Published Sunday, July 23, 2017 by

A new name and a new wesite

This is the last post from me on this site, as I have now got a new website - I look forward to seeing you on my new website. 

Read More
Published Wednesday, July 12, 2017 by

My feelings about my Son 'learning to be normal'

even superman wondered about being normal #autism

Recently my 7-year-old son mentioned that he was "learning to be normal", and this broke my heart. Since he was diagnosed with autism at the age of 5 we have chosen to be open with him about autism and what it means for him.  Hearing him talking about learning to be normal is the complete opposite of what I had hoped for.

Shortly after his diagnosis, we explained to him that his brain thinks differently and that sometimes he needs a little extra help in the same way that some people need glasses to help them think. We wanted him to grow up to not feel ashamed or embarrassed, it is who he is - no big deal.

As a family, we face many challenges as a result of his challenging behaviour. This we address by learning how to best support him, and working out his needs so that we can work with him (and school) to develop the skills he needs to learn. Whilst I wish away the challenging behaviour every day (especially the moments when I am at my wit's end), I have never wished him to be normal.

For the past two years, he has viewed his autism as a superpower. He will often talk about his autism eyes (he is good at picking out details) and his autism brain. In fact he was so self-assured that he once told me that autism people are special and his autism is very autismy.

You don't understand autism people. Autism people are extra special, and my autism is very autismy
-- Eldest (aged 6)

Is his statement "learning to be normal" the first sign that he is starting to think differently about what autism means for him? Or could it be that he is starting to become aware of the perceptions of the people around him?

In Man of Steel, Clark Kent struggled at school with sensory overload and the knowledge that he was different. Are we heading for a moment when, just like Clark Kent, he will start to struggle with who he is and what it means for him?

We can't control the world around him and we can't stop people making comments. We can't hide him from the rest of the world or wrap him up in a bubble. We also can't make him see his autism as a positive, despite what other people say. So what can we do?

As I wondered about this, I came across another great insight from Brene Brown in her book  Daring Greatly. It was the chapter about parenting. In the book, she talks about children's shame and how parents can help reduce their child's shame through normalising. This means showing them that they are not alone in their struggles and highlighting having faced similar challenges.

As I read through the chapter, I realised that my goal was not about teaching my Son how to ignore name calling or feeling different. It isn't even about me trying to make him feel better, or have a chat about being normal. After all, what is normal?

It is about helping him to normalise his autism.

He is not alone. We need to show him that there are many other children and adults who also have autism and even more people who struggle with the thought of being different. We need to ensure he is able to meet other children with similar profiles and interests to himself, and help him to make connections when possible.

Highlighting our own challenges. We need to be open about our own struggles. The times we have been hurt by things other people have said about us, or have struggled to fit in. We also need to talk about our own challenges with managing our emotions, coping with unexpected change and accepting another person's point of view.

If we can successfully support him through the challenges he will undoubtedly face and show him how others have been in a similar position, then maybe he will continue to embrace his autism as his superpower and will not feel the pressure of needing to learn to be normal.

For us autism is normal, and one day I hope that my Son will feel that way too.

Read More
Published Tuesday, July 11, 2017 by

ASD & SEND Roundup #30

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

This week I have been taking some much-needed respite and a little time out with my Mum, without the kids.

As holidays approach, the need for SEND family breaks and respite has been on my mind a lot lately.

For anyone looking for respite or SEND family breaks, here are some of the services that I am aware of (please do let me know if you know of any that may of interest to other parents)

Lemon and Lime Adventures also has some great ideas for surviving holidays with busy and messy kids. If all fails, you can follow the instructions from the Lego movie, which my Eldest insisted on us following for about 2 months - well past the limits of what my happiness could take.

