SEND HUGS, Chesham (2026)

31/01/2026

I regularly talk to parents of neurodivergent children who are terrified that they're not doing enough to help their children become independent adults.

Part of the fear comes from the way children are constantly being pushed to step up to the next level.

We don't enjoy cuddling our newborns, because we're told they need to learn to self soothe.

Toddlers have to be "ready for school".

4-year-olds are criticised for wanting to run around and play rather than sitting still at a desk.

We're told children in Key Stage 1 need to learn to behave like Key Stage 2 children.

As soon as they hit Key Stage 2, they're expected to start getting ready for secondary school.

And when they get to secondary school, they're pushed to prepare for adulthood.

Parents whose children need more reassurance are condemned as "helicopter parents", and schools disapprovingly say things like, "Mum's terribly anxious."

What many of these critics don't see is what comes first.

Are our children clingy because we're always hovering around them, or do we stay close to offer reassurance because they're anxious?

Are they unable to do their buttons because we help them too much, or do we continue to help them because they struggle more than other children with fine motor skills?

If a child is slow to learn a new skill or develop independence in a particular area, this is not a sign of moral failure in either the parent or the child.

The education system wants to force our children to race through their childhood at breakneck speed.

Some children need a slower pace and more support along the way. They reach milestones when they're ready, not when the Department for Education says they should be there.

My daughter could ride a bicycle without stabilisers at 3. My son is still nowhere close at 11. Most children fall somewhere between the two.

Childhood is not a race to independence and adulthood. It's a golden, carefree time to cherish and enjoy. As parents, we should be allowed to embrace that, however long it takes.

And if it means more cuddles along the way - well, I'm not complaining!

30/01/2026

Five years ago today, we hit a major milestone in our parenting journey - my daughter received her diagnosis of autism with PDA.

It was the first time I'd ever heard of PDA, and I immediately ordered the books that were recommended in her diagnosis report and then went to the PDA Society's website to find out more about what we were dealing with.

There were things that had happened in her first eight and three quarter years that I'd never understood and had always taken to mean that I was a terrible mother. Other things, I'd taken as unique little quirks of my daughter's character. Others just had me scratching my head and wondering what on earth was going on in her head.

Every single one of these traits, quirks and puzzles was set out there in black and white. I had never read such a complete and accurate description of my child.

Just weeks later, someone said to me, "I don't care what label you've got for your child!"

It isn't a label.

It's shorthand for everything that explains who she is, why she's so special and why she's so good at some things and struggles so much with others.

Nothing really changed the day we got the diagnosis, but at the same time, everything did.

Our beautiful, amazing, complex, brilliant child didn't change.

But it was as if we'd been navigating her life with the wrong map, and every turn we were taking took us deeper into alien territory.

The diagnosis gave us a new map - one which looked different and sometimes scary.

The road is still often muddy and obscure, and we still often take wrong turns, especially when we're tired and other people are yelling at us to follow them.

But the more we try to follow the new road map, the more the journey begins to make sense.

And we couldn't love her more.

30/01/2026

One of my son’s favourite treats - a 12” Italian with cheese and extra cheese. Not toasted, no salad and no sauce.

It took a few visits before they could bear to do my order without questioning it, but today, as soon as I’d said, “with cheese and extra cheese,” the server smiled and replied, “Not toasted, no sauce?”

I feel seen!

29/01/2026

This exchange happened when my son was in Year 2, but he first told me how meaningless rewards were when he was in Reception and couldn’t care less whether he won stickers - he never liked stickers anyway.

Unfortunately, he can sniff out insincerity in an instant, and he knows whether he’s done something he considers worthy of praise. If he hasn’t, rewards just annoy him - and if he has, the intrinsic reward of knowing he’s done a good job is what really satisfies him. He distrusts praise and sees it as either patronising or an instrument of control.

It also works the other way. If he doesn’t see what he’s done wrong, there is no way on earth that he’ll apologise. The more anyone tries to make him see the error of his ways, the more upset he’ll get, until he either explodes or shuts down altogether.

He’s extremely sensitive to tone, and gets very upset if he feels someone is criticising him or is angry with him.

I kind of like the honesty of his approach, but it can make for some challenging conversations.

“I don’t understand why I got in trouble for hitting the wall - at least I didn’t hit the person” can be hard to argue with, especially when you’ve had discussions before about letting your frustration out in a safe way and not hurting people.

Nuance is also difficult for him, and he will say what he thinks without policing his tone. Fortunately, I was supervising when he wrote his Christmas thank you letters, and I was able to explain that, “Thank you for the present. I don’t know what I’ll do with it, but it’s the thought that counts,” is not considered a polite way to thank someone for thinking of you.

I see some challenges in the school years ahead.

28/01/2026

My daughter's at home again today. It's been a week now, so I'm expecting the school to be on my back. But here's the thing.

