22 February 2017

Why Would You Want To Label Your Child?



I don’t actually, and ill tell you why - I don’t like the term ‘label’ and how it is defined by the people who choose to ask this question.  Its like a dig, an insult, its like they’re implying I want these ‘labels’ for selfish or unorthodox reasons.



Autism is not a ‘label’ - My daughter didn’t get a diagnosis so I could make her wear a signboard of her difficulties.

Attention Deficit Hyperactivity Disorder is not a ‘label’ - my daughter didn’t get a diagnosis so that I could excuse her behaviors.

Anxiety is not a ‘label’ - My daughter didn’t get a diagnosis to encourage people to be soft.

I could go on forever right? Please insert any diagnosis and any theory you may have and then listen carefully. These disorders, disabilities, special needs, extra needs, or whichever other definition you wish to use aren’t labels, they aren’t excuses, and parents like me whose children have these diagnoses are sick of hearing people call them labels. Professionals do it, friends do it, acquaintances do it without any thought or feeling for how this statement comes across to the people it is aimed at.

It is hurtful, it is judgmental, and it is completely unjustified.

People may say, ‘why bother having her labeled when you are doing everything for her anyway’ or “why do you have to label her when the school are giving the extra support’ and ‘what’s the point in a label all it will do is hinder her in the future with prospective jobs or relationships’ It will NOT hinder job prospects, and it will not hinder future relations, My child is who she is and I am proud of that, she will be proud of who she is too, because i will make sure of it.

Having my child diagnosed (which I sought out and fought for might I add) wasn’t for the benefit of myself; it was for the benefit of my daughter and the future she rightly deserves.  Having a diagnosis enabled her to have access to other services she would not have received otherwise. Having a diagnosis enabled me to help others understand her appropriately and begin to use the correct strategies for her conditions. Having a diagnosis has enabled me to be signposted to the correct support groups, and training courses that I wouldn’t otherwise have been able to access. These ‘labels’ do not hinder my child’s future they benefit it. These ‘labels’ are needed for support and understanding. Not having a label will be used against you for obtaining further assessments and referrals. Even though a diagnosis is not legally needed for obtaining support and assessments, you WILL be told this because funding is critically low, and as a diagnosis is proving more and more difficult to obtain therein lies the problem of the merry-go-round service.

Ever heard a teacher say:

“Im sorry, your child is not diagnosed so we cant refer her for this assessment”

Or the Special Educational Needs Co-ordinator say:

“im sorry to be able to have an educational psychologist assess your child they need to have a diagnosis of X, Y, Z first”

Or a Headteacher say:

“I’m sorry we cannot make an application for your child for an Education, Health and Care Plan, because she doesn’t have a diagnosis”

This is NOT true!!!!!

But you see, who are we to question these professionals’ rules? On the start of my journey I was told all of these. All of them are NOT true. Nothing is based on a child’s diagnosis, but to access the support and assessments it seems we need them. Even though this isn’t what it states in the SEN code of practice, it seems that that ‘Label’ is actually necessary.

Please don’t assume that I am labeling my child for other reasons other than to benefit her future, Please don’t think that these diagnoses are pointless, they are crucial for being able to access the correct support, and referrals and other assessments needed to be able to better our current situation and lifetime opportunities.

Do you feel like this? Have you been in a similar position? Please share your experiences in the comments.


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21 February 2017

Anxiety And Me - Breaking The Stigma


Life comes with its very own agenda, one that isn’t preconceived. 
It doesn’t have a set path that it dishes out to everyone, based on their own circumstances, it doesn’t choose who will be fortunate in health and well-being, it doesn’t choose whether you are able to have a family, work, or be happy.

Your life is defined mainly by the choices you make, and that includes some health issues. Mostly though, and this is the case for my family our bad health is in our genes. 
But as we all know life has a way of throwing multiple things at you with such force and ferocity that you have no choice but to juggle these all at the same time whilst still trying to live this life and jump over its forever climbing hurdles.

That is how anxiety took a hold of me.

And that’s how I felt when I realized that I was suffering with anxiety.

Me and my partner have three beautiful children, and two of those are diagnosed with Autism and ADHD, my girl along with those diagnoses suffers with anxiety, hyper mobility, sleep apneas, Sensory Processing Disorder, and a smattering of other co–existing conditions.

Life for us was very challenging, very up and down and a few years ago due to everything unfolding – and not really knowing how to handle or deal with these conditions – very unhappy.

In 2014, my partner was diagnosed with a neurological condition called X – Linked Adrenoleukodystrophy.He may loose the use of his legs, and he may also need lifelong care.

