So that’s what they meant…

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So, now I know what they meant. All of those parents on the forums, support groups, pages and websites that I endlessly trawled through after George’s ASD diagnosis, I finally hear you.

‘Don’t give up fighting,’ they said, ‘You’ll have to fight for everything,’ they said. ‘It’s all a battle, but keep fighting until you get what you need.’…

I remember having a conversation about it to one of my closest friends Lizzie in her kitchen, baffled as to why other parents of children with Autism were using such negative words, fighting and battles connoted anger and pain. Were they being dramatic? I shook my head and blocked it out, and told Lizzie I just couldn’t understand it. I was a new Autism mom, and I was naive.

Think positive, be positive, stay positive.

I even wrote a post about accepting a diagnosis and remaining positive. The truth is I was, (and still am), in the early stages of my sons life. He was diagnosed at 2 and a half, and now he is  6. I hadn’t lived through it, yet. George was 3, he had his quirks but he passed as a typical child and went through nursery and preschool without a glitch. But today he has started an Autism specific school, and I realise that up until now, I’d been in denial.

I refused to acknowledge those parent’s comments and advice because I refused to allow our life to be like that. Who wants to spend their life in one long fight? So I ignored it, turned the other cheek and got along with life.

Last year, George started his school journey in Reception in the mainstream school across the road from our house, the same school his sister goes to, she’s 2 years above. We enjoyed those walks to school together, the three of us, in winter coats and scarves or polo shirts and sunhats. They had a year together in the same playground, and for that I am extremely grateful. It didn’t take long to see how different George was to the other kids. He withdrew from the classroom and wanted to be in the corridor where it was quiet. He liked the quieter area so much that he completed most of his work out there with his 1-1 TA. They supported him beautifully, he had his desk, his timetables and symbols to remind him what was now and what was coming next.

But I realised as I looked at his little work station in the corridor, separated from the classroom, that his inclusion in mainstream education was actually excluding him.

He wasn’t in class, completing his work next to his friends, talking about his ideas or trying to copy someone else’s. He was on his own, aside from his TA. But he seemed happy. We began the search for a more suitable school, one with smaller class sizes that he could be a part of, less commotion and distraction, and expertise on teaching children with ASD at a whole school level. Once we found that, he would do great! If only it were that easy…

We live in Sandwell, and soon realised that specialist provision specific to autism was non – existant. We visited schools for children of mixed disabilities, only to be told by the headteachers that they would not be able to stretch and challenge George and work on his strengths. He was exceeding his age related expectations for reading and technology, and in short was achieving at too high a level for any specialist schools in Sandwell to be able to meet his needs. We’d been given 15 days by the LA to put in a request for a more suitable school, and time was running out. I had to quit my PGCE (I couldn’t keep up with the workload while visiting schools and making decisions about my son’s future education) and became stressed and anxious that I  wouldn’t find the right provision. Until I looked out of borough.

We found a perfect school, ASD specific, in Birmingham. It could meet all of his learning and sensory needs, and is closer to our home than any other specialist schools we had visited in Sandwell. But we were refused on the grounds of it being out of the Sandwell area. We’ve fought to get him a place, paid hundreds in private assessments and reports, and eventually we were given his place, just before a tribunal hearing was due. It was a long, exhausting and stressful battle for an education that he clearly needs. But now we have the school and he is part of a class with 9 other children 🙂 he is happy and relaxed.

LA provide transport for the children to arrive and come home by mini bus with all of their friends. But guess what? They’ve refused! Another day, another appeal. So that’s what they meant. To those parents I didn’t understand at the start of our Autism journey, I now know  exactly what you meant.

Thank you for the advice. Keep on fighting. We have joined in! xxx

Accepting a diagnosis: The ASD minefield

bob_the_builder1             ‘Not today, Bob!’

I thought I was prepared for George’s diagnosis of ASD. I’d read countless articles, scientific books and educational journals, Temple Grandin’s Thinking in Pictures and endless blogs by parents who were going through the same thing as me. I felt confident that I was armed with enough knowledge to equip me in taking Autism head on. And in many ways, I was.

