Showing posts with label Family. Show all posts

26 February 2018

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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8 March 2017

Rare Diseases - The Shock of Diagnosis

It’s very daunting when a member of your family is diagnosed with a rare disease, Something that there isn’t much awareness of, or research about can be really frustrating for you.

That’s how we felt when my partner of 10 years was diagnosed with X – Linked Adrenomyleneuropathy (AMN) Yep, it’s a mouthful right? We weren’t even told during n appointment, we were sent a letter from the neurologist, and discharged from his services because he wasn’t a specialist in it.

I then done something that no one should ever do when in a situation like mine. I hit GOOGLE. And I really shouldn’t have. It took me to the very worst-case scenario and made me so anxious that I didn’t even tell my partner what this diagnosis meant.

We then had to wait for another team of specialists to pick up his case and explain this to us. My anxiety skyrocketed.

AMN is a neurological disease that affects the organs below the waist, The nerve endings protecting the spinal cord were disintegrating making it difficult for the brain to send messages down the spinal cord. In effect, it was stopping his legs from working properly and causing him severe pain. His mobility and balance and quality of life have been severely affected.

This genetic condition is so rare, that even the geneticists and neurological team are working on experience rather than facts, because there is little evidence of what works, or treatments plans available. Each person that is affected by this is completely different. It isn’t textbook stuff and so the medications used to treat his pain, or balance is trailed and discarded at an alarming rate. Thus far he has been through about 6-7 medications with little or no benefit. Because the pain is neurological there really isn’t a huge amount of options, and we are nearing the end of possibilities to help him have a better quality of life.

As if this isn’t enough, our children are also diagnosed with autism and ADHD, Our two girls are obligate carriers for X – Linked Adrenoleukodystrophy (ALD) So they are closely monitored for any changes in their health even though it is considered very rare for girls in childhood to show symptoms of this debilitating disease.

As the whole family seems to be hit by some kind of genetic abnormalities we have been referred for the 100,000 genomes project, a study funded by the NHS that recruits 70,000 patients of rare diseases and cancers to have their whole genomes decoded and analysed to find specific gene mutations. This study is the first and largest of its kind in the whole world, and could ave the way for future diagnoses and treatments of people with rare diseases and cancers and those who are simply named SWAN (Syndrome Without A Name)

I feel privileged to be a part of the part of the future in this study and hopefully one day there will be more research and text book information on the rare disease that my partner sufferers with so that it can help enable people like him to have a better quality of life.

If you are taking part in the 100,000 genomes project then please join the FB Support group

100,000 Genome Project Support Group

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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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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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30 November 2016

Chapter 3 - The Symptoms

A Journey Into the Unknown

Ok, I'm taking a risk with this next chapter; I'm opening up completely, the truth of how I coped with a very challenging little girl and the awful cycle that we got caught up in. Please remember that this is happening daily, people are so sleep deprived and frustrated that they are not thinking clearly, a dark fog has settled over life in general and nothing is shifting it. I don't pretend to be the perfect parent, what actually is the perfect parent? I'm not entirely sure that one exists. This was a time in my life I can honestly say that I am pleased is over. We weren't being listened to and unfortunately, some people just break. I did break at this point in our lives. I am a much better person for that now though and have learnt from my many mistakes. What I am trying to say is, it doesn't matter whether your opinion on this chapter is negative, I already know that my parenting was failing at this point, so please be kind.

Symptom 4, 5, 6, 7.

At just over 15 months my daughter started walking and beginning to “play” Or more appropriately put, annoy the hell out of her brother. Whenever he was playing, - and Duplo bricks were his favourite things to play with – she would just follow him around wherever he went and she kicked apart or ran off with what he had made.

She would pick up objects and smash him over the head with it out of the blue.

She was very disruptive and violent. When we were in the house she wouldn’t be interested at all in playing with her toys, (Of which she had plenty). She would not be content to just look at a few books or play with some blocks whilst I did some washing or some vacuuming, and she wasn’t interested in any TV programmes. She would rather do the housework with me and followed me everywhere. Even if I sat down to play with her or read her a book, her attention span was so limited she would just run away and find out her brother again and become violent to him.

