Sunday, June 18, 2017

Published Sunday, June 18, 2017 by

ASD & SEND Roundup #28

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

It has been a crazy busy week with our wedding anniversary, my company offsite, a neighbourhood street party, Father's day lunch, and my brother is visiting us for 2 weeks from Seattle.

After such a crazy week it is lovely to be able to sit in my garden listening to the birds and take some time for myself. I am increasingly working out how important it is for me to take time out, especially when life gets busy. For years, I have been going to the doctors for blood tests as I was concerned about how tired I was on Saturday mornings ... no matter how much sleep I got. I now realise that I need Saturday mornings to myself in order to "power up" after the demands of the week and the pressures of parenting. After feeling guilty for so long, I am finally starting to accept that it is what I need to be able to function.

With a visitor in the house, Eldest has also had a difficult week. The first night he was wound up tighter than a spring, and it took us hours to get him to calm down enough to be able to go to bed. After a few days of being in a state of heightened anxiety, we seem to be calming down again. It has been a reminder to us that we need to prepare Eldest for when people come to visit us, and for us to ensure that we have something planned to help him work through his emotions during these times. My mum will be heading over to visit us from South Africa for a few weeks. Hopefully, we will be better prepared for her visit.

This week I was struck by two blog posts Scary Mommy's The Loneliness of Special Needs Parenting and Ellen Stumbo's Special Needs Parents you are not invisible, I see you. Being a special needs parent can be challenging, and incredibly lonely at times. The community of SEND parents can make such a difference, especially during the challenging times when you need understanding, advice and support from other parents who have been through similar challenges.  Please do get in touch if you have any questions - if I can't answer it, I know a great group of SEND parents who will be able to offer some advice.

A happy Father's Day to all the Dads, and all of the amazing mums.

Helen xx

Articles included in the roundup this week:

  • I will not let a broken system break my little boy. - Someone's Mum 
  • James An Interactive Cartoon And Games From Chaudron Magique - Savvy 
  • The genius in people with learning, mental health issues 
  • How Does A School Decide If They Can Meet The Needs Of A Student With SEND? - Mummy Times Two 
  • Why I dislike the phrase ‘If you’ve met one person with autism…' - Someone's Mum 
  • SEND Round-up: Awareness, behaviour & care | BritMums 
  • Parenting from a special Perspective: Life with ASD and the rest 
  • 1001 Awesome Adventures to Defeat Boredom This Summer - UK Yankee 
  • Inclusion at its best 
  • The Glad Game - Mummy Times Two 
  • Special needs parents, you are not invisible, I see you - Ellen Stumbo 
  • My Explosive Child Has Lost Control - What Do I do? - Not The Former Things 
  • Politics and Special Interests. 
  • Learning About The World With North Star Geography - Not The Former Things 
  • Listen. 
  • He’s 9 years old and has autism. He’s headed to gymnastics nationals for the third time. 
  • How to answer our children's awkward questions ... 
  • The Loneliness Of Special Needs Motherhood 
  • Why my autistic son would be a great father 
  • The one where I confess 
  • Birthdays, Cake & Autism
  • The Reality of Autism and Lack of Danger Awareness 
  • What Happened When A Child Refused To Have My Autistic Daughter In Her Team

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Monday, June 12, 2017

Published Monday, June 12, 2017 by

ASD & SEND Roundup #27

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

The past two weeks have passed by in a blur - first was the bank holiday, and then I was struck down by some kind of bug which knocked me for 6 (and the reason why I missed the round up last week). At home Eldest is going from strength to strength with his new found cycling abilities, and poor Dad is being dragged out at the crack of dawn at weekends to go cycling around the neighbourhood.

After my recent blog post about Love being Measured, I had to try hard not to whoop out loud when I was told that I was "the best mum in the world". We still have not got to the stage of me being allowed to touch him or mentioned the "love" word but it is progress. With a book of our own to read together and my ongoing attempts to point out the things we have in common, I am determined that one day we will get there. If all else fails, I will apply for a job at Lego Headquarters which will no doubt earn me bonus points!

The election brought about some extra fun - Eldest voted we should move to Legoland for the Summer and Youngest voted to have the butterflies at nursery released into the local woods. With the elections behind us, it will be interesting to see what will be done to improve standards of cars for those with learning disabilities and autism.

We have a specific task to improve standards of care for those with learning disabilities and autism. We will work to reduce stigma and discrimination and implement in full the Transforming Care Programme.

This week I have the pleasure of being part of the wonderful Parenting from a Special Perspective series, which is hosted by Diary of an Imperfect Mum. If you have not come across her before, then I encourage you to read some of her glimpse into autism posts which are a series of short letters that explore how autism effects them on a day to day basis.

With the bank holidays are behind us, we are now looking ahead to Summer. With the long school holidays I am looking for ideas to keep the kids entertained, so if you have any ideas (which don't involve much travel) then please get in touch and let me know.

