30 January 2017

Why I Work For Family Fund

Hello! and welcome to my regular series, Marvellous Mondays. Here I will be publishing positive stories from other people, including my fellow Bloggers. These posts will be positive posts to remind us all on those hard and tiring days that it CAN be better. To give a little insight into other families and what they've achieved, any milestones they have reached with their children or anything that has made them happy that day. 
 
Marvellous Mondays was born when i had a really, really bad weekend with my daughter. It was a Monday morning and I started to write a new blog post about how i was feeling and what had happened. I found that I was making myself feel even worse and so i stopped and turned it into a positive post. It made me feel so much better writing about the The Many Things I Love About My Child
 
Anyone can join in with Marvellous Mondays, If you have a post that you wish to send me then please Email me at lotsofloveandaffection@outlook.com with a subject title of Marvellous Monday's and include a small description of who you are and a blog link if you have one. 
 
I'm really looking forward to sharing everyone's stories with you, and I hope you like them too.
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29 January 2017

Balancing Acts - Special Needs



I am a full time carer to my three children and partner.

I had no idea that my main career would be caring for a family out of the ordinary. I worked in catering from 15 years of age until I had my first child at 22. It's always been something I've been very passionate about and my dream job was to train as a chef. As my children got older I was looking for opportunities to get back into work and continue my career possibly even taking a course at college to train for my dream career.

But as time went on and my middle child's needs became more intense that dream was put firmly to the back of my mind where I can only dream about what might have been.

So I took up bookkeeping for my partner who works in the building industry and focused on that for a few years, it was good to do something different and I really enjoyed it, however I just simply couldn't put the time in that it needed to make a successful career out of it. The business grew and as it grew so did the never-ending stream of receipts and invoices and managing all of this along with a constant stream of appointments and meetings just made me ill. So in the end I had to give that up too.

With a heavy heart I knew that my working career was over. My family needed my time more and I couldn't be successful at both things.

Having a partner and children with numerous disabilities has in effect rendered me unemployable. If I couldn't put the time into my own business there's no way anyone else would employ me. I needed too much time off for meetings, I needed to be constantly available should any of the children's schools needed to contact me and the admin work created by these disabilities was in itself a full time job. The prescriptions needed to be kept up to date, I needed to manage appointment times and dates and reports. I have several folders for each child all organised into school and medical reports. The whole family are looked after by several teams all over the country and I am the only person that can manage all of this accurately.

It's a very difficult job caring full time for more than one member of the family. I have my own health issues to deal with now too, and I often find myself forgetting about my own needs as there just isn't time to look after myself.

I'm not one for New Year’s resolutions but my main goal this year is to try and remember to look after myself. Because I cannot look after everyone else properly when I am poorly, and my main illnesses are triggered by extreme stress. So less feeling guilty for resting, and more time spent making sure I am as close to 100% as I can be so that I don't fail at my only opportunity of a "career" and regardless of whether it's my own family it's also my job too. It's just a shame that one person can only be paid for caring for one person because if I didn't do it, it would cost the government 3x the amount to pay for someone else to do it.

I know first-hand how difficult it is caring for children with special needs anddisabilities so my advice to you if you're reading this is to take a break, look out for yourself and be kind to your body. Don't feel guilty for having a rest mid-day; don't feel guilty for lounging with the kids and watching a film when you've over done it.

Make time to visit that dentist, that GP Appointment you've been meaning to make for weeks. Go and have your eye brows done or your hair cut. Have that long leisurely bath. If anyone offers you help, accept it, and take up their offer. And don't be afraid to ask for help either. There is no shame in not being able to do it all. In fact I'm here to tell you it's actually impossible because that's why I am ill myself.


I tried to do it all.

I made myself poorly so please don't make yourself poorly. You can only do your best when you feel your best.You're a fantastic parent and you need care too.


This Blog post was originally written for and published by Family Fund here: Balancing Acts


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25 January 2017

The Forgotten Carer


I am a forgotten carer. I didn’t choose to be a carer and, if I am honest and I had a choice, it wasn’t on my list of dream jobs when I was younger. However, when you have a child or children with disabilities, you become a carer by default.