At exactly 3:30 this morning, she messaged my phone to tell me she couldn't go to school today.

At 7:30, I found that her mental state has improved enough that for the first time in a week, she hadn't barricaded herself into her bedroom. I checked how she was feeling and it was still a no - but she was awake and communicating with me, which is another win and a good sign for tomorrow.

I managed to get my son to school, and somewhere in the middle of all the scaffolding that he needed, I managed to email my daughter's school.

Just before 9:00, I was nearly home when she phoned me. Fantastic - that means she's up. Even better, she asked me to buy her some fresh fruit. I'd already passed Sainsbury's, but I went back - I rather rashly told her when she was a toddler that if she asked for fruit, I would never say no. Clearly, this is one of the things that she will never forget and will always hold me to.

But eating breakfast, and even better, eating something healthy for breakfast, is a really positive sign that she's feeling better.

I got home with the fruit, and she asked for boiled eggs. I said I would make the eggs once I had finished sending an email.

In the course of writing that email, I was called to her room four times - every time my bottom hit the seat and I reread my last sentence to recover my train of thought, she called me again and I had to get up and go to her.

Great, she's communicating with me again.

I boiled the eggs, and when I took them to her, she asked for some water.

I delivered the water and went back to my desk.

I was two minutes into getting my head around the next task when she asked for some cereal.

When I delivered it, she said she wouldn't disturb me again. Great, she's feeling reassured and comfortable enough to manage on her own for a while.

It's now 10:45, and I still haven't been able to start work. At 2:00, I have to be at my son's school for his class assembly.

Will someone please explain to me how school could possibly think I'm choosing to keep my daughter at home to make my life easy?

27/01/2026

This week is brought to you by the emoji 😬.

Last week, my daughter’s anxiety increased to an unmanageable level. She hasn’t been able to go to school since Wednesday.

At my last meeting with school, it was clear they see this as a behavioural issue - all we need to do is reason with her, and force her if she won't comply. They’ve told me they know there will be “some backlash” at home, but this is a small price to pay for improving her attendance.

In this narrative, I'm the problem - I'm too soft, make home too tempting, don't enforce boundaries.

If only it were that simple!

There has been “backlash”, but it isn’t a behavioural issue - unless you believe the snarling of a cornered dog or the fleeing of a prey animal from a predator is nothing but bad behaviour, to be disciplined out of them.

We’ve had headaches, “I can’t do it”s and sleepless nights. Things have happened that have not been safe for anyone. My priority is to calm and reassure a child whose body is pumped full of adrenaline.

The biggest pull attracting her towards school is the thought of seeing her friends. She would much rather spend time with them than alone in her bedroom.

But making home into a place where she doesn't feel safe won't make her feel safer at school. Experience shows that the harder things are at school, the more dysregulated she is at home, and the more dysregulated she is at home, the harder it is for her to access school. The vicious circle starts at school, not home.

Giving her a safe space to regroup and recover is the most reliable way to get her back to school - but the school environment also needs to be right, or the downward spiral will start again.

My son is struggling with some changes to the normal routine at school this week. When he doesn’t sleep, it really affects his ability to function the next day. Last night, a lot of anxiety came out at bedtime, and he slept badly and woke with a headache.

A day to recover pays dividends for him. Without that reset, he continues to spiral until every morning is a drama.

And then there's everything else...

So 😬. At least January is nearly over, and the snowdrops tell us spring is round the corner.

26/01/2026

Another of the sessions at last week's conference was about designing neuro-inclusive schools.

Dr Helen Ross acknowledged the issues SENCos face these days, with inadequate funding, high levels of need and insufficient staffing and resources. It's not enough for the government just to say mainstream schools need to be more inclusive and push yet another problem down onto stressed and overworked school staff.

The situation schools are in now is similar to the couple who are lost in rural Ireland. They stop to ask a local the way to Dublin, and he scratches his head, sighs and says, "Well, if you want to get to Dublin, I wouldn't be starting from here."

Truly inclusive schools need to be designed from the bottom up, rather than take an existing, not so inclusive system and bolt on a few extras.

One of the problems with differentiation in the classroom is that it makes children... look different. Teachers may not be giving out dunce caps any more, but if the children on one table are doing one version of a worksheet and the children on another are doing a greatly simplified version, all the children know where they sit in the class hierarchy.

Headphones and fidgets may be available to children who need them, but those children can feel singled out and want to blend in more with their peers, so that they refuse the adjustments which would make their lives somewhat easier.

One solution is to make adjustments available to all children. There is no stigma attached to choosing to wear headphones or do the less complex worksheet if that option is truly available to and accepted by everyone in the class.

The key is for it to be a genuine option - if there are only two or three sets of headphones available and they are always in use when a particular child needs them, or if a child is criticised for choosing one worksheet over another, the veneer of neuroinclusivity easily peels off.