Life just kept throwing these curve balls, and I just kept catching them and throwing them up in the air along with the rest ready to catch them again on their return.
They were just spinning and spinning, and nothing seemed to stop, there was never a break.

I found my life spiraling out of my control.

We had a calendar full of appointments, many that we had to travel quite far too. Many that needed day beds, and anesthetics, lumbar punctures, and operations.
I had hospital reports coming out of my ears, and mostly I found out more in a hospital report than I did in the appointment, which then raised more questions, and requests for more appointments. I was waiting patiently for the postman every day.

I needed those letters.

I needed to read those reports so desperately.

And then my Dad suddenly passed away. My beautiful, wonderful, funny, dad, whom gave his everything when we were children to create happy, perfect, memories that I treasure dearly.

I was grieving and I realized I wasn’t just waiting patiently for that postman anymore, I was detouring on my journeys, after lunch time, knowing the postman’s routine, to collect my letters. I would check the doormat first thing as soon as I walked in the door. I would rip those letters open and be so disappointed if it wasn’t something that I was hoping for. 

‘Its okay though I’m sure it will be here tomorrow’ 

I told myself, and so I would wait again, constantly thinking about these letters, spotting the postman and watching at the window, waiting for him to walk down my path I could actually feel the excitement of what he would bring me.The feeling of despair I felt when he walked on by with a nod of his head was like torture, a deep, painful roar felt throughout my body. I felt like my only purpose in life was to receive these goddamn letters.

I don’t even know when I realized it had become a problem; there were other things, too.
I had no patience anymore, everything was an annoyance to me, and little things like asking me simple questions would be met with intolerance, snappy remarks and sometimes just plain ignorance.

I was also convinced that I had some terrible disease and I was going to die.

I had to sort my family out, I had to tell other family members more about our likes and dislikes, and how our routines went. And if I did die I needed to make sure that my family knew I needed my daughter in a special school.

It was by far the best place for her. I told my partners family that if I did die, someone to have to help him out with the kids because he wouldn’t be able to do this himself he was physically incapable.

I imagined all sorts of things and in my head I prepared for the worst. It was all consuming, I had nightmares, I was so panicked. I was a nightmare to be around. I couldn’t concentrate on anything but these letters.

My hearing sense was heightened too, certain sounds made my skin crawl and I would sometimes scream because it was so physically painful. I knew that for the sake of my family, I needed to get help; I had to talk it through with my GP at least and ask her opinion.
Yes I had anxiety and I was given a tiny dose of anxiety tablets. I have also been referred to Talking Therapies, which is on my To-Do list and really needs to be prioritized.

The tablets help, and I’m glad that I finally went and told them my issues because if I am not 100% then my family simply cannot function.

I don’t believe I’m dying anymore, and I do not detour through my day just for the postman.
It hasn’t completely relieved me of the anxiety, I’m still thinking about the postman all the time, but it has gotten easier. And I’m thankful for that.

P.S I hope my postman doesn't read this....

This post was originally written for and published by Firefly - The Moment Anxiety Took A Hold Of Me

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20 February 2017

Family Fund Takeover Success


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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18 February 2017

Chapter 9 - Trusting A Mothers Instinct




A Journey Into The Unknown





It was Lola's first day at reception and she waltzed straight in, bold and bright as a button, but that didn't last long, and as soon as she realised it was a long term thing she started getting upset and screaming every time I left, which is normal right? Of course it is - she’s only a baby. Some things were normal. Other things were not and once again her behaviour at home deteriorated, quite dramatically. Stanley was settling in well in year 2 and he liked his new teacher, and so did I.






During the summer holidays Kenny had been sent for a cord scan, and the results were back in. We went to the appointment full of nerves and apprehension and I honestly couldn't get cancer out of my mind! We still hadn't spoken about it. It was just there like a third body with us everywhere we went. It was In bed with us, in the car, it came on holiday and when we went shopping this thing wouldn't allow us any space, we didn't know what it was, we couldn’t get rid of it. Nobody invited it to stay but it did. It didn't care that we didn't have time for it, or energy. Apparently it belonged to us. We weren't getting rid of it anytime soon and it was only going to get worse!


