Sunday, May 14, 2017

Published Sunday, May 14, 2017 by

ASD & SEND Roundup #25

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

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

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

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

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

Enjoy!
Helen xx

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



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Saturday, May 06, 2017

Published Saturday, May 06, 2017 by

ASD & SEND Roundup #24

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

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

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

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

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

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



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Published Saturday, May 06, 2017 by

Successfully riding a bike after 3 years of trying


riding a bike can be difficult when you have proprioceptive difficulties


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

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

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

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

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

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


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Tuesday, May 02, 2017

Published Tuesday, May 02, 2017 by

THE E-WORD part 2: Our EHCP annual review

A PARENTS VIEW OF HOW THEIR EHCP ANNUAL REVIEW WENT


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

Input into the session

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

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

Talking about aspirations

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

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

Focusing on his progress and ongoing needs

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

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

Reviewing his outcomes

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

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

Reflecting on how it went

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

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


Useful resources

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

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


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Sunday, April 30, 2017

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

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Saturday, April 22, 2017

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.
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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. http://www.autismwithlove.co.uk/search/label/Autism

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 




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Friday, April 21, 2017

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. 

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Saturday, April 08, 2017

Published Saturday, April 08, 2017 by

Life with ASD Newsletter - no. 21

weekly round up of autism and special needs blog posts & articles
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Thursday, April 06, 2017

Published Thursday, April 06, 2017 by

The voice of my anxiety




My mind is racing.

Thoughts tumbling over one another, like waves crashing onto the shore. Racing from topic to topic, I can barely keep up - faster and faster the thoughts keep coming.

Thinking of everything I have done and how I could have done it differently, analysing every conversation that I have had, running through all the things I need to do and working out how I am going to do it.

There is no escape from the thoughts. Even in my sleep, they still keep coming and I wake up in the night when the thoughts have crowded out my sleep. There are no moments of quiet reflection. My body is filled with dread.

My stomach is churning and I have a sinking feeling that runs through my centre. Like a black hole, from which nothing can escape.

My body is tense. I can feel the muscles in my arms and back, pulled tight - the tension is always there. I am fighting my body, it wants to fight and lash out, anything to release the built up tension. I hold back, willing myself to appear calm.

I can't catch my breath.

My worries have worries. I need reassurance.

I want to talk it through. Can't stop talking. I talk to myself. Sort yourself out. Hold back, don't react. The feeling will pass and things will settle down.

I want to sort things out. I need to fix it. I need to do it all. Now.

My defences are up, and social niceties disappear. I want to escape, and run & hide. I can't trust myself with others as I fear that anything I say will make things worse. They will see I am struggling, I will annoy them, they will question my abilities.

I try to distract myself. Find something to slow the thoughts and calm the brain. I need to switch off, I need to calm down. Work through the motions, work through the chaos, work through the emotions.

It will pass, I know it will pass, it always does. A few hours, a few days, a few weeks - I just need to hold on.


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Wednesday, March 29, 2017

Published Wednesday, March 29, 2017 by

The story behind the picture - my mother's day cake


We have a new tradition - each year my kids get into the kitchen with Dad and bake me a cake for mothers day.

The end result is priceless - a haphazardly decorated cake filled with love and affection. The photos of the cake are treasured memories, however they only tell part of the story. The rest of the story makes that cake so much more meaningful.

What you don’t see in the photo is the hours of negotiation and management, as my husband worked patiently with Eldest and Youngest to help them through the different steps of cake making and decorating.

I had strict instructions from Eldest to stay well clear of the kitchen “for no particular reason”. That is four hours of being upstairs in my room, reading or watching a movie on Netflix (a great excuse for a lie in on a Sunday morning). Everyone had to keep the secret, and stick to a cover story that has been made up to hide what is really going on. This year they were "making themselves an extra big breakfast". The elaborate lengths that Eldest went to in order to keep the secret was hilarious - especially when Youngest broke ranks and mentioned the word cake.

Talking with Dad, I found out that everyone had assigned cake-making roles, and the process for making the cake had to be precise and exact. Any deviations from Eldest's plan resulted in a “no, no, no” and rising anxiety levels. This included the flour in the cake needs to be sifted by everyone, twice. A very lengthy, and somewhat stressful experience for all involved. The mixing process was strictly controlled, and once ready the cakes need to be carefully monitored to make sure they are cool. 

