Lost in Transition – Part 17

Max

Broadcast News

A few weeks ago, I got the extraordinary news that I was going to be awarded an OBE on the New Year’s Honours list. I was totally blown away and it nearly killed me not to be able to shout about becoming an OBE from the rooftops and jump around the house with my boys giggling…the news was embargoed until the 30th December.

The full title is Officer of the Most Excellent Order of the British Empire. I keep thinking about Bill and Ted’s Excellent Adventure….”Most Excellent!”.

I’m obviously not grown up enough or certainly mature enough to have been awarded this honour. I will however, fake being all grown up and proper when the time comes to go to the investiture. I need a hat though; my beanie won’t cut it I fear.

I held on, as I had to, in sharing my news until Christmas Eve but then told everyone in the world! It was amazing, truly. My friends, family, my incredible Sky Badger colleagues, the families Sky Badger has helped, well, I was overwhelmed to put it mildly. I still feel like an email could come any day telling me that they made a mistake.

 

Anyway…..

That is when a strange thing happened. As you all know, I’m a pretty private person and any kind of public speaking or press stuff really knocks me for six. Press started knocking, as expected and all went well for a bit. They always asked about Max, about when times were really bad, when he was ill, about how Sky Badger started and what the journey was like.

What I didn’t anticipate was how each time I talked about Max being ill, it brought it all back, one soul destroying piece at a time. In a funny way, Sky Badger has been a therapy for me. I’m too British to actually go to therapy so Sky Badger became a way for me to feel like I was doing something to stop other mums like me getting to where I had been. The thing about Sky Badger is that I wanted it to help other parents find that path out of the sadness and loneliness. There is a certain numbness to not knowing where to turn.

Yesterday I had the last of the big interviews. It was odd and I think I now know why. After all, I was answering these questions because they wanted to hear my story of ‘disaster does good’. My problem is that I hadn't built my own potted bit of professionalism to protect those fragile parts. I took it to heart, it was foolish.

My issue now is that I think I might be using those same fragile parts, the worst times with Max, to work as I do. It drives me, it excites me to give families the tools to build their children’s lives for the better. I still want to do so much more, to grow Sky Badger. To make Sky Badger as strong and bright as I used to feel weak and sad.

So, my question to you is, do I build a box to keep those fragile times safe and turn my work into a job and by doing so lose the drive those same fragile parts generate in me? Not sure, possibly over thinking. Perhaps we all do the same. Perhaps throwing ourselves into things we can fix goes some way to fixing ourselves? The fact is that Max is doing great. He’s had so much to deal with in his short life and he does it with elegance and strength. I’m not sure if I am as strong as him.

Today instead I shall pootle. Paperwork and domestic chores I think. There is something so comforting about working away snug and warm with a cold drizzle tapping away on the window. I'm going to keep doing the same all day if I can.

Extra help… In and out of the classroom

Disability Living Allowance Seeing

If you're looking for extra help for a child with SEN, Dyslexia, or on the autistic spectrum you have come to the right place!

What are Special Educational Needs (SEN)?

Your child has Special Educational Needs if they have a difficulty or disability which makes learning harder for them than for other kids their age. It could be anything from dyslexia or dyspraxia, to emotional or social problems.

Levels of help

There are lots of levels of help available to your child, with a statement being right at the top. Have a conversation with your school teacher or SENCO (special educational needs co-ordinator) for advice on the level your child needs.

The educational support process is like a staircase, and your child can only move up one step at a time, if it is clear that they are not making progress with the current level of support. It can take time to get them the right support, so hang in there, and be patient.

Gifted?

Your child also might have SEN and be gifted in another way. This is called Dual or Multiple Exceptionality. You can find out more with some brilliant factsheets from the National Association for Gifted Children about supporting gifted kids with additional needs.

Extra help

You can get extra help if your child is affected by...

  • a lengthy stays in hospital
  • mobility issues around their school
  • or sight or hearing problems that prevent them from fully accessing the curriculum.

People You'll meet...THERAPISTS & EDUCATIONAL PROFESSIONALS

While your child goes through diagnosis and treatment, you may come across some specialist therapists and professionals. Here is our handy guide to the types of professionals that are there to support your child and what they do.

teacher donate

Browse loads more help at school

Our directory is crammed with amazing organisations who can help with all aspects of your child's education.

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.

Shopping with Autism or Behavioural Problems

Shopping with or for a kid with additional needs can sometimes be traumatic. Whether you’re dealing with a full-on tantrum in the middle of the supermarket, or trying to get a wheelchair round a cute little craft shop, or finding clothes that meet your child’s very specific requirements, an activity that should be fun can quickly become a nightmare. There are lots of things you can (and should!) do to make your life a little easier.

Check out our accessibility information – here you’ll find out how to check in advance if you can get a wheelchair around the places you want to go to.
Shop online. You can buy just about anything you need from the comfort of your home. This means that shopping trips can instead become opportunities to enjoy time with your child, to develop their social, maths or literacy skills. When you’re shopping online, you have some specific rights to protect you.

The National Autistic Society has some great advice about shopping strategies.

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.

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?

istock_000021104923large

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.

