Lost in Transition – Part 18

Love Actually

Love Actually

Love is funny stuff.

Max, my fabulous 16-year-old son who has autism and epilepsy has been in love with his gorgeous Italian girlfriend for 2 years now. They met at school in the Cabin, an SEN supported section of their mainstream school in Cambridge.

Last year however, I had a horrid phone call from the school when they found out that Max and his girlfriend were having sleepovers at each other’s houses.

”…serious safeguarding issues Ms. Marek...”.

It sparked an equally serious response from me and the girl’s mum, I probably over reacted but their relationship is amazingly innocent. You see, they are both a lot younger than their years and haven’t even kissed yet. It is a relationship based on hand holding, declarations of undying love and lots of cute presents. I explained this to the school forcibly enough to get an unreserved apology. BUT they probably will kiss one day, they might even do more! Then what? How can a parent protect and support a relationship between two SEN young people? Is it even any of our business? There are after all, big conversations to have…big emotions, birth control…augh! Not yet though. I shall try to pop this terrifying thought in Pandora’s box just to the left of ‘hope’.

In September, the young love birds had to say goodbye to each other as Max left to go to college in Shropshire to do catering. An amazing college but a good 3 hours away from his girlfriend in Cambridge. Max has been so worried she’ll find someone else…. especially if that someone else turned out to be Max’s best friend who is still as school with her and a really nice chap to boot!

So here is my problem, we all hope our children grow up and find love. I don’t know about you but the thing that keeps me awake at night is the idea that my beautiful boy will become isolated. The idea of Max being alone, not hanging out with friends, not blushing when he asks out a girl, not holding sweaty hands on a date or having his first kiss.

I’m terrified of Max breaking up with his Italian girlfriend. The idea of him feeling heartbreak for the first time makes me feel physically sick. He’s been through enough challenges to be fair. All the medical stuff, struggling at school and making friends. I want to protect him from any more pain. Ridiculous I know. Love and heartbreak are normal and important parts of growing up and once again, this pain isn’t something I can shield Max from and that kills me.

Ironically, for my other son I want him to date lots, to have the great adventure that is love and heartbreak over and over again. I’m struggling with the inequality I’m feeling between the way I treat my two boys. After all, if my other son were to fall in love with a girl he meets at school and never dates anyone else at all I would be seriously worried.

Should I be worried about Max? Am I doing wrong to see them differently?

Last week I saw something beautiful. Max met up with his girlfriend for the first time in ages when he was back for half term. He brought her a dozen red roses. She melted, it was glorious…but her mum and I got thoroughly tearful. The young love birds held hands and coyly walked to the cinema with us mums following at a respectable distance. For now, I’ll try not to worry and remember the way they looked at each other walking in front of us. So delicate and tender. A true gentle innocence. It was enough to take your breath away.

Love Actually.

Top 10 gifts for kids with autism

Top 10 Toys to help kids with autism learn and play

From the four corners of the internet, Sky Badger has hunted out these  fabulous gems just for you. So if you have a child with autism and you're looking to find gadgets and cool stuff to help them at school or play, then you've come to the right place!

autism toys

1. STRETCHY APPLE & WORMS

STRETCHY APPLE & WORMS

10/10

A must have. What a fun fiddle thing! Excellent to pop in your bag when you need to relieve your child's stress or anxiety levels.

£5.45

2. Picture Exchange Communication Keyring

Early Years Activities Picture Exchange Communication Keyring

8/10

A really useful way to help communication. 10 tiles 6cm x 6cm with these cute pictures and all on a handy little keyring to attach to your child's school backpack. Other cards available cover subjects like activities and out and about actions.

£3.50

3. Boing Pro

8/10

Rubbery light-filled ball, every time it's squeezed it changes colour. A very groovy fiddle thing indeed!

 

£12.99

4. Sensory LED Light up Drawing/writing Board

Sensory LED Light up Drawing/writing Board

9/10

This is an exceptional drawing board. A serious bit of sensory kit. A little on the big present side of things but a great investment.

Colour changing/flashing and static light settings all at the press of the remote control. Accessories included: Pack of 8 pens, Cleaning Cloth, Hanging chain, Remote control and Power cable.

£34.99

5. Fidget Pencils

Fidget Pencil

9/10

Some ideas you wish you'd thought of first...this is one of them! These colourful pencils come with four different tops, such as a nut and bolt, and are great at occupying busy fingers and allow our kids to focus their minds.

£9.50

6. 1000 Glow In The Dark Stars

1000 Glow In The Dark Stars

9/10

Magical.1000 glow in the dark star and cosmic shape stickers. These will cover any room with indiscreet glowing stars that when exposed to light for a few minutes will glow for up to an hour. These stars make falling asleep a glorious time to fill up those perfect bed time memories for you and your little one.

£4.99

7. Large Puffer "Furb" Ball

Large Puffer "Furb" Ball

9/10

This cool balloon thingy has lovely bright colours and a soft rubber feel, making it an excellent toy for kids to fiddle with and it stimulates their senses.

£7.95

8. Worry Eater Flamm

Worry Eater Flamm

8/10

This exceedingly groovy plush characters are more than toys. They are ideal for helping our little ones articulate specific anxieties and ask for help to overcome them. Children can write down or draw a specific fear or worry on a piece of paper, place it in one of these furry little characters and zip up the mouth. Lots of different 'monsters' are available in loads of different sizes...from 5' to keyring size!

£19.98

9. Glow Disco Duck

Glow Disco Duck

8/10

This very well might take the edge ff stressful bath times. No ordinary bath toy, float Disco Duck in your bath water and watch him burst into life! This quirky rubber ducks looks are deceiving as once he comes into contact with water, Disco Duck glows from within with a fabulous colour changing light show. Colours phase gently into one another before moving into a funky flash disco mode before returning back to its more relaxing mode. Also he glows in the dark so don't get a shock!

£5.95

10. Jointed Monster

Jointed Monster

9/10

And finally..These wooden monsters have movable heads and feet and are chunky to fidget with...what fun!