The decoration process was no different, and Eldest had some elaborate design plans. This year it was 54 hearts - with candles, a marshmallow crispie heart and a multitude of decorations.

Youngest had different ideas. which could have gone so wrong. Thankfully Dad knew just want to do - let them make two cakes ... yup a big cake from Eldest, and cup cakes from Youngest. Crises averted.

As I said the story behind the cake is so much more precious - a loving husband who knows just how to support his children to help them achieve something great, and has learnt to bake! The cake was delicious.  


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Monday, March 20, 2017

Published Monday, March 20, 2017 by

How my son's autism has changed me



a journey of self-discovery after my son was diagnosed with autism


Two years ago, we were told my son (then age 5) likely had autism. It came out of the blue, and I found myself thrown into a world that I had little understanding of. Sitting in the doctor’s room, I had no idea of the journey it would take me on or what a personal impact it would have on me.
I had been going through a tough time and felt like my life had become stuck, as I struggled with being a working mum. I had been seeing a life coach and just the month before we had done an exercise to imagine my future self, and I had made a list of the things to focus on. I was intent on becoming the person I had imagined myself to be.
Suddenly, I was focused on finding out more about autism, applying for an EHCP, battling the school, which wanted to exclude my son for challenging behaviour, and attending the many assessments required to get a diagnosis. It was hard to think about anything not linked to autism, and I quickly forgot all about my list. How could I think about my future self when there wasn’t even time to think about my present self?
My son is now in a much better place and life has become a little calmer. He has the right support in a new school and we understand more about his needs. Recently, I found my list and was amazed to realise that helping my son had helped me move closer to my future me, not further away.
I became connected. I met other parents through online forums and local support groups. Shared experiences and words of encouragement have helped me realise that I am not alone. Realising that many people are experiencing challenges that we don’t know about, I now take more time at work to see how the people around me are doing, rather than just focusing on the job. This has led to new friendships, and I feel more connected that ever before.
I learnt how to take a breath, slow down, and make time. At work and at home I found ways to do less, and started to use mindfulness to focus on the present rather than worry about the future or the past. This also means that I now try to just do the critical things that really need my attention, and have learnt how to say “no.” Funnily enough, I am now less stressed and am achieving a lot more with a lot less effort.
I started to give back. I shared my experiences in a blog, and now publish a weekly newsletter of blog posts and articles from other parents. This has allowed me to help other parents know that they are not alone, and to find answers to the many questions that they have. With an increased understanding of anxiety, I am a champion for mental health at work, and I have been able to help a number of people struggling with their own personal challenges. Helping others has allowed me to take some positives from our own experiences.
I stopped comparing. My family life is different to most of those around us, and I have accepted that there are many things that other families can do that we can’t. Before all this happened, I had been putting a lot of pressure on myself to be promoted, as all my peers had already made this step. I now know that their success is not my failure. We just have a different path.  Mine is on a scenic route that is allowing me to learn so many other things that I wouldn’t have if I had got my promotion earlier on. Rather than focusing on the things we can’t do or haven’t happened, I try to celebrate the little moments and appreciate all the things that have happened.
Life has been tough, and we still have our tough times. However, I know that I have changed for the better as a result. In facing the many challenges, I have come unstuck and now understand that taking time out to connect with the people around me is the key to helping me move forward.


You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers. 



I first wrote this post for AutismAwareness.com. You can find the original post here
Spectrum Sunday

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Sunday, March 12, 2017

Published Sunday, March 12, 2017 by

Melting down on a plane


Meltdowns are a reality of our life, though thankfully not as frequent as they once were. There is nothing more difficult or stressful than watching your child meltdown, knowing that there is little you can do to help them until they calm down as they are in a state of neurological chaos and their brains are not working correctly.

Recently our Son had 3 meltdowns on a long-haul plane journey, which meant we had no safe space to help him calm down. The strategies that we have previously used did not work, and we had a captive audience living it through with us. I could feel the emotions of everyone on the plan, and I felt powerless and judged. It was not a great experience.

Three weeks later, the thoughts of that journey still haunt me and I can't see us going on a long-haul flight again - at least not in a hurry.