Parents like me have no choice in it; it is something that we become instinctively and quite rightly so, as they are our children. I brought them into this world and I will care for them to the best of my ability until the day I die.

When I speak of being a carer, I do not mean the normal things that each and every parent does day in and day out. I mean duties above and beyond those. I am a full-time advocate, fighting battles with teachers and the local authority over my child’s right to a suitable education. When necessary, I battle with GPs and the NHS for hospital appointments and assessments with the relevant clinicians, taking notes on everything. I track dates, make follow-up appointments, submit paperwork on time and keep a diary of important dates. I arrange blood tests and then spend months preparing a socially and mentally impaired child for what will happen. There are dates for everything — I’ve learned to juggle my calendar with military precision.

I am a forgotten carer. As a direct result of becoming a carer by default, I am, in effect, unemployable. I don’t want the benefits that having a disabled child can qualify us for, I want a career and I don’t want my child to be disabled. I am not lazy — I want to work. Sadly, I simply do not have the time to be reliable for any employer. Even being employed by my own company resulted in me having to train someone else to fulfill my role, as I couldn’t meet my obligations in the workplace.

I am a forgotten carer. There is no support, either mentally or physically, for carers of family members that have no voice of their own. Services argue over who should be providing the support that my child needs. Respite services are turned down for various reasons that seem totally unjustified, and when I ask for reevaluations, they move the goal posts even further. Families like mine reach their breaking point and risk simply falling apart.

I am a forgotten carer. Pushed aside and broken, exhausted and stripped to my very core. Friendships and relationships have diminished before my eyes because I’ve lost sense of whom I truly am.

We are forgotten about. And all too often, due to the enormous stress and physical strain that we are under daily, we have our own health issues to contend with. I’ve been diagnosed with several conditions that are triggered by extreme stress. Who will look after me if I end up disabled? Who will look after my children? Will they be taken into care because I can’t fulfil my duty as a parent, let alone a carer? I worry about everything — What if I end up depressed and unable to care for any one?

I am a forgotten carer. I am exhausted. Sometimes it’s even too much effort to take a simple bath or shower. Forgotten carers can feel underpaid. We fit in more than 24 hours’ worth of work into a day, and our shift never ends.

I don’t want to be a forgotten carer anymore. I definitely need some help.

Isn’t it about time that “The Forgotten Carers” aren’t forgotten anymore?

Until that time comes, of course I will continue to go above and beyond. I will continue to push my broken body through ridiculous obstacles and I will continue to care and love my children unconditionally.



This Blog "The Forgotten Carer" was originally written for and published by Autism Awareness. Thank you.







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20 January 2017

A Peek Into The Future Of An Autistic Child 






I often wonder what my children are going to be like when they grow up, I wonder what they’ll be doing, and which friends they’ll have, Will they have moved out by now? Or will they be in a relationship? How they would have managed in their exams, and through puberty and first loves. Will they feel confident enough to talk to me about their problems?  Will we still have a close bond?

Those thoughts run through my head every now again, especially when we’ve hit another birthday and you reminisce about them being babies and how much they’ve grown. Once a tiny baby, their little head fitting in the palm of your hand and relying on you for love, and care.

And as they grow they relying on you less,  gaining a little bit of independence makes you feel like they’re slipping away, each year a little further, by 7 my son no longer held my hand and by 9 he stopped me walking with him to take him to his classroom. Gaining confidence, freedom and determination with each passing of each year.

Its different for my daughter though, she is disabled and is diagnosed with Severe Anxiety, Severe Attention Deficit Hyperactivity Disorder, Microcephaly, Autism and many other things. I still wonder about her future, but I wonder different things.

I wonder whether she will still be so anxious that she barely leaves the house, and whether she will still be living with me, I wonder if she’s able to sleep at night, without waking 20 times, because her sheet is uncomfortable or her pajamas are itchy. I wonder whether she would have learnt that if she pulls the covers back over her she wouldn’t get so cold, instead of screaming until someone comes and does this for her.

wonder if she will have friends, or even a friend. I wonder what her chosen career is and if she is even able to work. When she grows up, will she still have constant pains in her legs from
hypermobility, or will they have improved. What will she like doing, will she still find comfort in lining things up all around the house or switching the lights on and off all evening? 

