SEND HUGS, Chesham (2025)

18/09/2025

The middle of the night is for catastrophising.

For "what happens if...?".

For being woken by a child who is riddled with anxiety and having no answers for her except that this is what we have to do, because even when they break their promises, even when they break the law, it's somehow still our fault.

For wondering how much longer this can go on.

For letting fear win for a little while, as I think about how being prosecuted for having a child who has not received the right support at school could destroy my livelihood, my family life - literally rip my family apart.

For making fried eggs on toast for the child who isn't able to eat before school because of the anxiety in the pit of her stomach, and can't eat at school either - trying to load her up so she doesn't get too hungry before she is able to eat tomorrow afternoon.

For doing work that has been neglected while I dealt with my own issues, for someone who also has sleepless nights to deal with.

For wondering where it all went wrong - how we got to the point where people care so much more about attendance figures than about the mental health of vulnerable children.

For thinking about the other child's hospital appointment in the morning and trying to remember everything that needs to be said.

For staying awake a little bit longer after being called, because experience shows that it's easier to stay awake than to keep being woken as soon as you've dropped off.

For researching, and hoping, and praying that someone will see sense and one day this will stop - for me and for all the others like me.

For remembering the sweet nights I spent awake with my babies, feeding and singing to them, gently rocking them back to sleep.

For remembering what my father said back then - "These are the golden times, because all your troubles are under one roof."

For wishing I could rock my babies and soothe them as easily now as I could then.

For tears of exhaustion and defeat to course down my cheeks as I wonder if I can ever make this right.

For wondering if any of those responsible for this situation ever lie awake wondering whether they're doing the right thing.

The night is not for sleeping. Not now.

17/09/2025

It was a long journey to parenthood for me. As my daughter used to say when she was little, "If all those babies had lived, you would have 12 children and we'd need a bigger house!"

I have loved each of my children fiercely and completely from the moment I first saw the photos of little bundles of cells beginning to divide.

I often worry about whether I have spoilt my children. There are certainly people in the world who believe I have.

The narrative this week is that "tough love" is needed, and "sometimes you have to force them".

This has never been my way.

My way is to explain why something needs to happen (or not happen), to encourage, to persuade, to say no when necessary, to praise when things go well, and to help them deal with the consequences when they don't.

I knew almost from the beginning that my first child was going to be determined. If she put her mind to something, she could usually do it - but if she couldn't do it straight away, it caused her enormous anxiety and stress.

Her EHCP talks about her strong intrinsic motivation to succeed and to please others. It also talks about the importance of positive interactions with adults, and the need for understanding and for building relationships with trusted adults.

I was called in for a meeting yesterday which I thought was going to be about how to support her.

It turned out to be something very different, and I'm not ashamed to say that I cried all the way through the meeting, and for much of the day afterwards.

The fact that the school is now a member of a multi-academy trust was mentioned. Policies were mentioned. Justifying attendance figures was mentioned. Even spreadsheets were mentioned.

Building relationships, supporting mental health and developing trust were not.

My child desperately wants to be at school. She knows she needs an education, and given the choice between being educated at home by me or being at school with her friends, she would choose her friends every time - if school was genuinely accessible for her. She has said this time and time again.

The fact that she is currently begging me to home educate her speaks volumes.

I really hope I can turn this around.

17/09/2025

Wednesday Weigh-in

I've just about recovered from the excesses of my birthday, but there was a bit of comfort eating yesterday.

Losing weight really isn't easy when life is so unpredictable.

Week 12 - UP 0.2 lbs (in two weeks)
Total so far - down 16.8 lbs

16/09/2025

Imagine a mother who tells her child's school that her child is having difficulties. The school suggest she might be autistic and that rather than wait for CAMHS, the family should get a private assessment.

The Senco introduces the mother to a private practitioner. He assesses the child and diagnoses her as autistic with PDA.

The child is very dysregulated at home, but is an expert masker at school. The teachers insist the child is fine in school.

