Published Tuesday, May 30, 2017 by

The time I first spoke up about my anxiety

the first time I spoke of my anxiety to the people who work with me


Two years ago, I was asked to get involved in Mental Health Awareness week at work. As part of this, I took the step to share my own battles with anxiety - below is what I shared.

What I didn't mention at the time was that my son was in the process of being diagnosed with autism, and we were fighting school exclusion, which added to the stresses and pressures that I was feeling. 

Looking back on what I wrote, I realise that it is as true for me today as it was then. I didn't realise that it was only the start of my battle with anxiety. Thankfully I know the situations which are likely to make me anxious, and the help I need to get me through anxious times. It is never easy, but I am getting there. 

My anxiety may now be a part of who I am, but it does not define me. 



As management consultants, we have not chosen an easy life.

We are paid to solve other people’s problems, frequently working as outsiders in someone else’s office with clients instead of colleagues. The hours can be very long, and you need to actively work on remaining connected with your own company, over an above your day job, when you are away on client site.

Consulting can be very exciting and rewarding, it can also be demanding


For 5 years I enjoyed a variety of projects which allowed me to develop my skills as a project manager, challenged me on a daily basis and even allowed me to travel to some great places including New York, Hong Kong, South Africa. During this time I had bought my first house, had two great kids and got married.

Everything seemed to be going so well – and then I crashed.

I was almost crippled by anxiety


After returning from maternity leave, I felt that I would need to change my working style if I wanted to progress my career to the next level. I had switched to a 4-day working week and working longer hours was no longer an option for me. The problem was that the more I tried, the less successful I seemed to be and it soon started to have a profound impact on me.

I became filled with self-doubt and constantly felt the need to validate my thoughts with the people around me. My mind was permanently in overdrive, and I found it hard to switch off. I was in a perpetual state of worry and had trouble sleeping – often waking up in the middle of the night obsessively thinking about random things such as what I was going to say in a meeting planned for the next day.

Each morning was a herculean effort to wake up and head into work, and at weekends I couldn’t get out of bed as I had used up all my energy trying to hold it together during the week. I would regularly break down in tears, sometimes with no warning at all - I can’t imagine what my fellow commuters made of me as I blubbed while reading my morning Metro.

At its worst, even simple things such as trying to arrange a night out with friends were very stressful. This is not the greatest trait for a project manager, whose job it is to manage multiple streams of activity and ensure any key risks or issues were dealt with as effectively as possible.

 I didn’t want to ask for help as it felt like an admission of failure


People at work were aware of the challenges I was having on my project. I tried to underplay how difficult things really were, and never openly asked for help as I didn’t feel that they would understand. I felt I would be judged negatively if I admitted the truth.

I knew of the support options available to me at work, however, I felt that I had a commitment to meet project deadlines and couldn’t possibly take time out each week to talk through what was going on with me. My life was extremely busy, and I didn’t have a chance to deal with my own personal crises. It would have to wait until I could fit it in.

Also, I believed that asking for help would mean having to admit that I was struggling to cope. I was desperate to prove that I could do what was being asked of me. And to be honest, I didn’t know what help I needed. I kept telling myself that I just needed to hang in there and that everything would sort itself out when we got through to the next phase of the project. 

So I withdrew and tried to avoid interacting with people from work unless I really needed to. I couldn’t face events such as the townhalls and Christmas party as I couldn’t bear having to put on a happy face for everyone. 

My greatest fear came true when then the client asked for me to be removed from the project. I believed that my career was over. After all what use is a Project Manager who is not able to successfully deliver projects? Prioritising work commitments over my personal needs and mental health only made matters worse, and I believe that much of the fallout could have been avoided if I had tried to get help sooner.

Putting your trust in someone and asking for help is a massive leap of faith when you don’t know how they will respond. However, it can make a huge difference. For me, things started to change when I asked for help.

Anxiety affects 16% of people in the UK


According to Rethink Mental Illness, anxiety is one of the most common mental health problems affecting 16% of people in the UK, yet remains under-reported, under-diagnosed and undertreated. A survey by the Mental Health Foundation survey found that more than half of us have noticed that ‘people are more anxious today than they were 5 years ago.'

Anxiety is an emotional state that can work for us as well as against us. It is something we all have in common, but it is how we perceive these feelings of anxiety and how we respond to them that makes the difference.  

The problem is when you are not able to control the anxiety, and it starts to impact everyday life, and potentially even your physical health. Prolonged anxiety and increased stress levels have been linked to immune system weakness and other health issues such as high blood pressure and heart disease.

