Lost in Transition – part 10

cake

Rear Window

It had been decided by the great and the good that the only way Bob’s Community College could decide if they could offer him a place was to observe him for a whole day in his natural habitat at school. The day was set for a Tuesday so Mrs. Bob from the College could also observe Max in his weekly after school cookery club.

Mrs. Bob from Bob’s Community College arrived bright and early. Of course I had no idea what was happening in Max’s classroom, just that it was happening. The email from the Transition Officer had clearly stated that,

“…they were not trying to catch anyone out…”

What? Were they?

It hadn’t even occurred to me that might be the case. What were they trying to catch us out with? What was there to figure out? All I knew was that Max was never going to get the math he needed to do cookery at a mainstream college and none of the special needs colleges did cookery. It sounded like we were waiting for the tagline at the end of a joke but it wasn’t at all funny.

Max took his usual place in his own little kitchen in the cookery classroom

He worked through the directions making the pastry, chilling it, peeling the apples. He worked alone of course but I don’t think he noticed he was. I hope he didn’t notice anyway. Most of all I hoped he wasn’t lonely.

I tried not to watch him cook of course, but I was. Mrs. Bob took her seat opposite me surrounded by chairs stacked neatly on top of tables (it was an afterschool club after all). She dismounted one of the blue plastic chairs and got her notepad out with a smile…

”You don’t mind if I sit here do you?”

Actually you frighten me, I thought, but...

“Of course, fab to have the company.”

I shut my laptop, tonnes of work to do too.

So much was riding on this one day...

If Mrs Bob thought Max’s culinary future was simply a hopeful parental dream, then Bob’s Community College would offer him a place without the cookery component. If Mrs Bob felt Max could handle level 2 math, then he could attend the mainstream cookery course at Bob’s Community College too. She kept taking notes and in-between each thought she clicked the top of her biro endlessly, constantly. What could she possibly still be writing about?

She’d been observing Max since 9am...

We chatted. The usual SEN small talk, games of SENdar in playgrounds, ASD eye contact, playing next to not with. It was like SEN dating small talk. An unwritten code of how to talk to SEN types. I kept noticing Max struggling with the right-handed apple peeler…He’s a lefty.

She talked about her family, how her son played golf and tennis right-handed but was in fact left handed. She’d noticed Max struggle with that bloody apple peeler. Then she said it…

”Max is doing all of this by himself isn’t he?”

By George she’s got it! Yup, that’s just how my baby boy rolls lady.

“I haven’t seen him this engaged or independent all day…”

Said Mrs Bob. I know! Seriously what have we been talking about for the last 3 months.

“Really?”

I said, I can’t actually pull off coy, but I tried anyway...

“So what do you you think he’ll do after college?”

An ungainly loaded question I thought.

“Well, I don’t see why he can’t get a job in a kitchen somewhere…”

She would make a terrible poker player, her left eyebrow shot up as she continued to scribble.

“Do you mean some kind of assisted work experience?”

No, an actual job, like a real person you crazy...

“No, just a job. Well if a couple of other people there are trained in the epilepsy stuff and I can get him help to get to and from work then I can’t see why he can’t work…”

“But he can’t do the maths can he? He won’t be able to do any of the measuring?”

What for washing up? Beating the hell out of some bread dough or perhaps even making sandwiches? Really?

“I don’t think all kitchen jobs need maths all the time. That kind of seems like a rather small obstacle to overcome in the big picture don’t you think?”

She smiled and continued to click the top of her pen…click…click…click. Terrible handwriting too. Mrs. Bob finally stopped the constant clicking of that freebie marketing biro and packed up her lined A4 pad into her plastic folder with a satisfying pop.

“I’ll get my report over to Miss Bob by the end of the week.”

Transition officer Miss Bob that is.

And there it was. Almost going unnoticed, a little wry smile...

A tiny ‘woman to woman’ moment. I can’t be sure it even happened and I’ll let you all know if this all works out but I think she got it. I think she could image Max training, him working, him living happily ever after. We’ll see. I won’t exhale just yet.

