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.
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
Share's welcome, new authors can do with a little help to get thier work out there
It has defiantly been a bit of a emotional time since the last blog, lots going on good, sad, happy a little bit stressful at times. I should have blogged it out before for now but I would sit with my WordPress open and the words just didn’t come as easy as they usually do, maybe just a little bit of writers block or maybe it is just I am a little tired still trying to shake the winter cold. we have left January and now entering the month of romance and love.
A great month for getting the classic love stories or poetry, we are a week away from the most romantic day of the year. We shared our last one with Niki and Jake, this time I have a night shift but still going to have my little meal at home with my hubby like we do every year simple homely and so me.
Our last One was so much fun its going to be hard to do better this year we always love to include the kids.
I am a hopeless romantic type of person.
I always like to start blogs on a positive and end on a positive then put the more difficult suff in the middle.
So now for the sad part my aunties funeral, it was a beautiful and peaceful send off, just a quite graveside goodby followed by a little gathering at my dads house, I met my aunties Grandchildren for the first time, they handled it so well my cousin I haven’t seen since childhood. I really have been to so many funerals it is hard not to constantly feel sad.the Night and morning before little Jake me and my Mum all prepared the food. I was so proud of Jake because he really wanted to help, even though he found the scents and touching part of preparation hard he didn’t stop. Jakes my sensitive one he is the one who pics up emotions very easy and will be at your side constantly he has a deep understanding of emotions. My little chatter box who likes to talk about how he feels. That has been the biggest change in him since diagnosis,
It was great to spend the couple of days with my Mum and dad too.
My brother his wife, Hayley my hubby and me were there for my cousins and my mum and dad, our children were in school. but they came after and loved spending time together.
So the day was difficult but you also have too celebrate the person she was and the fact she was an amazing mum, wife and Grandma. I truly hope her sad passing on Christmas eve doesn’t affect those nearest too her with sadness but they remember the fun loving side of her.
The other challenges that have come up
Well i have already in previous blogs spoken about Hayley being put on life long services and the day after the funeral was when we had a big meeting with the new team and her day center services key worker, well just as i got back from the funeral i noticed 2 new messages on phone first i thought it might be something with the kids as usually I don’t have my phone on silent but it was actually someone on that team phoning to cancel as the person was in hospital, , I guess we will have to wait again this is not a one off thing you would be surprised how many times this happens .
The other phone call was from Niki’s college wanting to book her EHCP for next week, and that i needed to fill in parent part of the form and bring it to meeting I received it Friday, first of all they never give enough time to properly think about what you want to add in this very important form but the form itself , does not adequately give you much space to write what you need to what needs adding. I hope this time though all of Niki’s Diagnosis gets added to this form and they can actually give post 20 advice because i may know and have experience in bringing up kids on the spectrum but it is my first time supporting an adult on spectrum and that in itself is the thing that i think worries parents the most, how can we continue to have our adult children’s needs met while letting them grow their independence, how to meet there needs and wants at the same time. how to insure the support they need stays, and how to keep the level of communication we need as parents to keep our kids safe.
Niki also had her pip assessment come up which they did over the phone with me this time. we now have an agonizing five to nine weeks wait to see if they will still give this to her or not. It also brings a big challenge to our finances for supporting her ,We have to embark on the universal credit journey due to my income, it worries me the stories of families left in debt by something that is not fully up and running without issues. All parents with special needs kids have to rely on outside agencies getting things right.
This time though I have had to admit to myself I need some help and support with this new complicated system so have booked in with the local citizens advise for help, have that appointment on Thursday i guess i can relax a little when it has been done.
Now that bits been spoken about I can go on to share our Jakes birthday with you all, my youngest has turned fifteen on the 5 th of February.
He had a peaceful but great birthday. Even though most of it was spent at school.