Finding support made a big difference


Since then I moved onto another project where I was able to start rebuilding my self-confidence with the assistance of some key people both within and outside of work.

I did see a counsellor talk through how I was feeling, though I found more benefit from my time with a Life Coach who helped me think about how to be committed without having to be emotionally attached to the work I do. They helped me to think about my future, focus on what is important to me, and enabled me to step back and assess what is happening around me. 

Outside of work, I am taking more time to focus on the things that I need. This balance helps me to step away from the pressures of the week and provides an opportunity to unwind. It has not been a quick fix, but over time it has helped me to deal with much of the self-doubt and anxiety.

For anyone struggling to deal with stress, self-doubt or anxiety – you are not the only one. As someone who has struggled, I would highly recommend reaching out to someone for help, so you don’t have to try and deal with things on your own.


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Published Sunday, May 28, 2017 by

ASD & SEND Roundup #26

weekly round up of autism and special needs blog posts & articles

This week I was invited to join Autistica & IBM for a day of exploring how advances in technology could be used to help people with language and communication difficulties. This technology is already being used to help treat cancer and is being trialled to detect early dementia based on speech patterns. The promise of what this could mean for helping people interpret the world around them, or even help in the diagnosis process, was pretty exciting. I am looking forward to what comes next. I'd love to hear from you if you have an idea about the language and communication challenges you would tackle if you have a wealth of knowledge at your fingertips.

The news that NHS SW London has been discussing the idea of limiting autism diagnosis to those who also have a mental health issue has been spreading this week, and has been causing much concern to everyone in the autism community. I am closely following this news story as I believe that if the idea if allowed to become a reality, it sets a very dangerous precedent for everywhere else. You can follow the story via my FB post or Twitter moment, as I will be updating these as the story develops.

This week I have been reading the posts from Steph Nimmo of Was this in the Plan. Steph is in one of the boroughs which would be impacted by the NHS SW London decision, her post on needing to increase not reduce services is worth reading as she brings to life the importance of having a diagnosis.

With the Bank holiday and the sunshine, I hope that you are able to find a moment for yourself and recharge for the week ahead.

Enjoy!
Helen xx

Articles included in the roundup this week:
  • How mentally unwell does my child need to be to get an ASD assessment? 
  • Diagnosing autism - services need to be increased, not reduced. 
  • Know when to stop flogging the dead horse. 
  • Communicating without words 
  • Meltdowns 
  • Fidget Spinners: Good Or Bad For Kids' Concentration? 
  • Silent Sunday 
  • Why Playing The Autism Diagnosis Lottery May Be Getting Even Harder 
  • Why Diversity Can Be Bad For Business (And Inclusion Is The Answer) 
  • The difficulties that get overlooked when your autistic child is verbal 
  • The Meaning of a Meltdown - Someone's Mum 
  • 9 Things To Keep In Mind When The Going Gets Tough 
  • SEND Round-up: Undiagnosed & fitting in | BritMums 
  • 13 Powerful Phrases Proven to Help an Anxious Child Calm Down 
  • I Am Breaking. They Are Breaking Me. 
  • The impact of one special day 
  • We are all different, not less. 
  • To Every Exhausted Mom Out There, You Are Enough. 
  • For The Mom Headed Into Her First IEP Meeting - Not The Former Things 
  • Autism Events - ASD Workshops and Seminars in London and Nationwide 





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Published Saturday, May 27, 2017 by

Autism diagnosis & a question of severity

questioning the NHS idea to limit autism diagnosis to only the most severe cases.

With the NHS discussing the idea of restricting an autism diagnosis to only the most severe cases, I have to ask how do you measure severity?

My heart lurched as I read the BBC article on the idea being discussed by NHS South West London to limit autism diagnosis to only the most severe cases. Whilst no decisions have been made, it is concerning that this is being discussed as a possible option for easing the pressure on the service where waiting times for an autism diagnosis is more than 10 months.

it seems that once again the need for a diagnosis for many of the children with autism is being questioned

After the SEND labels & pushy parents debate earlier this year, it seems that once again the need for a diagnosis for many of the children with autism is being questioned. And once again, it is coming down to a judgement of who needs a diagnosis most.

With limited resources to support those with autism, it seems like the question in both schools and now the NHS is one of severity.

So how do you measure severity? 

As a spectrum condition, Autism impacts each individual differently which means that the needs of those with autism varies greatly. It is also well documented that early diagnosis and support to address those needs makes a huge difference to achieving long-term outcomes for a child and their family.