Primary progressive multiple sclerosis, is what was (PRE) diagnosed. Going by the symptoms and how long it had been there for the consultant was pretty certain on the pre-diagnosis and suddenly this thing had a name. It really wasn't something we wanted to hear. Id heard about this disease, I knew what it was capable of. This is why my world was crashing down. I could see into the future with just four words. I knew what was going to happen and it wasn't going to end happily and I felt sick right in the pit of my stomach. I actually felt that my body had floated into the air somewhere, leaving this silhouette behind using all my bodily functions, my voice asking questions that my floating body didn’t want to hear the answers to. Practicality overcame me and I needed straight answers, again my head wanting cold hard facts and my heart screaming ‘No this cant be happening they’re wrong I know it’


Kenny on the other hand didn't have a clue. He didn't know what the prognosis was. He was walking out of that appointment blind. I never told him. I just said it wasn't nice. And then I let google do the talking. We walked out of the neurologist’s office in a daze, hand in hand; no words were spoken between us. We didn’t need words. The neurologist had just apologized to us. It was serious. The walk back to the car is a bit blurred. It felt like an out of body experience. Like someone had a remote control for us and we were just doing what was expected.

What was expected? Where do we go from here?

I couldn’t help but think the worst. It was impossible to imagine anything else other than Kenny becoming totally dependent on me, where he the most independent and proud person I know this would kill him. Wheelchair bound, potentially bed bound? I couldn’t get these images out of my head. I was afraid. How on earth could I explain to my children what was going to happen? Every single night that big elephant was back in the room again. I said it was a (pre) diagnosis because the consultant just wanted to confirm things with tests. 

So he was referred for an MRI scan and lumbar puncture.

In the meantime, Stanley got a bout of tonsillitis, so I took him to west call, and a GP examined him, whilst doing so she noticed some birthmarks over his body, and asked if he had anymore. When I said yes, and showed her, she said that I needed to go to my GP and request a referral to the children’s neurologist for a condition called Neurofibromatosis Type 1 (NF1) Again when I got home I googled - even though she warned me not to - and god I wish I hadn't, I was so scared. He had symptoms that seemed to relate with this as I was also noticing some ASD and sensory signs. It wasn't because he was copying Lola, it was because of Lola that I had researched and realised he's been doing things since way before she could. So I now had another member of my family under some sort of doctor.

You'll now understand why when Connie was 2 1/2 I never turned up for her toddler check up. 

Ignorant bliss!


Remember I had to go on a parenting course? Well the time had come and i started my parenting course in September 2013 and I have to say and excuse my French for my parents reading this but what a load of bollocks.

I was not a bad parent! Every technique they'd suggested I already did. This course was not for me but I had to do it, If I didn't I would be taken off their lists. So I carried on. The second week in, there was a note on the door of the crèche saying there was a case of slapped cheek, so I questioned them about it as I wanted to know if it was clean, you see Connie – Mai had a place there whilst I attended the course. They probably thought I was being an overly paranoid but Connie was so poorly, even if I had a bunch of flowers in my house she would instantly have a high temp runny nose and a cough, this is no exaggeration she was seriously allergic to flowers of any kind. I'm not exaggerating. Her pollen allergy was unbelievable. Worse than mine and that's saying something. They told me it would be fine, the case was in the nursery and it hadn't travelled this far, I should have trusted my instincts, which were to turn around and go home. But I couldn't, I had to see this through for Lolly, she needed this - even if it was a ridiculous hurdle I had to jump over, I had to do it.

That night Connie Mai - my poorly little baby started coughing, it came on so quickly, that by Wednesday morning, 24 hours after the course she was covered in a rash and boiling hot. After taking her to the Doctors they said it was viral – As always - She was having maximum doses of Calpol and Nurofen.  She was completely naked and had a temp of 40 which I was struggling to bring down. I was circulating air in the room with open windows but she was very poorly. By Thursday, I took her back to the doctor who again said just viral and on Friday I phoned 111 because she was gasping for breath and she had a rash, she couldn't breath her breathing was very labored. She kept coming up in really weird looking red blotches under the skin. They were almost like scald marks and she just slept, taking little water and not even opening her eyes, she was just laid on me exhausted, lifeless.

At this point they sent her an ambulance, and we were taken to the hospital. She was being sick where her temp was spiking constantly and when we got there they examined her and kept her in for observation because of the rash, she was all smiles when we got there, like they are, and over protective mummy over reacts again. I was on my own because we needed Kenny to pick the others up from school and after a while my mum and sister turned up. I had already told the Doctor that I wasn’t confident enough to take her home and that I wanted them to keep her in for observations at least until late afternoon and she agreed. Once she saw I had other people there she basically forced me to leave with Connie and under pressure I agreed. Stupid mistake, as soon as we left Connie deteriorated once again, and by Saturday morning I took her to the walk in center. She was being sick everywhere from her temp spikes and even with calpol and nurofen her temperature was spiking every hour. So even the medicines weren’t working. It was about an hour and we were seen again and sent home. The journey and disruption had woke Connie and she was all smiles. Typical.