Helen xx

Articles included in the roundup this week:
  • No Diagnosis Adult Aspergers 
  • How can autistic children access after school activities? 
  • When Your Child Isn't At Grade Level - Not The Former Things 
  • End of school (firsttimevalleymam) 
  • Am I Qualified To Homeschool My Child With Special Needs? - Not The Former Things 
  • how to reduce feeling overwhelmed 
  • Interview with Samantha Craft of Everyday Aspie 
  • Does My Child Really Need These Treatments, Therapies and Interventions? - Not The Former Things 
  • Our lives shaped by autism 
  • Dare I think about my autistic son's future? 
  • Seeing things from another point of view with AniMalcolm 
  • Five Things I Would Advise Myself Post Autism Diagnosis 
  • 5 ways to enjoy an Autism friendly holiday - Our Altered Life 
  • The grateful SEND Parent and a cup of tea. 
  • When Children Choose Math Books 
  • Melissa Koole: ‘I decided I wasn’t ashamed of my autism’ 
  • Autism still gets dismissed by some doctors, family learns in yearlong challenge 
  • Strategies for PDA (Pathological Demand Avoidance) 
  • Coping?

Read More
Published Thursday, June 29, 2017 by

ASD & SEND Roundup #29

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

Another crazy week, with 12 hours work days and my brother over to visit from the states.

Thankfully after a few days where the family were super excited, and a bit manic, to have a guest in the house, everyone settled and we made it through the week.

Not much time to write this week, so I will just leave you with all of the great blog posts that are in this weeks roundup.

Helen xx

Articles included in the roundup this week:
  • Internships for autistic graduates at Deutsche Bank - Autistica
  • Understanding Your Aspergers Spouse/Partner 
  • When Your Child Has A Mental Illness - Not The Former Things 
  • Testing the effects of expression, intensity and age on emotional face processing in ASD 
  • Special needs children's charity faces closure 
  • Middleness? 
  • Families – the Key to Person-Centred Care 
  • Who would we be without our sisters and brothers? 
  • After a Kid Refused to Be on Her Team, This Girl With Autism Did Something Incredible 
  • This is what I wanted to say… but didn’t. - Someone's Mum 
  • When I Was Afraid of Autism - Not The Former Things 
  • Mermaids cave
  • The grateful SEND Parent and a cup of tea 
  • The Difference Between Me and You 
  • Why it's ok for my autistic son to be playing Minecraft on a sunny day 
  • It will be worth it…. trust me. 
  • Do lower expectations equal happiness? 
  • Sensory Processing Disorder - It's Real and It's Never Too Late - Not The Former Things 
  • New School – The Worries and the What-Ifs 
  • 533: Interviewing Individuals with Aspergers Syndrome

Read More
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

Read More
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

Read More
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. 

Read More
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.

Read More
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.

Read More
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.

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 

Read More
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

Read More
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.

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 
  • 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.

Read More
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:
  • Pursuing Meaningful Work – An Interview with an Autistic Author 
  • Aspergers: Early Identification and Intervention 
  • Aspie Anger Control 
  • 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

Read More
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.

Read More
Published Tuesday, May 02, 2017 by

THE E-WORD part 2: Our EHCP annual review


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.

Read More
Published Sunday, April 30, 2017 by

Life with ASD Newsletter - no. 23

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

After the cold snap this week, I am looking forward to a bit more warmth and sunshine. Let's hope it comes soon.

This week, I came across a great video of Tony Attwood talking about autism in girls. In the video there was also some great insights into autism, and equally relevant for boys too, which I was particularly interested in. Definitely worth a watch.

I have been reading a number of posts this week by Miriam from Faith Mummy, who blogs about life with her twins, both who have autism. I could really relate to her post about Scanxiety, which talks about the anxiety she feels each time her son has a scan (he also has NF1) and has to wait for the results. Whilst we don't have to go for scans, it did remind me of the anxiety I felt each time we went for assessments and our EHCP reviews - only to wait to see what they would report back to us. The unknown can be so daunting.

With Eldest going through a phase of getting worked up over things at home, I read 40 calm down tools for older kids with interest. In particular I was interested in the Brainquest cards which are Q&A cards which I think eldest will really enjoy.

That's it from me, I am off to check that the frost has not wreaked havoc on the garden.