We have used many things over the years to help with anxiety Lego being a big one for Jake especially when he was a school refuser it used to get him through the school gates carrying a small bag to do when he first got to school. it was a self calming technique he made some beautiful things. I just mentioned in passing about decorating his room again and asked what he wanted to do with his shelves he made a huge decision to take his Lego apart and get it ready to sell , it has caused a bit of anxiety doing this and i have defiantly noticed an increase in his jumping another sign of his anxiety , plus he is really saying he feels very sad, although it was his choise I wasn’t expecting it to happen as quick as it did , that’s my kids they they get hyper focused on doing something and don’t stop till it is done, he not only spent 2 nights taking it apart, he washed, dried and colour coordinated it in to bags, Niki helped I helped and his new friends gave him moral support as they have already gone through the good bye of their LEGO and remembered how hard it is to give up something that gave you comfort when you needed it most. It isn’t the first time though he gave something up just that quick he also did it with his chew toy which he had for nearly three years, one day he just didn’t have the urge to chew things and that was it he didn’t use it again. he only occationally chews things now just if he is really stressed.
Night shift last Saturday not my normal working night but a small change in their parents plans had me switching shifts.
I had a great night shift with Hayley and the kids last week , lots of fun with them all cooking , one at a time but they all joined in
First Little Tom made his favorite chocolate cakes
Next up was holly and her fairy cakes
Older siblings sometimes feel left out just because the needs of their sibling.
Hayley was next she choose to make trifle for her Sunday pudding
We then chatted, had a little bit of fun before everyone settled down for sleep.
Thay slept so well
The morning was easy all working together to get ready to go home all in amazing moods. Tom especially happy and cheeky.
Little Tom all chatty
I am continuing to build my author page, social media and promoting book, Slowly it is beginning to come together and I am get some reviews and sales. I am begging to have ideas in my head ready to start the planning if new books, I got my Second lot of royalties £3 not going to make a difference to my life at the moment but maybe it made a difference to someone else’s life for that moment they were lost in the book. that’s why you do it. Why you really want to write.
Any way I seem to have a little bit of my writing flow back tonight, thanks for reading have a beautiful night ,
Hi all, can’t believe I have left such a gap between my last blog.
I have been sorting paper work, appointments and so much out this week it has mess with my flow of though it’s all been to foggy to just write maybe if I wrote each day it wouldn’t all be in my head at the same time.
So now it all starts again this time with a new team for Hayley, long term care she has been moved to so a new disability social worker again, she has had about five in the last couple of years. Hopefully this one stays a little longer
13 hours of paper work was completed on Monday ready for the meeting on Wednesday, this time round there is a lot to discuss about her and her future, it goes without saying that she will eventually, hopefully sometime way in the future live with me full time. But for now things are working wonderfully as they are. there comes a point in life you have to have certain conversations you don’t want to have to think about let alone talk and plan for. but it really is better to have plans in place. I think it is fair to say it is really awkward and uncomfortable to deal with for everyone involved, even though we really close infact because we are all close.
we also have my aunts funeral next week to maybe this gets us thinking so much more on planning ahead for the future..
Although it is again under such sad circumstances I get to meet some family I haven’t met before and see some I haven’t seen for a while. January just seems to drag by bringing with it a new year of things to achieve and sort.
last week started with a beautiful sky
We had a flurry of phone calls first the long term care team, then Hayley’s day center, Then her doctors I wonder why this always seems to happen around her yearly review and no other time. the doctors wanted to get her blood tests in before her yearly assessment and to be honest why it only has been thought of now when it is normally at review then you wait for results, if you get a call that a doctor wants to speak to you about them and you have to wait for a phone call sometimes weeks away, even then that brings with it issues if your caring for more than one person because you have to leave your phone free till that phone call comes in, sometimes you miss it because you are dealing with another important call, and you have to wait again.
The day center called because they are doing bus training and Hayley needs her bus pass renewed which is part of the reason i spent all that time doing paper work, only for them to say they could do it for her through her doctors. we didn’t even receive a letter about it only Hayley coming home saying that is what they will be doing .
The chemist for once had Hayley’s medicine ready to go when I got there with all her medicine there and none owing.
I am not saying this as a moaning thing just that I wished the process smoothed through out the year instead of just around reviews.
