It is the same in the world of special needs. You find yourself scrolling through posts on any disability forum or social media page and you could easily feel like you are in another world.

Seasoned special needs parents use acronyms as everyday vocabulary, forgetting that many may not understand what we are talking about.

So here is a list of the most commonly used acronyms in the UK among special needs families that I have found:

(Feel free to share or use or even print out to refer to when you need.)

 

AAC – lternative or augmentative communication (a means of communication without using speech)

ABA – applied behavioural analysis (a strategy used by some therapists to support children with autism)

ADHD – attention deficit hyperactivity disorder

ADOS – autism diagnostic observation schedule (a means of assessment for autism)

ASD (or ASC) – autism spectrum disorder or autism spectrum condition

BSL – British sign language

CA – carer’s allowance

CAMHS – child and adolescent mental health service

CBT – cognitive behaviour therapy (a type of therapy used to help reduce anxiety or depression)

CSP – co-ordinated support plan (a Scottish only legal support plan for children in education)

DLA – disability living allowance (a non means tested benefit for children who require extra care)

EBD – emotional and behavioural difficulties

ED. P – educational psychologist

EHCP – education and health care plan (English education plan for children with additional needs)

EP – enhanced provision (smaller classes for children with higher support needs)

GDD – global developmental delay (developmental delay in three or more areas)

GFCF – gluten free casein free (a diet that means no gluten or casein)

HFA – high functioning autism

HI – hearing impaired

IEP – individual educational plan (school support plan for children with additional needs)

LD – learning disability

MA – multi-agency (professionals from different fields)

MDT – multidisciplinary team (group of professionals from different fields)

NAS – national autistic society

NT – neurologically typical (not having autism)

OT – occupational therapist

PDD – pervasive developmental disorder

PDA – pathological demand avoidance (a particular type of autism)

PECS – picture exchange communication system (a means of communication using visuals)

PIP – personal independence payment (adult equivalent to DLA)

SDS – self-directed support (a means of financial support to pay for respite and support)

SEN – special educational needs

SENCO – special educational needs co-ordinator (England only)

SEND – special educational needs and disabilities

SLT (or SALT) – speech and language therapist

SM – selective mutism

SPD – sensory processing difficulties

SS – social services

SW – social worker

TAC – team around the child

TAF – team around the family

VI – vision impaired

 

If you come across others don’t be stuck: just ask. At one point I had no idea what any of these meant and some I secretly googled in the hope of understanding more.

It’s hard enough finding out your child has extra needs without also struggling to understand abbreviations.

With love from one special needs parent to others!

The children had barely had time to get into their classrooms so I assumed for once it wasn’t either of the schools. ‘It’ll be a call centre again,’ I told myself as I walked across the room for the handset.

For once I actually wish it HAD been a call centre.

‘Can I speak to Mrs Gwynne please?’

‘Speaking.’

…

I put the receiver back down and stared out of the window. 

I love being alone. I love the tranquillity, the freedom and the independence it gives me as a mother of two children with complex needs.

Yet, right at that moment, I would have given anything to have someone in the room with me, anyone.

The call had been from the secretary of my son’s specialist saying they had found, ‘something’, on my son’s MRI and could I come in tomorrow to get the results.

I had asked about bringing my son in and was told, ‘Not on this occasion but you may wish to bring someone with you.’

That is hospital talk for, ‘We need to have your full attention and you will probably need someone with you for support because we are going to tell you bad news.’

Somehow my hot cuppa seemed to offer anything but enjoyment or comfort now.

My husband out at the supermarket, my children at school; my mind left to wander.

My son had neurofibromatosis type 1. His body grows tumours.

The MRI was scanning his brain.

It didn’t take a genius to put the pieces of the medical jigsaw together and realise what was going on.

They don’t call you to a hospital urgently for no reason.

The next day we were told Isaac had an optic glioma in his left eye, a tumour on his optic nerve, or in layman’s terms: a brain tumour.

His right eye had a separate eye condition called microphthalmia which means he has no vision in that eye at all.  

Having waited over 24 hours after the phone call to find this out we then had an agonising 17 day wait to find out if he would be starting chemotherapy or not.

Thankfully, at present his vision seems stable, although poor, and it will be monitored very closely.

He will now see even more specialists than before. We have a lifetime of hospital appointments ahead of us. 

Sometimes one phone call can change everything. 

In a few weeks my children will return back to school after summer and I will come home one day again and make myself a cuppa.

The chances are high one morning the phone will go again.

And once again I will pray it is a call centre. 

I just hope it won’t ever be the hospital again asking us to come in urgently. 

That is the sort of call every parent dreads. 

Whilst composing a post about, ‘Scruffy Hospitality’, my mind wandered into a consideration of my relationship with my mother and the differences in attitude between us.

One of the most cutting things she has ever said to me was: ‘How will you cope with a disabled child? You can’t cope with the two you’ve got’.

I was shocked rigid by the blatant injustice of it, and didn’t answer back.

Or perhaps I was silenced by the little voice, nagging away in the back of my head, saying: ‘She’s got a point, you know.’ I’m not one of life’s copers, not like she is.