The Senco always refers to the diagnosis as "a *private* diagnosis".

The head calls it a "label".

Three different teachers use the exact same phrase at different times to tell the mother that poor parenting is her child's only problem.

The child's struggles worsen. Every time any support is put in place, as soon as it begins to help it's withdrawn, because the school say it's no longer needed.

The mother thinks the child needs an EHCP, but the school disagrees.

The child moves on to secondary school, and the issues multiply.

The child's attendance drops, and she moves onto a reduced timetable.

The mother begs for help to get an EHCP, but everyone is too busy. Eventually, she applies for one herself.

By the time the EHCP is finalised, the child is burnt out and suffering from a physical illness that keeps her off school for several weeks.

The new school year comes. The mother is hopeful that the child may be able to attend school full time.

The first week is a disaster. The child makes it into school once, and it doesn't go well. She stops sleeping at night altogether and displays many signs of anxiety.

The mother realises she has expected too much of the child, too quickly.

The school call a meeting to discuss a reduced timetable, and she breathes a sigh of relief, hoping a more gradual reintegration will be possible.

She is blindsided by the revelation that the school will no longer be authorising her child's mental health absences, expects her in school by 8:30 every morning and will be hounding her with home visits if she ever fails to make it in. The mother is too stunned to fight back.

This should be a fictional horror story. But it's not. Nor is it even rare.

The parent blaming has to stop.

15/09/2025

One of the things people don't understand about children with SEND is that a lot of "choices" are not really choices at all.

All too often in reality, the choice being made is not between the neurotypical child's Option A and Option B, but between Option B and Secret Option Z.

Take "elective" home education, for instance. Most people see it as a choice between a school education and educating your child at home, with all the value judgements that such a choice entails.

But if school is an environment in which your child is unable to thrive, the choice for many of us is actually between home education and no education.

Or you might be looking at a reduced timetable. If the choice is between a part time education and a full time education, it's a no brainer.

But what if your child finds full days so difficult that when expected to attend school full time, they very quickly become burnt out and are unable to attend school at all?

The choice then is between a part time school education or no school education.

A child may be academically able, but emotionally unable to cope with too much academic pressure. The choice then may not be between a full range of highly academic subjects at GCSE and a narrower range of less academic qualifications. It may be between getting some qualifications and getting none due to burnout.

Choosing a special school over a mainstream one may look like a choice between a school that offers a full range of academic subjects and one which only offers foundation level maths and English at GCSE.

But the choice is more likely to be between a child who is happy and able to learn in the environment they are in and a child who is lost in a system that doesn't cater for their needs.

When making choices about our children's education, we are often making the decision to let go of the unattainable dream and accept reality.

It’s not an easy process, and sometimes we make mistakes. But trying to force our children into an environment in which it's impossible for them to thrive is like throwing them into the deep end of a swimming pool because there are other children who know how to swim, and then being surprised when they drown.

15/09/2025

T: “Will you still give me all the snuggles I need when you’re old and crusty and have forgotten who I am?”

Me: “Yes - I’ll say, ‘I don’t know who this young man is, but I love having snuggles with him.’”

And he smiled and went happily off to school.

14/09/2025

I really enjoyed meeting the families and fellow stallholders who attended yesterday's SENDFest - many thanks again to Chalfont Saints Inclusive Football (Frank’s Saints) for organising it. I even met a couple of people who told me they were already following my page - hello again to you!

It was clear from the conversations I had that there are too many children who are already struggling with the new school year, and too many parents who are having to pick up the pieces while schools struggle to deal with a crisis not of their own making due to lack of resources, funding and training in how to identify and deal with special educational needs.

The wait for an EHCP in Buckinghamshire at the moment is well over a year, with several hundred children currently waiting to be assessed by an educational psychologist before their application can progress.