Size: 55mm x 30mm x 120mm high

£10.25

Browse loads of other sensory toy suppliers here...

Use our directory to find lots of companies who supply sensory toys and kit.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

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Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

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Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

LOST IN TRANSITION – PART 16

Real Genius

GCSE results

Results day. I know I should be pleased for them. I should say “well done” to all the children of my friends that I’ve watched grow up with Max. I’m trying, promise. But the wild gushing of how incredibly bright they are, how hard they worked, how much they deserve their 15 A*s. Well, do you know what? I’m not proud of them, I’m green eyed with furious envy.

You see, my Max sat his exams this year too. Actually, that’s exam in the singular but that’s another story. He studied, he revised. He threw himself into the subject with everything he’s got and he failed spectacularly. He was always going to fail, I knew that too but there is something deep down that feels unfair about how hard he tried. The fact is that in order for people to get A’s there must be others that get C’s or fails. I just didn’t want it to be him, he could do with a win. He’s only 16 and his life has been so damn hard. I wonder how many other mums have spent time today with fixed smiles on their devastated faces? How many of their friends simply forgot that their children also sat a couple of exams? How many chose not to ask?

It’s all a bit ridiculous I know. But when our children were little and we heard the news for the first time that all was not well, we began to live a day at a time. We lurch to the next seizure, the next time they walk into a road without looking, the next MRI the next set of ECG results…fingers crossed every night as you fall asleep. Odd, but at the time, you don’t think about your little one never learning to read properly, never going out on the town with their mates (if they have any) or getting to GCSE results day knowing you’ll pretend the day isn’t happening.

Of course, it doesn’t end there. This is just the beginning of a much longer journey. No conversations about which university courses they’re interested in or what they’re going to do during their gap year while travelling around India. Instead its talk of if your local authority will continue funding their special needs 6th form that you nearly killed yourself fighting to get him into and then will he be able to get a job? How are his medical needs going to be supported? Will he ever leave home? Will he be lonely? Scared? Will bad people take advantage of him? Can I keep him safe?...I’m just so incredibly scared.

“If at first you don’t succeed, lower your life expectations.”

That used to be a lot funnier.

BUT....self-pity is terribly unattractive. Instead, I shall probably wallow for a little longer then pull myself together. I have to focus on this being his journey and it mustn’t be measured against other people’s journeys. Like all of our original children, they will hopefully grow up to be original adults. It has to be our job to take these ridiculous exam feelings and put them in a box, burry the box at the bottom of a lake then napalm the lake.

Big deal that other kids got 15 A*s today. Are they seriously going to grow up happier than Max? Will their lemon meringue pies make eyes roll in glee like his do?

So, stuff you world and the way you decide to measure success in my beautiful boy. That world can go spin. I’ll have another piece of pie thank you very much.

If you’re in the same place, you might want to check out these useful links…

IPSEA - https://www.ipsea.org.uk

Preparing for Adulthood- http://www.preparingforadulthood.org.uk

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

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Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Top 10 Chew Toys for Kids

10 of the coolest and chewiest chew toys

For lots of kids especially those with autism and other disabilities, chewing can be incredibly calming and self soothing. So if you have a child with autism, or special needs who loves to chew then you've come to the right place!

silly sentences

1. Chewigem Starter Kit – Glow in the Dark

1. Chewigem Starter Kit – Glow – Glow in the Dark (child sized bangle)

9/10

An excellent starter kit by Chewigem. You can also get it in rainbow colours but we love the glow in the dark set. This one includes a button pendant, a child tread bangle, a hexichew  and some top tips in their ‘Chewing diary’ booklet. This is a must have. Separately this box's contents would cost about £40 so you can't beat it for value for money either!

£24.99

2. Brick Stick 

Brick Stick 

8/10

An excellently stylish chew toy. The green one is a fairly tough chew and the purple version is a softer chew.

£21.25

3. A 'Super' Chew

autism chewing

8/10

For the chew focussed superfan. This red chew also comes with a breakaway clasp to the neck cord for safety.

 

£9.97

4. Berries

Berries

9/10

Very chunky chewy beads 28mm in diameter in some funky colours. Each bead is covered in nubs for an extra yummy sensation. Ideal for fidgets and sensory seekers. They feel nice and heavy and will handle the most serious of chewers.

£15.95

5. Chewigem Tread Bangles 

1. Chewigem Tread Bangles 

7/10

Chewigem Tread Bangles come in a wide range of fashionable styles and textures. They're suitable for children aged 3-14. Suitable for moderate to aggressive chewers. With a different bangle to match every outfit...what are you waiting for?

£8.99

6. eBoot 5 Pieces Silicone Chewable Pencil Toppers

eBoot 5 Pieces Silicone Chewable Pencil Toppers

9/10

A handy way to take your child's chew toys into school by smuggling them in on the top of pencils. These chew toys come in a range of colours and can be used with or without pencils (obviously!) They come as a set of 5 and may help your child's sensory processing, increase their focus, and improve their communication at home and at school.

£7.99

7. Chewbuddy Autism Chew Toy Blue

Chewbuddy Autism Chew Toy Blue

9/10

The excellently cute chewbuddy is a proper must have. The round "head" gives a bi-lateral biting surface with ridges for additional interest, the "legs" have raised dimples for sensory feedback. Even better, the entire toy is sketchy and bendy so makes a great all round sensory toy.

£7.49

8. Skull

skull

8/10

A fabulously groovy design to satisfy the coolest and discerning of chewers. One side has bumps for extra sensation. Suitable for mild to moderate chewers.

 

£13.45

9. P's & Q's Chewy Tube

P's & Q's Chewy Tube

9/10

A good all round chew to with a wide range of pointy bits to reach the back of the moth and loops to really get your teeth into. You can now chew you P's and Q's as well as minding them!

£14.35

10. ARK's Z-Vibe Chewy Animal Wand

ARK's Z-Vibe Chewy Animal Wand

10/10

This is our favourite chew toy.  It has a smooth vibrating wand that provides gentle sensory feedback to the lips, gums, tongue, jaw and inside the cheek area.