He started to avoid her.

She would bang on my bin with wooden spoons; she would get tissue paper and stand for ages wiping the condensation off of my windows. She would lick them. In fact, she used to lick a lot, She would spit all over herself when she was frustrated like a dribbling type of spitting and her growling was awful.

Symptom 8

She used some words when she was little, not many but she could say 'mumma', 'dada' and a few others, but by the time she got to between 18 months and 2, all I heard was grunting, screaming, scowling and the most prominent noise she used was a growl. You knew when something was wrong because all you could hear was her growling at someone. There were hardly any words anymore. She had regressed and I didn’t know it at this point but children regressing should have been a big red flag where there is a concern for autism. Still, at this point, I didn’t even know a lot of the symptoms. I mean, I had read about it, but just knew about the symptoms listed on the websites, and not the ins and outs.

At some point, I said to Kenny, “I’m going to the doctors with her, her behaviour isn’t right." She was different somehow. She didn’t understand right from wrong. Nothing had meaning to her. I tried the naughty spot; I mean, we were there for two weeks and still it was taking 100 times to get her to stay there and even then it was only because she had fallen asleep.

So we gave up.

I think she was about 2 years when I finally went to the doctors about her behaviour. I had taken some online autism quizzes, I had read up about autism, A LOT. I went in there and I told the doctor all about it. We had already had two diagnoses in the family by now, one with classic Autism and the other with Aspergers. I told the GP the family history and all of her symptoms and the challenging behaviour she was displaying, and actually saying it all out loud to someone was a relief and I didn’t realize how long that initial appointment would take. I felt stupid though, she was smiling, she listened, she did some things I asked of her, and she was social. But I just knew in my heart that it was deeper than those things. And then the GP listened to her chest because she had a cough and I asked him to make sure she was ok. At this point, she was restless and just wanted to become the doctor. She took his stethoscope, which he happily gave up, most probably for his sanity and she climbed on his lap, pulled up his shirt and started listening to his chest, I was so embarrassed. She was overly social. So the Doctor listened, but wouldn’t refer us to CAMHS (Child and Adolescent Mental Health Services) - he said it wouldn’t be fair to send a child this age to a mental health service because it would stay on her record for life and he didn’t want to hinder her future. It scared me a little, so I agreed and just went home a bit confused. Was he saying she was mad? I didn’t quite know but anyhow we were referred to the Health Visiting Team who was going to come and pay a visit and spend some time doing some observations on her.

Symptom 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, & so on………..

So at this time, I was pregnant again with my youngest little girl. It was about March/April when the health visitors started visiting so I was about 20 weeks pregnant and I was absolutely shattered. Worn out to my very core. Kenny would walk in the door at 5pm and I would hear his key turn and I would quite literally be passed out by the time he walked through it. He would have to do dinner and bath and bed. I used to nap in the day too. How you ask me? Well by this time she had an obsession and I love this video so I’m going to share it with you. It was a 20-second video of her singing 'Baa Baa Black Sheep'. Or trying to! It’s the cutest video in the whole world. But I would give her my phone and she would play it over and over and over again for about an hour. If she couldn’t watch it she would breakdown, there was something about it that grabbed her attention so much that she was never satisfied unless she had watched it dozens of times.

(Excuse Stanley calling her stupid at the end of this video)

She was so full-on at this point, all her and her brother ever did was argue (nothing changes) But I tried to help him understand but he was only little. I shouted a LOT at this point. I’ve never smacked my children. But I used to lose my temper with shouting badly. All day every day all I did was scream at them. I hated the sound of my own voice. I hated myself. Every time I went to bed I would spend at least an hour beating myself up for shouting, thankfully I have learned from that now and I’m a much better person because I understand more than I did before. I’m not a perfect parent, yes I shouted, but I love my children unconditionally and I was so sleep deprived that it was torture. I was heavily pregnant and very, very tired. My eldest boy had withdrawn from me completely at this stage. I had alienated him. He was put second. She was first. Everything I did it was for her to keep her calm, to stop her screaming. She screamed and he got told off! I couldn’t help it; I was in a really bad cycle. I thought he was intelligent enough to understand. He was. But I shouldn’t have dealt with it this way. He may have been intelligent enough but he was a kid too. He wasn’t allowed to be himself. He was trapped inside a house with a pregnant, screaming, neurotic mother and a wild-child. Says it all really doesn’t it? I will never forgive myself for him losing two years of what should have been fun, memory making, exploring the outside, free, years.