This means two things - firstly, that if your child is struggling, it's really important to have a conversation with their school as early as possible so that the school is aware and can start putting some support in place and gathering evidence. You don't need a finalised EHCP in order to get support in school for your child. Support is based on needs, not diagnosis, so you don't need to wait for a diagnosis either.

The second is that if you believe that your child will need an EHCP, it's vital that an application is made before they are failing badly and the situation has become urgent.

If the school is unwilling or unable to apply for an EHCP for your child, it may well be worth putting in a parental application.

I will be running workshops to help parents with these applications from next month - watch this space for dates, but please do contact me earlier if you're keen to get the ball rolling or would like to discuss what support might be available for your child.

(Somehow, this quote from my daughter, then aged 2, reminds me of Bridget Phillipson!)

13/09/2025

All set up and ready for SENDFest! I'm right by the entrance - do pop in and say hello.

12/09/2025

Things my son's school and new class teachers have done to make it possible for him to go in happily every day of the first week of term:

- Issued a general invitation for all children on SEN support to visit their new classroom and teachers during a half hour slot at the end of an Inset day the week before the children were due to go back to school.

- Spent 20 minutes standing in the classroom chatting to him about nothing in particular during said visit.

- Made sure he knew who would be teaching him on which days and there were no surprises on the first day.

- Made him feel welcome and seen.

Things my daughter's school could have done, but didn't, making it impossible for her to attend more than one day of the first week of term:

- Sent a general email to all parents of children on SEN support to give them the name of the new Senco and explain the changes in learning support, so that they could prepare their children.

- Explained (preferably beforehand, but at least when the child was in school) the changes to the learning support hub and how it will work this year - again, this could have been done in a generic email to parents.

- Updated their website to show the names of the new Senco and other key staff and explain the changes to the hub.

- Given the child some indication of what support will be available to her this year (as required under the new EHCP that nobody has yet talked to her about) in place of the trusted adult who left at the end of last term and the LSA who was in most of her classes last year but will not be in the new classes she's taking as she starts on her GCSE options.

- Kept her parents in the loop so they could give her any sort of reassurance.

I could go on, but my point is that communication and meeting the child where they're at from the beginning avoids the sort of issues that create extra work for the school and turn small worries into unmanageable levels of anxiety.

11/09/2025

OLOPS SEND Toddler Group will be starting back after the holidays tomorrow, and if you’re in the area and have a child aged 0-5 who has special needs or a disability, you would be very welcome to join us.

Where: Our Lady’s Catholic Church, Chesham Bois - in the guildroom at the back of the church building (through the side gate to the left of the church)

When: Fridays in term time, 1:00-2:15

What: Toys, sensory play, singing and signing for the children; tea, coffee and chat with people who understand what it’s like to have a child with special needs for parents and carers

How much: We request a donation of £1-£2 to cover costs

No diagnosis or referral needed.

11/09/2025

Some of you may remember my post last month about Warwick Smith, who had recently been diagnosed with stage 4 cancer in his ribs, spine, lung, liver and brain. He was raising money for Macmillan, and watching his fundraising total grow and hearing how he had inspired others gave him immense pleasure.

Warwick was the bravest person I’ve ever known, and one of the most generous and humorous. He was truly a special person, and I’m devastated to be talking about him now in the past tense after he passed away yesterday.

His last post on Facebook was about a new fundraising idea, and he was full of glee on Monday when he announced that the total raised over all his different fundraisers had topped £81,000.

If you are able to spare a few pounds and would like to help him reach the £100,000 he was hoping to achieve, please donate here: https://www.justgiving.com/page/warwick-smith-1

10/09/2025

Having one non-sleeper and one co-sleeper isn’t usually a problem - except when the former calls me in the middle of the night and I come back to bed to discover that the latter has spread!

SEND HUGS

18/09/2025

17/09/2025

17/09/2025

16/09/2025

15/09/2025

15/09/2025

14/09/2025

13/09/2025

12/09/2025

11/09/2025

11/09/2025

10/09/2025

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