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.

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.

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.

Personal Budgets

Personal Budgets

What is a Personal Budget?

Personal budgets are an amount of money given by your Local Authority to provide support that’s been identified in your child’s Education, Health and Care Plan (EHCP).

The personal budget is used to help your child’s individual needs and help them live more independent lives. You may be able to use it so a carer can take your child to Scouts, the cinema, out shopping, to help with personal care or to come along with you and help you while on holiday.

How do I get a Personal Budget for my Child?

Contact your Local Authority’s disability social worker team to get the ball rolling or ask to speak to someone at your LA who deals specifically with direct payments. Your local Authority will then carry out a needs assessment to get a clear picture of what your individual family needs.

Before your assessment think about...

  • What sort of help do you need?
  • How does your child’s disability/health affect them and your wholefamily?
  • What are you having trouble with at the moment?
  • How could your child have more control over their life?
  • Do your/their needs change?
  • How much help do you need and how often?
  • What do you imagine could change if you had the help?

You could ask for help to do the following...

  • Getting in or out of bed, washing, toileting, dressing
  • Playing outdoors, clubs, leisure or educational activities.
  • Shopping
  • Respite care or short breaks
  • Cooking
  • Socialising including going to events or places of worship

Top tips...

  • Find out what your local council’ s assessment criteria is before your first meeting.
  • Take notes during the assessment.
  • Ask what help your LA gives in order to manage your budget.

 Different ways to Manage your Personal Budget

Your Local Authority will give you loads of information and help about what options they offer and which way or combinations of ways you can get your direct payments.

Direct payments – your local council pays some or all of your budget into a bank account managed by you or someone else who will manage the budget for you like a broker.

An account managed by the council...indirect payments – the council will manage your budget and will sort out services on your behalf.

As an Individual Service Fund (ISF) – Your local authority pays an organization that provides support services and will follow your instructions in getting the services you need. You have a say as to how this support is provided.

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 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

 

 

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 7

Much Ado About Nothing

You must first understand how wildly damaged I am. I have this horrible habit of not stopping, not giving up, ever. When I was a kid I lived in London and would always run for every bus, every train. I found myself getting really anxious if I didn’t. There is a simple explanation. If I always did my best, then if it didn’t work out I didn’t have to blame myself.

It’s a pretty naive idea but it’s stayed with me. Now when I work I get horribly obsessed. I won’t sleep until I’m done. And to be done I have to go above and beyond. Max’s transition is under my skin in the same way.

Personal Independence Payment (PIP)

Contacting the shortlisted schools for more information was going to be a minefield.

So I did the only thing I could think of and got all grown up about it. I structured the questions based on some ‘fun’ bedtime reading namely The Children and Families Act 2014 and The Equalities Act 2010. The letters were formal, enormous and incredibly detailed.

I waited…then I waited some more. I got two responses after a week,

Thank you for your email requesting details regarding our post 16 provision for your son. Unfortunately we cannot provide for many of the requirements, therefore I have to regretfully say that we would not be an appropriate provision for him. If you need any further details regarding which aspects we could / could not provide then please do come back to me.”

The other school answered each question in the same amount of detail I’d sent them. They were surprisingly kind and open, they seemed to see him as a person. For the first time I felt as if Max’s promise might be able to be kept.

OK, one yes and one no. I sent out reminders to the other five schools through their main emails as well as the SEN department ones. I got two responses from PAs saying they would pass my message on. They either didn’t or the departments in question didn’t want to respond.

Instead I spent my time pouring over the school’s websites in shocking detail. Two felt right. I know, a terrible thing to trust your gut instinct but there was something that felt personal about these two. Less cattle like, they felt as if they were aiming at their kids having a future and weren’t looking at warehousing them. They didn’t’ even use the word ‘cohort’ in their about page.

I chatted to Miss Bob, Max’s Transition officer, about it and she arranged to speak to the rest herself. She has suggested visits and assessments. She wants more paperwork from Max’s school, from Max’s doctors, from his carers…it's endless. But at least it’s something I can get my teeth into.

 

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

Respite and Babysitting

Respite, Babysitting, Direct Payments & Personal Budgets

respite care for children with special needs

Everyone needs a break. Finding the right babysitter can really improve the quality of your and your child’s life. Your child needs a break from you, too. Whatever your child’s needs, there is always someone out there with the skills to help.

Depending on your child’s needs, you might be able to pay for babysitting through direct payments.

Personal Budgets

The new SEN and Disability reform bill says that your Local Authority needs to prepare a personal budget with your child's care and health plan. Your child's personal budget gives you a lot more choice about the services your child uses to support them. This might include direct payments that you can use to pay your specialist babysitter or respite care provider.

 

How to find a babysitter

Your local authority disabilities team might have a list of carers that they use. Alternatively, if you receive direct payments, your contact there might have a list of preferred agencies. If you want to find one on your own, here are a few places to look.

Your school or special needs school. There may be staff (teacher/teaching assistant/nursing staff) who would like to help out.
Your local hospice. It will often have a specialised outreach team who do respite in-house as well as out and about.
Remember to vet your babysitter carefully and look into their history as much as you can. Your local authority disabilities team will be able to advise you on how to find and vet a babysitter.