The interchangeable chewy animal tops are very cute and can be used to practice biting, chewing and jaw grading and stability. Each top has a variety of shapes and textures for oral stimulation and sensory input. Available with either soft or firm tops. A fabulous chewy based addition to your child's chew box.

£55.14

Browse loads of other chewy and sensory toy suppliers here...

Use our directory to find lots of companies who supply sensory toys and kit.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

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Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Top 10 Sensory Toys that Your Kids Will Love!

Top 10 Sensory Toys

From the four corners of the internet, Sky Badger has hunted out these  fabulous gems just for you. So if you have a child with autism, ADHD or if they just love shiny, squishy or fiddly things, then you've come to the right place!

Personal Budgets

1. Beans Squishy Toy Pendant

Beans Squishy Toys Pendants

10/10

A must have. How many times have you ended up trying to keep your kids entertained while doing the waiting room shuffle? Well, with this attached to your keys, your troubles are at a (temporary) end. This incredibly cute toy is designed to reduce stress, and they smell and look great...and at under a pound you can't beat it for value for money!

£0.99

2. Mirror Pebbles

Mirror Pebbles

8/10

These are just incredible! Your children will be totally absorbed and mesmerised by this reflective collection of differently sized metallic discs. These smooth, shiny, pebbles will fascinate when laid in paths or stacked. Four different sizes D15cm x 4.5cm and they come as a set of 20.

£65.95

3. Sensory Pillow Led Light

Sensory Pillow Led Light

8/10

This colour changing LED pillow is the perfect bedtime friend for your little ones. A lovely soft pillow with just about the cutest expression too. I can't imagine a nicer way to fall asleep. Fab to take on holiday too for kids like mine that struggle with change...packing a warm smile from home helps that first night in a strange bed while away.

 

£10.46

4. Fidget Toy Cube

Fidget Toy Cube

9/10

Love them or hate them, I bet you still can't stop fiddling with them. This camouflage cube is a nice touch but in essence the fidget cube is one of the very best fiddle toys on the market. With 9 types of movements and textures this should be a permanent feature in every glove compartment and handbag.

 

£6.99

5. Strawberry, Peach & Mango Kawaii Squishies

61CK4b5k9yL

7/10

Welcome to the cool kids! These Kawaii swishy fruit are defiantly on the short list for next faddy thing your kids will demand. They have a great slow release texture that is disturbingly pleasing and they smell fab too....also great for a good vent.

Other designs include ice creams, pandas, tofu and a loaf of bread. Japanese Kawaii is cool indeed.

£8.99

6. LED Light Fidget Spinner

LED Light Fidget Hand Spinner

9/10

Well, we couldn't talk about sensory toys without an honourable nod to mother of all fidget toys the Fidget Spinner. With sales in the 10's of millions so far, this is a must have. Although you probably have a few already. This one has the added bonus of lighting up. Hours of mesmerising fun to be had.

£7.99

7. Fluffy Floam Slime

Fluffy Floam Slime

9/10

A great sensory play thing and I found it a woefully addictive fiddle thing as a grown up too. It comes it tonnes of colours and will give you hours of fun. The only down side with products like these is that little fingers like to hide all sorts of stuff in it....my two find disapearing lego men most interesting.

£2.45

8. OPTI Aura Sensory Projector

s-l1600-2

8/10

This exceedingly groovy light projector comes from the company that started out doing light shows for Pink Floyd and The Who. There are obviously loads of other projectors on the market that are a lot cheeper but none are as groovy.

£169.00

9. Sensory Floor Tiles

sensory-floor-tile-7

8/10

Available in green and yellow, red and blue, orange and red or purple and pink, these liquid floor tiles make a seriously funky room for your kids. The coloured liquid in each tile moves about when you press it making  new patterns. Ideal for use in sensory rooms or just for fun.

They're sturdy enough to stand up on too just incase you were worried.

£29.95

10. Pheebsters Sensory Toy fidget Kit

Pheebsters Sensory Toy fidget Kit

9/10

And finally...the bag to sling in the back of the car. A good allrounder with lots to keep happy fingers busy. This kit comes with a flashing spike ball, giggle stick, large bendy figure, slinky spring, twist & lock blcks, bendy monkey and flashing puffer toy. They're all kept neatly in a  drawstring bag. Excellent value too!

£10.99

Browse loads of other sensory toy suppliers here...

Use our directory to find lots of companies who supply sensory toys and kit.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Direct payments

direct payments

If you or someone you care for get help from social services, then you can apply for direct payments. These extra payments let you choose and buy the services you need yourself, instead of getting them from your council.

So, if you use a trained babysitter or 'respite carer' to babysit or do days out with your SEN or disabled child then you might be able to get a special budget to pay for it. This budget is called a direct payment.

The Assessment

You can only get direct payments if you’ve been assessed by your social services department. The assessments are usually done at home. A disability social worker will go through your day to day activities and put together a care plan detailing what you need.

Sometimes, you can find the assessment criteria for your local social services department online. It might be a good idea to 'Google it' and have a look through the document in advance to see if you might be eligible.

During the assessment, take notes of what is being said as well as the assessors contact details and name. You could always send your notes via email after the meeting and thank them for their time. That way, everybody feels like they're working together as a team.

Who are Direct Payments for?

You might be able to get Direct payments if you are a...

  • disabled person aged 16 or over (with short or long-term needs)
  • a disabled parent for children’s services
  • carers aged 16 or over including people with parental responsibility for a disabled child.
  • elderly people who need community care services

How do I Apply for Direct Payments?

To receive direct payments, you first need to contact your local council or trust to ask them to assess your care needs. How much you get depends on your financial circumstances, and you might need to top it up with money of your own. APPLY HERE for Direct Payments.

How do direct payments work?

Direct payments go straight into your bank, post office, building society or other savings account. The council have to agree in advance what you spend your personal budget on. This can be changes as your circumstances and needs change.