Hopefully with Virgin looking into autism friendly holiday packages, they will also consider training airline staff on how best to support parents if their child has a meltdown mid-flight.

In the airport, whilst waiting for our luggage, I started to write about how I was feeling. Below is what I wrote.



I am beyond sad, my heart has been shattered by the piercing screams of my son crying out.

All I can do is sit close by powerless to help him and unable to find a place we could escape to.

My heart is heavy, trembling from the fear and trepidation. My breath catches in my throat as I struggle to breathe and hold back the tears.

I see the stares and hear the murmurs -  the people close by who want me to sort it.

There is no escape for him. He needs to work through the emotion & regain control. He is aware of nothing around him - consumed by the feeling that the world is wrong and he is unable to cope.

There is no escape for us. Thousands of feet in the air there is no exit, no safe place, no distraction. The screams and punches continue to flow, and we sit beside him - quiet, waiting, reassuring. No words, just being there.

My body is numb after hours of tense muscles, as I sit waiting to reach out and help. Waiting for the storm to pass.

He comes back to us slowly, but not completely. I can tell by his eyes that he is still caught between two worlds, unable to speak or communicate. His little body is rigid and I can almost hear his racing heart.

We sink into our chairs, spent. I need to move, regain myself, so I can be there for him.

Another meltdown is over and we start to pick up the pieces - a word here, a word there ...on tip toes we dance, not wanting to trigger him again whilst emotions are high.

The plane is calmer now and the murmurs have quietened down. You can hear a pin drop as the other passengers say a silent thanks that it is all over.

Whilst they go home thinking of their nightmare journey, I head home wondering how I can help my Son and ensure that next time he is a little more equipped to deal with his emotions and frustrations. Wondering how I can make the world around us understand. Wondering how I can ensure that next time we are supported, rather than judged.




You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.


Your views

Leave your comments below.

Do you struggle with meltdowns? How do you cope with meltdowns? What do you wish people would do when your child melts down in public?


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Thursday, March 09, 2017

Published Thursday, March 09, 2017 by

Private assessments - my knees vs. autism



For the past 3 weeks I have been troubled by my knees which has left me struggling to function on a daily basis and I have difficulties in doing things that other people don’t even have to think about. As you can imagine, I have been keen to understand why and then do something to get the use of my knees back. This was not really something that I wanted to wait around for, and luckily I have private health care insurance from work.

Within days I saw a private consultant who carried out an assessment, determined what the issue was, told me about my short-term & long-term options, and then referred me onto physio who should be able to help me walk without the need for crutches. For my long-term options I wanted a second opinion, and have an appointment booked with another consultant so that I can make an informed choice about what is best for me and my knees. When people ask me about my knees, their response to me going private is typically along the lines of “good that you have that option, it can make such a difference to getting support quickly”.

As I made my way to my private physio appointment last night, thankful that after 3 weeks I was getting some support to help me improve my knee function, I started to think about the recent reports of parents “rushing to the front of the queue” and “working the system” to get support for their children with SEND needs. I thought about my previous post outlining my reasons for getting private assessments for my son. I thought about the many parents who have gone down the route of getting private assessments in the hope of trying to get some support for their child who is struggling in school, only to have those assessments discounted or ignored by schools and local authorities. Those parents who are have been accused of buying their diagnosis, or trying to get a diagnosis for a competitive advantage or benefit. It left me wondering why.

Why is getting is me getting a private assessment for my knees viewed as a perfectly acceptable and reasonable option getting help when time is of the essence, whilst doing the same thing for my son's autism is viewed by some as jumping the queue or working the system?

It seems to me that getting a private assessment for physical health care needs like my knee is accepted as people can see and understand the challenge of not being able to walk more that ten steps without support, whilst acceptance of private assessments for invisible disabilities like my sons autism still has a way to go as it is harder for people to fully see and understand the extent to which he is challenged in every day life.

Wouldn’t it be great if one day the same level of acceptance was given to private assessments and diagnosis for autism, and other invisible disabilities, as my private knee assessment. A day when parents could use their private assessments as evidence of needs to schools and local authorities, to receive support to meet these needs.

I hope to see the day when I can talk about private assessments for my son's autism being viewed with the same validity as private assessments for my knee.