You might also find this advice from Directgov on finding and choosing childcare helpful.

 

Need a longer break?

Check out our holiday zone for ideas for short breaks where your child is fully medically supported – many of these are free or low-cost. Alternatively your local hospice may have weekends you can book in advance. Hospices offer support for a whole range of conditions, so check to see if your child might be included.

A lot of local charities also do days out with carers/chaperones. This might include your local Cerebral Palsy or Mencap group. Chat to your disability social worker, school Senco or special needs school to find local groups (Sky Badger will be expanding next year to include a local search facility, so keep checking back). Primary Times also lists local disability activities.

Personal Budgets

Direct payments can be used for a variety of services that offer your child stimulation, new experiences and independence. This includes short breaks, nursery placement with specialist support for your child, assistance to attend an activity, and personal care.

lovehearts_find-me

To get help paying for a specialist babysitter for your disabled or SEN child, you should contact your local Authority's disabilities team.

They will chat to you about doing an assessment. You can gets lots of help once you've signed up. Including help for your other children, short breaks and direct payments to cover your babysitter.

Find your local disabilities team using the Sky Badger local offer directory.

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.

What can you do if your child’s application for assessment is turned down?

Disability Living Allowance Dressing

If you're dealing with special needs tribunal or an assessment of special educational needs...Get advice and help here.

There is a lot of free professional advice available throughout the whole of the UK. There are also a lot of advocates and solicitors that specialise in SEN. We suggest you talk about costs right at the outset.  Time is of the essence. Just like the application process there are tight deadlines to appeal decisions. You also have to wait a certain amount of time before you can reapply. Some things are out of your control – sadly, the chances of success vary wildly depending on your local authority and how much funding they have left in the kitty. Have a look through these guidance notes: Special Educational Needs and Disability appeals (HM Courts & Tribunals Service)

If you take professional or free expert help, we still suggest you get every document emailed, acknowledged, time stamped and sent to your home address as a hard copy.

 

Here is a template letter for parents who have been refused an assessment

Every Disabled Child Matters, in association with Irwin Mitchell Solicitors.

Douglas Silas Solicitors

Everything you wanted to know about the law on special educational needs but were too afraid to ask.

l change in the way that education, health and social care professionals work with families and young people.

Detailed advice about the EHCPs

Use our directory to find lots of organisations and charities with detailed advice

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.

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.

What is an Education, Health & Care Plan (EHC plan or EHCP)?

The Education Health and Care Plan (E.H.C.P.) or E.H.C plan, is an exciting new system that puts you and your child at the very centre of the assessment and planning process. It is designed to make sure that your views are not only heard but also understood.

This is called 'person centred planning' because it  increases your choice and control. This new process focuses on what is important for children and young people. Thats because you know what you and your child want to achieve now and in the future. Young people and families have helped to design the plan.

The E.H.C.P. is designed to create a real change in the way that education, health and social care professionals work with families and young people.

ks2 english

Who is an EHCP for?

The educational health and care plan is for children and young people who have special educational needs (SENs) and/or disabilities. Your child’s needs will be assessed by education, health and social care professionals to see if you should have a EHC plan. You can talk to your child’s school, college or nursery about eligibility for an assessment. For example, your school’s special educational needs coordinator (SENco) will be able to help.

So how does it work?

At the start of the assessment, you and your child will get the chance to say what’s working, what’s not working and what you think needs to change. Your school and LA will help you with this because a great plan can theoretically mean great change for your child!

At the same time  information will be gathered from the other people working with your child and a meeting will be arranged. At this meeting you can figure out outcomes and how you think they can best be met.

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

Near the end of the assessment time, the multi-agency group will meet again to confirm the EHCP. They will decide what support you might be eligible for to meet your agreed outcomes. The plan will be clear about how much things cost and will have agreed timescales. This will  make sure that your child's plan is updated and reviewed regularly. That's really important so that any changes in their condition or development can be supported. The plan will then go with your child or the young person as they change services, change schools and also when they leave school and go on to college, training or employment.

The EHCP is designed to create a real change in the way that education, health and social care professionals work with families and young people.

How might this affect the support my child gets?

The EHCP assessment and planning is designed to focus on agreeing individual outcomes and the support needed to achieve these. The plan  will be tailored to each child's needs. This could include helping families to make best use of support available. These might include services available in the local offer, from the local community, or provided by statutory services.

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.

What age does an EHC Plan cover?

An EHC Plan covers disabled and SEN children and young adults aged 0-25

How long does it take?

The whole process lasts 20 weeks.

When Do EHC Plans Come In?

EHC plans start to come in from September 2014 and will be rolled out in phases over the next 2/3 years.

SQW-report-Planning-process-for-EHCP-Jan-14

Detailed advice about the EHCPs

Use our directory to find lots of organisations and charities with detailed advice

What can you do if your child’s application for assessment or EHCP is turned down? ...Get advice and help here.

Personal Independence Payment (PIP)

Sky Badger was chosen as one of the five charities to be honoured by The Guardian’s prestigious award.

Can we help 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.

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 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