I wonder if she’s able to live a happy and fulfilled life. Will she be comfortable in the skin she’s in? Will I still be her full time carer?  I am prepared for that, that for the rest of my life I will be caring for her. If she improves significantly with all the interventions that are in place then that would be amazing, but I have thought about the future and how she is able to live independently. 

I wonder whether my children will have learnt to tolerate each other, or even have a simple conversation. I wonder whether her communication will improve to more than it being question based as opposed to reciprocal conversations. Will she still be on medication for ADHD and her significant Sleep difficulties?

I’m just not sure what the future holds for her. Whatever it brings, I will be here for her, through thick and thin. I will hold her hand and help her through any problems she may have, just like I would my son and my other daughter, albeit in a different way. None of my children’s futures are more important than the other, each has its differences, and each path will take them in a different direction, different but not less,

However one will require a lot more preparation, and time. I am prepared for that. Do you ever wonder what the future holds for your disabled children. You’re not alone. We’re right here with you. And no matter what that future holds, you will know that you have loved unconditionally, you have fought like a soldier on the front line, and you never gave up hope. They will succeed because of YOU.




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11 January 2017

Chapter 7 - The nannys Perspective on Autism

A Journey into the unknown
This is my 7th Chapter on our journey into the unknown, so i'm about half way through it now. I hope i haven't bored you and you're still reeading. If you want to catch up and go back to the beginning click the tab at the top of my page - LOTS OF LOVE ACTUALLY - and it will take you straight to all of the other chapters.





Here goes, 
So we carried on, we had to just get through it, My daughter was still up every single night about 20-30 minutes after she's fallen asleep and every half hour thereafter until the early hours. It was awful; I hardly ever had any sleep. Just one night I would have liked, but still she wouldn’t allow Kenny to take my place, she was completely dependent upon me, and then we would wake up and she would refuse and refuse to get dressed for the morning trip to take Stanley to school. My youngest who was 7 months by now was a complete daddy's girl, and its not surprising really as i had very little time.



It was her socks that caused the most problems.

I did not know or understand what I was doing but every time I was putting her socks on she was screaming and shouting and hitting, she would take them off and throw them, it would take us forever to get it right. She couldn't explain either. Her communication was still very limited. And although she was talking in sentences, it was all muddled up, and she could not convey her feelings. She would get things around the wrong way, say things in a jumble. Back to front and inside out, it took me months to work out this sock malarkey, but we have it down now, they have to be just right. Literally perfect and god forbid you don't get it right. I'm glad she learned to do it herself.

Her shoes too, had to be just right, the Velcro, straps, buttons, laces, or whatever it may be had to be just the way she wanted it. In fact she has this pair of shoes (one of many) and if Kenny isn’t here she wont wear them because I cant tie the laces how she like them, and exactly the same on both feet had to be matching, matching laces length matching Velcro length, she would sit there ages redoing the Velcro straps so they were equal, do you know how hard this is to understand and get right when you have a child who uses growling, and screaming for communication? She couldn't say –‘ do it like this mum’ or ‘like that mum’, ‘no I don't it this way mum’ and so forth.
We used to get really stressed and annoyed with each other. If she wanted the music louder she would say “put the music on harder" and things like that.


I noticed I was having to repeat myself a lot, “Lola, Lola, Lola” she never responded to her name, if I wanted her to respond to me I would have to get on her level and talk, she would never look at me though she would angle her head to the side or up high and look above me, like she wasn't listening. The amount of heart stopping moments I've had when I've heard the biggest bang and she doesn't respond to her name, you call and call and call whilst running upstairs to find her sitting on her floor lining up some books. I'm like "Lola why didn't you answer me" to be met with no reply, I just walk away glad she's okay.