It was a relief to hear the Paediatrician confirm my suspicions when George was just 2 and a half, (he is now turning 5). I’d learned that an early diagnosis was important; it meant he would now be able to access the professional help that was beyond what I could give him alone. I felt sure that this official ‘label’ – as it is quite often referred to – could only be a good thing, and I looked at his future in a more positive light. What I wasn’t prepared for was the sympathetic,  pitiful reactions of others when I revealed that George is Autistic.

Here I was, full of relief, knowledge and positivity, yet we’d get  ‘Oh what a shame, poor thing’. I found it all quite baffling, and soon realised that the general attitude towards Autism was a negative one.

Slowly it began to dawn on me. Not everyone had done the research. Most people were clueless about Autism, and who could blame them? I was too until it became part of our lives. So I decided not to let the negative attitudes get to me and instead focus on how I could include George in ‘normal’ activities and break down the barriers in our communication. I turned to other parents in online forums in the hope that they would empathise and understand. Most offered some great advice and pointed me in the right direction for therapies and strategies that have worked for them. But I also came across an alarming number of websites and group pages dedicated to ‘curing’ their children of Autism, promoting products as some kind of miracle potion.

The difficult thing about Autism is, there’s no guidance on the best therapy or treatment, there’s there’s no medication or miracle ‘cure’. And some parents can’t accept that.

It’s a sensitive subject. Parents instinctively want to help their children, whatever the cost or personal sacrifice. Services and support can be slow and hard to find. Professionals confuse with their jargon and referrals. But its difficult to maintain a positive attitude towards Autism if you’re constantly looking to ‘fix’ it. Why should a child be fixed to fit others’ perception of what is normal?

Instead we as parents, teachers, family and friends, as communities….as society, should adapt, adjust, evolve.

To fix something is to suggest that it is broken. My boy’s not broken.

He’s beautiful. 

🙂

The Rise of the Freelance Stylist

 

Hairdresser Mug I May Not be God But I Can Work Miracles on Your Hair Ceramic Novelty Present Gift Funny Cup

‘Mobile hairdresser’ were dirty words in the peak of my career as a salon stylist. I’d instantly conjure images of an old-fashioned, out of touch lady with nicotine yellow hair, offering bowl cuts, cap highlights and the blue rinse. But fast forward ten years and here I am, eating my hat. Now I’m one of those hairdressers, only I prefer to use the word ‘freelance’. More and more clients demand services at home, and freelance hairdressing has risen – now a trend with a far greater reputation than it had in the early naughties.

One of the reasons for the rise of the freelance stylist is without doubt the growth of the internet and social media sites. Allowing easier and faster interactions with potential clients, and with the ability to advertise and promote your business via Instagram, Facebook and Twitter, we thought online networking couldn’t get any better. Well it did. If the above wasn’t enough to boost your business, you can now access training from first-class professionals in the hair world such as International Hair Colourist and Educator Jack Howard.

Renowned for bringing Balayage to the U.K, Jack offers in-salon masterclasses in the latest free form highlighting craft (Balayage, the French word translates as ‘to sweep or paint’) . With his advice on establishing your business presence on-line, stylists across the border have more flexibility than ever when considering their career status; whether it be behind the chair in salon or on the road working freelance.

I had the pleasure of meeting Jack for a Balayage workshop organised by long time friend and fellow freelance stylist Kerry Edwards. Jack – who has worked on celebrity heads such as Poppy Delevingne and Donna Air – came to Fallen Saint salon in Birmingham to share the secrets of his domination and was met by five eagerly awaiting stylists: one salon owner, two freelance stylists, a student and a hairdressing assessor. He was cool, relaxed and easy to chat to, giving just the right balance of demonstration, theory and practical to cover every angle, not forgetting to address those niggling problems we hairdressers sometimes face when working with colour.

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For me, as a very busy mum of two – freelance hairdressing has allowed me to work around my family commitments, earning money in those gaps of free time between the school run, assemblies, sports days and extra curricular activities. I’m very fortunate to have built myself a successful business with loyal clients and the ability to strike a healthy work/life balance after having my two children. That is not to disrespect those who work in salons, I appreciate the salon environment and stylists work hard. I miss the company of colleagues and the salon buzz on busy Saturday afternoons.

But I much prefer choosing my jobs, choosing my days/ hours of work and providing a great service at a reasonable price.