With this in mind, the question of how you measure severity is critically important. From my perspective, this is not an easy one to answer.

Is the measure based on the short-term and immediate needs, or the longer term impact of failing to get the necessary diagnosis and support?

Is a child with learning disabilities more severe than a child with ongoing anxiety?

Is a child who is bright but unable to access education due to sensory overload more severe than a child who sits in the corner and retreats into themselves because they can't deal with the social pressures of the classroom?

Is a child who is challenging in class because they struggle with classroom demands more severe than a child who masks at school and then explodes at home because they are struggling with their inability to control the world around them?

To me, each of these cases is severe.

Each child has unmet needs, and will struggle without the insights, understanding and support that an autism diagnosis can bring 

Each child has unmet needs, and will struggle without the insights, understanding and support that an autism diagnosis can bring. Each child will have families, and possibly teachers, around them who are struggling to cope with impact of unmet needs. Each child will be challenged in achieving the best possible long-term outcomes without the interventions that a diagnosis can bring.

Do we really want to put ourselves in a position where we are asking which child's unmet needs is more important, or severe? Or even worse, wait until they develop a mental health issue before they can get a diagnosis and support?

What happens to those who don't meet the severity criteria?

Should this idea become a reality, I have to ask what would happen to the many children whose needs were not deemed severe enough to meet the criteria for diagnosis.

The sad truth is that this is already happening unofficially already. We were initially told that paediatric appointments would only be possible for priority cases when we first asked for a referral to a paediatrician for an autism assessment. With my son in danger of exclusion from school, I questioned this and fought to be considered as a priority case. In the end we went for a costly private assessment, put in our own application for an EHCP, and hoped for the best. We were lucky and two schools later, have been able to find the right support but it still came at a high price to both my son and myself as we struggled with the anxiety of failing school placements whilst trying to get a full assessment of all his needs.

We were lucky as many families aren't able to go private, and struggle for years to get help for their children. A common theme when talking to these parents about their experiences, is that without a diagnosis they were not able to get the necessary support.

The reality is that without a diagnosis these children and their families continue to struggle, and the impact of unmet needs continues to grow until it reaches a crises point.

I have seen parents despair as a result of not being able to help their children, children struggle with crippling anxiety, and other children branded naughty or lazy because of their continued struggles.

I spoken with people, who like Nicola Clark, have struggled with anxiety until they were diagnosed as an adult, and couples who have admitted to the impact on their relationships when one of them has gone undiagnosed until adulthood.

The sad truth is that without a diagnosis, these children often continue to struggle and fall through the gaps, not understanding why. As they get older this can become harder to deal with, and can quite often lead to anxiety, depression and other mental health difficulties. At this point the impact of the challenges, and the costs to support are much higher.

Do we really want to wait until the crises point, before we step in to help?

Is there another way?

With limited resources and the criticality of early diagnosis, we need to find another way to ensure that each and every child with autism gets the opportunity to be assessed so that they can get the support that they need. 

Earlier this week I had the opportunity to explore how technology by IBM could be used to help those with autism, and potentially even help in the diagnosis process (similar to what has been achieved for oncology and trialled for dementia). The possibilities are quite exciting.

This could certainly go some way to streamlining the diagnosis process, however I believe that we will continue to struggle until we find a way to bring together the many different professionals involved in making an autism diagnosis. To me, the current process seems fragmented, disjoined and lengthy. It also does not seem to be working for educators, health care professionals or parents. We need to find a way to make it simpler (and thus cheaper) for all involved. 

For me, the question is not how can we limit those who have access to diagnostic services, but how can we can change things to ensure that we are able to assess each child who may have autism with the limited resources available.




I believe that together we can stop this idea from becoming a reality, as it could be a very unwelcome precedent. Please share your thoughts, either on this post or twitter, so that others may understand how big an issue this is for so many of us. #autismdiagnosiscrisis


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Published Sunday, May 14, 2017 by

ASD & SEND Roundup #25

weekly round up of autism and special needs blog posts & articles

I was honoured this week to be listed, along with so many other great bloggers that I follow, as an inspiring autism mum. Looking through the mums listed there were a number that I have not come across before and I have really been enjoying reading the experiences and insights that they have shared.

With PDA awareness day on 15 May, I have been reflecting on how far we have come since this time last year when I shared my thoughts on why PDA awareness day is so important to me. In the past year my son has found a school who not only supports him, but also understands him and is sympathetic to the challenges we face as parents. Thanks to the South Bucks PDA group, we have been able to share ups and downs with other parents who face similar challenges and don't feel alone. If only more parents and families had this type of support network around them.