My mother worked full-time and kept the house immaculately, aseptically, clean, tidy, and carefully arranged.

She was ruthlessly organised and efficient, never putting off till tomorrow what she could do today.

She cleaned the windows religiously on a weekly basis with hot soapy water, rinsed them with vinegar and buffed them up with scrunched newspaper.

She used three separate cloths for dusting, one to remove the dust, one to apply polish and the third to rub it to a shine.

Visitors were swept straight up the garden path and into the pages of Woman and Home.  

In my house there is a pop-up bin in the kitchen where I put any clean laundry that I have not yet got round to ironing; things can always be pulled out and rubbed over if they are needed.

I clean my windows with a green spray from the supermarket and a bit of kitchen roll; I use the hoover to remove dust from all surfaces, high or low, soft or hard.

All this despite the fact that I have not gone out to paid employment since my eldest child was born. I am a shameless slob.

Perhaps she forgets that I have three children; that I have raised a son who is on the Autism Spectrum with no outside intervention or help.

There simply wasn’t any available locally at the time, because our son does not have a learning disability.

She probably doesn’t realise just how exhausting it is to start each day with a battle of wills with my youngest, who has Down’s Syndrome; nor how important it is to put that exhaustion, and the causes of it aside, so that you can hold your patience and remember to have compassion for his difficulties.

She probably doesn’t know that I haven’t found any of this particularly hard.

I think she also overlooks the fact that she had just one, quiet, solemn child, live-in childcare courtesy of my (now late, then retired) grandmother … and a prescription for Valium throughout most of my childhood.

I used to think I must have been a really horrible child to drive my mother to the point where she needed tranquillizers.

But now, pondering her attitude to housekeeping and entertaining, I am beginning to wonder if I was the cause of it.

Was her anxiety actually driven by her desperate need to, ‘keep up with the Jones’s or, at least, her perception of the Jones’s, and what they had, thought and expected of others?

Knowing a little about her background now, I understand where this painful internal pressure to conform, in order to be approved of, came from.

She became what she needed to be.

My circumstances mean that I, and my family, can never conform.

I have had to learn to live with this.

In order to do so I have had to let go of any need for the approval of others, and therefore, any need to conform to their expectations.

My eldest son is now an independent young man, living a perfectly ‘normal’ life at university.

Despite being sandwiched in between two brothers with additional needs, my daughter has escaped the mould of the typical young carer; I give her a decent share of my attention, as well as opportunities for personal enrichment, and time to spend with her friends.

Freddie is, by and large, a happy, confident child, who perceives that he is loved.

Anyone nosey enough to look in through my quickly-wiped windows can see this.

They can’t see the undone ironing.

What is coping but doing what you need to do to make it through each day in one piece.

The joy didn’t last!

Now, Cameron is quirky and when he gets excited can flap around and can be quite dramatic and loud.

This clearly became too much for the boys very quickly.

A few occasions after he had gone out to play he had returned inside after five or 10 minutes saying they had gone in to have their tea.

Then as we were returning home one evening I saw the boys notice the car as they were coming out of one of the gardens, doing a complete 360 and going hiding in the garden.

Cameron had not seen this but I realised in that moment that they were hiding from him.

Cameron then spotted them and asked straight away can he go and play, I told him that the weather was not great and it was tea time.

This then continued for a few occasions where I was keeping him inside when he could hear them playing outside.

A week or so passed and my family had said, let him try. Don’t force him inside, kids will be kids. 

So I let him go outside again, he took his ball and was playing on the green. 

As I was watching I noticed Cameron go into the road and I shouted that should I see him do this again then he would be coming in. 

I stood out of view and watched one of the boys pick Cameron’s ball up and throw it into the road.

As he went to retrieve it I went out and asked the little boy why he would do that and that it’s dangerous (albeit a quiet avenue). 

He had no reply. 

My son was heartbroken that I had made him come inside, I told him that the boys did not want to play with him and were trying to get him into trouble and that friends should not do that.

The boys don’t play outside our house that much now or even within ear shot.

I have seen them look towards the house and run past to go and play at the bottom of the street where Cameron won’t hear them.

What can I do?

I don’t want to have to explain that he is different; why should I?

I don’t want the label to isolate him. He has some wonderful friends at school and I try to go above and beyond to grow those friendships – but what kid can’t play outside because he won’t be included?!

So again I’ve left it and avoided it for about a month.

This week we have had some scorching weather and I heard the kids out. Cameron asked to go out and play and I told him he could go and have 10 minutes.

Sure enough this was enough time for them to go and make their getaway and go and play in a garden directly opposite our house without him.

He asked could he get his bike out to ride around the green. I beckoned him over and said:

“Cameron your friends have left you again, look they have gone over in that garden to play on their own. Would you leave any of your friends out and not play with them” – he shook his head.

This is what I hate about Autism; that my baby is different and even though he conforms and is successful; and even though people are becoming more accepting of disabilities – we can’t control the situations all the time.