True, you may not get your hair washed in as much comfort as you do in a salon (unless you’re a stylist who has a basin fitted at home – watch this space!) but you DO get to sit in your warm, comfortable home with a stylists time and attention devoted to you only, and at less damage to those purse strings. What more could you ask for?

The jury’s out.

 

To summarise, here’s  3 ways YOU can rise as a freelance stylist! 

1. Work the web – promote yourself on Facebook, Twitter, Instagram , Pinterest. Create a website, keep it up-to-date! Post regularly, showcase your work.

2. Refresh your skills and stay current with training days, workshops and practice! I’ve talked about Jack Howard here but there are training days on offer at all hair suppliers – Aston and Fincher, Sally‘s and Capital hair and beauty to name a few.

3. Keep within the network of salons and other stylists, it’s good to hear about new developments and products in your location, and great to attend specialist workshops such as Jack Howard‘s.

Five signs your child may have Autism

One question I am frequently asked by other parents when they discover I have a child with an ASD diagnosis is,

‘How did you notice?’

My answer is never all that straight forward; in our situation it was rather a combination of symptoms and behaviors that caused concern. Because Autism is a spectrum disorder of the brain, the senses are significantly affected and this can vary in severity with each autistic child. Some may be severely impaired in communication, others can have sensory issues. Everyone’s story is unique and different, just like their child with Autism!

So to attempt to answer the question, I’ve outlined the five signs that prompted me to ask for a formal assessment:

1.  Speech delay/ disordered speech

George’s babbling continued until around two and a half. Despite not being able to use words functionally, he could recite ‘The wheels on the bus’ word for word. He could also repeat lines from his favorite cartoons such as Peppa Pig (known as scripting or Echolalia), yet he was unable to verbalise simple basic needs such as asking for a drink. Instead, George would take me by the hand and lead me into the kitchen, pulling me in the direction of the cupboard where his juice was kept.

2. Sensory Obsessions

From as young as twelve months old I noticed George had a fascination with water. In fact, any liquid he could find – whether it was someone’s cup of tea or his own cup of juice, he would put his hands straight into it. This behavior may appear to be typical of a one year old, but it continued as he grew – he would drop objects into drinks and fish them out, or tip the whole thing over himself. His other obsession was hair; he liked to hold my hair and rub it into his hands and on his face. Dolls hair, furry teddies or anything fluffy. This is known as sensory seeking behavior and is a way of coping with the demands of the environment and the ability to process sensory stimuli.

3. Repetitive behaviour 

George had some repetitive behaviours when playing with his toys. He liked to lay all his toy figures flat on their sides. No matter how often I put them back the right way, he would go over and lay them on their sides again. It was like he had to do it, and often got upset if I put them back. This progressed into lining things up or grouping them together, in neat lines or tidy piles. He was very focused on this task, and if one fell over or was slightly out of place he kept at it until it was just in the right order.

4. Stimming

Of course, until George was diagnosed at 2 and a half I didn’t know that there was a name for this behavior. Often, George would pace the room, running up and down and back again or walking in circles for a very long time. It was sort of trance-like, he was happy and enjoying himself but wouldn’t notice if I called out to him or tried to stop him from doing it. It was as if I wasn’t in the room. He jumps and flaps his hands and babbles in his own world quite happily, it looks a lot of fun! What I found alarming was his vacant expression when stimming, his eyes have a glazed look as if he is in another world. Generally this happens when he’s really excited or if he’s in an environment where there’s a lot of sensory input for him to deal with. Stimming can be a comforter when he feels threatened or a celebration when he’s happy! Because George struggles to verbalise his feelings, this is how he communicates them.

5. Delayed responses

A very early sign for us was George’s delayed response to sounds. If we called his name he would rarely look, even on the second and third attempt with a raised voice. Some very loud noises wouldn’t receive a reaction, but if you whistled or sang at high pitch, he became distressed. It was like he was sensitive to certain frequencies and unresponsive to others. Initially I thought George had a hearing problem, but he was discharged after a number of hearing tests with sound hearing. We now understand that this is part of his sensory perception, many children with an ASD have difficulties in processing sensory information.