 

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

The Children and Families Act 2014 - http://www.legislation.gov.uk/ukpga/2014/6/pdfs/ukpga_20140006_en.pdf

The Equalities Act 2010 - https://www.gov.uk/guidance/equality-act-2010-guidance

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

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

Lost in Transition – Part 4

My Neighbour Totoro

You may never have heard about the classic kid’s movie My Neighbour Totoro. It’s a brilliant and deeply surreal Japanese animation about a size changing rabbit type thingy and a Cat bus. I’m not really selling it but it’s quite something….

...it’s also the movie my boys put on over and over again the day my ex-husband left us.

None of us saw it coming, I’m not even sure my ex saw it coming. It was a Sunday morning and he was gone by 10.30am and that was very much that. The three of us spent the entire day under duvets on our sofa cuddling, eating biscuits, crying and waiting for the sky to get dark and the day to finally die.

I could say it was the worst day of my life but it wasn’t, not by a long shot but it was the worst day my boys had ever had especially for my little one, my sweet little Louis. Louis is Max’s little brother. He’s now 12 going on 42 and that is (I think anyway) because Louis had to grow up too fast.

When Max was at his worst, about 6 years old and Louis 4, I’d got them both super cute red and white striped PJs. They looked like old fashioned illustrations for hard backed children’s books, gorgeous.

The First Time...

The first time Max had a seizure the ambulance men cut his overpriced stripy PJs in half to attach heart monitor stickers. Top tip here dear friends, the sticky residue from heart monitor stickers is really hard to get off a grumpy little boy’s tummy…tonnes of moisturiser works a treat…You’re very welcome.

As the ambulance men hooked up all of their kit, Louis stood at the front door in the dark. It was so cold. It always is when Max has seizures. I’m not sure why but all the doors are left open, I never remember to close them. I also never remember to pack Max’s shoes but that’s another story. By the time Louis was 5 he knew how to operate the oxygen and suction machines. He reminds me to give Max his meds. He also takes the brunt of Max’s postictal rages.

For years I’ve left him with friends sometimes for weeks on end to take Max to appointments, assessments and treatments. He bounces from friend to friend, spare room to spare room. He was such a lonely little boy, I’m not sure much has changed.

Now Max is in Transition, Louis gets to go on the back burner once again. He needs me more than ever but I’m still metaphorically making him stand in the dark in those stripy pyjamas.

When people talk about young carers it sounds like such a small thing. A young carer is someone whose life is significantly impacted by a disabled family member. What it actually means to me is that I stole from him. I made him grow up too fast. I will spend the rest of my life trying to make it up to him. It frightens me but I don’t think I can fix it.

 

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

Relate - https://www.relate.org.uk

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

Theme parks for Families with Disabled and SEN children

Theme parks

Are you looking for a discount Alton Towers Tickets? Or want to know more about Merlin Pass Offers? If you have a child with special needs, there is a lot of help if you know where to look.

A family day at a theme park can be a brilliant but also a wildly stressful experience. There are lots of freebies and help at most theme parks that can make your family outing a fantastic day to remember. First of all, you can get free tickets for your whole family or concessions for you as a carer of a disabled child depending on their needs. You can also queue jump, get priority parking as well as autism awareness wristbands for your child.

Free Theme Park Tickets for The Whole Family

Have you applied to Merlin’s Magic Wand Charity yet?

You can apply for up to 5 tickets (for the child and immediate family members) to have a day out at one Merlin’s attraction. These include: Thorpe Park , Chessington World of Adventures, Alton Towers Resort, LEGOLAND Windsor, LEGOLAND Billund, LEGOLAND Deutschland, Heide Park Resort and Gardaland, London Eye, Madame Tussauds and more.

Eligibility: You can apply for a seriously ill, disabled or disadvantaged children (aged 2 - 18 incl). These applications must be made by EITHER parents/guardians of these children OR organisations which work with these children. Have a look at their website for more information. IMPORTANTLY It can take 13 weeks to receive your tickets. Merlin's Wand Charity
Merlin’s Magic Wand does not provide exit passes these can be arranged directly through attractions.