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?

istock_000021104923large

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

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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?

istock_000021104923large

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?

istock_000021104923large

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 15

The Pursuit of Happiness

The Pursuit of Happiness

This morning as I looked in my rear view mirror, I noticed Max's hand print in the frost. It was a freezing cold day and I left the print there for ages, reluctantly watching it melt away as I defrosted the rear window slower than was probably safe.

I now have a tiny new white car to fit in with my post-divorce restyling. I tend to notice new things with my car as a consequence of its sheer tininess, it is by no means a mummy car. The car has become known as Cary McCarface after the almost named boat. You might remember the news story, https://www.theguardian.com/environment/2016/apr/17/boaty-mcboatface-wins-poll-to-name-polar-research-vessel. The Natural Environment Research Council put out a public vote to name their new boat. Over 124,000 votes went to “RRS Boaty McBoatface” but it was decided that it wouldn’t be a dignified enough name and the boat was eventually named “RRS David Attenborough”, which came in fifth. I also quite liked some of the other suggestions including “RRS It’s bloody cold here” and “RRS Mr Splashy Pants”.  

So as a completely pointless act of defiance, our new car has a silly name that makes me smile. It is also far too small for my needs and fogs up immediately whatever the weather. But it does have a top that comes down so the boys can wave their hands in the air like they just don’t care and the front of the car looks like it’s smiling all the time. It kind of makes up for the shock lack of boot space, almost.

That handprint still stays clear in my mind as we drive to school. It makes me think about how big those hands have become. How I didn’t think they would ever get that big. It made me remember how many times I'd held those little hands in doctor's offices, how many hospital ID bands they had worn and how frightened I was every single minute, of every single day for years and years.

I realised that I hadn’t done that silent crying thing for ages while driving. There was a track by Athlete called Wires LINK < https://youtu.be/uriGngTXyrE > that had silly amounts of radio play when Max was at his worst. It was about the writer’s own daughter when she was in hospital.

“Running down corridors,

Through automatic doors,

Got to get to you

Got to see this through.

First night of your life,

Curled up on your own.

Looking at you now

You would never know..

I see it in your eyes

You'll be alright”.

I remember wallowing in those lyrics for weeks. Now they just make me angry because for so many of us “You’ll be alright” turned out to be nonsense. What I do think now is some days he’ll be alright and some days he won’t. I watched Max, shaggy haired in my rear view mirror and realised that today was an alright day. I smiled at him, he smiled back and said "What?". He’s so age appropriate sometimes. Happy.

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 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

 

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Lost in Transition – part 12

Grange Hill

When I was growing up, Grange Hill was what a state comprehensive school was all about. That sausage, Zammo and Ro-LAND were my anti-heroes. Now, (a horrific 30 years later) my two strapping mini-men are both at a state Comprehensive School....but this one is different.

I think a lot of it comes down to the support they’ve both had. Obviously, Max needs a huge amount of medical support but it’s the communication help that’s made all the difference. The speech therapists, the OT, the constant encouragement academically and socially. The school even runs a board games club that (without any pressure) helps build turn taking skills and helps Max work on his small talk.

You have to understand where Max came from to get how big this is. Max went from being pretty much non-verbal in yr. 7 to in yr. 11 sitting exams, having a girlfriend, done his bronze DofE, going to college and he’s just been approved to do the NCS over the Summer.

The school has a sibling group too. My youngest found Max’s needs really hard to cope with and he still does if I’m honest. But knowing that other friends at school are in the same boat in having brothers and sisters with special needs was life changing to him. After that first sibling group meeting it was as if he exhaled for the first time in years. In the last year, he’s gradually came out of his shell. He’s become less angry and found that he does like some lessons. He got into sport in a big was and now does squash, tennis, rugby, climbing and fencing. He got his bronze award last night!

I know mums do this annoying bragging stuff on FB all the time but my two have had some extraordinarily tough times. They haven't always done well, been well mentally or physically, fitted in or even been that happy at times. Getting them into the right school might just be the very best thing I've ever done for either of them.

So why am I telling you this? Well, because I’ve made a tonne of mistakes. I kept them both in schools that were not right for them because I was scared to make a fuss. I didn’t ask the questions I should have, I took ‘professionals’ word as gospel even when I knew something was wrong. I was so afraid of not being liked, scared that ‘professional’ would think I was crazy or difficult.

The school they now attend has made an enormous difference to who they could become…I worked for my two so why don’t you suggest your child’s school starts a games club? Or offers the DofE to their SEN student? Or starts up a sibling club?

Become a pain in the arse, get things moving. For what it’s worth, I don’t care what ‘professionals’ think about me anymore. I will be as difficult and crazy as I need to be to make absolutely sure that my two get the best chances they can. Because when I do my best, they seem to fly. They have this strength, a kind of internal generator that pushes them onto bigger and better things. I can't tell them any of this obviously but I don't think I'll ever give up the hugs at the school gate even though they are bigger than me. They are my new heroes and I hope they know it.

 

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

Duke of Edinburgh Awards – SEN support

http://www.dofe.info/go/additionalneeds/

National Citizen Awards - http://www.ncsyes.co.uk/summer?gclid=Cj0KEQjw6-PJBRCO_br1qoOB4LABEiQAEkqcVZSGfXbrVy5PzJNblpdaAR-gZKsptFVxtV-w3QXz98UaApeY8P8HAQ&gclsrc=aw.ds

 

 

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disabled holidays uk

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Useful technology & kit

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

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

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

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