Articles this week:
  • The fight for the right school 
  • Richard and Jaco: Life with Autism - BBC One 
  • When the Weight of the Unknown Is Crushing You 
  • The ‘scaniexty’ I live with when my child has NF1 
  • Being forced to fight for things you never wanted to need. 
  • A letter to my son's first teacher - from a former teacher and autism mum - Someone's Mum 
  • On admitting it's ME who is overwhelmed and frustrated... 
  • Making a tiny bit of time mummy's 
  • Autism Awareness - #YourJourneyMyBlog - The Cloth That Keeps My Child From Breaking 
  • Parenting? 
  • 8 Signs Your ASD Child May Actually Have Have Pathological Demand Avoidance (PDA)? 
  • 40+ Calm Down Tools for Older Kids {Free Printable} 
  • 5 Autism Myths I Wish You Knew — Aspie Miss 
  • Special Education v Mainstream: Our Schooling Journey - My Home Truths 
  • Childhood Development: Between the Milestones - The Inspired Treehouse

Read More
Published Saturday, April 22, 2017 by

Overcoming my moments of jealousy

There are fleeting moments when I get jealous. When a post pops into my Facebook feed or someone tells me of a great thing they've done as a family.  In these moments I feel like we are missing out as a result of my son's autism, and I struggle with the loss of things that we can’t do / struggle with / have never done.

It is not something that I am proud of as we are happy as a family and have so much to be thankful for. It is just that when I am reminded of some of the struggles that we face I need a little time to reset myself. Time to get past the thoughts of what we are missing out on, and time to remember the moments we do have and the achievements we have made.

Parties, friends and playdates

When I see children with friends, pictures of birthday parties or hear of their playdates, I am reminded of the things he doesn't get to experience. I feel the loneliness, but he does not. He struggles with social interaction and his need to control the world prevents him from making friends. He misses the friends he had when he was younger, but in a crowd of people it is his Dad that he turns to for company.

When I feel the loss of friendship, I remember his amazing bond with his Dad and realise that he has a great friend already.

Academic progress

When I see children getting awards, I am reminded of the fact that he has never received an award or even pupil of the week. I feel his lack of progress compared to his peers but he does not. He struggles in a classroom, requires a lot of support to get through the day and took years just overcome his resistance to writing. He is progressing slower than his peers and is not full-filling his academic potential, but he loves searching for answers to questions that most children don't even think about.

When I feel his slow academic progress, I remember his inquisitive mind and realise that he doesn't need awards or validation from others to make him feel successful.

Participating in sports and activities

When I see children’s sporting achievements or photos of the activities that they have taken part in, I am reminded of the sports lessons which did not work out and the things we can't do. I feel him missing out but he does not. He struggles with team sports and any regular lessons, so our weekends are typically spent at home, but given the choice he would rather run around pretending to be a superhero or playing with his Lego.

When I feel his missing out on sports and other activities, I remember the skills he has mastered to create some amazing Lego creations and his training plan to become a ninja. I realise that he doesn't need to play a sport or learn a new skill to feel accomplished.

Days out, holidays and special occasions

When I see families enjoying fun times together, I am reminded of the days spent on edge as work at 200% to help my son get through the day and avoid a meltdown. I feel the struggles that we go through but he does not. We need to plan our trips carefully and special occasions are often tough, but as a family we are learning what suits us best and have had unexpected moments when our son has gone out of his way to make us laugh or do something caring for one of us.

When I feel our challenges with family events, I remember our Saturday night dance-a-thons and the summer weekends in our garden. I realise that we don't need to go away or wait for special occasions to have special moments as a family.

Overcoming my moments

When I have my moments I remind myself that other peoples' lives are not just made of Facebook moments and happy stories, and that each family have their challenges that I don't always see. I remind myself that everyone has their moments when they deal with their own struggles, and they also likely have fleeting moments of jealousy.

I remind myself that it's ok to feel sad sometimes and that our family is defined by what we make of the moments that we have together, not by what we can't do.  I remind myself of how far we have come, and that we are making progress every day. Who knows where we will be tomorrow.

I first wrote this post for the AutismAwareness site.
Read More
Published Saturday, April 22, 2017 by

Life with ASD Newsletter - no. 22

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

Back to school this week, and happy to say we made it through the Easter holidays.

With the end of April, the #yourJourneyMyBlog series that was run by Jodie from Autism with lots of love and Affection has come to a close. There were some really great stories shared by many families, including us.

Yvonne from Special Parents Handbook help a seminar to spread awareness on violent challenging behaviour, which I know has helped many parents dealing with this challenge to feel less alone.

I have also linked up with a new blogger, This Little Boy of Mine, who is a Stay at home wife and mum of three. Her youngest has ASD and suspected PDA (Pathological Demand Avoidance) syndrome. You can also find her on twitter. Do pop over and say hi.