This week, I have been revisiting Rikos PDA journey who writes about their experiences and feelings as an adult with PDA. This is truly insightful for anyone who wants to understand more about PDA.

With so many great blog posts and articles this week, you may need more than one coffee (tea/ wine) to get through  them all.

Enjoy!
Helen xx

Articles included in the roundup this week:
  • Tell the teacher how you really feel, why don't you?! 
  • DfE behaviour tsar: 'Dyslexia and ADHD are over-diagnosed crypto-pathologies' 
  • Increasing Situational Intelligence in 4 Easy Steps 
  • Teams Solve Problems Faster When They’re More Cognitively Diverse 
  • LEARNING OTHER THINGS 
  • Sensory Processing Disorder Bathtime Problems 
  • Somewhere Only I Know 
  • Using Schedules To Reduce Meltdowns - Mummy Times Two 
  • Shutting Down 
  • Autistic engine joins new Thomas The Tank Engine blockbuster film 
  • The reason I burst into tears in my son’s future school this morning - Someone's Mum 
  • How to Explain High-Functioning Autism to Your Child and His Siblings 
  • I put him to bed some nights and cry 
  • Parenting from a special perspective: Joseph and his Amazing Spectrum Coat 
  • The First Actor with Autism to Play Curious Incident’s Autistic Lead Speaks Out | Playbill 
  • Autism Doesn't Define My Daughter. But It Does Make Her More And Not Less. - Mummy Times Two 
  • Summer Break For The Child Who Needs Structure - Not The Former Things 
  • Mental Health awareness, getting our heads together 
  • PDA Awareness Day 2017 
  • 75+ Autism Moms Who Inspire.





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Published Saturday, May 06, 2017 by

ASD & SEND Roundup #24

weekly round up of autism and special needs blog posts & articles

Last week saw a MAJOR achievement for us, Eldest overcame his lack of confidence on his bike and has started to cycle without us holding onto the back of the bike. The smile on his face and his new found eagerness for riding has been such a joy to see.

This week I came across the Council For Disabled Children's list of SEND Information and Advice providers. This is a handy reference of the key organisations that can help you, the type of help they can provide and contact details. Definitely one to bookmark!

Miriam from Faith Mummy has had a number of great posts recently, many of which have been shared in the press. Miriam is one of those bloggers who puts herself out there, by sharing not only her experiences but her thoughts as well. Her recent post about crying after he son had a meltdown on a train  is one such post where she talks of her tears and the kindness of those on the train.

After a couple of tough weeks at work, I have been thinking about the importance of resilience and the ability to bounce back from challenging times. This week I will be practicing emotional self-regulation and using calming techniques to help ensure my ongoing resilience.

Articles included in the roundup this week:
  • PLAY DATES BY REMOTE 
  • Pursuing Meaningful Work – An Interview with an Autistic Author 
  • Aspergers: Early Identification and Intervention 
  • Aspie Anger Control 
  • STEPPING SIDEWAYS FROM INCLUSION 
  • Scooter school; dossing about or progressing? 
  • Richard and Jaco: Life with Autism 
  • When online strangers become good friends. 
  • Mental Health and the Autism Mama - mrssavageangel 
  • How Resilience Works 
  • 8 Top Tips for a Successful Play-Date - Emmy's Mummy 
  • Birthdays and the emotional rollercoaster 
  • Employment as a Carer – what helps/doesn’t help 
  • ‘Parents Out Of Fuel’ 
  • When You Finally Accept That Things Aren't Going to Get Easier 
  • The Fight - war cry for an autism parent - Someone's Mum 
  • Break the rules, not their spirits 
  • Starting School Fears with SEN - The Reality 
  • The pursuit of parenting happiness 
  • Dear Mom of a Child With a Disability, I Celebrate You - Ellen Stumbo



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Published Saturday, May 06, 2017 by

Successfully riding a bike after 3 years of trying


riding a bike can be difficult when you have proprioceptive difficulties


Last week saw a MAJOR achievement for us, Eldest overcame his lack of confidence on his bike and has started to cycle without us holding onto the back of the bike. It has taken 3 years to achieve this, and in the end it took just 2 minutes for him go from can't ride to independent rider.

For the past 3 years we had tried everything, and for a while we thought that his proprioceptive challenges would stand in the way of him being able to succeed.  Our bike balance buddy has been a massive back saver, due to the amount of time we have had to run behind him. Attempts to get him to go it alone would be fraught as his anxiety kicked in. and despite ongoing encouragement we were unable to convince him to try without our support.