That's another thing we’re used to now, her unresponsiveness. We used to think she's just ignoring us. But children with autism, or SPD take much longer to process things, so they need extra time than ‘normal’ children. And even then, if they are engrossed in something they more than likely won't respond anyway. Her hearing was checked lots of times actually, and her attention span was always noted at these appointments too. She constantly needed to be refocused, prompted. But she always had to be in control, always choosing which games she would use and which she wouldn't. Her speech and language reports were the same also, the therapist always reported it was an inaccurate assessment due to her lack of attention and concentration, and she always scored low. At her review for speech and language Lola just passed all the tests by the skin of her teeth, and we were discharged.

Again!!


She was age appropriate for all the tests. However once again, her attention and focus was under scrutiny and her need for control was noted. She had to be in control, even in the Doctors office.

So getting my boy to school was proving more difficult, he was crying on the way in, this wasn't like him, he was always bright eyed and bushy tailed for school, loved socialising. He was getting too difficult for the nanny as well, so now she had to contend with Lola, Stanley and a 7 month old baby. Inevitably the nanny quit, she couldn't cope. Her sick days became more and more until eventually we just decided it best she never returned. She was a lovely girl too, but very young. I don't blame her if I was allowed to quit id hand my notice in tomorrow (just joking)





So now I needed a new nanny, and Kenny's sister came to the rescue. She wrote out a report on Lolly which I'm going to add in here so you can see her from someone else's perspective.




I used to be Lola nanny, I would spend 3-4 days with her a week.
The problems would start as soon as I would arrive at the house, she would straight away run to her baby sister and take food from her or take her bottle/dummy away, because of this she would cry then Lola would pretend to be the adult, sometimes she would just give the item back other times she would tell her sister off.
I always found it difficult to get Lola to sit and finish a meal, she would constantly ask for something to eat but rather than have something at a meal time she would seem to graze on things all day.
 
when it was time to get ready for school Lola would find it difficult to choose clothing, it could be boiling hot and she would want to wear a jumper, sometimes she wanted to dress like a boy and wear her brothers clothes. I was never able to dress Lola in anything with 3/4 length sleeves or legs as she would think they wasn’t on properly, i also couldn’t put a short sleeved top with a cardigan or jumper on top, it wouldn’t just be a case of Lola saying she didn’t like it, sometimes she would hysterically cry, hit me or someone around her or seem to get confused and tell her mum that I had hit her! 
 
Lola would also have a absolute meltdown when putting on her socks if the line wasn’t lined up accurately and would also want to wear inappropriate odd or small shoes to school, if I told Lola that she couldn’t wear them her reply would be to tell me she’s not going to play school or that she was going to tell her mum of me or she would just run off! 
 
Jodie (Lola’s mum) would have to do her hair for her most mornings, or sometimes it took two of us, we would have to chase Lola round and she would scream at the top of her lungs saying it was hurting, we tried different things we got her, her own brush and new hair things, a spray for detangling that we told her was magic spray but still Lola would have such a ordeal just to get her hair done and would often get herself so upset about it. 
 
when it came to the school run there was never a easier or preferred method, if we went in the car the first thing Lola would do is take her shoes of, she would sometimes throw them at me whilst driving, she would take things off her sister and she would constantly repeat something irrelevant, if I answered her she would say "what?" so I would repeat myself and she would ask "what?" again, if i asked Lola to repeat what I had said she usually could so she knew I had answered but didn’t even seem to understand that the question had been answered and move on, this occurred a lot throughout the day every day. 
 
When walking to school Lola would want to always walk the same way, if we had to divert for any reason it would be very difficult to explain to Lola.
 
She had a few points during the walk were she would stop every time we done a school run without fail, I would often find myself collecting her from other peoples gardens, or if she met a stranger on the walk she would stop and stare at them and point, sometimes she wouldn’t say anything sometimes she would. If she took her scooter or buggy she would be quite happy with it every day up until an exact point on the road, if she passed it she would go back to that point to tell you she no longer wanted to ride the scooter or push the dolly buggy. She had no danger awareness and would happily stop in the middle of the road to check on her dolly or untie her shoe, she would be indecisive as well and get half way across a road them decide to run back to the other side. 
 
If I tried to hold Lola’s hand she would start by saying I was hurting her even though I would be gently holding it, she would progress into shouting and hitting and then would melt down in tears on the floor or other times she would run off and I would have to chase her. 
 