I just want to protect him… but I have to let him experience growing pains.

We all need time to reflect, to not feel on edge, to immerse ourselves in something other than the world of additional needs.

Tube feeds, speech therapy, physiotherapy, reading medical journals, indulging in forums, collecting prescriptions etc. can take over, and they do.

These days I seem to plod on for a long time and then all at once become quite ill and overwhelmed.

I am sort of in that phase now.

I don’t look after myself how I used to and much as I try some days you just cannot be bothered, there are more important pressing issues to address.

(Like WHY have I had to phone gastro four times? And I still have no follow up appointment. Or WHY did our latest medicine trial not come up for review as agreed? WHEN will our first IEP be and our next TAC… I could continue this forever but to preserve my mental health and possibly yours I will leave this here.)

My daughter is my entire world, I don’t think a minute passes where she isn’t on my mind.

But wow, she is a demanding little madam!

The nature of her cerebral palsy is such that she is entirely dependent on others to get around or to play.

She has a short attention span and wants constant activities and is very quick to tell you when you aren’t doing the right thing!

I am very blessed that she can communicate in this way by laughing, babbling or shouting.

She does not speak with words, but her body language, expressions and tone of voice is incredible and she is good at getting what she wants.

I recently became quite run down to the point where I entirely lost my voice.

It has been hard to commit to about 10 hours of singing songs and being silly every day.

Thankfully our overnights at respite have started.

I hesitated for months after being awarded them because of the immense guilt I felt at the thought of her not being here at home with us.

But we took the plunge and have them twice a month now.

It is still hard to adjust to but even my body is showing signs it needs it with its eye bags, sore back, bad throat and general achiness.

For my birthday we went away for two nights and this was massive for us.

I missed her intensely and I think we probably spent a lot of that time talking about her and wondering what she was doing.

The funny thing is she was probably absolutely fine… she has the full attention of all of the amazing staff not to mention a great sensory room and endless amounts of electronic toys.

She has an overnight tonight and she is all I can think about right now.

So far we have taken the dog on a long rainy walk in the countryside and are planning to get a pizza delivery later on tonight.

These are two things we don’t really do when she is here… the wheelchair can be difficult to push up in the hills, not to mention that she doesn’t like wind, rain or quiet!

As for pizza, we do eat that when she is here but it is hard to relax sometimes as she takes a long time to get to bed even with meds.

Then there are the constant tube feed changes and so on.

I can’t wait to pick her up tomorrow and I bet after an hour I’ll want a nap or a break!

So I guess the point of this post is to say that we shouldn’t feel guilty for needing what we need.

I see this also as valuable time to recharge and try to be the ‘me’ that I was before appointments, admin, and therapies took over our lives!

It’s the summer holidays now so I think I will take advantage of the fact I can still lift her and have a lot of intense trips to the park lifting her onto slides and using our GoTo seat in the swings. 

As a student I lurched from week to week never planning forward like how much money I’d need to buy food with or when that deadline for my next essay was due.

Perhaps people these days would call that, ‘living in the moment’.

I know that I am a bit of a scatter-brain and I don’t think my dyslexia helps, but there is some method in my madness, some order in the chaos, even if I’m often the only one who can see it!

That all got turned on its head however when my magical daughter was born.

Actually to be precise it started four years before she was born.

For those of you who have ever had to worry about infertility or sub-fertility, you will know all too well about planning and organisation. Mother Nature truly works to a schedule in that department.

Those of you, like me, who have undergone repeated rounds of IVF will probably have a smirk on their face about now.

The planning and organisation involved is on an epic scale. Forget to inject yourself at exactly the right time and it’s all for nothing.

Even so, those years were child’s play in comparison to raising a baby with a unique genetic condition and an emerging long list of special needs.

Each week it seemed that we had acquired a new label to get used to.

At least I tried really hard to get her in the first place, because lord knows we have worked hard on several occasions to keep her here since.

I have a large, ‘week per view’, Filofax for my daughter that I have had since she was born, full of all her appointments.

Occasionally it has something more fun like a play date pencilled in, always in pencil!

Each year when I replace the pages with new ones (this starts in August as we start to get appointments for the following January!), I look through the year and see how far we have come.

I’ve seen a definite trail-off of many of the consultant’s appointments now.

Not because everything is fine and sorted, but because it isn’t and somehow I feel after a certain age an unspoken agreement that they can’t change things creeps in.

The Golden window of opportunity slowly closes its curtains on optimism.

Their waning appointments have been replaced with more regular school appointments, which at least are nearer and more fun.

This time, instead of resisting the tide of people, I have embraced it.

I joined the school PTFA as soon as my daughter started there and over the last couple of years I have worked with them to fundraise for a much needed new playground.

We have raised £130,000 in a year and I have fallen into a ‘project manager’ role co-ordinating staff, pupils, contractors and charities.

I even stood up at a posh London charity dinner in front of 200 people and talked about the school and what being a special needs parent feels like to me.

Only then when I saw their reaction did I know how far I have come…

An independent, organised parent, shaped by the experiences I once feared.