You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers. 






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Monday, March 06, 2017

Published Monday, March 06, 2017 by

Hooked on labels - a parent survey response

SEND misdiagnosis, labels, pushy parents, assessments


Frustrated by a lack of balanced reporting in relation to the recent Hooked on Labels report by GL Assessments based on a survey of teachers, I decided to run my own poll and capture parents views.

A quick recap for those who missed this.  The survey by GL assessments,  which was covered in the  media (TES, the Guardian and the Independent), reported that teachers believe pushy parents are leading to unneeded (and incorrect) SEND diagnosis for some children. Opinions cited as reasons cited for this included gaining a competitive advantage, refusal to accept that a problem could be solved in the classroom, working the system, and wanting a label to avoid judgement of parenting skills.

There were many reasons that I was upset by this. This included a lack of the parents voice, no consideration of the wider context and no mention of the many challenges faced by SEN parents trying to access support for their child's needs. I hope that my polls can help shine a light on one of the other sides to this story and address some of the points raised in the report.

The polls

The snap polls captured the views of 100+ people over the course of a week. Voters also shared insights into their views by commenting on the twitter polls and in discussions on Facebook (need for labels & private assessments).

I asked two questions:


Almost all (92%) believed that a "label" i.e. diagnosis is needed to get support, and the primary reason cited for getting a private assessment was a lack of school support. Interestingly, when it came to reasons for seeking private assessments, long waiting times for diagnosis received less votes than a lack of school support and not being listened to.

I can't comment on why parents voted the way they did or guarantee that the views are representative of all SEN parents. What I can do is summarise what they said, and let you decide for yourself. 

So, why do parents want a 'label'?

Are parents too focused on getting a label? Are they looking to place them in a box to get extra help? Are they trying to avoid judgement for their child's behaviour, or even their own parenting skills?

Firstly not all parents wanted a label or viewed having a label as a positive thing, and as one Dad pointed out there are many children who don't want a label as they don't want to be seen as having special needs.  

It's not a label, it's a key (opening doors to resources, support and understanding) 

For some parents a diagnosis was not seen as label, but as something to help identify needs. For others, the words label and diagnosis where thought of interchangeably. So a diagnosis can be viewed as both a label and a way of identifying a child's needs.

Self-understanding

One reason parents wanted a diagnosis was so that they could understand why their child was struggling, and to identify the strategies to support them. Some parents also felt that a diagnosis helped them to accept their child's needs, plan for their future and identify the path to follow in order to ensure that their child was supported in their current and future life.

without a label you can't learn about the specifics of a condition, it's harder to make adjustments as a parent

The value of an early diagnosis was highlighted by a woman whose mother had suspected that she had autism as a teenager but was dismissed. Her parents had no support as she grew up, and she felt let down by school. Growing up, she knew that she was different but didn't understand why. Now in her thirties, she is going through the ASD assessment and is learning to be accepting of herself.

To gain acknowledgement

Being believed was a challenge that many parents highlighted, where they were not able to get the backing of teachers and healthcare professionals to assess their child for potential SEN needs or provide them with additional support. In some instances, this was despite having a confirmed diagnosis (NHS and private).

daughters diagnosis with NHS at 3, still two teachers have told me 'its not autism'

A lack of understanding was also noted by some parents. Parents believed this was either due to a lack of SEN training / experience and misconceptions about what is/ isn't characteristic of a particular condition.

Too many times I hear parents and see them crying through the frustrations caused by the inability and lack of understanding by schools

In other instances parent had been accused of looking for problems that weren't there, or were blamed for their children's problems. In particular parents had been told that their own anxiety was to blame for their child's behaviour rather than an underlying SEN need. With parents talking of discrimination due to being on the spectrum themselves, accusations of neglect and enforcement of child protection orders, it seems like many are having to face parental blame.
have been told for 3 years that my 'parenting skills' and 'anxiety' are to blame

The importance of teacher backing in accessing support was highlighted by a mum who struggled for years to have her son's needs acknowledged by his school. That changed when he started year 2 and his teacher said that she thought there was a problem. After that things changed for the family, and they were able to have the discussions necessary to put the right support in place.

Why not just rely on school to meet needs?