She would often shout at me or tell me off as though she was the adult, she would also often hit me in the face, or pinch me, she also used to pinch or hit her baby sister, Lola would get confused sometimes and tell her mum and another time told her auntie that I had hit her but it was Lola that had hit me.
 
I could never leave her unattended with her baby sister, she would try to carry her, take things away or hit her. 
 
throughout the day Lola wouldn’t play with toys, she would either follow me around or she would sometimes ask to "make a party" to Lola this meant spreading water sometimes with a paint brush other times with her hands and feet on the patio.
Lola had a few habits that would continue through out the day such as constantly sniffing, licking her lips, washing her hands, making scratchy noises with her throat and one in particular was constantly changing her clothing, 
 
She would wet herself sometimes several times in one day even though i would ask her at least every half hour if she needed the toilet to remind her but she would always say no and rarely let you take her to the toilet resulting in her wetting herself. If Lola had get bowls open she wouldn’t let me help her wipe her bottom she would only sometimes let her mum but she didn’t seem to be able to do it herself, sometimes Lola would smear it on the wall, sink or toilet seat, most of the time she would come and tell you what she had done but other times she wouldn’t. 
 
When taking Lola to pre-school we would have the same ordeal as the morning school run with the changing of clothing and different shoes, wanting to take a scooter or buggy then abandoning it half way, once at pre-school Lola would play along side her friends but wouldn’t interact with them. If they were all doing something she would copy or mimic them, I can remember at one occasion some children were discussing a birthday party and someone said to her 
"you cant come to my party Lola" 
 
Lola didn’t understand that he had been mean to her and laughed and said it back, other children began to say the same to her but she continued to play along side them and although she looked awkward as though she knew something wasn’t right she didn’t seem to realise what had happened. 
 
She would constantly tell me I wasn’t coming to her party if I told her off or didn’t do something she asked me to do and it seemed to stick with her. 
 
She could also be confused, sometimes she would give me a big hug and a kiss and tell me "you can come to my party now jade" and leave it there, other times she would then change her mind mid sentence and tell me that she didn’t love me and I wasn’t allowed to the party and would pinch or hit. I don’t think Lola fully understands most of what she is saying or what is being said to her as she seems to answer questions with something you may have said to her or that she has heard at school. 
 
Over all Lola is a lovely little girl and can be very loving but also appears confused about how to act in situations or with people, she then doesn’t understand why she is being told of and will mimic you and tell you off.
She is very demanding and likes to be in control of the situation at all times and do things in a routine manner.




I wanted to share that with you because I wanted you to see it from another person’s point of view. I asked Jade to write this out for me in support of a diagnosis, I wasn’t there when she wrote this out and when I read it I was completely shocked, shocked that someone else knew my child as well as me, and had noticed all these “little” things that I was supposed to be imagining. I haven’t read this for a while and it brings back so many memories. There are things in here that even I forgot about, like the constant throat clearing or the sniffing. (Which have made another return in the time its taken for me to re-write my story again) They were all things that Lola was obsessive about, she done it day in and day out and when she’s anxious she licks her lips constantly causing her mouth to go red raw and sore.

Tonight was a long one so I’m going to leave it there for now.

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2 January 2017

A collaboration of SEND bloggers Children's Christmas successes


Hello! and welcome to my regular series, Marvellous Mondays. Here I will be publishing positive stories from other people, including my fellow Bloggers. These posts will be positive posts to remind us all on those hard and tiring days that it CAN be better. To give a little insight into other families and what they've achieved, any milestones they have reached with their children or anything that has made them happy that day. 
 
Marvellous Mondays was born when i had a really, really bad weekend with my daughter. It was a Monday morning and I started to write a new blog post about how i was feeling and what had happened. I found that I was making myself feel even worse and so i stopped and turned it into a positive post. It made me feel so much better writing about the The Many Things I Love About My Child
 
Anyone can join in with Marvellous Mondays, If you have a post that you wish to send me then please Email me at lotsofloveandaffection@outlook.com with a subject title of Marvellous Monday's and include a small description of who you are and a blog link if you have one. 
 
I'm really looking forward to sharing everyone's stories with you, and I hope you like them too.
 
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