 

Free Adult Tickets

Most theme parks and attractions will give you a free carers ticket.

This gives you free admission when you or another adult accompanies your disabled child. Call in advance to check what each attraction offers. Some attractions even do a special price for your disabled child as well. Each theme park seems to have a different policy about carer’s tickets so contact the themepark directly giving yourself plenty of time to send off any documents they need before you go. And don't forget to ask about disabled parking!

Queue Jumping

Most theme parks are sensitive to visitors with additional needs and recognise that for some children, waiting in a long line just isn't going to be an option.
 Alton Towers, for example, has a fantastic policy for kids that can't do queues, including those on the autistic spectrum. They will fast-track the child and their family (a limited number of visitors of course).

Autism Friendly Theme Parks

Some theme parks have extra help in place if you have a child with a learning disability. Some parks give you stickers or coloured wristbands for your child so park staff can be at hand if you need them or if your child becomes separated from you. Contact the themepark directly to chat about any extra help you need.

Top 5 Tips on what to take AWAY

  • ID for your child’s condition varies, so we recommend you take copies of your DLA, CEA card, Carers card or anything else you can think of, just in case.
  • You may find you can’t go on certain rides because of your child’s mobility – check ahead of time. Being turned away at the gate can spoil a great day.
  • It’s a good idea to mark the disabled toilets on the map when you arrive.
  • Don’t forget to pack your blue badge, parking can be a lot easier that way.
  • You will be allowed to bring a guide dog but not on the rides!

Get Inspired

Check out other great days out, short breaks and adventures you can have.

Useful Links

Theme Parks UK

This is your independent guide to UK theme parks. All the information you need on the UK's most popular theme parks, including reviews of the best rides, opening times, ticket prices, how to get there, where to stay, events, top tips and lots more.

Gullivers Land

Gullivers has six different parks in three different locations. Check out each location for specific disabled-friendly information.

Thorpe Park

Disability Guide

Legoland

Disability Guide

Drayton Manor

Disability Guide

Oakwood Theme Park

Disability Guide

Can we help you with anything else?

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.

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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 8

The English Patient

I’ve just had a lovely catch up with one of Max’s consultants. She really is lovely. It’s funny how spending time with someone that you’ve shared the very worst of times with can bring such laughter and friendship. I suppose it’s like a private member’s club that no one wants to be a member of. I do so appreciate the company.

 

Let’s call her Dr Bob. You see Max’s condition(s) haven’t changed so he doesn’t see the specialists as often as he used to. There’s a bit in the back of my mind that wonders if consultants get bored and want to figure out the fun, groovier conditions…something more entertaining, more likely to get an appalling disease named after them perhaps?

I’m not complaining though, really...

I’ve always hated that constant panicky, sinking feeling in consultant’s waiting rooms. You know that feeling when you know your baby’s future hangs on the next test result and you’re stuck in a full waiting room opposite the squirmy, screaming toddler and all you can do is smile kindly?

What you actually what to do is go home and on the way buy a great big chocolate cake and a bottle of wine. Then close the curtains, put on a boxset and eat the cake with a serving spoon with a ‘do not disturb’ sign on your front door.

So, yup, I’m happy I don’t have the hospital runs to London, Cambridge, Northampton, Bedford, Ipswich…and well, it’s a good thing.

The appointment I’ve just had was to get an up to date medical report to submit to Max’s transition meeting. The school have also managed to squeeze in his next annual review too so the report can multi-task which is a fine thing indeed.

There is something about a certain type of Paediatric Consultant that feels like a hug. It feels like teamwork, like everyone is working together to make Max’s life as ‘average’ as it can be. You know, I never thought I’d be fighting for average. And I never thought average would be so very hard to get. Damn.

So dear Dr Bob, I’m so glad you’re fighting for Max too. Most importantly, I’m so proud that Max has this undefinable factor that means that people don’t forget him, they see him as the precious little man I know he is.

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