‘We’ve let you in a thousand times; meetings, phone calls, home visits and I’ve even gone on your courses.

You pop in our lives for an hour and then you pop off.

You bring your checklists and your generic questions and then you are gone again.

This isn’t about my child and meeting her needs, this is about evidence for you to say there aren’t any.

It doesn’t make things better, it makes it worse.

My child has learnt to mask in front of authority and you know that but you still come in and ask your generic questions.

There are lots who profit from our children and there are also those that believe the system works and think our children can fixed to make it work.

We can choose and we can politely decline..

So I politely decline.

I can protect my child, that is okay.

It is not in their best interests.

I’ll do the ones I need to do but, the rest? I mean, if you want to come over and build up trust and hang out, that’s fine.

But that’s going to take time and probably money.. Oh wait. You’re busy?

What if our foundation of learning was one based on strengths of the individual, relationships and allowing each child to develop and progress at a pace that works for them?

Perhaps we wouldn’t see so many not fit, because we would have adaptable and flexible learning environments.

We would allow for individuals to get there, when they get there- when they are ready.

They would be in tune and know themselves, rather than spending years masking and complying and this being seen as an achievement, until they can’t do it anymore.

Success would be children learning that it is okay to be the way they are because they would be made to feel safe with positive relationships and go at their own pace.

Perhaps then we wouldn’t need to train parents and children to fit a system?

Perhaps we could stop with all the bloody fixing.

A child outside of a classroom is not a child a coping.

They are surviving.

At home, in their safe space they have meltdowns.

We want to help, these are our children.

We tell you the truth about how it is at home, so tell us how it really is at school.

We need this information so we can put things in place before it’s too late.

No more ‘positive spins’

No more ‘wait and see’.

Let’s be preemptive, proactive and transparent.

Relationships between parents and teachers.

Relationships for our children to feel safe.

We are all the professionals and we can all learn from each other.

Let’s make plans.

Let’s not wait until it hits rock bottom.

“Why don’t you like school?”

“Can you use a knife and fork?”

(true questions asked by an OT recently)

A checklist of deficits is not okay, our children are more than this, they are not a list ‘can nots’.

Anyone who works with our children must understand that trust has to be earned and our children will mask because in these situations.

Our children have learnt to do this.

Building a fun relationship will be the best way to gather information and see what works best for our children.

But this will take time and creative thinking and while services are a list of printed out questions of tick boxes in a one hour visit, they will not get a comprehensive picture of an individual.

But then are these services really for our children or actually to feed back our children are ‘fine’ and don’t meet thresholds?

(So I apologise for allowing them into our home, for that appointment we had waited months for and actually thought we might get some knowledge out of and I keep remember to give these ‘professionals’ a wide berth)

I didn’t know you could apply for an EHCP yourself so we waited years for the school to agree.

I thought the case worker worked for us to get the ‘best deal’.

Maybe the professionals thought that a positive spin on everything was encouraging to families who had hit rock bottom with it all.

But what help was that to our child?

What a chump, a gullible fool.

Slightly falling apart, but I’m okay..

I’d like to say I did meditation, posted a positive meme, went on a healthy stomp through the countryside or took a relaxing bath but when I’m stressed these are my actual go-tos.

We all need these, our own cheap therapies because we carry a level of stress a lot of the time.

We always have stuff to sort out and it is more than laundry, there are always so many variables, so many unknowns.

We worry.

I guess they never go away really, we just find ways to manage them..

For many parents we go through the process of diagnosis because we think it will open gateways of support for children.

However, years in the system we learn that there are many more local authorities spending their time twisting and dodging their duties than actually providing adequate support.

Often relying on us as parents not knowing the laws or pathways and with our belief that they are there to help us.

Unfortunately like many, I learnt the hard way.

I guess they think that if they offer something to one family we’ll all be asking for everything.. but most of the time we are too upset, exhausted or bored.

And anyway if this was some amazing free meal ticket that all parents are trying wangle then it would the worst meal ever.(like a Rustlers burger or a tinned meat pie)

Courses were designed to share knowledge and empower parents and families?

We changed from a model of diagnosis with an emphasis on the child to change?

We ended the narrative of parental guilt?

Diagnosis should be there to inform systems of how to make adaptations. To educate the educators and professionals, rather than to use as reason to blame or excuse.

If we used our knowledge to work collaboratively to empower families and work together to inform the professionals we could create flexible and adaptable learning environments that work to what our children need.

Hey, we might not even need EHCPs, because all children would be included within an education system that works for all..?

Our children are as complex and nuanced as any human being but post diagnosis I felt the stereotypes close in.(we are products of our own environments and cultures)

But we all get sent on the same parenting courses with the other parents whose children have a diagnosis and our children get to go to Lego Club.

I guess when the end goal is to fit one system, a formal education then it is simpler to pigeon hole and use those ‘supports’ but what happens when they don’t work?

I think I would have preferred a course on ‘When the shit hits the fan’ because I think until we create a flexible and individualised learning environments for our children then a lot of us will be needing help to navigate the next bit- the “now what?”

Bad things happen.

We all carry our wounds.

We all have ‘that terrible thing’ that happened to our children.

So we write emails, we make phone calls. I even spoke to our local MP.

How can people be so unkind?

Why can’t they just say sorry?

But what happens?

They argue the toss.They read the formal script.They close ranks.

Meanwhile I got sicker.. My child was ill and I was ill.

I wasn’t going to get them to change, they wouldn’t say sorry.

Oh yes, they will still argue and make everything a massive pain.But they won’t take my nice times.

They get paid to send those emails, I don’t.

So I get what I need.

I pick my battles.