Helen xx

Articles included in the roundup this week:
  • SLT Appointment
  • Speechify: Give your child a voice -App for Kids with Autism
  • NHS groups backtrack on proposals to restrict autism diagnoses
  • Should Children With Autism Wear Electronic Trackers?
  • Autistic Adults and other Stakeholders Engage Together Meeting (AASET)
  • Making “invisible” needs “visible”- Tried and tested tools that deliver | SEN NAV
  • Autistic Women – Why Are We Invisible?
  • The Anxiety Diaries - Being Honest - Blogger Mummy Lauren
  • School allocations with SEN | Pinkoddy's Blog
  • We need to ditch the 'One size fits all' stereotype of depression
  • You Have Been Officially Autistic For One Year - Me, The Man & The Kids
  • A hidden disability
  • A letter to … my severely disabled eight-year-old daughter
  • Using Schedules To Reduce Meltdowns - Mummy Times Two
  • Why I Wanted the Autism Label for My Son
  • The case of the misguided SEN Officer.
  • Parental guilt.
  • They tried to make her go to rehab… she says no, no, no

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Saturday, June 10, 2017

Published Saturday, June 10, 2017 by

Secret fears and hopes

embracing vulnerability to overcome my secret fears and achieve my dreams

We all have them, those unspoken thoughts that play in the back of our mind. Thoughts that we don't say out loud, or share with the people closest to us. The things we want to do or say, and the things that hold us back.

Recently I have been reading Daring Greatly: How the Courage to be Vulnerable Transforms the way we live. In the book, Brene Brown says "Courage starts with showing up and letting ourselves be seen". She then goes on to talk about how embracing your vulnerability and living whole-heartedly can help you face the things you fear. How acknowledging our fears can help us dare greatly.

As I read, I kept thinking yes, yes yes. Then I attended a Daring Voices event and met someone who seemed so confident and self-assured. She stopped me in my tracks she when talked of what she wanted to achieve and told me "I am scared". I was struck by how much power there was in that statement, and how much it resonated with me. 

I decided to make a change. I have been hiding for so long, pretending to be strong and struggling with so many things on my own. I have been open about my struggles with anxiety, but have never had the courage to admit to the specific things that I struggle with or fear.

Courage starts with showing up and letting ourselves be seen-- Brene Brown

In the past few months, I have spoken out about my fears and shared the secret thoughts that I have been carrying around with me. It has not been pretty. It has been messy, jumbled, raw and emotional.

I told my husband of the things I feel guilty about, my internal struggles, and my feelings of not being good enough. My struggles with not having a close and loving relationship with my son, who wants his Dad more than me. The guilt of sleeping in at weekends and staying in my room to recharge, rather than spending that precious time with my family after I have been at work all week. The shame and thoughts of "if you only knew the truth" whenever anyone tells me that I am a great mum or I do so much for my family. I was amazed how little he knew of my secret fears after almost 10 years together, which shows how well I have been hiding them.  

For the first time, I spoke of feeling disconnected and alone, despite all the people around me. I have spoken about my feelings of often feeling like I am on the outside looking in, whilst everyone else seems to get on with each other so easily. My secret thoughts that people don't really like me, and they are just "being nice" to me because they don't want to be impolite. The fear that I feel when I walk into a crowded room and am expected to mingle, even when there are people there that I know.

At work, I "confessed" to my manager about the work situations that make me anxious. It was hard. I didn't want my struggles with anxiety to affect their perception of my abilities but I feel that it is key for me to get the support I need. I may have totally blown any chance of getting my promotion, which I have been chasing for over 4 years now, but I need to change things and struggling in secret has not been working. I was scared and sometimes confrontational, but he listened. It feels quite liberating to be able to say, "this is me, and this is what I need".

It feels quite liberating to be able to say, "this is me, and this is what I need"

I have opened up about my disappointment and frustration of not being able to easily get on with so many people at work, and generally being seen as "hard work" or "not suffering fools easily". I am tired after 7 years of trying change to think more about other people and not create conflict.  I have highlighted the pressure I feel to get it right with the people around me and the feelings of failure when I don't. This is the thing I am most ashamed of, and have struggled with. Despite all the books, introspection and attempts to try out various techniques, I can't get this right. I have admitted that this is not something I can do, and need help with.  

I feel like I've been truly honest, for the first time. I have not just spoken about the things that I think people want to hear or feel comfortable listening to. I have mentioned the comments from my past that have hurt and haunted me. The words that are always in my mind, threatening to undermine me in everything that I do. The words that are holding me back from speaking out about my hopes and dreams.

Speaking about my fears has given me the courage to speak about my secret hopes and dreams. I have given air to the things I would love to do and achieve, but haven't found the courage to say out loud for fear of failure.

So here they are in no particular order.