Once home she slept all day, I mean all day, she didn’t feed, she didn’t wee, she didn’t do nothing at all just squirmed around on the sofa, asleep for hours and hours. I had seen over 5 doctors this week and not one of them thought she was of any concern because not one of them could be bothered to observe her for longer than 30 minutes. By midnight on Saturday, I’d had enough; she was practically lifeless and limp. Temperature of over 40 after having both calpol and nurofen and she wasn’t drinking and was not waking up for me. I went and picked my mum up and we took her to A and E where once again we weren’t taken seriously, doctors were just wondering around, not even concerned we were there. She was being sick, burning, and lifeless and some prat of a teenager had decided to take ecstasy and so had 5 doctors all for him. By the time they got to my poor baby, her blood pressure was through the roof! She was severely dehydrated and incoherent, they inserted a canula into her arm and she didn’t even wake up. I was fuming!

When the doctor came around to see her, she was poking and prodding Connie - Mai and sitting her up and Connie was just falling down back onto the bed staying asleep. They ordered tests for her ASAP. 

Meningitis was what they thought. 




Lumbar Puncture is what they were going to do. I was terrified. She looked so tiny. Just lying there in a massive cot all wired up. I’m so thankful that my friend was working that day and I asked her to hold Connie during the lumbar puncture for me as they wouldn’t allow me in there.

Walking down the corridor in those first minutes after she was taken was the 3rd worst time of my life! Remember the other 2? I could have collapsed; all my energy was zapped out of me. My legs went to jelly and I have no idea how I even made it back to her room. Within 15 minutes it was all over and she was back in her room. It wasn’t meningitis. It was tonsillitis! Can you believe it? All that for tonsillitis, if they would have just given her antibiotics in the beginning then I very much doubt it would have gotten that far. Another experience I left feeling very bitter and annoyed about.

So Kenny's results from his brain scan came back clear and we were overjoyed. After talking about it and reading it through we never believed it was Primary Progressive Multiple Sclerosis anyway, Doctors are always wrong they could be with us too? Couldn’t They?












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16 February 2017

Worried About The future?

Excited about the future….

For the very first time in a long while, I am excited about the future. I have found something to focus on, something to get my creative juices flowing that not only allows me to escape out of the gloom once in a while, but has helped me to feel more positive and upbeat about the next chapter in our journey.




Let me take you back a little bit, I am a thirty-one year old mother to three beautiful and crazy children, and girlfriend of eleven years to Kenny. (No he hasn’t married me yet!)

As the title of my blog suggests we have autism in the family, not one child but two are diagnosed with ASC (Autism Spectrum Condition) and the third is being assessed a week on Tuesday. Lola also has a number of other associated disabilities and is currently undergoing some extensive genetic testing to find the cause. Kenny also has a disability, X – Linked Adrenomyleneuropathy is a neurological condition that affects the organs below the waist. He is disabled too and his mobility is seriously impacted. As you can imagine my family life workload is pretty heavy and as a result of this I had to quit my job, as a book – keeper for the family business in 2016.

I have already touched upon my feelings of being a full time carer in my blog post The Forgotten Carer, but it began ……

I am a forgotten carer, I didn't choose to be a carer and if I am honest it wouldn't have been o my list of dream jobs to do when i was younger

Its not that I don’t like caring for my family, I absolutely do, and it feels really good to know that I am doing my absolute best as a mother and partner and providing them all with the love and care that each one of them needs and deserves.

However, there was something missing, something in my life didn’t quite feel finished, I felt like I hadn’t accomplished my dreams, I had more to give, more to do. I was desperately searching for my dream.  I always had ambitions, when I was little, I wanted to be a journalist, or a writer and I went through a stage of wanting to be a chef. As you can I settled for Blogger.

It was no use though this niggling feeling didn’t give up and one night after a long month of sleepless nights it finally hit me.

I wanted to write books, children’s’ books, and literally all at once I had the characters name, I knew what she looked like and I knew the exact storylines.

In the morning I contacted an illustrator because I knew I needed to get this character out of my head and onto paper, I’d even written the first book within a week and the lovely lady who is bringing my books to life has been a virtual friend for nearly 5 years. She knew exactly what I wanted, even by a brief description, and she had worked on her overnight and transformed an image created in my head to a beautiful digital drawing. I had my first character. Lucy Smith is one amazing artist. She got the whole concept of my book, she knew instinctively how she should look, what she should be wearing, what colors to use and my little Bunny’s personality shone through straight away. There was nothing to edit. There was nothing to change. No mistakes were made. She is a true professional and I cannot wait to start this journey with her and see what other creations she comes up with. If you want to check out her other work you can do so here: lucysmithart.com and her facebook page is Lucy Smith Art

The excitement that I felt in those first two weeks was immense, I was literally bursting at the seams and I couldn’t stop looking at my lovely new animated character, which became my screen saver in all of 5 seconds. To be able to have a career of my own actually fulfills me, to know that if I can make a decent income out of writing to secure a decent future for my children makes me feel safe and secure. Kenny isn’t going to be able to work forever and I need to start something that I can do from the comfort of my own home, with no pressure and be able to drop things at a moments notice, because after all first and foremost I am mother, partner and carer – not necessarily in that order – and this will always be my priority.