Articles this week:
  • Happiness is a deep acceptance 
  • Wise Words 
  • They’re not asking for much.. 
  • Avoiding the E-Word (not thinking about our EHCP annual review) 
  • Understanding The Entire Spectrum Of Autism - Finding Cooper's Voice 
  • To the People I've Seen Less Since Becoming a Parent to Children With Special Needs 
  • Four Things My Severely Autistic Son Has Taught Me 
  • Tips for coping with the holiday period – Living with a Jude 
  • EHCP – The C isn’t compliance! 
  • Super Simple Hack to Revolutionize Your Morning Routine with Your Preschooler 
  • Tips for an Autism Friendly Bedroom and Bedtime Routine - Someone's Mum 
  • Behavior Social Stories - The Autism Helper 
  • Empathy didn't work. What do I do now? 
  • Do you have Magic Fairy Wings? 
  • Breaking the Silence on Violent Challenging Behaviour or VCB 

Read More
Published Friday, April 21, 2017 by

Avoiding the E-Word (not thinking about our EHCP annual review)

ehcp annual review

It is19 months since our Son was awarded an EHCP, 16 months since our emergency EHCP review and 12 months since he started at his current school. This week we have our first EHCP annual review, and it is fair to say that this is something that I have avoided thinking about as our previous experiences were so stressful. In fact I have been focusing on anything but our annual review, as I seem to be plagued with a major case of writer's block.

The same thing happened when writing our parental views for the EHCP, and again when preparing for the emergency review. I was frozen by the enormity of the task. After all the questions that they ask are such BIG questions .... "What do you think is important for your child", "What do you want for your child in the future", and "What needs or outcomes do you think needs to included for your child". 

HUGE questions - keep you up at night questions! What do we want? What does he need? What does he want? How can he be supported to be successful in later life? What does successful mean for him? These are things that I have agonised over, time and time again. In truth, I don't know if I have answers to any of these questions. 

Then there is the need for all outcomes to be SMART - Specific, Measurable, Attainable, Relevant and Timely. How can I state anything which is specific or attainable when I don't even know what he needs or what he could be capable of in the next year with the right support? Do I even need to be SMART when writing my parental views. As a parent, I am not even sure that any outcomes that I state will be considered without a professional's report detailing the evidence of his needs and the provisioning required to address them? Our 

Which brings me onto the professionals views? He is at a special school where SALT and OT, and other specialist support is made available to children if the school identify a need for it. Does this mean that I don't need to consider this? Should we have asked (months ago) for him to be reassessed by the professionals to determine his current needs, rather than rely on the school's assessment? Have I let him down but not asking for these assessments, and just accepting that the school will provide the necessary input into his EHCP? A lot has changed since in the 2 years since he was first assessed - can we be sure that all of his needs will have been identified and the appropriate provisioning specified without additional input from other professionals?

Lastly there is school. They have made such great progress with addressing many of our son's triggers, which means that we don't have the daily calls about behavioural incidents, however he does not seem to be progressing academically. We have had a major breakthrough with writing and he now enjoys reading to himself, however he is significantly below age expectations across all areas of the curriculum. Looking back at his records he was reported at above age expectations for Maths, and at age expectations for Reading when he started a year ago. Why is this - it is the school or the result of him struggling more  over the past year? How do I bring this up? How do I do this in a way that it does not seem like we are at odds with the school? After all we want to have a collaborative partnership with the school, and not one of blame. 

How do I approach this in a collaborative way to understand the challenges, taking onboard the schools points of view whilst maintaining our stance on ensuring that our son receives the provisioning that he needs to address ALL his needs ... not just the behavioural ones? After so much fighting the system, I am not up for another fight. Am I able to ask for more help and support without seeming confrontational or pushy? 

There are so many things that I want to say, but can't settle on how to say it in a way that is right for my parental views. And so my mind turns, and the paper remains blank. Why is it so difficult to find the words when what I want has not changed?

I want an environment where my Son is understood and supported, feels like he belongs and has the opportunity to live the life that is right for him and makes him happy. Now if only I could find a way to express that in my parental views, with the outcomes I think he needs to make that happen. 

Read More