To become a public speaker, where I can use my experiences to help and inspire others.  For other families like ours who are discovering what autism means for them, and for children who are young carers or from disadvantaged backgrounds. My early years were spent caring for my family as my dad passed away when I was young and my mum struggled with undiagnosed bipolar disorder. I was told at school that my future options were limited because we didn't have the money for university, or further study. I want other children facing similar challenges to know that it is possible. I found a way to do it, and they can too. 

To become a neurodiversity champion, and to help bring about a much-needed change in how companies support people with autism, social difficulties and anxiety at work. 

To get my promotion and be recognised for the work that I do. This means taking the time to clearly understand what I need to do to achieve this, the support that I will need for the things I struggle with, and enlisting the help of those around me to make it happen.

To go on a 2 week holiday without my kids so I can truly relax for the first time in years, decompress and work out what I need for me. To get away from it all, and spend time focusing on working through my many thoughts and think about what I want. 

To rebuild my friendship circle, and find some friends close by that I can meet up with to talk about the things that are happening in my life (over a glass of wine or two). People I can be myself with. People who I can feel connected with. People who feel comfortable enough with me to invite themselves over for a visit. 

I feel exposed and my fears have not gone. I don't know if my new found honesty is going to trip me up or spur me on. My dreams are just words on a page, and I have no grand plan to make them a reality. In fact, if I am honest, I don't really know if these are my real dreams or whether I am just listing the things that I think "would be nice".

I feel exposed and my fears have not gone

Speaking out has not helped me radically change my life but I am talking more to people around me about things that go beyond the surface. We are sharing more about how we feel, and I feel like people starting to understand a little more about the real me. I am also starting to understand myself more and I am starting to embrace how I am rather than be secretly ashamed of the things I struggle with. 

It feels like a start. 

I can see small things starting to change, and the possibility that these small things may lead to big things. The big things might be one or more of the dreams on this page, or it may be something completely different. I don't always get it right or know what I want from life but I do know I want something to change. 

So from now on, I am committing myself to wholehearted living and embracing my vulnerability, no matter how scary it is. 

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Friday, June 02, 2017

Published Friday, June 02, 2017 by

When love is measured not felt

trying to make sense of love between my son and i

I like you, but I don't love you, not even a little bit. Hard to hear from someone you care about, even harder when it is your 7-year-old child.

This is how my son responded to me recently when I told him that I loved him, and it hurt. It hurt a lot. It wasn't the first time, and he wasn't trying to be unkind. He doesn't realise that words can have an emotional impact on others, especially when it is "the truth". By truth, I mean a thought in his head.

That night I wondered does he even know what love is? Dad was dispatched to talk to him about what he had said and to try to understand why he said it. The talk revealed that he determines who he "loves" based on an assessment of what he likes and doesn't like, and the extent to which that person is similar to him or does the things that he wants to do.

He likes Lego, superheroes, Star Wars, watching TV, Asterix comic books and eating treats. He doesn't like people not listening to him, too many rules (unless he has made up the rules), being told "No",  and shouting (unless he is the one shouting).

Daddy is a boy (instant bonus points) and likes doing lots of the things that he likes - he loves Daddy. Mummy is a girl and doesn't like all the things he likes. Also, she has too many rules & she sometimes shouts. He just likes Mummy.

For him, this makes sense. He knows what he likes and doesn't like. He can work out if other people like the same things as him, and the determine how much he likes or loved them by the sum of how aligned they are to him, his wants, and his expectations.

It doesn't make sense to love someone who is not aligned with his likes, wants and expectations. How can you love someone when you don't like the same things, and they don't always behave the way you want? It also doesn't make sense that I would get upset when he tells me that he doesn't love me.

Two days later as I sat in the garden thinking about life and his views of love, I was surprised when he turned up with a plastic bunch of flowers and suggested that I sniff them as if they were real before disappearing inside. Wondering where that came from, I remembered the cake he insisted making and decorating for me on Mother's Day, and the joy on his face when he saw me at his end of term assembly.

Sitting there I wondered Do I know what love is and how see love in others? Do I need my son to love me in the same way as his Dad?

It seems like I am not the only one to have questions about love. What is love is one of the most frequently searched phrases in Google. Reading through the definitions, I realised that everyone has their own definitions of what it means to love and be loved.

love is a variety of different feelings, states, and attitudes that ranges from interpersonal affection to pleasure. It can refer to an emotion of a strong attraction and personal attachment. Love is based on trust, and may take time to develop, like is an instant feeling
Reading through the definitions, I was reminded that love is not measured by words, and it has many different forms. If love can grow when there is trust and our love for someone can change, it is up to me to ensure that there is trust and that he feels loved. The important thing is that he continues to know that I will be there for him no matter what.

I don't know if my son loves me, but I'd like to think that he does. I know that I love him, and will always strive to make sure that he feels loved. I realise we may never reach the stage of kisses, cuddles or unguarded emotion, but he likes me and sometimes takes my breath away with an unexpected action of affection. I'll take that. At the end of the day, it is our actions that speak louder than our words.

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Tuesday, May 30, 2017

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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