Are parents looking for a medical or psychological explanation for something that can be addressed in the classroom? Are children able to receive an accurate assessment, personalised teaching and targeted support without an external intervention?

In addition to challenges of school not believing / accepting that a child has SEN needs, most parents stated that they were not able to get any support without a diagnosis and only a handful of parents reported receiving support from the school without a diagnosis. 

I don't care about money .... without a diagnosis or statement you get zero help
Even where schools were supportive and wanted to help, there were other factors noted which limited a schools capacity to provide the necessary level of support.

Need for outside services

Sometimes school support was not enough. Parents indicated a need for support from other services, including Occupational Therapy and Speech and Language Therapy. To access these services, parents needed a diagnosis. 

Availability of Resources

Limited availability of funds and support services were noted by parents.

Lack of funding or allocation of limited funding only to extreme cases, was a key challenge noted by parents. In some cases parents had a supportive school however there were insufficient resources to provide the level of support required.

This issue was highlighted by a SENCO  who struggled to get a child assessed by an Educational Psychologist, as they had no capacity to carry out assessments. In the end she sought a private assessment, and then had to justify why she had done so.

Limited access to resources was highlighted in other areas as well, including access to Occupational Therapy (OT) and Speech and Language Therapy (SALT).

Required evidence of needs

The needing to evidence a child's needs to access support was another reasons highlighted for parents wanting a diagnosis. In one case a parent was advised by the school that they wouldn't be able to apply for an EHCP (a falsehood) or access support until they had a diagnosis and associated paperwork to evidence their child's needs.

they reckon they support needs not labels and then demand evidence

Evidencing needs was also noted as being essential if parents wanted to legally challenge the SEN provisioning for their child.

Why be pushy?

Is parental anxiety getting in the way of an objective evaluation? Are parents pushing to have their children assessed to be able to get support quicker? Are parents demanding too much time with teachers?

Many parents admitted to being a pushy parent after having faced multiple battles, often for many years, to access support.

Immediate need for support

Time was a critical factor for a number of parents, where their child was struggling at school and the need for support was urgent. They spoke of having to push to do what they could in order to help their child. For many this involved private assessments, whilst for one mum it meant needing to change schools multiple times in order to achieve the best outcomes for her son.

 No one was coping & no one was going to help fast enough

For many a private assessment was able to help, however they didn't alway seem to hold the answer. In some cases parents indicated that the quality of their assessments were questionable, whilst others had been informed that their private assessments would not be accepted by their Local Authority and couldn't be relied on to provide evidence of their child's needs.

Long wait for diagnosis

Struggling for a diagnosis, with a wait of anywhere up to 5 years was another challenge for parents. In one case a parent waited 4 years for a diagnosis, which was hampered by the fact that the first set of paperwork was lost.

we went private as this was the only way. 4 months tests and ASD moderate/severe. NHS took 5 years and zero tests. 


Ongoing challenges to obtain support

Ongoing battles for support, even with a diagnosis, was a common source of frustration for parents. This included challenges with EHCPs, authorities, LA funding, and a lack of a cultural change in schools following the change in legislation.

as a family were left feeling battered and bruised by the system

Not everyone spoke of challenges in getting support. A number of people spoke highly of the support that they had received from school, and for one mum it was the school who suggested going for an assessment as they suspected autism.

What have I learnt

Yes there does seem to be a focus on diagnosis (labels) rather than needs, and parents are pushing for a diagnosis to get more support for their children.

It would appear that in many cases parents are being pushed to provide a label to evidence needs, and they they often struggle against numerous challenges to ensure their child is provided with the required level of support. Something which can take years to achieve.

With limited resources, long waits for a diagnosis, the need to provide evidence, and a battle to have their child's needs acknowledged/ accepted it would appear that parents often have little other choice but to be pushy.


Please leave your comments below if you have any views in relation to the GL Assessment survey, pushy parents and SEND misdiagnosis, or a focus on needs vs. labels


Note. I am am not a qualified researcher, SEN expert, or someone who understands all the battles that parents and teachers face in meeting childrens' SEN needs. I am just a mum trying to make sense of it all.  Unless specifically noted, views stated are not necessarily my own and are a representation of the responses shared by others in response to my polls. 


You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.