There's also the issue that bolt-ons can be bolted off. A quiet area can be repurposed, a new teacher can ban fidgets, headphones can be lost. This is why so many parents fight for an EHCP, to ensure that the provision that enables their child to cope can't be taken away on a whim.

25/01/2026

Autistic children are often resistant to change. They prefer predictable environments and routines.

My son has the same breakfast and the same packed lunch every day, and has done for years. He likes a particular brand of pasta sauce, wears the same clothes until they fall apart and doesn't like new places.

He likes to know what something will look like, feel like and taste like, and has to be prepared very carefully for any changes to his routine.

My daughter has PDA. She likes to be in control and is extremely uncomfortable with uncertainty. If something is different from what she was expecting, it causes her to panic. On the surface, this looks like resistance to change.

However, she is much more able to initiate change, because when she is responsible for the change, she is in control.

In fact, if things are the same for too long, they become a demand - you've always eaten this before, so now you're expected to eat it whenever it's offered. The fact that it's expected can then make it impossible to do, because the child no longer feels in control of the situation - the expectation is a threat to their autonomy.

This is why parenting a child with PDA is so challenging - when you find something that works, it only works until you start expecting it to work, and then it stops working and you have to find a new approach.

My daughter will develop an obsession with a particular food and eat nothing but that food for several days or weeks. Unlike my son, who has eaten pretty much the same breakfast every day since he was weaned, my daughter then goes off that food - usually just after we've bought it in bulk - and refuses to eat it again for months, if not forever.

This is no accident. Seeing a fridge full of one food sends the message that you're expected to eat it all. This creates a massive demand, reducing the PDA child's perceived autonomy to control what they eat and raising anxiety to the point where the child can no longer eat that food.

The most challenging times are the in between times, when one thing has stopped working and the child is unsettled by the uncertainty about what will take its place.

24/01/2026

Nothing to see here - just my son enjoying his favourite television programme.

There’s a reason we’re not thinking of getting a nice new sofa any time soon!

23/01/2026

Imagine being so busy that an important and obviously quite urgent email pops into your inbox before you arrive at work in the morning and still hasn’t been opened by the end of the day… or even the week.

Imagine a system where people regularly take time off without setting an out of office automated response.

Imagine leaving a job without informing any of the people who are waiting for a response from you that you’re going, or giving them alternative contact details.

Imagine a system in which there’s a high turnover of staff, and when someone leaves there is no out of office response set and no automatic forwarding of their emails or monitoring of their (still functioning) inbox.

Imagine…

And then imagine that your child’s future depends on the emails you’re sending into the ether, never knowing that none of them has ever been read.

This is your reminder to request delivery receipts and read receipts for every email you send to the local authority or any other public body dealing with your child.

That way, nobody can claim they didn’t receive your email, and if nobody opens it, you can chase it up.

23/01/2026

My son’s lost one of his safe foods.

Walkers have changed the packaging for their ready salted crisps, and now he won’t touch them.

I’m off on a hunt for some of the old packets this weekend.

22/01/2026

As the parent of a child with SEND, there are several things that keep me awake at night - my children being two of them!

But one thing in particular that should not be the concern that it is has banjaxed me again and again - and that’s the fact that whatever reasonable adjustments are in place to make school life even remotely possible for my children, they seem to be almost entirely dependent on nothing changing in the school.

Every time we move up to a new year, a member of staff leaves, or the timetable changes, we seem to be back to square one.

Some changes are huge, like the school joining a multi-academy trust, which promises to change nothing while introducing policies which change everything.

Other changes seem almost irrelevant, like the introduction of a new computer system, which turns out to result in the removal of certain reasonable adjustments because the computer says no.

A member of staff who understands your child’s condition and quietly adopts practices which enable your child to access school leaves. In their place, you have to deal with someone who displays no understanding of your child’s condition and treats it as a behavioural issue.

A single and seemingly minor change can become the catalyst for a chain of events over which you have no control and which leads to your child becoming increasingly distressed.

Something which has been so much part of what the school offered as standard that you never even thought to protect your child’s access to it by asking to have it included in their EHCP is suddenly withdrawn, with no notice, explanation or discussion.

Your trust in the setting which is supposed to act in loco parentis is shattered again and again, but you still have to work with them to forge new relationships where you can.

It’s heartbreaking to see your child struggle because of changes that are completely outside your control.

It’s terrifying to realise how much the equilibrium of your family depends on trust and goodwill.

And it’s why one of the things to look at when you choose a school for your child is staff turnover, because so many agreements will only last as long as the person you made them with.

SEND HUGS

31/01/2026

30/01/2026

30/01/2026

29/01/2026

28/01/2026

27/01/2026

26/01/2026

25/01/2026

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22/01/2026

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