect evening.
I changed my normal Friday shift for other days somethings are just to important to miss by working.
Saturday Night shift with the girls
They arrived with their dinner , all happy and smiley Jake and Niki excited to see them and spend time with them,Holly her Usual Giggly self and Ellie happy to spend time with Jake and Niki.
Jake having sat down and discussed school with Ellie setting her a challenge and giving her some of his revision books. he said to her if she does them and shows him she has done them he will take her for a Mc Donald’s and spend a day with her. He was giving her advise on how to be more focused in class and to make sure she stays in class, because it will help her learn. For Jake who used to be a school refuser I think this is really good advise he passed on so proud he has this new understanding of the importance of saying In class. Niki has been sorting her clothes out and gave Ellie the bag to look through she was trying things on she liked. Jake also gave some of his books to Holly, which she loved looking at and she came across somethings she was learning about in school.
Spending time together
The Girls woke up in the morning and choose pancakes for breakfast you, which Jake loved making again.
Holly loves her fruit she wanted Grapes and orange in hers. They all decided to chase each other with Nerf guns gosh the laughter banging and squeals of delights coming from around the house brought the house alive, Holly came into kitchen and said she got Niki on the bottom and i asked did she tell you to get out of her room, with which she replied yes but it was so worth it. They then had a game of ono just to get them a little calmer the girls both asked for the internet password but a little bit of good old fashioned play distracted them all from the world of devices till the girls were ready to go home with their mum and dad.
Sunday was full on chill day, the only thing we did apart for watching movies was pop to look at paint with Jake as he needs a more grown up style now, slight difference had us leaving with only match pots but having looked at the colour against the wall we kind of went with Jakes choise or will do very soon once the kids return to school. His not so subtle you don’t have to sleep in there, a reminded that our son has found his voice and knows what he wants. Oh the joys of the teenage years.
This week has been full of unexpected changes with my work schedule and Hayley Mondays short shift turned into a whole day thing as the day center had to close due to no electricity, I got the call just after I dropped the kids to school, her bus had not long picked her up and took her into the day center.
Tuesday after dropping the kids at school and doing our food shopping just as I arrived home the day center called again they think she had a seizure and she was complaining of a headache could I pick her up. Thankfully it is literally round the corner from me. She stayed with me for rest of the day before I drooped her home and sat with her till dad got home she was sick, think she had the same bug as dad. Wednesday she stayed home she took the rest of the week, and had the rest of the week off the day center, which fitted in well with her annual medical check at the doctors, the test results were all goo just to have another bone density check and carry on with her weight loss diet the only test that came back a little high this time was cholesterol but she is working hard sticking to her diet now. we also got a doctors appointment made to discuss seizures and headaches she has been having lately could be related to her seizures. the doctor will decide if she needs further investigations. it has been about 12 years since she last saw the neurologist for them.
Now this is what is causing the most worry, not her but the situation around her pip and the drop in other financial support once she turns 20 next month.
But first we had her annual EHCP Monday, my hubby myself and Niki attended and then someone from the college she hasn’t met before why it wasn’t the same person she usually has I don’t know we weren’t told who in advance was going to do it. So right from the beginning the person was looking at there watch and talking about not having much time, he had a a3 sheet of paper with kind of speech bubbles on asked Niki a few questions about how she thinks she is doing,
Niki spoke very quietly which is something she does if she doesn’t know someone but at least she talked, he mentioned she should speak up a bit and that she seems to be a bit of a perfectionist, and worries a lot. she was fiddling with her hands most of the the time only looking up briefly in his direction for a few seconds. he avoided any questions we asked about having her diagnosis put properly on her EHCP and after mentioning them tried to divert the conversation back on to the college part, before mentioning time again, Niki did say she was struggling a bit and could do with more explanation of the work sometime. he told her she needs to be selfish sometimes and ask the teach for help even if they are busy with someone else.
There was one thing i was not to pleased with when he mentioned masking and saying it is a good thing to fit in.
But who does that help because she is academically classed as intelligent she has to hide her anxiety , depression tourettes, how is that good for her, it has a massive impact on her anxiety levels if she pretends it doesn’t exist, now she is learning to channel the vocal tics during the day to tiny physical ones, so that she can do this course. but it was one of the first things she mentioned when she came home that night how that’s not good for her to do that. She already has to leave her stick at home and make do with out it even though it helps her, to be able to do this course. She spent so many years waiting for support and help and diagnosis, to go back to holding it all in like it doesn’t exist. she had to ask to get up an switch the plug switch off half way through the meeting because it was pointing the wrong way.
Masking who does it help really ? the person masking, or the services that are supposed to provide support, so if a person masks and keeps it all inside and manages day to day, but inside they are crumbling isn’t that why there are high statistics of self harm and suicides amongst our vulnerable people with additional needs do we truly have to wait until someone in the public eye tragically dies before it is talked about for maybe a week until people go back to their every day lives and carry on, until the next one why cant we look to where the system is failing and fight to change that.
Now we as a family have got some support in place both financially and academically in place for Niki over the last couple of years, and it is helping her stay in school and on track with her learning, To lose it now would not only be detrimental to Niki and her needs but also can have a major impact on her future.
I personally took a step out of my comfort zone and went to citizens advise for help sorting the fiances and what Niki is in titled too out, they were fabulous , they are going to help with this new complicated system. i had to cut the appointment short because I had to get Jake from school they told me to book a 2 hour appointment at the job center for benefit check up.
That is where it has all gone a bit wrong, and now I am having to go back to the advise center again between the new style ESA team and universal credit team I was put through to god knows how many different departments spent nearly four hours on the phone trying to book one 2 hour appointment with the lady from the advise center on a Tuesday or Thursday when she works there. Finally get through to Job center who refused to book the appointment. This new system is floored and pretty dangerous to vulnerable people and there families. hopefully the advise center will call back tomorrow I have one month to sort this out.
Any way that’s pretty much whats been keeping me busy, plus book networking. and chatting to others who are going through difficult times.
On a real positive end the worry about my dads heart issue is gone now turns out it was a change in medication that caused issue. it is a great weight of worry eased.
Still ending the day with a smile and returning tomorrow with a smile.
We have also been having a sort out here Jake has been helping his dad cataloged his record collection there faces when they saw there first vinyl records. they were both going through the boxes,
These are only a few of a forty plus year’s of collecting to get through listening to Music as we do it, one box at a time, some great classics in there.
Very good memories of his DJ years now the kids get to see the side of thier dad i fell in love with.
Good Night Much love Faye xxx
Here is the link to paper back copy
The Kobo link Ebook
If you do decided to get a copy would really love to hear some feed back or leave a review every copy sold helps me to try and find a new way of meeting my kids needs. Rather then being stuck in a circle of difficult days