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Friday, March 03, 2017

Published Friday, March 03, 2017 by

Me, my son and SEND labels



I've been thinking a lot since my initial response to the report by GL Assessment - which really triggered my “Tiger mom” response. One of the points that I've been pondering is labelling - since the title of the report “focus on labels rather than needs”. There are many different viewpoints and parents feel passionately on this topic. 

My own views about wanting or needing a label has changed as our circumstances changed, and how important it was for us to have a label to get support for our Son.

I didn’t want the label

When my Son had some issues at nursery, we were asked permission for the Inclusion team to observe him to try get more insight into the issues. I knew nothing about autism or special needs, or what a visit from the Inclusion team would mean for my Son. 

His key worker had recently left and I believed the issue was with the new key worker rather than my Son, as we hadn’t had issues before and didn’t have issues at home. 

Worried about a review being in his records and not knowledgeable enough to make an informed decision, I believed that the nursery were looking for excuses rather than admit the challenges of the setting. As a result, I was defensive and resistant to any outside involvement being brought in. 

I wanted my little boy to have every chance of success, and didn't want him to be written off as a difficult child with a behaviour issue. When his behaviour settled down, I felt justified in my beliefs but I was wrong. 

It was the fear of a label that prevented me trying to get early support for my Son.

He was judged without a label

Within weeks of starting school we were regularly being called in to discuss his increasingly challenging behaviour. At it was questions about whether anything at school could be upsetting him, then it was discussions about the behavioural incidents, and eventually it was concerns raised about whether the school was the right setting for him.

Before the October half-term it had escalated to round-table discussions with the teacher, SENCO, head of junior school and headteacher. You know it is just a matter of time when each meeting is officially minuted by one of the school secretaries. Without time on our side, I knew I had to come something and quickly. 

I consulted the Great Oracle (a.k.a. Google) about possible underlying behavioural conditions, to see if there was anything that could explain why my child was so challenging at school (but not at home). I needed to understand for myself, so I could explain to the school in the hope that they would give him the time and support he needed to settle down. 

Without a label to explain his behaviour, he was given one - naughty. 

We struggled for a label

According to the Great Oracle the possible reasons included a surge in testosterone in boys around 5/6 (quickly ruled this one out), ADHD and Aspergers. With this new insight I went off to my Doctors, explained our situation and asked for help. With the promise of a referal to a paediatrician I left hopeful - thinking that with the right understanding we would be able to work with the school to support my Son rather than him be written off as naughty.

The appointment letter for the paediatrician didn't come - so I chased, and chased, and chased. The waiting time for priority cases was 5 months, and we were not a priority. How much more of a priority did you need than a child who was on the verge of being kicked out of school? Thankfully my Doctor helped get us noted as a priority and we were put on the waiting list.

With no signs of an appointment and the situation at school deteriorating, we went for a private assessment (and then a few more). It was like stepping onto a fast moving train and we found ourselves caught up in a whirlwind of assessments, reports and reviews. It was manic, but I was prepared to do anything I could to get a diagnosis. 

I was desperate for a diagnosis so we could give the school a label to explain his behaviour, and get him the support he needed before he was kicked out of school. 

We questioned the label

Fast forward 9 months. We had a diagnosis (or several) - Autism Spectrum Disorder (ASD), social communication difficulties, and proprioception sensory needs. We also had an EHCP (a story in its own right), and a place in a unit attached to a mainstream school which specialised in autism.

We were hopeful and knew that we were lucky - many parents struggled for years to get any support at all. This optimism didn't last long as we quickly found ourselves at a new table talking about behavioural issues and the suitability of the new setting. Less than 2 months, and we were having to fight yet another school to prevent our Son from being pushed out.

By now we new that our Son didn't fit the classic definition of autism - he is imaginative, is not ritualistic, maintains eye contact and didn't seem bothered by a lack of routine (in fact routine often had a negative impact). The diagnosis or label didn't fully seem to fit. Even with label he wasn't getting the support he needed, as the strategies that worked for others with the same label didn't work for him.

The label was able to get us some support, but it didn't lead to the right support and we questioned whether our Son had been given the wrong label.