You might to be able to use direct payments for...

  • short breaks
  • help to go to a youth club or other activity
  • personal care

Remember that this is all about a partnership between you and the professionals involved to make the right decisions for you as a family.

 

Direct Payments are not automatic!

Call your social services department or disability social worker to talk through you options.

Sky Badger knows that finding help is tricky, so please look through Sky Badger's website to find even more support for your whole family.

The Good News...

Direct Payments can bring you more independence and choice in how you manage care.

  • you will take control of your own care and support services.
  • you will have more choice in selecting the services and support tailored to your needs.
  • If you're confident with money and paperwork this is definitely for you, if not, you can still get support.
  • If you're great at keeping receipts and invoices and love getting  reports and paperwork to your direct payment team on time.

The Not So Good News...

This might not be for you is...

  • you don't like the idea of being an employer – that's what direct payments require you to be.
  • you’re not goos at keeping records and receipts.
  • if you or the person you're caring for you spends frequent or long periods of time in hospital.
  • if you’re happy letting your local authority provide you with care services you need.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Personal Independence Payment

What is a P.I.P.?

The Personal Independence Payment (PIP) is a benefit that helps you with the extra costs of having a disability or having a long-term health conditions. It is for people aged 16 to 64. The PIP is not a means tested benefit.

You'll find a great step-by-step guide to filling in the form on this page. Scroll down to the end of the page for lots more information about how to apply, how to appeal a decision and find lots of other organisations that can help you with your PIP application process.

Children under 16

You can’t make a claim for PIP for children under 16. For existing DLA for child claims the DWP will contact you  when your child is 15 years and 7 months old.

PIP Allowance

If you’re aged 16 to 64 you could get between £23.60 and £151.40 a week by claiming Personal Independence Payment (PIP). The amount you get depends on how your condition affects you, not the condition itself.

personal independence payment phone number

Telephone: 0800 917 2222
Textphone: 0800 917 7777
Calling from abroad: +44 191 218 7766
Monday to Friday, 8am to 6pm

How is it Scored?

How does the PIP get scored and how many points do you need?

PIP is made up of 2 parts, the daily living component and the mobility component. Each component can be paid at one of 2 rates, either the standard rate or the enhanced rate. You need at least 8 points to get the standard rate or 12 points to get the enhanced rate of PIP. You will qualify for one of these if  you need is great enough. The 'points' in each section range from 0-12 depending on the severity of need.

Component Weekly rate
Daily living - standard rate £59.70
Daily living - enhanced rate £89.15
Mobility - standard rate £23.60
Mobility - enhanced rate £62.25

In our step-by step guide below, you'll find charts explaining how the points are awarded.

pip

How to claim PIP

You can make a new Personal Independence Payment (PIP) claim by calling the Department for Work and Pensions (DWP). Someone else can call on your behalf, but you’ll need to be with them when they call. There are also other ways to claim if you find it difficult to use a telephone. The process is different in Northern Ireland.

Appointees

If a person can’t do things like tell the DWP if their condition gets better or worse, or about changes in address or bank details and so on, another person may need to act on their behalf, as their ‘Appointee’. This must be because of their illness or disability and not just because they are still a young person. Chat to the DWP on the number below to set someone else up as an appointee.

Claim by calling:

Telephone: 0345 850 3322
Textphone: 0345 601 6677

Before you call, you’ll need:

  • your contact details, for example telephone number
  • your date of birth
  • your National Insurance number - this is on letters about tax, pensions and benefits
  • your bank or building society account number and sort code
  • your doctor or health worker’s name, address and telephone number
  • dates and addresses for any time you’ve spent abroad, in a care home or hospital

Carers are currently providing care worth £132 billion...which is the same as the entire NHS budget!

How do I fill in the form?

A Step-by-Step Guide to Filling in your Personal Independence Payment (PIP) Form

As soon as your form arrives, put on the kettle and work through our guide. It does take ages but we'll do our best to help you one question at a time.

personal independence payment

PIP Q.1 - List all the professionals that you see because of your conditions.

These can include your GP, hospital doctor, specialists nurse, community psychiatric nurse, occupational therapist, teachers, SENco, educational psychologist, physiotherapist, social worker, counsellor, or support worker. Say when you last saw them and include their contact details.

PIP Q2. Conditions & Medications

PIP Q2a - List all of your physical and mental health conditions and disabilities and say when they were diagnosis. If you’re not sure, just put down the year.

PIP Q2b - List all of the medications you’re taking and at what dose. Include any treatments you’re having or will be having and any side effects they have on you.

Personal Independence Payment (PIP)

...and while you're working hard on your PIP application, we wondered if there is anything else we can tell you about?

PIP Q3 - Preparing Food

This question is about if you can prepare a meal for yourself. Can you do things like peeling, chopping or opening packaging? Can you use a hob, oven or microwave oven safely?

PIP Q3a – What other help from an aid or appliance do you need to prepare and cook a simple meal for yourself? Do you need things like perching stools, lightweight pots and pans, easy grip handles on utensils, single lever arm taps and liquid level indicators?

PIP Q3b - Do you need help from another person to prepare or cook a simple meal?
Do they remind you or motivate you to cook? Do they plan the task for you? Do they supervise you, help you physically or do they prepare all your food for you?

PIP Q3c - Extra information - Preparing Food

Write down anything else about how you find preparing food tricky because of your condition. How are you managing now? How long does preparing a meal take? What help do you need? Is it safe for you to cook? Are you in pain or do you get tired?

 

Preparing Food Points
Can prepare and cook a simple meal unaided. 0
Needs to use an aid or appliance to be able to either prepare or cook a simple meal. 2
Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave. 2
Needs prompting to be able to either prepare or cook a simple meal. ‘Prompting’ means reminding, encouraging or explaining by another person. For example: you lack motivation to prepare and cook a simple meal on the majority of days due to a mental health condition, or need to be reminded how to prepare and cook food on the majority of days. 2
Needs supervision or assistance to either prepare or cook a simple meal. You may need supervision to safely heat or cook food using a microwave oven; or to claimants who cannot safely prepare vegetables, even with an aid or appliance. In cases of a risk of self-harm, there should be good evidence of the risk. 4
Cannot prepare and cook food. 8

 

Personal Independence Payment (PIP)

PIP Q4 - Eating and drinking

This question is about how you eat and drink because of you condition(s).

