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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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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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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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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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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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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