These are the main points that drew my attention in George’s case, but symptoms can vary.  It is worth mentioning that assessment will only be considered if your child presents with difficulties in three main areas, known as the triad of impairments –

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If you have concerns that your child isn’t reaching their developmental milestones and are showing difficulties in these three areas, talk to your GP or Health visitor. An early diagnosis is key to accessing help and support for your child. Luckily George was diagnosed at a young age but many children are undetected for years – if you have any concerns, trust your instincts and waste no time in seeking advice. There’s a wealth of support networks out there!

For further information and support, visit

Autism West Midlands

National Autistic Society

Autism Speaks

Treating Acne: Are drugs the best answer?

My partner Danny has suffered with acne since the age of 19. Presenting itself around the neck, hair and jawline, it often became painful, infected and angry. The condition affected his entire neck and jaw line, and simply wearing his t-shirt would irritate and cause him pain. He had tried many treatments on the market – acne creams, face scrubs, antibiotics – he even sought dermatologist advice. They recommend  a course of Roaccutane: the last resort antibiotic linked with mental health problems in BBC 3’s documentary of December 2012 ‘Dying for Clear Skin’.

Not wanting to take Roaccutane, Danny felt there was nothing else he could do. Seeing his frustration and discomfort, a friend recommended Improve Your Skin – a beauty clinic situated in Sutton Coldfield – offering Acne treatment services amongst other skin conditions. He was already embarrassed and self-conscoius, and being a man’s man, it took a little persuading on my part to get Danny into a beauty clinic. I showed him the website Improve your skin and a preview video and he agreed to go for a consultation in a final attempt at a solution.

Manager Denise Evans gave a full and thorough consultation explaining the cost, the process and the after care involved. We learned that his acne was caused by Folliculitis – something which neither the doctor nor dermatologist had ever explained or diagnosed. After the initial course of treatments Denise prescribed, Danny was to continue the routine at home with the relevant skin care products. He would need to visit to the clinic once a month for the first six months. Denise was positive we would see great results and we were confident enough to go ahead with treatments.

The areas affected before treatment began:

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Denise used a combination of Green Peel and Alkaline wash treatments to release the bacterial impaction in the follicles. It was uncomfortable but not unbearable, the product was massaged deeply into the area and carefully timed before removing. A repairing mask was then applied, and a more relaxing treatment of light therapy for twenty minutes.

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After Light Therapy Denise prescribed the relevant home-care products tailored to his treatment plan from THE ACU-SYTEM by Danne Montague-King

After just three months there were dramatic improvements. The infection subsided and most importantly, the pain was easing. Areas that were rough and bumpy in texture have flattened and smoothed; the redness has reduced and Danny’s skin is a much more even tone. We are amazed at the results!

             Before treatment                                                 Today            

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After eight years living with Acne, Danny is relieved to find something that has finally worked for him, without having to take tablets everyday. He says;

‘It has been life changing. I wish I discovered Light Therapy years ago. I’m not in pain anymore, and the anxiety I used to feel when looking in the mirror has gone.’ 

Giving my son a voice…PECS

As an autism parent, one of the major concerns and great worries I have for George is that his voice won’t be heard.  Literally speaking, I hear his voice every morning at 6am; singing his abc’s or reciting one of his favorite nursery rhymes (heads, shoulders knee’s and toes is top of the list at the moment).

But the voice I mean is the one that gives him individuality, freedom and choice.  The voice that defines him for who he is, without the limitations and restrictions of his autism.

I imagine the majority of you reading this right now use your voice without giving it a second thought. We take for granted how much we  exchange communication through talking.  It allows us to express ourselves instantaneously; to ask for help when we need it, to explain a painful symptom to the doctor, to tell a friend about a comment somebody made that really hurt your feelings. Sometimes we just need to vent, have a good rant, offload our stresses. It makes us feel better and releases the pressure of everyday life.  What’s more, it makes us feel like we are not alone.