Over the last two years, from the time I started telling ‘Our Journey’ I have made some amazing new friends. I have been supported by lots of other people from all different walks of life, people from other countries, as far as America and the blogging world has really broadened my horizons. I feel really privileged to have met some of these wonderful people and Rachel MacAulay who is the editor over at Autism Awareness and has her own Blog page https://challaandhaggis.wordpress.com           has even agreed to edit my books for me. Thank you Rachel, you not only publish my writing on your wonderful page, you’ve shared my writing from my own blog helping me reach an amount of people I could only have dreamed about, and you were also there for guidance when I needed you, I haven't met you but I am truly grateful for all that you have done, and part of my success is down to your own kindness and your faith in me.

So without further ado, I want to introduce you all to my gorgeous character Loola, a little bunny based on my daughter Lola, I want you to join me in my brand new adventure, I want to share my journey with you and I really hope you all love her as much as I do.


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14 February 2017

Institutionalising Disabled Children: Why Early Intervention Is So Important.


HOT OFF THE PRESS: Lenehan
 review calls for urgent action.

A review published by the Department of mental health, regarding the care of disabled children and young people is calling for urgent action to prevent these children and young people from being institutionalised at a young age. See the original article here:


I didn’t get the memo sending us back to the dark ages? Institutionalised? A recent article even stated that these children are being moved some 300 miles from their family home because there are no spaces at local care homes.







These children do NOT need 
institutionalising.

They do NOT need locking away.


They need EARLY INTERVENTION.


These children and young adults are our future generations and with the ratio of children being diagnosed rapidly increasing, something needs to change NOW.

Why is it that after all of these years, I am still hearing stories from parents – who are overly concerned about their child’s development – that after referral they’ve been discharged from services and assessments, because their child has shown a certain amount of empathy, or had normal eye contact, or didn’t show any repetitive behaviors?

Why are so many services disregarding parental observations, and instincts based on a half hour meeting with a child they have only known through paper?

When we were first referred to the community pediatricians, we were asked a lot of developmental questions, a physical examination was completed, and some educational tests were done. We were discharged at 3 years and four months, with a child who was:

‘An extreme version of
normal’

We were told to go a parenting course. The consultant was so judgmental, and unhelpful that from that one 30 minute appointment I had lost all faith in a system designed to help and intervene.

My daughter and our family were at this point at crisis stage, the HV actually said to me, that if my Mental Health wasn’t stable she wouldn’t have been leaving me. She was worried for my family an I because of the lack of support and the deterioration in my child’s and my mental health.

Not one single person believed me! I was on my own and that is one lonely place to be.

Eventually things had got so bad that they were forced to refer her again as an emergency and at four years nine months she was finally diagnosed. This is a full two and a half years after I had asked for help.

My
 natural maternal instinct as a mother was spot on.

And it has been each and every single time I have suspected something amiss with her. She now has a multitude of diagnoses, learning difficulties and has just started a special school, which she is loving. I am hopeful for the future. But I am also very bitter that no one listened and we couldn’t get that very early intervention that we so desperately needed. The refusal to assess her early, has led to us missing out on, or a delay in every single service that we may have been entitled to.

Mentally she is three years behind her
peers, but physically she is able. Which leaves her vulnerable in the way she
is treated and peoples expectations of her.

I spent two years of her life researching and googling, and fighting for her rights. Those years we will never ever get back, but it was essential for our future and I would do it all over again if I needed to.





My advice is to do your homework, join
support groups, which can be found in the search option of face book and ask
lots of questions, document everything. Keep a behavior, sleep and food diary - know your stuff. If you go to your appointment where the opening line is
“There’s something different about my child” and no real explanation of this
then expect not to be taken seriously. Especially if your child has the ability
to mask those subtle symptoms. Know what you want, don’t be afraid. You need to
be strong and assertive. I wish any of you the best for future appointments. I
hope that you are taken seriously and I hope that you are successful in getting
early intervention for your child, because in my opinion it is KEY.




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