Do you remember to Eat? Do you need help cutting up your food? Can you put food and drink into your own mouth and can you chew and swallow?

PIP Q4a – Do you need to use an aid or appliance to eat and drink - like weighted cups or adapted cutlery?

PIP Q4b – Do you use a feeding tube or similar device to eat or drink - like a feeding tube with a rate limiting device as a delivery system or feed pump?

PIP Q4c – Do you need help from another person to eat and drink? Does someone have to remind or encourage you to eat? Do they supervise you? Do they physically help you to eat and drink or do they manage your feeding tube?

PIP Q4d - Extra information - Eating and drinking

 

Eating and drinking Points
Can take nutrition unaided. 0
Needs to use an aid or appliance to be able to take nutrition; or ii. supervision to be able to take nutrition; or assistance to be able to cut up food. 2
Needs a therapeutic source to be able to take nutrition. You may require enteral or parenteral feeding but can carry it out unaided. 2
Needs prompting to be able to take nutrition. ‘Prompting’ means reminding, encouraging or explaining by another person. 4
Needs assistance to be able to manage a therapeutic source to take nutrition. 6
Cannot convey food and drink to their mouth and needs another person to do so. 10

 

PIP Q5 – Managing treatments

This section is about how tricky you find it to manage your treatments, monitor your condition and stop yourself getting worse. That might include monitoring your blood sugar level or noticing changes in mental state and pain levels.

Q5a – Do you need to use an aid or appliance to monitor your health conditions or take medication or manage home treatments? E.g. Do you use a Dosette Box for tablets.

Q5b – Do you need help from another person to remind you to take medications and treatment? Does someone supervise you while you take your medication? Do they physically help you take medication or manage treatments?

Q5c – Extra information - Managing treatments. Chat about the good days and the bad ones. Do you have any side effects that make managing your medication tricky?

 

Managing treatments Points
Does not receive medication or therapy or need to monitor a health condition; or can manage medication or therapy or monitor a health condition unaided. 0
Needs either to use an aid or appliance to be able to manage medication; or supervision, prompting or assistance to be able to manage medication or monitor a health condition. Eg. You might need help opening bottles or taking pills out of blister packs; help interpreting or reading blood sugar for the correct dose of medication; supervision to ensure the medication is taken properly; prompting to remind the claimant to take medication at the appropriate time(s). 1
Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week. 2
Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week. 4
Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week. 6
Needs supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week. ‘Prompting’ means reminding, encouraging or explaining by another person. For example, a claimant needs 15 minutes of assistance with therapy each day Monday to Friday, or reminding to manage 8
disabled council tax and disabled bills

PIP Q6 – Washing and bathing

How does you condition affect you taking a bath or showering? Can you wash your body, limbs, face, underarms and hair and can you use a standard bath or shower?

Q6a – Do you need to use an aid or appliance to wash and bathe yourself, including using a bath or shower? Aids and appliances include things like a bath / shower seat or grab rails.

Q6b – Do you need help from another person to wash and bathe? Do they physically help you? Do they remind you when to wash and bathe and do they watch over you to make sure you are safe?

Q6c – Extra information - Washing and bathing

Tell us more about any difficulties you have when washing and bathing like risks including accidents a safety, the time it takes and if you have pain, breathlessness or get really tired.

 

 

Washing and bathing Points
Can wash and bathe unaided. You can wash and bath unaided, including getting in to and out of both an unadapted bath and unadapted shower. 0
Needs to use an aid or appliance to be able to wash or bathe. E.g. a long-handled sponge, shower seat or bath rail. 2
Needs supervision or prompting to be able to wash or bathe. ‘Prompting’ means reminding, encouraging or explaining by another person. 2
Needs assistance to be able to wash either their hair, or body below the waist. 2
Needs assistance to be able to get in or out of a bath or shower. 3
Needs assistance to be able to wash their body between the shoulders and waist. 4
Cannot wash and bathe at all and needs another person to wash their entire body. 8

 

PIP Q7 – Managing toilet needs

 

Talk about if  you can get on or off a standard toilet, and clean yourself after using the toilet. Can you manage emptying your bowel and bladder? Do you need a collecting device such as a bottle, bucket or catheter?

PIP Q7a – Do you need to use an aid or appliance to use the toilet or manage incontinence like commodes, raised toilet seats, bottom wipers, bidets, incontinence pads or a stoma bag?

PIP Q7b – Do you need help from another person to use the toilet or manage incontinence? Do they physically help you? Do they remind you when to use the toilet or do they watch over you to make sure you are safe?

PIP Q7c – Extra information - Managing toilet needs

Say how long it takes you to complete this activity. Is it different day to day? Tell them about good and bad days. Are you incontinent? How you manage it?

 

Managing toilet needs Points
Can manage toilet needs or incontinence unaided. 0
Needs to use an aid or appliance to be able to manage toilet needs or incontinence. 2
Needs supervision or prompting to be able to manage toilet needs. ‘Prompting’ means reminding, encouraging or explaining by another person. 2
Needs assistance to be able to manage toilet needs. E.g. If you require assistance to get on and off the toilet and/or to clean themselves afterwards, but 4
Needs assistance to be able to manage incontinence of either bladder or bowel. 6
Needs assistance to be able to manage incontinence of both bladder and bowel. 8

 

Personal Independence Payment (PIP)

PIP Q8 – Dressing and undressing

In this section, you can talk about how your condition affects you putting on and taking off clothes, including shoes and socks. Do you know when to put on or take off clothes, and can you choose clothes that are appropriate?

PIP Q8a – Do you use an aid or appliance to dress or undress like modified buttons, front fastening bras, velcro fastening, shoe aids or an audio colour detector?