‘What if you were locked in a private world, with little to no ability to understand or recognize basic human emotions; in yourself or in others?’       (Janine Driver, 2011)  

You can read more on autism and the struggles with communication in Janine Driver’s article here –  http://www.psychologytoday.com/blog/you-say-more-you-think/201104/autism-spectrum-disorder-struggling-communication

The barriers in communication between George and I caused a lot of frustration for us both. Our difficulties in understanding each other made me feel like I was failing him as a mother. I was desperate to find a way to open up a communication pathway.  Much research later, I decided to attend a Makaton workshop ( as seen in the Cbeebies programme Mr.Tumble) and introduced symbols and pictures using PECS, (Picture exchange communication system).  Although we now use a combination of both, I would say that for us PECS has been more successful. George knows a handful of Makaton signs, but this only works with people who also know Makaton. PECS is much more transferable, and can be taken anywhere and used with anyone.  Visual aids are used in special education for daily timetables  and this brings much success to children with an Autism Spectrum Disorder. For these children spoken language is far too abstract and ambiguous to comprehend.

Something as simple as using pictures to communicate has made a huge difference to our lives. This is something that mainstream schools could include at little to no extra cost. Not only would this benefit children who already have a diagnosis, but also those who are caught in the long process of assessment.  A daily visual schedule for all pupils to see can reduce anxiety and improve behavior in children as  knowing what to expect throughout the day builds security and trust.  A simple starting point as this could reduce the demand for statutory assessment. It is possible to communicate with non-verbal children, you just have to think outside the box.

Find an alternative way to give a child a voice.  There is nothing more rewarding.

 

For more information on Makaton http://www.makaton.org/

For more information on PECS http://www.pecs-unitedkingdom.com/

Dear Teacher…

I was once told that as a mother of a child with Autism I am too emotionally attached to make clear judgements about the education system. While I understand that my maternal instinct is a driving force of my passion for teaching children with Special Educational Needs, I also have a daughter in her reception year at Primary school, who is ‘neurotypical’, thriving with an eagerness to learn and generally a ‘well – rounded’ child – (her teacher’s words, not mine). Any opinion, suggestion or critique I may offer regarding education will always have both of my childrens interests at heart, I would equally not accept compromising the abilities of other children to learn in order to assist my ASD son. What then, does qualify a person to make such judgements if not people at the very heart of the disorder? A person who has gathered information from a text book perhaps?

The fact that this has been mentioned to me before, by a teacher I might add; points to one of the issues that jeopardises the relationship between teachers and parents. My experience of the parent / teacher relationship maintained within Primary schools seems to show limits. A smile in the playground, a positive parents evening and a filled in reading record and everything is great. But once any questions are raised around the quality of teaching your child will be receiving, suddenly parents are looked at as if they are aliens who just landed right there in the playground before the first bell.

Teachers could actually learn a lot from parents, in particular parents of children requiring extra support. Relationships need to be strengthened so that communication pathways are always open and the child realises the adults delivering their education are working as a team. It is commonly suggested that early intervention for children with Autism is proven to dramatically encourage development; yet in my experience, besides Specialised education, mainstream schooling just isn’t geared towards an Autistic child’s way of learning.

There is no reason at all why a child with high to moderate functioning Autism should be turned away from a mainstream setting. Highly visual methods of teaching will benefit all primary age pupils. A strong relationship between parent and teacher is essential to identify together where and when a child with Autism may need some quieter time, reducing the risk of behavioural problems and distraction to other pupils. Finally, until Education Authorities introduce Autism training for teachers – a little understanding from teachers to parents that we take this child home every day and we live Autism with them. So when you fear we are turning into aliens before your very eyes, blink a few times and all should become clear -we aren’t criticising your ability as a teacher, please don’t under-estimate our ability as experts.

 

Four in ten children with Autism are being illegally excluded from school…who is responsible?

The charity Ambitious about Autism have released shocking statistics revealing the high number of Autistic children illegally excluded from school. Sky news report on the findings of the new research here.

 

What more proof is needed for education authorities to address the issue? Speaking on Adrian Goldberg’s radio show this morning I had my say on the subject of Autism – as did other parents and teachers. Some of the comments made via text, mainly from significantly older generations, magnify the ignorant attitudes that prevail in society. One listener text in to say;

 ‘There was no Autism in my day…they are just naughty children’  http://www.bbc.co.uk/programmes/p01q95l4   @2.38 

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The problem Autism faces, is that the condition is invisible to the average by-stander. Because the disorder affects the brain, it isn’t visibly obvious that a child has it on first impression, and if you just happen to witness a ‘melt -down’ (the term used to explain behaviour issues due to an overload in sensory input) it could quite easily look like a spoilt kid having a tantrum. But before basing your opinion of Autism on witnessing just one meltdown, before concluding that  ‘they are just naughty children’, spend a little more time around the child and you will realise that it is far more complex than that.