This week I helped Hayley , sort her room out a big declutter of old clothes that don’t fit organized the draws so they are easier for her to find things she needs, took her shopping for new shoes and lunch, she loved that we picked the fresh veg from the garden Brussels her favorite and the biggest beetroot which we pickeled.
She loves that Wednesday lunch out we also spent some time going through my photo’s she wanted to put in her memory book.
Niki joined us for Lunch as she finished college for the day
Jake and Niki
Here they are my kids spending time with there mum watching some tv together I love this time with them, Jake had a good week at school got himself some aspire points and star of the week, which he didn’t tell us about i found out from the parents app he still isn’t comfortable was positive praise. He did have a bit of an issue in his catering course when one of the other students decided to put a spoon full of meat on his plain pasta he made. it is worse because his class mates do know about Jakes food issues and phobias, he took the right course of action because it made him feel very anxious he cleaned up and told his teacher he needed to return to the base to take some time out.
Niki started her new placement on Friday after I introduced her she went in ok and loved it. we were waiting for a letter from the pip people so we could go for her assessment and was surprised when they phoned on Friday and did it over the phone, I must say though I prefer it that way only because my kids have been assessed to much over the years and it hasn’t changed the things they struggle with they still have the same difficulties , I don’t like keep exposing them to these things they cause a lot of anxiety. we take things day by day good days, bad days, and ok days. still those daily living skills have to continue to be taught. It is sometimes one step forward and ten steps back I hope that one day they stay and don’t go. I think that’s all any parent really wants for there kids for the things they learn they apply to themselves like they do for others.
So Now we wait for the decision on wether Niki’s pip stays or go’s hopeful that will be in the next 2 weeks so we know where we stand on finances to continue to meet there needs. Pip has enabled my kids the same chance as a child with out issues it has opened up the world for them, it has opened up support for there education, it has opened up possibilities that were lost before. With this support my children have returned and remained in school, and are beginning to be where they should have been before the diagnosis of autism and anxiety. I really don’t want to deal with any more appeal processes I don’t want to have to fight to keep what is really having a positive impact in there learning, I don’t want them disabled by the system again. we all no the system needs a big shake up, a big turn around, from schools to hospitals to care homes , mental health yet the reality is that funding rules everything Funding limits the people that need it the most. Yet the same processes keep being rolled out. I believe in my heart there is some small steps forward just not quickly enough for families who need it, for the individuals that need it.
This is a subject I could talk for hours on but I don’t want it to over take the positives. so now moving on to my positive that’s my Book and family , friends and connections I have made .
Emo The Emotional Elf
I have started getting more inquires about the book, some positive reviews it really has been great to receive feed back
These are the 2 left on amazon this month, I am so pleased with them i am glad it made someone smile and I know exactly what part they are talking about in the book, the health and safety comment I remember thinking about that part of the book and wanted to add these little reminders for the children. I think when writing for children there is a huge responsibility to thoughtfully think what a child would do or copy. so Little reminders not to copy are a good thing.
I don’t just write books , blog, I like to leave reviews and photo’s for places we have been, if they have been accessible for my kids needs, when places go out of the way to make your visits great, and just like blogging and writing books I like to add photo’s for the human touch. One place is I do this on Google maps. it is also a great way to get your work and characters out and about to, to go from and own known to known and loved character.
You have to use and utilize all options out there if you have no funds for marketing, every little helps one person see your work, think outside what maybe the normal way to go.
Then there is the author follow and boost post where you can link with other authors, writers and people in the same boat as you of getting their work out there author lifts. Or encouraging and cheering other’s to take the step to help the think about everything it takes to publish to maybe give advise on what to avoid or what to go for. I always think if you can pass on the knowledge you have learned not only your book will have a impact on someones life theirs may too.
I am going to keep at it for as long as it takes, I am enjoying this so very much.
That’s it for today early start tomorrow good night may your dreams be peaceful and the new week ahead the beginning of something beautiful.
Much love Faye xx
Here is the links to where book is available both ebook and print but really it is good to shop around locally for the best price