I couldn’t breathe. I was lost!

She was a lovely health visitor and so kind. She could see that she was hard work but openly admitted she couldn’t pinpoint anything particular because of how social she was. She was so social. When the Virgin Media engineer came round to install the TV she asked him if he had a willy. Then when he was leaving she asked for a kiss. I just had to explain to her that he was a stranger. She didn’t have a clue she had tuned out and was bashing Her brother again with the brand new remote.

She used to ask people a lot if they had a minnie or a willy. I’m not quite sure why. But looking back maybe it was a literal thing. When she was first noticing her brothers’ body parts were different I had explained that boys have willies and girls have minnies. Maybe she was just wondering if it was a boy or a girl! She used to get too close to strangers when talking to them and really stare at them. I used to have to move her back a few paces, and she did this with her friends too. She is still the same, completely unaware of personal space.

She had become very violent by now. She rarely hit me anymore though. I think she knew I was the one and only person who knew her and was able to get her or do for her what she needed. But one day as we were playing on the floor she was quite happy but she switched very suddenly and stamped on my belly! It was excruciating. I was so upset. I had had miscarriages before so It made me really, really paranoid. Most of her violence was aimed at Kenny and she used to punch or slap him around his face so hard. One time I saw it and I realized why she was doing it. It was because when he was speaking to her he was on her level looking her directly in the eye. It made her uncomfortable. No one should ever make anyone with autism look them directly in the eye unless they want to. I don’t care if they want respect or whatever it is you just don’t do it. She didn’t like it. He was invading her space and at this time her eye contact was sparse. He stopped doing it. She stopped slapping him. And actually, her eye contact is brilliant now unless she’s having an “AUTY” day. Sometimes she can appear normal to us and other days it's so obvious it's unreal.

So the Health Visitor came and listened and watched. She played games with her and all she wanted to do was take her notepad and pen and draw (again, nothing changes).

Eventually, after about 9 months she referred us to the paediatrician.

But she said a definite NO to Autism.

She had her own special routines she liked. It wasn’t anything specific in the day-time but our bedtime routine was very specific. I would give her a bath, put her pj’s on and get her milk. Then I would lift her up and do ‘rock a bye baby’ and when the cradle fell I would drop her into her bed and say good night kiss and then immediately leave the room. God forbid I got any of that routine wrong because we would have to start all over again and she wouldn’t be getting to bed for hours!! This was when she was still in her cot. At 2 ½, by the way.

She has severe sensory sensitivities. She hated her hair being brushed. Would scream so loud I was worried my neighbours would call Social Services. Actually, I’m surprised no one already has - she has some lungs on her that girl. I mentioned to the health visitor about her hair and she decided to test it. Bearing in mind I'd already done it so it wasn’t knotty, And she’d given Lola her pad and pen so Lola was in role-play heaven. She proceeded to brush her hair, and I swear She did not even murmur!!! Geeesh give me a break eh?

Her sleeping habits had properly deteriorated by this time. There I am, just about to drop at 9 months pregnant, and she was up and down all night screaming. She couldn’t communicate with me. She didn’t know what was wrong with her. But she went to sleep fine, out like a light and then 20 minutes later she was up screaming and this lasted until well into the early hours. Again I just bloody well got on with it, maybe I was still on auto-pilot at this time? Who knows, but after a while, it got to me. I started getting ratty at her in the night. I was like a walking zombie. That didn’t work. So I just held her and laid her back down when she was asleep again. Half an hour later I’d do exactly the same thing. For months and months and months I had not had one full nights sleep. Kenny couldn’t see to her because if she even heard his voice in the middle of the night all hell would break loose.

So we were referred YAY!!!

Surely the proper professionals would see what I saw?

Wouldn't they?

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