We shifted our focus from the label

With another school placement breakdown looming, we went back for more assessments. The school and CAHMS believed he had ADHD, however this didn't seem to fit either. We believed that he might have Pathological Demand Avoidance (PDA), which is not widely recognised.

We wondered whether to get him assessed privately again, however questioned the value of another assessment for a little boy whose world had been turned upside down and was starting to become resentful of the many medical appointments.

Things changed after he moved to his third school - a special school for children with Behavioural, Emotional and Social difficulties. Within a week the ADHD was dismissed, and many of the traits that I had thought might be due to undiagnosed PDA seemed to calm down.

Suddenly it seemed like extreme anxiety at school and a need to control the world and people around him were the reasons for his extreme behaviour. In the right setting and with the right support, he went from several behavioural incidents per week to nothing in nine months. He refusal to write or do work in lessons is changing, and he has made some great progress.

I don't know whether he has atypical autism, ADHD, PDA or something else.  None of the labels exactly fit and he seems to have a little bit of each. Right now I don't feel we need to put a name to it

In the end we didn't care what you called it, as long as he was able to receive the help he needed.



You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.


Other parents views

Next week I'll be sharing the results of my 2 recent twitter polls, along with some of the experiences that parents have shared with me.

I'm keen to hear from other parents on whether they feel labels are required to get support.

Please leave your thoughts on my Facebook post, or in the comments below. If you are on twitter it would be great if you could vote in the poll that I am currently running.






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Sunday, February 26, 2017

Published Sunday, February 26, 2017 by

Pushy parents and SEN diagnosis - A question of "invisibility"

Parents often need to fight hard when their children disability is invisbile


There are many responses to the recent report by GL Assessments, and many different angles to consider it from.

Following on from my personal response to the report, I would like to share another point of view from an independent SEND training consultant. Olga has been a great support to me and many other parents I know over the years. Her insights have been invaluable and I am pleased to share some of her thoughts with you.



There are disabilities that are visible and there are disabilities that are not.

This was the key thought arising in my mind when I woke yesterday to scroll through Facebook and read the many posts and responses to the article in “The Guardian” that describes a recent teacher poll about attitudes towards parents of children with SEND.

Let me get this out of the way before I go any further, because implicit in this social media debate there appears to be a fundamental division of understanding between SEND parents and teachers that were surveyed about what constitutes “a disability.” By extension, if the disability is “invisible” teachers cannot “See” the issues. Therefore; it “cannot exist.”

Several responses within the SEND blogging community have already highlighted very eloquently the inappropriate pitch of the survey. It does beg the question, “Why conduct a survey in the first place, where respondents have no professional training to respond to the nature of the questions asked?”

Why ask questions, about the validity of clinical diagnosis (and misdiagnosis) to a group of respondents who have, in all likely hood, had zero training on:
  • The diagnostic criteria of these conditions.
  • The differential aspects and variants of each condition.
  • How it presents in boys as opposed to girls.
  • What the appropriate observational and assessment tools might be to assess.
  • How to interpret their results.
“It must be mum” couldn’t have put it better in her post The Absence of Critical Thinking

I admire this kind of post, not least because it dissects the issue so “professionally” and with objectivity. I admire this skill in objectivity; because as both a SEND parent myself and as a SEND training professional and independent advocate I know that taking the emotion out of the subject can be so very difficult for SEND parents to do. Which brings me to objectivity and “grief.”

Parents who have a child with a disability will go through a state of “grief” at some point or another in their child’s journey. It is a well- known phenomenon. Those of us who work directly with families, are tuned-in to this process. To work successfully with a family whose child is disabled, you need a high level of “soft skills” including listening, reflecting, helping to problem solve, separating issues, and validating.

So, let’s talk about “grief” and how that might be perceived as “pushy” by the “untrained eye” or perhaps “acceptance” is a better word. Because even the word “grief” is perhaps loaded with stigma. It conjures images of immense pain; of death of a loved one; of a feeling of deep void; of isolation; because no-one else appears to feel that depth of sorrow, but you.

If you have never given birth to or adopted a child who you assumed to be “ordinary” at birth, to be then hit with the realisation that he or she will never be “ordinary” and watch their daily monumental struggle because they cannot make sense of many “ordinary” things let me tell you that that is exactly how it feels. It is often a feeling of deep sorrow I see in the families I help.