PIP Q8b – Do you need help from another person to dress or undress? Do they physically help you? Do they select your clothes for the weather, the occasion or the time of day? Do they tell you when to dress and undress or do they remind you when to change your clothes?

PIP Q8c – Extra Information - Dressing and undressing

Add anything here that helps explain how else your condition affects you doing this activity like how long it takes you to dress and undress or if only have difficulty dressing certain parts of your body?

Dressing and undressing Points
Can dress and undress unaided. 0
Needs to use an aid or appliance to be able to dress or undress. E.g. modified buttons and shoe aids. 2
Needs either prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or prompting or assistance to be able to select appropriate clothing. 2
Needs assistance to be able to dress or undress their lower body. 2
Needs assistance to be able to dress or undress their upper body. 4
Cannot dress or undress at all. 8

 

Personal Independence Payment (PIP)

PIP Q9 – Communicating

How does your condition affect you communicating? That includes your speech, hearing or how you understand what is being said to you. (In your native language).

 

PIP Q9a – Do you need to use an aid or appliance to communicate with others like a hearing and voice aids, picture symbols or other assistive computer technology?

PIP Q9b – Do you need help from another person to communicate with others?
Do they help you understand what people are saying? Do you have someone who helps you by interpreting speech into sign language or do they help you by speaking on your behalf?

PIP Q9c – Extra information - Communicating

Mention it here if you have Tourette’s syndrome, Asperger’s or autism and find it difficult to communicate or if your medication has side effects that make it difficult to communicate. Does communicating cause anxiety and distress?

Communicating Points
Can express and understand verbal information unaided. 0
Needs to use an aid or appliance to be able to speak or hear. E.g. You might require a hearing aid or an electro larynx. 2
Needs communication support to be able to express or understand complex verbal information. E.g. You may require a sign language interpreter. 4
Needs communication support to be able to express or understand basic verbal information. E.g. You may require a sign language interpreter. 8
Cannot express or understand verbal information at all even with communication support. 12


 

gwvmbgpp-pq-steinar-la-engeland

PIP Q10 – Reading

This section is about how you read normal sized text and understand signs, symbols and words (in your native language). You should also talk about if you have problems concentrating when you read. Talk about how you read and understand signs, symbols and words written or printed in your native language, not braille. How you understanding numbers, including dates and other day to day reading like timetables.

PIP Q10a – Do you need to use an aid or appliance other than spectacles or contact lenses to read signs, symbols and words like magnifiers or need to take breaks?

PIP Q10b – Do you need help from another person to read or understand signs, symbols and words? Does somebody else need to read or explain signs and symbols to you because you have a learning disability or a mental health problem?

PIP Q10c – Extra information - Reading

Write about how how your condition affects your writing. How long does it take you to write a letter?

Reading Points
Can read and understand basic and complex written information either unaided or using spectacles or contact lenses. 0
Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information. E.g. You may require vision aids. 2
Needs prompting to be able to read or understand complex written information. 2
Needs prompting to be able to read or understand basic written information. 4
Cannot read or understand signs, symbols or words at all. E.g. You may require another person to read everything for them due to a learning disability or severe visual impairment. 8

 

Personal Independence Payment (PIP)

PIP Q11 – Mixing with other people

This question is about how you get on with other people face-to-face, either individually or as part of a group. Do you understand how they're behaving towards you, and can you behave appropriately towards them?

PIP Q11a – Do you need another person to help you to mix with other people? Does someone else need to encourage you to mix with other people? Does someone help you understand how people are behaving and how to behave yourself because you have a learning disability or mental heath problem?

PIP Q11b – Do you find it difficult or stressful to meet other people?

PIP Q11c – Extra information - Mixing with other people

Explain any stress, anxiety or confusion you feel around meeting people. Do you need help to stay safe? Do you have good days and bad ones? How do they differ?

Mixing with other people Points
Can engage with other people unaided. 0
Needs prompting to be able to engage with other people. ‘Prompting’ means reminding, encouraging or explaining by another person. For example: may apply to people who need encouragement to engage with others in the presence of a third party. 2
Needs social support to be able to engage with other people. 4
Cannot engage with other people due to such engagement causing either –

i. overwhelming psychological distress to the claimant; or ii. the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person. ‘Overwhelming psychological distress’ means distress related to an enduring mental health condition or intellectual or cognitive impairment which results in a severe anxiety state in which the symptoms are so severe that the person is unable to function. This may occur in conditions such as generalised anxiety disorder, panic disorder, dementia or agoraphobia.

8

 

Personal Independence Payment (PIP)

PIP Q12 – Making decisions about money

This section is about how you manage money. Do you understand how much things costs? How much change you should get and how to manage budgets? Can you understand how to pay bills and plan?

PIP Q12a – Do you need someone else to help you to understand how much things cost when you buy them or how much change you'll receive? Do you need someone to do it for you or do they need to remind you to do it or how to do it? Do you need someone to help you understand?

PIP Q12b – Do you need someone else to help you manage your household budgets, pay bills or plan future purchases? Do you need someone to do it for you or do they have to help you manage your bills? Do you need encouragement and help to do it?

PIP Q12c – Extra information - Making decisions about money

How your condition affects you understanding money? Do you have a learning disability that makes understanding money difficult?

 Making decisions about money Points
Can manage complex budgeting decisions unaided. 0
Needs prompting or assistance to be able to make complex budgeting decisions. 2
Needs prompting or assistance to be able to make simple budgeting decisions. 4
Cannot make any budgeting decisions at all. 6

 

Personal Independence Payment (PIP)

PIP Q13 – Going out

This section is about how your condition makes it tricky to go out. That includes how to plan and follow a route, follow a train and bus timetable or if you have severe anxiety or stress prevents you from going out.

PIP Q13a – Do you need help from another person to plan a route to somewhere you know well? Do you need someone to help you plan a route, or plan it for you? Do you have an assistance dog or specialist aid, such as a white stick? Do you find it difficult or stressful to handle change? Do you have a mental condition that makes travelling difficult? Do you need somebody with you to stay safe?