Each child affected by Autism has individual areas of impairment – some may suffer more in their ability to communicate spoken language effectively. Unable to express themselves and communicate their needs or preferences results in a build up of frustration which will eventually explode into a ‘melt down’. Imagine having something to say and being unable to say it? It is simply unethical to punish a child for having a communication disorder.

With 1 in 100 children now being recognised as having ASD, the education system has got to cater for them. There aren’t enough special schools to give every child with Autism a place. All mainstream schools require Autism training, so that they can identify the potential triggers that cause sensory overloads in the child and prevent a possible ‘melt-down’.

Children with Autism need understanding and acceptance. A right to a decent education. Compassionate teachers willing to give them a chance. They are innocent children, born with a developmental disorder of the brain, and they aren’t going to disappear.

To sign up and show your support in providing adequate support for children with Autism in education, join the Ruled Out campaign here http://www.e-activist.com/ea-action/action?ea.client.id=1832&ea.campaign.id=24819&ea.tracking.id=email

SEN – Making a difference

Today I feel I may have just made a difference in the world of Special Needs. Small, but significant. After my son’s diagnosis of ASD  in July, I suddenly felt I should move him to a specialist nursery. Greenhill Lodge nursery in Wylde Green Sutton Coldfield is where he has been since the age of eleven months. He loves the staff and they love him. After the madness of my initial thoughts on moving him straight away, a few weeks went by and I was able to rationalise. The staff at the nursery were happy to help in any way they could, even if that meant supporting George through a transition to a more suitable nursery. But George was happy and the staff know him well, so why should his diagnosis have meant me suddenly moving him?

I have stressed in previous posts that there is a total lack of Autism training in mainstream education. I strongly feel that this is the biggest contributing factor to the ignorant attitudes prevalent in society and common misconceptions of the disorder. This is not through direct fault of teachers – of course training costs money, and that’s a separate issue altogether. I shall save that for my next post.

 

As George was the only child in the nursery with an ASD diagnosis, the staff knew as much about Autism as I did, which at the time was not a lot. George’s consultant had advised me that George was ‘moderate’ on the spectrum, and that his needs could change over time as he develops and grows. After much consideration, I decided to keep him at the nursery to much success. One to one support was quickly put in place for two hours a day to help George learn through play.

An IEP was put in place and together the nursery and I worked towards his targets. In turn, the nursery have sourced Autism training for the staff, and utilised their space to accommodate George’s needs. There is now a section of the nursery full of information on special needs and Autism. This is not to say specialist education should be overlooked or under valued, children who are more severely affected by the disorder would undoubtedly benefit from a specialist setting. The complexity of ASD leaves the decision to the parents, but from my own experience the lack of training in mainstream leans parents naturally towards Specialist education as the better option.

I completed a review on http://www.daynurseries.co.uk/ as I was so happy with the progress George had made thanks to the staff adapting their approach to George and his difficulties. Today as I left the nursery I  noticed a new mum being given a tour of the nursery after reading my review. She has a son with Special Needs. A small measure I know, but I feel a sense of achievement in our journey with George, and I’m glad I didn’t move him. Positive attitudes and an open mind can help to integrate ASD and Special Needs in to the big wide world of mainstream society, even if it is only one step at a time. Simple but effective.

Acne skin treatments: #2

 

It is our second treatment and all is going well with the home care routine. It takes a little more time in the morning than usual but already we can see results. This is unusual so early on as we were told by Denise that in fact the condition often gets worse before it improves as the bacteria that is impacted in the follicle is released and pushed to the surface. We weren’t expecting this. The back of the neck is considerably clearer than it was before we began treatment.

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The skin is flatter, smoother and infection seems a lot calmer at the back. The front is proving to be more stubborn, and has come to the surface as we were told to expect.

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Today Denise took a different approach on assessment of the skin. Happy with the progress of the back, she used a green peel on the front this time which was massaged in to the skin and timed. This stung a little but we were pre warned about the pain and knew what to expect.

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After treatment Denise revised the length between appointments. With the skin responding well it was now advised to keep them up once a week to really work on the impaction around the front. We are looking forward to the next treatment!