It is painful, there is a void and it is isolating.

We’ve all heard of the 5 stages of “grief”. Shock- then denial- then anger- then depression until finally arriving at “acceptance.” I see Parents of children with disabilities go through these stages, albeit at a different pace. The pace of their progression through that tunnel of acceptance is influenced by many things, positively or negatively:

Knowledge, understanding of the condition/s; family support; parent physical and mental health; parent level of education; available financial resource; a network of support outside the family and lastly, access to education and professionals who are trained to reduce or manage the barriers arising from the disability.

So, let’s look at this issue more closely, because my experience as a professional that works at the intersection between parents/ schools/ professional therapies/ law is that the experience of a parent with a child who has a “visible” condition is VERY different to the experience of a parent who have a child with an “invisible” disability.

For parents with a child whose condition is “visible”, the grief process starts earlier, often at birth or early in life; sometimes in pregnancy and with that, comes a lot of professional support. I am often amazed at the difference in self- advocacy skills, resilience and self-confidence between parents of children with Down Syndrome and parents of children with an invisible neurodevelopmental condition such as “high functioning” ASD.

By the time their children enter the world of compulsory education and the challenges that come with it, the group of parents of children with a visible disability have things in place. They have developed a high level of self-advocacy skills. They are accustomed to working collaboratively with professionals.

Yes, there are still battles around scarce resource around essential aids and equipment; I but by and large, what I see, is a tremendous disparity in the level of understanding and support these families receive by professionals and teachers.

It is extremely rare for me to see a family where a parent is at a loss because the special school the child attends is blaming them for their child’s disability.

And yet I see that type of plight almost daily from parents who are floundering in a situation where they are desperately asking for help, and no one is listening.

Parents where their child is clearly at the precipice of school-refusing because the unidentified “needs” are so multiple and complex they cannot take another day in that hostile environment; I see families where teenagers have tried to take their own life, because it all got too much. I see families where the child has been given detention after detention after detention because the teacher fails to understand and accept that the child has severe difficulties with working memory, so keeps forgetting items and homework. The prevalence of mental health problems and pressures on CAMHS services are well reported in the media. I see this too at the frontline.

I do not see a system which is exacerbated by “pushy parents” I see a system which is at bursting point. And when everyone is overloaded, the finger is now being pointed at parents, who along with the disabled child happen to be the most vulnerable in the equation.

This must stop.

There has to be a fundamental shift in culture and thinking if this survey is indicative of mainstream teacher perceptions.

It begs the questions. “Where does this culture of “blame” stem from?
  • Is this a culture resulting from the pressures that OFSTED throw onto mainstream schools?
  • Are mainstream teachers so overloaded there is no room left for dealing with “extras”?
  • How are the core skills of listening, critical thinking, observing and reflecting taught in teacher training?
  • What accountability is there when mainstream teachers disregard professional advice?
  • Is the time resource given to SENCOS and the training they have had, anywhere near adequate?
  • How can mainstream teaching professionals possibly be expected to assess mainstream children with invisible disabilities when the level of training they receive is so basic?

The irony of this apparent blame culture, is that the very parents that are being accused of being “pushy” are often, in my experience the people who are very well placed to impart information to teachers and help them arrive at a solution. Why is this vital, ( free!) resource not being used?

Many parents of “invisible” disabilities I have met are so knowledgeable about their child’s condition they are deserving of an honorary degree in the subject. They are often very articulate, self-sacrificing parents who work very hard at understanding and raising their child so that they will NOT grow up to be a resource drain on the tax payer.

The internet has also drastically changed the way parents of SEND children network and learn from each other. The pooling of knowledge and resource that occurs on a daily basis is tremendous, both in quality and quantity.

I have a further burning question:

Is there a hierarchical culture within the mainstream teaching sector where it is counter-intuitive to ask parents what should happen? Are some teachers trained to think “They always should have all the answers?” “Are teachers frightened to admit they don’t have all the answers?”

I’d love to know.




Olga Hamer is an independent SEND training consultant, volunteer, advocate, illustrator and parent to a child with ASD.

You can more find out more about Olga at:
www.sen-nav.org.uk ( currently under construction, due to go live soon)

You can also connect with her on twitter and facebook





Spectrum Sunday

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