PIP Q13b – Do you need help getting to somewhere you don't know well?

Just like in the previous question about travelling to a familiar place this question asks about the same challenges but for an unfamiliar place. Is an unfamiliar journey different in terms of the challenges it presents to you?

PIP Q13c – Are you unable to go out because of severe anxiety or distress?

PIP Q13d – Extra information - Going out

Talk about tell us how your condition affects you going out if you. Talk about any orientation aids you use. Do you have good days and bad days? Do you feel anxious, fearful or nervous? Are you at risk of accidents, injury or do you get lost?

 Going out Points
Can plan and follow the route of a journey unaided. 0
Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. ‘Overwhelming psychological distress’ means distress related to an enduring mental health condition or intellectual or cognitive impairment which results in a severe anxiety state in which the symptoms are so severe that the person is 4
For reasons other than psychological distress, cannot plan the route of a journey. 8
For reasons other than psychological distress, cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points. 10
Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10
For reasons other than psychological distress, cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12

 

Personal Independence Payment (PIP)

PIP Q14 – Moving around

This question is about you standing safely without help and if you can walk safely

PIP Q14a – How far can you walk taking into account any aids you use? To give you an idea of distance, 50 metres is approximately 5 buses parked end to end.

PIP Q14b – Do you use an aid or appliance to walk? Walking aids include walking sticks, walking frames, crutches, and prostheses.

PIP Q14c – Do you use a wheelchair or similar device to move around safely, reliably and repeatedly and in a reasonable time period?

PIP Q14d – Extra information - Moving Around

Talk about any aids you use, rest breaks you need, pain, the time it takes to move around, accidents and other risks. Do you need someone to help you? Do you regularly fall? Do you find it difficult to move around on certain ground surfaces? Do you use a wheelchair? Is it motorised or manual? Do you experience any other difficulties, either during or after the activity, like pain, breathlessness, tiredness, dizziness or anxiety?

Moving around Points
Can stand and then move more than 200 metres, either aided or unaided. 0
Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. For example, this would include people who can stand and move more than 50 metres but no further than 200 metres either by themselves, or using an aid or appliance such as a stick or crutch, or with support from another person. 4
Can stand and then move unaided more than 20 metres but no more than 50 metres. For example, this would include people who can stand and move more than 20 metres but no further than 50 metres, without needing to rely on an aid or appliance such as a walking stick, or help from another person. 8
Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. For example, this would include people who can stand and move more than 20 metres but no further than 50 metres, but need to use an aid or appliance, such as a stick or crutch to do so. 10
Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. For example, a person who can stand and move more than 1 metre, but no further than 20 metres, either unaided or with the use of an aid or appliance such as a stick or crutch, or support from another person. 12
Cannot, either aided or unaided – i. stand; or ii. move more than 1 metre. 12

 

PIP Q15 – Additional information

This page is blank. Add any more information in here or on a separate page with your name and national insurance number at the top.

Add any reports from you family or carers here too....and that's just about it! You've definitely learnt another cup of tea.

 

Top Tips...

  • Get all of your professional reports as early as possible.
  • If you use information in the reports to give evidence of need in your form, then reference it and highlight relevant sections in the reports when you attache them.
  • If you're not confident hand writing your form, don't worry. You can answer pretty much everything by using separate pieces of paper that you attach to the form. Remember you MUST put the claimant's name and national insurance number at the top of each page.
  • Photocopy everything! You don't want to have to do the whole thing again.

When you've finished your form, post it off in the envelope provided.

You’ll then probably have to have an assessment to complete your Personal Independence Payment (PIP) application. This will be a meeting with a health professional who will write a report and send it to the DWP. You need to prepare for the meeting in advance. Happily, there's a fabulous guide from Citizens Advice HERE that will help you prepare.

DWP's intro to PIP's

This website includes an overview, details about eligibility, what you'll get, how to claim and what to do if your circumstances change.

Citizens Advice Bureau - PIP Language

This guide to the language used in the Personal Independence Payment (PIP) assessment criteria. Whether you can get PIP depends on an assessment of your ability to carry out certain daily living activities and mobility activities. This is measured against a list of descriptors, which describe varying levels of ability under each activity.

Challenging a PIP decision

A CAB guide to appealing against the decision made about your PIP claim.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

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Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

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Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

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Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

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Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Not sure where to turn?

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Contact our helpdesk

Do you need specific help for your disabled or special needs child? Click here to tell us more about what you're looking for and our helpdesk team will do their very best to find you what you need. All of our advice is confidential and we will not share your details or personal information with anyone.

Lost in Transition – part 13

As Good as it Gets part 13

As Good as It Gets

6 minutes early. Lovely.

Without looking up from her screen, the receptionist, wearing a black and white sleeveless leopard print top, red rimmed glasses and the yellowest, yellow hair tied back painfully tight asks for Max's DOB, next of kin, doctors address...all fine, “take a seat”. Still no eye contact. I hold fast stubbornly until she finally looks up confused and asked me to take a seat again. It’s the principle of the thing and I’m feeling like I need a bit of a win today. An easy win granted, and an almost unnoticeable win but the joy is in the small things right? So dear receptionists, just so it’s clear, eye contact is not time consuming it isn’t exhausting it just makes us feel human, it matters.  And so here we are again. Max is already back on his ipad. Minecraft calls and he sets fire to a tower with a newly selected lava block.

The magazine pile is eclectic as usual in the Maxillofacial Clinic. One National Geographic (I read that edition last time), Gardeners World Magazine, Patchwork and Quilting, 8 copies of Classic Scooterist (I wonder which doctor donated that little aspirational stash?), 2 copies of My Weekly, Puzzles Galore!, Simply Knitting, Select Sudoku and the compulsory tattered copies of Woman’s Weekly. However, I do think Military Modeling and French Property News are a little lateral even for Cambridge. I wonder if hospital magazine piles vary from area to area? I’d love to know.