In the end it took seeing a boy from our neighbourhood also learning to ride, and him wanting to do the same. Looking back his success was down to repeated gentle guidance on what to do, never pushing too hard, patience and waiting until he was ready.

Today the first thing he wanted to do was head out with his Dad and go for a bike ride through the woods. The smile on his face on returning home from his ride was as big as I have seen. He really seems to be enjoying his new found skills.

Seeing eldest overcome his struggles with learning to ride, and finding the confidence to go it alone has given me hope that we will have similar successes with some of our other challenges.

For those who are still learning, this post on Learning to Ride a Bike offers some great advice on learning to ride.


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Published Tuesday, May 02, 2017 by

THE E-WORD part 2: Our EHCP annual review

A PARENTS VIEW OF HOW THEIR EHCP ANNUAL REVIEW WENT


Our first EHCP annual review is now behind us, and I have to say that I think it went ok (though I don't have much to compare it against and don't know what is best practice).

Input into the session

As I wrote before, I had been worried about writing my parental views ahead of the meeting, however by the time of the meeting I had come to grips with the key points I wanted to discuss. Despite reading several online resources, and talking to SEND IAS, I wasn't too sure what to expect. The one thing that I was sure of was that I didn't want this to be a them vs. us meeting, and was determined to try make it as collaborative a session as possible.

The session was attended by myself, my husband and the school SENCO. The school teacher had provided input on his progress, and our paediatrician had written in to confirm our Son's diagnosis. I was not too concerned about a lack of other professionals due to the level of support our Son is receiving at school, however we have asked that his SALT provide a report which can be integrated into his EHCP once complete.

Talking about aspirations

At the session we discussed our continued wish to see our son re-integrate into mainstream schooling before year 6, and our desire to understand why he is "below age expectations" across all areas of the school curriculum despite often being thought of as a "bright boy".

It was interesting to note that wanting to achieve these academic outcomes above can't be stated in the EHCP, as they are not SMART enough to be considered as outcomes - they are aspirations. With this in mind, we focused on the specific things he needs to achieve or overcome in order to attain these aspirations. The discussion led to some new insights from the school about his needs which included challenges with visuospatial working memory, ideation and the ability to apply existing knowledge to solving new problems.

Focusing on his progress and ongoing needs

The SENCO seemed confident that he is making the right progress to likely achieve the academic aspirations that we have which is great as our Son stated in his views that he wants to be scientist. He would also like to spend more time doing RM Easimaths. At least we know that our aspirations for him are not so different those he has for himself, however I doubt we can help him in his quest to "build superheroes".

We also spoke about his engagement with his peers, and his ongoing need for control. It was heartening to note that he is starting to develop his social interactions (though not always in a positive way), and he is becoming more accepting of the need to compromise and negotiate. The work that they have been doing at school is starting to have an impact but he still has a way to go. Hence the need for increased SALT provisioning.

Reviewing his outcomes

Once we had talked about our aspirations and the various needs and challenges which were impacting our Son, we reviewed the EHCP outcomes. For each outcome, we discussed the progress made, the provisioning received, and the suggested next steps for the year ahead. For most of the existing outcomes, new wording was suggested by the SENCO to make the outcomes more specific or relevant to his current progress. In addition, new outcomes were suggested to capture the need to use ideation skills to synthesis new understanding.

By the end we had an agreed set of outcomes that the school are going to put forward to the LA. We also have a much greater understanding of the work that they are doing with our Son, and a view of the longer term strategy that they are working towards.

Reflecting on how it went

This time round we have definitely felt a much bigger part of the process, as we didn't talk through the outcomes during  the EHCP needs assessment and were too exhausted to review or challenge them once the EHCP had been issued.

Next time round, I think I will be much less anxious about our parental views as I now know that the most important thing for us to consider is our aspirations. Until then, I am keen to understand more of the needs that have recently been highlighted by the school, so that I can understand the full extent of these needs and the likely impact they could have on my Son's future.


Useful resources

As part of our review I came across a few resources that were useful, and which helped in the planning for the review.
  • The EHC Plan outcomes pyramid by the Council for disabled children is great at helping to structure thinking in terms of turning aspirations into outcomes to address specific needs using stated provisioning.

  • The SEN NAV cards by Olga Hamer, which reminded me of the wording to use to describe my Son's needs when trying to describe what we observe in terms of his needs.


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