2 minutes late now. This appointment is to check Max's bone graft and his new blue braces. Every time we've been in this particular waiting room before, Max always asks the same two questions...Will I get back to school in time for lunch? And will it hurt as much as last time? A big hug instead. I don’t answer either question, I never do. I don’t like to break promises.

8 minutes late. Today the chairs are set up in rows all facing each other. Characters of note include a round woman with a two tone haircut. She needs to get her roots done but I don’t think it’s a priority, she doesn’t look happy. She has a walking frame and a shockingly old looking dog with enormous eye brows. There is also a little boy who has yet to learn how to use his “inside” voice. I'm guessing he's quite new to all of this because his mum is catching everyone's eye and smiling politely as new patients take their seats. This is not the approved etiquette.

There is something perfect about a waiting room because until they call Max’s name my delicious fantasies can keep swimming through my mind like an overloaded washing machine.

The  first one is a classic…The consultant takes off her glasses, puzzled, “I’m not sure why Mrs Marek but everything has magically corrected itself.”

or…

A research team huddle around Max’s bed, “There’s a new treatment Mrs Marek with extraordinary results, completely pain free too.”

Or…well you see what I mean. I think that’s why people buy lottery tickets. They know they won’t win but it’s the minutes or days that you have until the draw that allows you to dream that everything’s going to be OK. The minutes I’m currently stealing in this waiting room are also allowing me to imaging that it’s all going to be OK.

 

If you’re in the same place, you might want to check out these useful links…

The National Autistic Societyhttp://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

 

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Lost in Transition – part 11

The Man Who Came to Dinner

I've just got back from our first family holiday with my boys and my newly (in)significant other ‘Bob’. I wasn’t going to share this because I thought it might be a little close to home but seeing as divorce rates for parents of disabled children is through the roof I thought it might be handy to share.

All a bit of a scary idea really, proper time with my two boys in a confined space without wifi. Suicide in retrospect.

It should also have been apocalyptic weather but the Norfolk gods smiled kindly on us and we had a blissful time. A good thing too because all of them absolutely refused to play Pictionary with me (can't think why!). It’s not as if I went to St. Martins School of Art and worked as an artist for 15 years…. actually it is just like that.

But in short we had three days on the beach making sand sculptures, massive sand castles filled with lego figures and flags and Louis on his skimming board darting along the water's edge. We ended each day by toasting marshmallows while telling ghost stories and finally went seal watching at sunset. The kind of English holiday that memories are made of.

The boys were both seriously needy though...

It was as if they had to be 10cm from me at all  times. They even kept tripping me up walking in front of me. I get it, really. First holiday after the divorce with somebody else in tow. It's all a bit challenging changing the dynamic. After all they've had enough change for a lifetime. But Bob as usual was incredibly kind and patient. He's been here before of course with his two.

He hung back when they wanted me to themselves and answered all of their crazy technical, scientific and historical questions. I may just like Bob a bit more after seeing him with my two. Bob spent every waking minute making sure my boys were the most important people on the planet. He's a charming, kind man.

And now for the introspective bit...

Autism is a different way of seeing the world. It’s another language and Bob doesn’t speak it at all. For me it is weird to realise, but Bob has never met anyone with special needs before. He said something that I’m finding hard to shake,

“I don’t know what Max is thinking”.

Those few words circle like a washing machine. I see dads walk away from their ASD kids all the time. Max isn’t even his.  His own father didn’t stick around so why would anyone stick around if they find stuff tricky and they don’t have any reason to stick around? I’m trying to keep this in proportion. Bob gets on brilliantly with both of my boys. He spent this holiday flying kites, explaining how crystals form and holding my hand when he was sure the boys weren’t watching. He’s a good man. But it’s like throwing an enormous dinner party. Everyone praising the food, crying with the joy of their fully entertained taste buds, naming their first born after the dessert and then a small voice at the end of the table says…”but the starter was a bit salty.” So what do you remember of the evening?…yup, too much salt.

 

If you’re in the same place, you might want to check out these useful links…

 

The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

Lost in Transition – Part 9

Max

The Crying Game

Between you and me I feel waves of guilt resurface when I go to Max’s medical appointments. This is odd, and I really hope I’m the only mum that feels this, but I still kind of blame myself for everything that’s gone wrong for Max. After all, my only job was to grow a baby like everyone else, pretty much everybody else managed it just fine. But somehow I screwed it up and now Max has so many more challenges, challenges he shouldn’t have. Challenges that don’t feel fair.

I find myself thinking about horrid people, bad people, wondering why things don’t seem to happen to them. I read about mums shooting up, boozing it up while pregnant and it makes me crazy. Seriously, I even gave up coffee, did the folic acid stuff and took up Yoga (I hate yoga). I hate feeling like this. I know it doesn’t help to wallow about my pregnancy history with Max but I can’t help myself going back there…perhaps it was that crop sprayer when I went on a walk? Or fumes when I painted his nursery? Maybe it was all those microwave meals in the 80’s? Or the mechanically retrieved meat products, the only stuff I could afford at college? Maybe it was the oil-paint or the canvas primer I worked with day and night? Or maybe it was some genetic curdling and if I had married anyone else then Max would be OK?

And then I think about Max...

And this, dear friends, is why I telling you this. Max doesn’t think his life is unfair. Max is the happiest, coolest kid I know. He loves school, has incredible mates, a girlfriend, he’s talented, he knows what he wants to do, he’s tall, handsome and most importantly he’s happy in his own skin. Max likes himself and everyone else likes him too…so what makes me think I have any right whatsoever to feel anything other than proud?

It turns out that my job was never to grow some mythical perfect little man. It was to help whoever my little man turns out to be to have the most exciting and adventurous journey he can have. And yup, it’s a serious fight some days and that chocolate cake and ‘do not disturb’ sign still call but that’s not what it’s about. Doctor Bob, Head teacher Bob, TA Bob, my extraordinary family, my warrior friends…we’re Max’s team. It’s impossible to feel lost in a team.

 

If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk