Disability Diaries : The Spine

Back in some part of 2014, my son - J1 - who suffers with quadriplegic cerebral palsy, was referred to a spine specialist with suspected scoliosis.  This completely threw me through a loop and I seriously went into melt down.  After the first appointment, when we were given a very thorough and clear talk about why he had been referred and what they were looking for, what could potentially happen and the probable timescale of this, I did what any self-respecting special needs mother does.  Went home, had a little cry about the unfairness of it all and then pulled myself together by processing the information.

A special needs mother doesn't get long to linger and wallow in self pity - there is too much to do.

For the last two years we have been back and forth for check up's with the spine surgeon and true to what was predicted in the first appointment, they have been just that, monitoring appointments.  He has X-Rays taken (never easy when a child can not sit up unaided), the specialist looks at them on the computer screen, feels down his back, spine and ribs, looks at him sitting in the chair from all angles, then addresses us, the parents.

"It's definitely getting worse.  Would you agree?"  Begrudgingly, we do.  At this point he usually says it's still not imminent for surgery and he will see us in six months time.  We leave the building and breath a huge sigh of relief, while the only thing J1 is concerned with is whether he can have a sneaky McDonalds for lunch.  But we do understand it is only a short term reprieve.  Just another chance to come up to the surface of the water and grab another mouthful of air.

Only, last time the Specialist diverted from script.  This time he 'hmm'd' more than normal, looked at the X-Rays more frequently and for longer.  Checked J1's age - twice.  As he ran his hand up and down the spine for a third time, he said "I think it's time for J1 to go on the surgery list.  Don't you?" 

It was like the air had been sucked out of the room and I what I wanted to say very petulantly was "No, actually, I don't think it's time, you are not going anywhere near my son's beautiful spine.' and knock his hand away. 

But I didn't, because I am a grown up and after two years of processing the information I have finally and rather ungraciously accepted the fact that my son is going to need spine surgery. 

Nevertheless, the specialist ploughed on warning us there is a fairly long wait list (about a year) and lots of appointments and check up's to go through at the hospital before it would happen.  Plus he would be seeing us again for another check up in six months time.

Six months time is now here.  The appointment is in two weeks.  Sleep is harder to come by all of a sudden, it feels like our grace period is coming to an end.  J1 is completely oblivious to the enormity of it and I am torn if the best thing to do would be try and tell him about it, to explain or not.  Sometimes I wonder if he could comprehend it and other times I think, not a chance.  He is such a worrier.  He can fret about something as small as a change in school bus pick up time for a month before it happens.  Would I be crueller by putting this into his mind, or keeping him in the dark?  How can I expect a 13 year old with delayed learning to process it when I am still not sure I am ready to face it?  You see, nothing prepares you for this shit. 

As a parent of a child with special needs you have to be accommodating in who you put your trust in.  Most of the things your child will go through within their life you start off having no idea is going to happen.  When you get a diagnosis, you think you are in the know, but you aren't.  They don't warn you about the weird and wonderful consequences of what not being able to walk creates - deformed hips, collapsed ankles.  They don't tell you that because your child has no trunk control his body weight will pull the spine out of shape and crush his pelvis. 

I guess they don't because it would just be too overwhelming.  Who could cope with finding out all of that?  They let one thing come at a time so you can digest it, process it and accept it.  They give you that chance to get to the surface for air. 

I guess at times like these, with the spine surgery, there is just one thing to do.  Prepare ourselves for it.  We are going to have to take a bloody great oxygen tank down with us and make it last.  Be strong, get through it, be the voice shouting in the corner for our child - because as a parent of a child with severe physical disabilities and special needs it's what we have to do.  There is no other option.

But sometimes, you do need that good cry first. 

   

The Disability Diaries : What I Didn't Want To Hear

You know that song, 'La La La,' that came out last year?  The one with the video where the little boy sticks his fingers in his ears when he doesn't want to listen to the man that is shouting at him anymore?  Sometimes I want to do that.  Stick my fingers in my ears.  Stick my fingers in my ears and not listen to the voice on the other end of the phone that is telling me they believe my son just had a seizure at school. 

 

A seizure.  A prolonged absence to be precise.  A form of epileptic activity.

 

In the graceful words of a dear friend : 'Shit.'

 

The school had mentioned they wondered if he may have been having some form of absence a few weeks back, but not having heard anymore since then I blissfully blocked it out and told myself they were probably just being over sensitive because he is still relatively new to the school.  And, in my defence, it hasn't been something that I have noticed at home.

 

But having said that, time at home is for complete chill and wind down space.  J1 is so tired from his school day, when he comes in his wants his tea, a stretch out with TV time, swiftly followed by lights out.

 

The phone call from the school, telling me this happened whilst he was having his physiotherapy carried out, was followed by a frantic call to J1's father and then straight onto the doctors.  Explaining the situation I felt physically gutted to have to relay that yes, he used to have them, but he hasn't suffered since he was about six. 

 

Why couldn't they just stay away? 

 

The doctor noted that she would make an immediate referral to a Paediatrician who would see him and probably refer him for EEG testing.  I remember the last time he had one of those.  He must have been about two.  For eight years we managed to avoid the need for any further intervention.

 

Gutted.

 

Since then he has been watched like a hawk.  Any lack of blinking observed and determined as 'an absence' or just a lack of blinking.  He has looked at me a few times, studying him intently and actually said in that sulky, teen (even though he is only 10) way

 

 "What?" 

 

Hearing that sends floods of joy through me.  My reply is to go and hug him, as tightly as I can, given you also have to hug whatever piece of equipment is keeping him upright at the time.

 

That is one of the really hard things about the form of J1's disability.  Because he has no trunk control, and I mean none, he always has to have support so it is almost impossible to give him a proper hug.  The equipment is stealing my hugs I always feel.  I try and lay alongside him on the bed and hold him, but he can't reciprocate and it is tough when he can't move to allow you to get your arm right under him.  It is now impossible for me to try and hold him up with just one arm, he has grown too much, too quickly.  I didn't realise how soon easy hug time with my son could be taken away.

 

Because of this I find myself being a little over zealous with hug opportunities with J2, but he is still so young he doesn't mind.  I wonder what I will do when the day will inevitably arrives where he pulls away.  Cue fingers in ears.  With eyes closed too.

 

So, after having just one day of feeling upbeat because things seemed to be coming together, this now raises its ugly head.  I once again am waiting at the mercy of the professionals to try and work out what is going on in that beautiful little head of his.  I asked him the other day, whilst he slept so peacefully.  I didn't get an answer.

 

I just hope they do.

 

The Disability Diaries : Recognising Progress

Quite often I write the 'Disability Diary' posts when I am frustrated or sad about an issue.  Writing about it is my way of settling the mind or venting the anger.  It doesn't solve the problem but it helps clear my mind or form a plan.  Sometimes it feels a little like positioning the pieces of a jigsaw puzzle into place.  After that there is just the fiddly task of getting the pieces to stick together.

 

A few months back I was feeling particularly overwhelmed by life as a parent of a child with severe disabilities.  We had decided to move to a new area, and it felt like we were starting all over again what with struggling to get the professionals in place that we need for J1 to have all his needs diligently monitored.  Just to get a phone call back, and not necessarily from the correct person, seemed to take four or five calls and messages.  It seemed we had moved but before we could get to the right place for J1, first a huge brick wall needed to be scaled.

 

A few months on and slowly I feel someone has started throwing us some tools to help climb that wall.  The school review saw a referral for a CND put into motion.  The school OT finally cleared up the confusion about what area we came under and we now have an OT, with an actual name!  With her in place, several of the other issues are now being sorted out.  As I write this post I am waiting for a hoist to be delivered and some Wendy Lett slide sheets for the bed.

 

Wendy Lett slide sheets are a smoother material cover that should make it easier to move J1 back up the bed.  What with the rolling him from side to back to change his pad and get him dressed, he usually ends up out of position.  I am a 60kg female and my son is 54kg.  To try and pull him back up the bed, against the friction of the bed sheet is no easy task.  I don't expect it to be easy but I am always looking for ways to make it easier.  To know these sheets have been available but never suggested to me before is quite frustrating.  He is 10 years old, and we have been aware of his disabilities for 9 of those, yet I still feel as in the dark as when we started.

 

Saying that, I also have 9 years of skin thickening experience and now know sometimes stamping the feet is the only way to get anywhere.

 

On a further note in praise for the OT, following on from a general discussion we had regarding 'personal care' for J1.  When J1 goes to his grandparents for respite he has an adapted bathroom, thus a shower, however, our house is only rented so I have to bed wash him from head to toe every morning and, sometimes, depending how warm the day has been night as well.  We make it fun and it does give J1 quite a good physiotherapy session as each body part gets moved individually whilst being washed and dried.  But, particularly in the summer months and as he gets older, a good 'soak' is quite lacking.

 

Cue, The Water Genie.  This ingenious item is essentially a blow up paddling pool for the bed.  It then comes with a portable water unit with attached shower head that provides approximately 10 minutes of continuous warm water.  After washing it sucks all the water back out.  Now, I am very excited that we are going to get the opportunity to try one of these, despite a few reservations.  No matter what equipment you get to help, they all have something you haven't thought of.  For example, in this case I am wondering how quickly it will remove the water because for the length of time you are removing the water, J1 will be lying wet and probably getting a little cold whilst waiting for the water to disperse so he can be dried - see what I mean? 

 

Another example of this is hoisting.  Yes, a hoist is essential and much needed and we could not live without one.  But people say to me 'Well you have a hoist don't you?' when I say it is difficult for me to move J1 around as he gets increasingly bigger.  Like it sprinkles fairy dust over him and magically lifts him through the air and into his seat.  The reality is this; a hoist is a large and heavy piece of equipment before the weight of the person using it is added into the equation and to move it on carpet is pretty damn hard.  Positioning its huge legs so you can get close enough and in exactly the right position takes patience and precision.  Before you even get to that stage you have to get the hoist sling in place.  And that is so much fun. 

 

The hoist sling needs to go underneath the body and be in exactly the right place otherwise the lift will not be at the correct angle and not lower into the chair in the right position.  To get it underneath the body, J1 must be rolled onto this side (just to set the scene accurately J1 can not assist with this, his weight is, although I hate to use this expression 'a dead weight').  Once on his side you must try and keep him there, whilst laying the hoist sling as flat and accurately as possible over the length of his body (all along the back from top of his head to about his knees).  The aim here is to try and get as much of the sling under the side he is laying on as this makes it slightly easier when you roll him back and you have to try and pull the sling material through so he has equal amounts either side (even being a veteran at this usually requires more than one attempt).  Then all the straps (six in all) can be lined up ready to hook up to the hoist arm.  Easy as hell hey?! 

 

But as I said, this post isn't to gripe.  I am fully aware in the case of disability, nothing is easy.  All these things are just to try and make life easier.  And I am so relieved that we now seem to be getting somewhere with it all.  Equipment is just one small area in a huge sea of things he needs to make his life as pain free as possible.

 

J1 should, this very week, be receiving a referral to a specialist spine unit.  This was never an area I wanted to have to venture into but the reality is, we have and we just have to deal with it.  Our job is to ensure he is seen by the best people he possibly can be.

 

We have managed to get him into a new eye clinic and also referred for a functional assessment (eyes and brain processing).

 

We persevered and had a very good appointment at wheelchair clinic.  For sometime we have been wanting to see if a specialist chair called a CHUNC would be suitable for J1 and I am pleased to report we are going to have a two week trial with one.

 

All those pieces of the jigsaw that seemed so jumbled and a mountain to sort through are now lining up and with more patience and methodical work on the part of everyone involved, should start building a better picture for J1. 

 

And that is the only thing that matters.

 

This is always going to be an on-going and continuous way of life for us.  So for now, it is a moment to celebrate moving forward, that is as important as complaining when we aren't.

 

 

 

The Disability Diaries : The Tsunami of Emotion

Yesterday was one of those days I hate.  A day where fear catches up with me and washes over my mind like a powerful tsunami. 

There is no out running it.

There is no swimming away from it.

There is no rescue helicopter coming for me.

It was one of those days I have to submit to, in the hope that if I let it ravage me, then like a dog with a rag doll, when it is bored it will toss me aside and if I am lucky I have the strength to pick myself and crawl to safety. 

The safety of another day.

I thought it would help if I wrote down all the things that scare me.  All the things that must be seeping out of me, like blood, to attract the shark.  To try and dispel of them.  Or just to get them back into Pandora's Box so I can get along perfectly well for, well, however long the lock will hold.

What was it that set me off?  What rumble at my core set the trigger for that tidal wave?

It was something as simple as changing J1's socks.  I noticed that his right ankle looked quite misshapen.  I looked again, and yes, the ankle bone is sitting next to a lump.  And the foot was very hard, almost solid.  I remembered sitting rubbing an ankle and foot like that before.  My nan's.  When she got very poorly and could no longer get mobile.  Whether it be water retention or whatever, I am not sure, I rubbed and rubbed and that is when I got caught.

The thought of operations entered my head.  Will he need operations on his ankles and feet, for the same reasons as he has had to have the horrendous operations on his hip - if they are not used and do not weight-bear they start to grow out of form?  The words 'operation' and 'surgery' start to scream in my ears. 

Moving on, my mind moves up his legs and hips, already resembling a patchwork quilt of crass needle and thread marks.  I wonder if that wince when I was changing his pad earlier in the day is frequent enough to worry that, yes, he has had rapid growth spurts and, yes, he will need the same surgery again? 

Operation.  Surgery. 

His spine, I try to gage as he attempts to sit holding his head, only partially winning, is it curving more now than four months ago?

Operation. Surgery.  Spine.

I am struggling to breathe mentally, as the fear starts to take over and win.  Mind in overdrive.  School keep asking me about his history with epilepsy.  It hasn't been something I have had to think about much of late, we were lucky and the epileptic activity that J1 once demonstrated seemed to vanish, but they are not so sure that he hasn't been having some absences at school. 

When they told me I was calm, I believe they are over-reacting, but now, I study him every pause, every quiet moment, is it an absence?  One of the things I have counted as a blessing, that he does not suffer with epilepsy, is it coming for us? 

Operation.  Surgery.  Spine.  Epilepsy. 

Now I am struggling to breathe physically.  I need some oxygen.

I went snorkelling once but I spent most of the session attempting to put my head in the water and panicking, coming up and thrashing for air.  Stay calm, the leader signalled.  Take it slow, just breath in and out through your mouth.  It took all my control and discipline and the mantra 'Just breath through your mouth.  Just breath through your mouth.' to be able to concentrate enough on doing so.

Just breath through your mouth.  That is what I am silently repeating to myself now.  Then a little voice breaks into my thoughts.  The voice of J1.

'What time is The Chase on?' he asks.  A life-raft breaking through the rough white foam of the wave.  My link to reality.  What is the reality?  Yes, all those questions are there, waiting to be answered.  But day to day life goes on and he needs me there, not floating desolate in a deep vast sea that I can not control. 

So, I do what I do best, and care for J1 so that we don't have to answer those questions yet.  We do everything we can to keep them as far away from him as possible.  He must never see that tidal wave of fear.  I am his sphere in which he sits, oblivious, dry and content, like a child playing in one of those hamster balls on a swimming pool.

And I acknowledge, just occasionally I must get wet and then merely dry myself off.

 

My Reasons to be Cheerful #R2BC

Well, it has been some time since I have linked up with My Reasons to be Cheerful, but I am looking forward to doing so.  I love that no matter how bad your week may seem, there is a reason to sit down and pick out what good has happened.  No matter how small.

 

This month (jolly old April) it is being hosted by Ojo's World, so please link up and check out the other uplifting posts.  If you are having a bad day, it might be just what you need to encourage you to find the positive.

 

So, without further ado;

 

What has made me cheerful this week?

 

* My mum came to stay.  Since the relocation it has been a big adjustment, not having my parents just around the corner.  Mum and I would pretty much see each other, at some point, every day.  So now we are two hours away we have to arrange 'stay-overs' and this week was one of them.  It is lovely to have her company for a couple of days.  I take her to lunch and she clears my ironing basket.  I get extra help with the children, always much appreciated.  And I get to be reminded that I am very lucky to, not only have my mum but to have such a wonderful friendship with her.

 

* Dancing on Ice - The Live Show.  One of the reasons for my mums visit this time was because I had tickets to see our favourite TV Show at Wembley Arena.  As soon as I heard that Dancing on Ice was going into it final ever series I booked tickets and we had good seats.  We had a wonderful evening, the show was absolutely fantastic and I am so glad I got to see my much loved idols Torvill and Dean perform for one last time.  It almost made me want to take up Ice-Skating again.  I said almost.

 

* I got 1300 words on my WiP written.  I wasn't sure I was going to get any done at the beginning of the week so I was very pleased with this.

 

* I caught up with some of my favourite blogs.  It has been a while since I have been in the blogging loop and it felt nice 'catching up' with the wonderful worlds of some of the lovely writers out there.

 

* We finally made some progress with one of the professionals I have been trying to get on board for J1.  Just one more phone call will mean that yes, we have got to the right place.  This makes me hopeful and more determined that I will track down the others. 

 

* I started reading The Great Gatsby again.  I just love this story.

 

So onto another week we go.  Let's hope I have as much to be cheerful about next time!

Guest Post : Warrior Mother

This week I am dedicating my blog to Motherhood. With Mothering Sunday fast approaching I wanted to spend a week enveloped in Appreciation for Motherhood, in all it's guises. In a series of amazing guest posts we are hearing what Motherhood means to an array of writers. Our guest writer today is fellow Special Needs Mum and blogger Donna, who writes over at www.autismandlove.com. All contact details for Donna can be found at the end of the article. Enjoy.

***

So I'm sat here on a lazy Saturday night watching "the matrix". I'm watching the female character, Trinity, kick the ass of the agents ably accompanied by Keanu Reeves and my mind starts wondering...as it does!

 

I've always had a childish infatuation with warrior women...strong confident kick ass females like Lara Croft inspire me! I once trekked through Guatemala for charity and back packed round Thailand inspired by this Xbox boy’s fantasy. Posing non-stop with fake gun in my hand whilst scaling volcanoes and dossing on beaches!

 

A lot can be achieved through role models. Whether they are fictitious or human? Whether they are empowered artefact hunters or Jane Austen heroines we all have to have someone we look up to. Someone we can take strength from. 

 

There’s a modern day phenomenon called the "warrior mother". An army of women who have chosen to follow the strength of their inspirations and "kick ass" for their families. These women fight tirelessly on a daily basis for what is right. Not politically. Not a feminist movement. Not lobbying the government or staging protests. They are ordinary mothers living extraordinary lives within their own homes, every day. And what they fight for is their kids. And what’s right for their kids.

 

I've written before in wise words from..rocky balboa? about the habit people have once you get a diagnosis of following that with the words "get ready for a fight" and they are right but perhaps not just in the way they mean it. You see every day you fight and battle. With professionals. With schools. With ignorance and with bureaucracy. Even this week I've had my request for Jesse's assessment for sensory processing disorder turned down because she is autistic and therefore hard to assess. But I won’t give up. I will fight. Not necessarily with the professionals though. I will research private assessments and I will continue to make a nuisance of myself at the OT departments but most of all I will battle with the autism.

 

If the professionals won’t help me and if ignorance is rife. If people won’t listen then I must do it. All of it. And I will. If I can’t get the understanding and the assistance from an OT to help Jesse with her sensory issues then i must battle like a warrior and gather that knowledge myself. I must dedicate time and money into sensory play, give my time to her to help and assist her. Find out what she likes and don't like so she can calm down and find some peace from time to time.

 

If Cody needs a photograph taken of every item in the house that he may ask for to improve his communication then I'll do that too. If he needs patience and empathy whilst he’s kicking and slapping me then it’s my duty to give him that.

 

You see every day I soldier on for my children to do what’s right and in doing so I stand alongside mothers everywhere and declare ourselves warrior mothers. We may not have changed government legislation, we may not re write diagnosis journals or burn our bras in the street but behind closed doors every day we are fighting the disabilities that live alongside our children to make life better for them.

 

I don't have to change the world to be a warrior. I don't have to carry weapons tucked in my hot pants to be in battle. If every day I accomplish something within my own four walls that improves the quality of life for my kids even only for a minute then I'm as kick ass as Lara...I am a warrior mother. 

 

About Donna

 

My names Donna and I'm a mother of two children. I'm a mother of two autistic children. There's a difference and there always will be which is why I write a blog about my experiences, thoughts and emotions of being the mother to Cody (4) and Jesse-Leigh (3). In every other way we're your normal, average family..husband, kids, dog but once a week i unburden my soul at www.autismandlove.com and give people a glimpse into the life of a "special needs parent".

The Disability Diaries : Netbuddy - A great resource

As anyone who comes across my blog is aware, disability and special needs feature a lot, because I have a son who has Cerebral Palsy and consequently disabilities and special needs.

 

I was recently contacted, because of this, by the website 'Netbuddy'.  They asked if I would be happy to feature an article on their behalf.  I was unsure what Netbuddy was at first, but soon found out and was more than happy to help.

 

Netbuddy is a fantastic resource for parents with children of learning disabilities, autism and special needs of any description.  It is a place where parents can come and share information - and as any parent of a child with disabilities and / or special needs that is vital as clear and real information can be hard to come by sometimes. 

 

The article below outlines much better than I can the importance of Netbuddy, as it is written by the amazing women who founded it.  Please share this post, so as many parents as possible can be made aware of this website - the more people involved in it the better it will work.

 

 

********

Parents are the real experts says learning disability charity founder

Deborah Gundle talks about her self-styled ‘mumsnet for special needs’ www.netbuddy.org.uk and how other parents are the key to making it work

When my oldest son Zach was born, I knew instinctively that something wasn’t right.  At 7 months old, he was diagnosed with Angelman syndrome, which meant he’d grow up with profound learning disabilities.

Looking back, I wish I’d asked for more help from my family and friends in those early years, because I know now they would have been happy to give it. It’s often hard for other people to help, unless you tell them exactly what they can do.

One of the things I struggled with when Zach was little was how much time and energy I’d spend solving day-to-day problems. Zach was still crawling till he was about seven, and I spent ages trying different things to protect his knees, which were always rough and bruised. Finally I hit on the perfect solution – goalkeeper trousers for kids, which were padded in all the right places. But Zach was nearly six by then, and I couldn’t help wishing I’d known earlier.

That’s how the idea for Netbuddy came about. It would have been so helpful to have some sort of practical handbook, with tips and ideas for all the problems I encountered when Zach was growing up. But of course nothing like that existed.  I knew other people had probably solved the same problems I was dealing with, and I wished I had access to their knowledge.

Health visitors and professionals were, of course helpful, but unless you have direct experience of learning disability – unless you’re living with it day-to-day, you can’t really know what it’s like.

I launched www.Netbuddy.org.uk two years ago with the aim of capturing that huge wealth of expertise that parents and carers have, and making it easily available for other people to tap in to.  I wanted to create a place where people could submit and search for tips on a whole range of practical issues – everything from bed-wetting to coping with challenging behaviour.

Of course, when you’re a parent to someone with special needs, caring doesn’t end when they become an adult. So Netbuddy offers tips for people of all ages. Zach is 18 now, and he’s going through one of the most important stages of his life – the transition from children’s to adults ‘ services. I value any advice I can get from other parents who have already been through this process.

That’s what Netbuddy is all about – passing on what you have learned to others who can benefit from it.

Netbuddy works because people in the learning disability community want to help each other. If they can offer some support or advice that will make someone else’s journey easier, they will.

I am delighted by how quickly the site has taken off, and by the strength of the community we have already developed at Netbuddy. But in some respects I’m not surprised by it because Netbuddy fills a very basic need for practical problem-solving that everybody has.

We’ve had people writing in telling us that a tip they’ve picked up on Netbuddy has changed their lives. Sometimes it can be a really simple idea, but it might have given them their first full night’s sleep in 10 years or provided the breakthrough in toilet training they’d been desperate for.

Netbuddy has also hit a chord with professionals– teachers, nurses, therapists, support workers – who come into contact with people with learning disabilities through their work. They use the site to pick up tips and ideas for themselves, but also to pass on to families they support.

Last month, Samantha Cameron hosted a reception for Netbuddy at Downing Street. She described Netbuddy as a ‘vital resource’ for families who are affected by learning disability. It was wonderful to have that recognition, not just from someone so high-profile, but also from another parent. Having had a child with special needs herself, she really understood how important Netbuddy was.

It does feel like we’ve come a long way very quickly, but we still want to reach a lot more families and carers who could benefit from using Netbuddy. As parents, we have a goldmine of useful information at our fingertips, and it’s up to us to pass it on.

To find out more about Netbuddy, visit www.netbuddy.org.uk

 

Deborah & Zach

A Very Special Needs Christmas Show

My admiration for J1's school is great at the best of times, but none more so than whenever they do the same as every other school and put on displays, activities and shows.

 

Within this fantastic special needs school they are already dealing with a whole host of extra 'pupil needs'.  So where they find the time to organise, practise and execute Easter events, Summers Fairs, Christmas Fairs, Christmas shows to name but a few, is just inspiring to me.

 

Every day I am in awe of the dedication staff, assistants and volunteers have to help our children.  But at this time of the year, when they ensure that those children experience what every other child in every other school in the country are doing I am blown away.

 

Our annual invitation to the School Christmas Show came last week.  We asked J1 what he was doing in the school play and his response 'It's a secret, I not telling.'  All we knew is that we had to send in a funky hat, scarf and gloves for him.

 

Wonderfully the school hall was packed out with happy, expectant and 'already bursting with pride' parents.  The theme of the show was Christmas Movies.  With everything ranging from The Wizard of Oz to Elf, the individual classes performed dances, songs, little skits and gave us some unplanned comedy.

 

Watching the children, adorned in outfits, including some fantastic wheelchair incorporated ones (believe me - I was open mouthed at how wonderful The Tin Man looked in his chair and mentally made a note for next years Halloween costume) was both heartwarming and tear-jerking.

 

The great thing this year, J1 did not have a meltdown at the door of the hall resulting in him being whisked back to class.  He coped with all the noise and unfamiliarity and actually performed!  I will never watch The Snowman without thinking of his class performance again.

 

As the audience clapped and cheered and encouraged I was reminded of how lucky we are, that J1 is at school and involved.  That we can attend all of these wonderful activities like we will for J2 when he starts school.  Too many of my mummy friends are not in this position, and at this time of the year we should think about them, and how they are feeling.  We should think about all of the amazing children that are going to be spending Christmas in hospitals.

 

We should really appreciate what we have.

 

 

The Disability Diaries (The Life of J1) : A Very 'Special Needs' Harvest Festival

I have noted on many occasions how highly I think of my eldest Sons, J1, school.  I believe his time at the school has enhanced his life in almost every way possible.  It is the school, I maintain, that turned him from saying two words into a chatterbox.  It is the school that has helped him to develop a wonderful sense of humour.  It is the school that has made him accepting of other children his age, instead of being afraid of them.

For those who have no experience of being involved with a Special Needs school, they may think it would be very different to a mainstream school.  In lots of way it is.  Along with the teachers there is a much higher ratio of 'teaching assistants' in each class.  The school is usually also host to a lot of 'Ists' on a daily basis.  For example, Physiotherapists, Occupational Therapists, Speech and Language Therapists, Music Therapists.  Outside of the classroom is an array of equipment; wheelchairs, standing frames, walking frames; mobile hoists; wedges.  There is usually a few people fixing and adjusting those pieces of kit. 

Instead of classes being host to a tiny cubicle with small toilet and sink they are built with a large 'changing place' and along with the more able-bodied childrens facility there is also a hoist, a changing bench and storage unit to hold all the individual supplies of pads.  There are an array of sensory rooms, soft rooms, quiet rooms - places children with the need for their own space can go and feel calm.  There is a full time on-site nurse to help ensure that all medication and intravenous 'food and drink' is administered correctly.

In the playground you will find all the usual items but in addition to this you will find a roundabout and swing that a wheelchair can be fixed onto.  A sensory garden with wind chimes and colour-makers.

However, in the midst of all these 'differences' many things are the same.  The school day starts at 09:00 and ends at 15:00.  They have morning break time and lunch time in the big hall.  They have Assembly on a Friday afternoon.  They have a school curriculum to work through, parent / teacher evenings, end of year reports and an Annual Awards Ceremony.

I did not know what to expect when J1 started.  I suppose I expected that he would be 'learning' a little in addition to his physical needs for Physiotherapy etc.  I did not expect him to be learning as much as he is - shame on me for not realising my sons capabilities and thank God for the school that they did! 

What I did not expect was that the children would participate in all the things I did at school.  I suppose I thought what with providing education as any school would and attending to all the extra needs of the children, they would have the time.  How wrong was I. 

 

Every year we attend the Christmas Fair, with many stalls being full of things the classes have made themselves.  It never fails to amaze me how they manage it.  We go along and are moved by the Christmas Play, with each class having their own starring moment.  Fundraisers are held each term, this one was a sponsored walk.  The entire school participates.  They have field trips regularly and a whole school outing in the Summer.  No child misses out, unless the parent feels it is necessary.  How a school does this, when catering for such a wide range of Special Needs is, in my opinion, pretty amazing.

 

One of my favourite school events however is Harvest Festival.  I think because I used to enjoy it myself.  It was exciting to go out to a different venue and sing with the school and perform whatever our class was doing.  Each year the local church opens its doors for our children.  We are treated to readings, songs, dancing and a reminder that we really should be grateful for the abundance of food we have available to us.

 

I think it is one of those triggers that it really is Autumn and I have already posted about how much I love Autumn.  It is also beautiful to see all the pupils doing something that every other school does, no matter what their disability.  It is a heart warming sight of inclusiveness that I am blessed and thankful for witnessing.   

Special Awareness : I am grateful for...

Special Saturday is now hosted as and when you wish to link up to it now, rather than prompts coming on a Saturday.  Despite this, it's aim remains the same.  To raise awareness of the daily highs and lows of living with a special needs condition within your life.  Whether you are the person with special needs; the parent or carer of someone with special needs; the friend of someone with special needs or just had your life touched (and usually improved) by knowing someone with special needs.

The last prompt given by the administrators was :

I am grateful for ...

 

 

I was very excited to see this prompt because I like being able to sit and think about the good points on life.  It is very easy to see the negatives in things, especially when you have incidents occur like we did this week.  It is easy to let frustration drain you.  To make you question your faith in fairness.

I participate in a weekly blog hop called 'Reasons to be Cheerful' whereby you have the opportunity to share the things that have made you happy in the course of the week.  It is surprising what you can find - even in the crappiest of weeks.

So this is a good opportunity to do the same but on the subject of Special Needs.  Someone with no experience of having Special Needs in their life would probably wonder what on earth could make you happy about it.  So here is what I am grateful for...

* I am grateful, that my son, J1, who was born eight weeks before he should have been is here with us today.  I am grateful that we live in a day and age where science and technology was able to keep him alive in those first tentative days.  We didn't know in the first few weeks or even months that brain damage had occurred.  Everyday I wish it hadn't.  Especially knowing that it occurred in the last hour of the birth.  It's a tough pill to swallow.  We will never know what specifically caused it.  It could be one of many potential factors.  Apparently.  But if the choice was between having him with us, exactly as he is today or not at all I wouldn't change a God damn thing.

* I am grateful that we got a quick diagnosis.  Within weeks of him seeing the right consultant we had it confirmed he had the condition Quadriplegic Cerebral Palsy.  This made getting the right help for him; physiotherapy; occupational therapy; speech and language therapy; hydrotherapy easier.  I will not say easy, because nothing comes easy. But at least with an actual diagnosis, you have a hope in hell. 

 

* I am grateful that J1 can speak.  He didn't start to speak until he was five.  The most important part of this ability, apart from the wonder of here him saying 'Mum' for the first time, is that he can tell us if he is in pain and the generally where the pain is.  This is incredibly important, particularly since he has such problems with his hips. 

 

* I am grateful that despite his huge physical disabilities J1 is a very placid nature.  He does not have any behavioural problems.  Although J1 is physically demanding when it comes to caring for him as he must be hoisted whenever he needs moving; he can not sit unaided; he has to have extensive physiotherapy - he is not a challenging child.  He is very accepting of the fact that he must be hoisted; he must be tightly strapped into equipment; he must have the extensive physiotherapy.  Saying this, as I have mentioned in numerous previous posts, as he is getting older he is developing more sense of awareness of the things he can not do and this is beginning to cause a little frustration for him.  However, on the plus side of this the fact that he is developing the awareness in the first place if fantastic.  It is wonderful that he is becoming socially aware, and hope this means that he can start to join in some after school activities and gain some social independence.

 

* I am grateful for all the wonderful people I have met through J1.  I did not know that so many giving, kind, selfless people existed in the world.  I am always very wary of the fact that there are some awful, evil people in the world that pray on the vulnerable but am also now aware that there are many people out there who have the compassion to care for them as well as I can care for him.

 

* I am grateful that when fate decided that my child would have the special needs that he does, I had the character and strength to know that I would cope.  As a single mother some (brave) people asked if I would give him up for adoption.  They are not people I speak to anymore.  Anyone that would think a Mother would give her child up because they were not able-bodied, or had any kind of special need are not the sort of people that I wish to have in my armoury of friends.  I do not look at J1 and think he is my disabled son.  I look at J1 and think, he is my oldest son.    His disability isn't invisible.  It is there for the world to see, but in the world of my love for him, it doesn't exist at all.

 

If you have a post, comment, thought or anything related to Special Needs that you would like to share, link it with the Special Saturday facebook page and twitter @Specialsat #specialsaturday.

 

I am also linking this post to the Love That Max Special Needs blog hop.



Published in SEN Magazine

The article I wrote for SEN Magazine was published this month.  It was thrilling to see my name in print!

If you would like to read my article, the magazine just released it online.   It can be viewed here (even though they say 'daughters' diagnosis and it should be son in the link - it is correct in the magazine and online article) :

https://www.senmagazine.co.uk/articles/1020-a-mother-tells-how-she-received-her-daughter-s-cp-diagnosis-from-a-most-usual-source.html

Special Saturday : The Special Needs Part of Our Life

This weeks #Special Saturday theme is to just generally sum up what is going on in your own world this week.  This is a good time to think about this because it is the last week of J1's school year.  Just yesterday we went on a fantastic school trip to Colchester Zoo.

Colchester Zoo is very accessible for those with wheelchairs apart from a very few areas, which do have large, steep gradient hills to get up and down.  However because there was a lot of volunteers we managed to overcome these.  I would like to think about getting an annual pass for the Zoo next year, when J2 is three.  Therefore I think that we are going to have to have a meeting with our wheelchair clinic about the possibility of getting some sort of motorised help for the chair. 

This will also help with another problem we are now facing.  Although  we are extremely lucky to live by the sea, you can only access the lower sea promenade by significant hills.  I am no longer able to get J1 up and down these on my own.  To be honest even if both my mum and I push we struggle.  This is very frustrating for all concerned, especially with the Summer Holidays imminent.

I am very much hoping that we do not have obstacles put in our way when we make this request.  J1 has recently been weighed and measured (height) and he is on a par with an 11 year old.  J1 is actually eight.  Not being a particularly big person myself, it is hard to accept that I am unable to even take my son for a walk and ice cream along the sea wall by which we live.

As I mentioned, it is the end of the school year for J1.  It has been a very different year for him as he went into a new class.  We were worried about how he would cope.  However, after only a short few weeks he had settled in well.  The class has been good for J1 in a lot of ways.  It has really helped his character to build.  He is developing his own sense of humour and is no longer so timid of other mobile children his age.  Up to this point he would meltdown if another child his age even said 'Hello'.

J1 does require a vast quantity of physiotherapy everyday however and there has been a few issues regarding this throughout the year.  I think it is always something that I am going to have to keep a very close on eye and reiterate constantly to all those involved with his care.  J1 can not move his own limbs with any real control.  Thus we have to ensure that we do this for him.  Can you imagine being set in one position for any length of time.  Think about how many times you shift position on the sofa, or in the car or in bed.  Remember that discomfort you feel if you wake up after a long sleep and go to stretch your leg?  That is a constant threat for J1, moreso because of the metal plates he has in his hips.

Another challenge we are now starting for face as J1 is getting older is his awareness.  This is not a bad thing by any means, it means his comprehension abilities are developing which is fantastic.  But, the negative side to this is he is also becoming aware of all the things he can not do.  He no longer wants to walk to the park with his brother.  He doesn't want to go out in the garden when the other children play on the trampoline.  He doesn't want to sit and have a drink with mummy in the local indoor play area while all the other children run around screaming and having fun.  He doesn't want to sit and have an ice cream while everyone else goes on the rides at the pier.  Who can blame him?

Luckily we have found a brilliant centre, quite local, that has some sensory rooms that he can enjoy.  This is great for rainy days (and there are plenty of those at the moment).  But other little activities that up to last year we could just about do (a few rides on the pier, getting him in the small gap on the trampoline) are no longer a viable option.

Therefore, it's time to spend this week thinking outside of the box and doing some research for fun things we can do over the six weeks break.  We have got a 'wheelchair bike' demo in August, with the hope that we will be able to obtain one soon.  J1 keeps asking to go for a bike ride, and absolutely adored it when we hired one on our recent trip.  Hearing him giggle uncontrollably, like other children do in the park or on the rides or on the trampoline - priceless.

I am also looking into the possibility of getting a wheelchair swing for the garden.  He thoroughly enjoys the one at school and would love to be able to take him in the garden to join in, every single day that we possibly can.  He deserves that.

In summary a lot of development is happening in our Special Needs part of life.  We have lots of calls to make, research to do and options to look at as everyday our wonderful little boy 'Grows Up'.

Join in Special Saturday by linking up on Facebook, Tweeting using the #Special Saturday, writing posts / note / odes.  Anything you want to do to help raise awareness of living with Special Needs and how amazing, challenging and rewarding it is.

Special Saturday : Special Needs in my Life

Special Saturday is a great hashtag. It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs. As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.


This week the wonderful Special Saturday prompt was to start your thoughts with

'Sharing my life with a person with Special Needs has...'

These are my thoughts:

Sharing my life with a person with Special Needs has rocked my world.  In a multitude of ways.

Firstly it rocked my world by oblitarating life as I knew it.  Kind of in the way that Superman hurls his enemies into space to float around in a timeless, impossible void.   I couldn't grasp the concept that my baby had suffered brain damage.  But there it was.  Quite literally in black and white on the scan.  A mark the size and shape of a thumb print on the left hand side of the brain.

Then my world was rocked back to shape by seeing the amazing miracles and achievements that my little boy was making everyday.  Will he walk?  No.  Will he sit?  No.  But he can tuck away a three course meal with pleasure and enjoyment and that is sadly something so many of the other wonderful Special Needs children we know can not do.  I learnt to be thankful for all the things he could do rather than resent all the things he couldn't.

Sometimes my world gets rocked and crushes me down.  Like today.  Whilst having a stretch out on his bed, from which he can see into the garden he said to me 'I can hear my brother, what is he doing?'  To which I replied 'He is on the trampoline.'.  He sighed and said 'I can hear him laughing.  He is having fun and giggling.  I can't do that.'  C.R.U.S.H.E.D.

Then there are days when my world rocks me into action.  I get up and think today I am going to get somewhere with XYZ equipment issue / person to chase / quote to get / charity to approach / school meeting.  I call and pester.  I email and leave messages.  I write letters and research things, until I feel I have made some small step forward. No matter how small it is.

There are also the days to recount when I have met some of the most wonderful people ever.  People who I really do not think I would have met had it not been for my son with Special Needs being in our life.  They are warm, loving, enthusiatic, friendly, open minded, strong and inspiring.  They are the teachers, teaching assistants, volunteers, helpers, carers, who help to look after my son when I am not there.  They are a special breed of human.  A wonderful one.  Their kindness rocks my world.

Sharing my life with someone with Special Needs has, I think made me a better person.  I used to be scared of and ignorant to disability.  I had never had any experiences with anyone who had disabilities or serious illness.  Now I understand that you smile and say hello and chat to that person in a wheelchair, or using crutches and the person standing by their side supporting them.  You chat to them as you would absolutely anyone else.  You don't look past them and make them invisible.  You ask about their disability and take an interest in that person. 

My sons Special Needs are great and varied.  They have caused issues to arise that I never would have dreamt would be something we would deal with under the umbrella of Cerebral Palsy.  But on the other side of the coin, his Special Needs have made our family closer, united, stronger.  Typically I would say we are a family who would usually take a backseat.  Just go with the flow.  Take what is said as what is right. 

You can not take that type of stand for your child with Special Needs.  You have to be strong.  You have to question.  You have to argue for what you think is right for your child and not just take the word of a professional, because chances are they will have only spent mere minutes (sometimes seconds) reviewing your child.  You know every inch of them.  You have to get your child the voice they can not yell with.

Sometimes I think I do a wonderful job, as a Special Needs mum.  Sometimes I think I do not fight hard enough for him.  We do not have every piece of equipment he probably needs.  We do not have some of the luxury items he could have to help enhance his life.  Sometimes it is hard, to get through everyday and on top of that find all the energy needed to do that extra fighting.  Other days it isn't hard.  Other days it is wonderful and I realise that sharing my life with a person with Special Needs has opened my eyes.

Special Saturday : Latest Achievement

Special Saturday is a great hashtag.  It encourages everyone with whom Special Needs features in their lives, to write about it, status check it, tweet about it and link up in order to try and raise awareness of living with Special Needs.  As you know I am always interested in any ways and means of raising awareness for this very reason (hence why I started The Disability Diaries) so I will be joining in this fantastic movement.

This weeks Special Saturday theme is 'Latest Achievement'.  I mention frequently that I am amazed and astounded at what J1 achieves on a daily basis, be it an attempt at rolling, or getting him to do just one extra movement during physio, reaching and pincer holding something or counting to 5.  He does so much that fills me with pride, that it is difficult to think of one thing to highlight.

However, I have got to say that this week, with it being half term, and obviously getting much more one to one time with him, he has opened my eyes to how much more he is comprehending.  A fabulous example to give of this is the 'Days of the Week'.  For some time now, thanks to his wonderful school and teachers, he has been able to recite the days of the week.  It has been in a parrot like fashion and this on its own has been pleasing. 

But, in the last few days we have had very clear and concise (again another improvement that I could only have dreamt about a few years ago) conversations about what is happening on particular days of the week.  In addition to this he has quoted the correct days when asked questions; that is - what was yesterday; what is today; what day will it be tomorrow. 

This extra ability to demonstrate real comprehension of such things is something, I have to admit, I did not think would ever happen.  He is starting to show real development in his mental capabilities that is just stunning to me.  Some of those things that I grieved he might never be able to do are now becoming a reality and other realms of possibility are starting to open up and become reachable.

I guess the moral of this story is, never underestimate what your child can do.

#specialsaturday.

The Disability Diaries (The Life of J1) : Dark Days - The Big Day : Marathon 2006

Final part in a series of 'Dark Days' posts for Disability Diaries Feature. 

View parts one, two, three.

Beating depression is a highly personal thing.  Unless your mind, your brain, your thoughts want to banish it there is nothing anyone else can do, or say to make any difference.  If you are lucky enough to dispatch it out into the great unknown, that does not mean that it is going to stay floating out in space leaving you in peace for the rest of your days. 

For me, having suffered with depression for a short period in my life - in reaction to discovering my baby boy had suffered brain damage, with the consequence being he is afflicted with the condition Cerebral Palsy - I feel relatively safe that I can keep depression at bay.  I think it would take something pretty huge and grandscale, like what happened to J1 to take me back to that stage.

But I am mindful.  I was obviously susceptible to a degree, otherwise I would have made it through that period without anti-depressants.  To that end I respect, more than ever, the power of the mind and the need to keep it healthy, as much as the need to stay physically fit in order to be able to care for J1.

I was helped out of my personal 'black hole' with the help of science, but also with the suggestion of some good old fashioned 'Health and Fitness'.  From this suggestion I fell in love with running for the first time and decided that I needed to face a challenge.  A real challenge that could try and give me some tiny, small insight into what sort of strength J1 would need to have on a day to day basis.

I applied for a Gold Bond place with a charity to run the London Marathon 2006 and was successful.  After months of training, that in my opinion now should have been much more dedicated, we found ourselves at that wonderful weekend in April.  The roads of London were closed off.  The Mall was adorned with Union Jack flags.  Hotels were booked up with crazy Marathon wannabes.

We decided to make a family weekend of it.  My parents booked us a family room at a hotel for three nights and on the Friday morning, packed like loaded donkeys we took J1 on his first train journey to London.  It was exciting from the start.  We had a packed weekend, starting with going to the Expo to register at the Excel centre. 

It was wonderful.  A world of running and adrenaline surrounded me as I went from one stall to another, ate pasta and picked up all of my equipment needed for The Big Day.  A chip for my shoe.  A running number.  A bag for all of my personal belongings with '2006 London Marathon' emblazoned on it. 

On Saturday we were invited to a Pasta Party with the charity.  It was a fantastic boost as I got to meet other runners and hear their own personal stories of what had brought them to this point.  J1 got an amazing reception and many attendees said meeting him reminded them even more it had been worth all the effort of training.  It was a beautiful afternoon so we took J1 for his first ever visit to Hyde Park and enjoyed the City of London.

Out of everything, the thing I was most worried about was making my way to the starting point for the Marathon.  I have zero sense of direction.  I needn't have worried.  As I left the hotel I found myself constantly surrounded by other running attired people and at that time of the morning on a Sunday very few others.  The tubes were opened freely for travel by runners as part of the Marathon and there was a wonderful, excited buzz on the journey. 

Once off of the tube there was a fair walk to the start.  It was a unique sight seeing all the different running vests bobbing along.  By some miracle, both colleagues who I knew were also running I bumped into on the walk and it was nice to see a familiar face.  It helped take some of the pre-start anxiety away. 

I decided to be sensible and use the bathrooms before I joined the masses to get through the start gate.  That is quite a feat in itself.  There are plenty of toilets, but the queues for them are massive.  When I see the overhead shot on the TV now it always makes me smile.  Again, everyone just found it an opportunity to chat to others.  By the time I got through that queue the bulk of people had made their way through the start, so I didn't have to wait long before the big starting arch was in my vision.

With a lurge in my stomach, I checked I had everything where I needed it.  Felt that the chip on my trainer was secure for the millionth time.  Started, stopped and cleared my own stop watch and gamely set off on my Marathon Quest 2006.

It was still super busy at the start so I couldn't get running until about a mile in, and the excitement of it all; the crowds rows and rows deep full of cheer and support; the television cameras; the bunting and advertising meant I was at Cutty Sark before I realised it.  The next marker was Tower Bridge.  Half way.  They register your time here on your chip so all I could hear was 'beep, beep, beep, beep' of the runners times being captured, a memory stored forever.  My next marker was the Charity Cheering point at mile 18.  I was starting to feel it by the time I reached this point and was glad to see my family and J1, wearing his 'Run Mummy Run' T.Shirt. 

I took the opportunity to change my shirt and pick up extra sweets here.  It had rained non stop from the start and I was saturated and chilly.  I don't know if the stop was the trigger to hitting my wall, but at mile 19 I walloped into it with force.  The next four miles were bleak.  It is a pretty dull part of the race with scarce crowd support (it might have been due to the torrential rain which had by now set in of course). I was back to be absolutely soaked to the skin. I was sick of my sweets and Kendal Mint cake.  I had had enough and wanted to give up.  In the darkness of one of the tunnels I stopped.  I wanted to sit down and never run another step again.  I wanted to get a lift to the end. 

It was here I realised the importance of having a strong mind when doing a distance like the Marathon.  I had ignored this element of it and now I was suffering.  I had to go back to my key thoughts of 'I have the ability to do this run or walk, my child does not.' 

I plopped a tear as I realised that I had no clue where I was.  No phone signal to get some moral support and the only thing I could do was carry on.  After this low the rain eased up a little.  Then I saw it, the magical sign for 23 miles.  My final marker before the end.  I had trained my mind to repeat the following mantra on long runs - 'Only three short miles to go.'  As I crept out onto Embankment the support from the crowd lifted again to the heights it had been at the start.  I decided to start jogging again.

Three miles, at 23 miles is not short.  But as the two mile marker came into view I couldn't help feeling a buzz.  I was looking forward to running up the Mall to the Marathon music and to meeting my family at the end.  Just as I was coming into the Mall I heard my name being screamed.  As I looked I saw my family had managed to get to the front. They had lifted J1 out of the warmth and dry of his buggy and was waving his arms around.  He was in hysterics  and loving it and this pushed me to sprint the final 'point two' miles. 

Going over the finish line was immense.  I donned my medal and spotted a photographer and thought 'I have to have this picture'.  Lovely volunteers were wrapping me in foil and giving me drinks and asking how I felt at completing the Marathon?  I didn't know.  I felt exhausted and elated but it hadn't sunk in that I had actually completed that challenge I set myself the October before. 

It didn't sink in for a while either.  Everyone else who had supported me were more excited than I was.  It felt great to get my photos from the race arrive, and to see my name in the list of finishers in the newspaper.  My work did a follow up article about how I did.  Nowadays it is something I look back and think wow, what an amazing experience - how did I do that?

After the Marathon I came off of the anti-depressants.  I went back to my proper work hours and our life had truly started to have routine, that included all the world of disability and we were coping.  As I say, the sadness of it doesn't go away completely.  But I had made my way through the grieving process and had finally got to acceptance.  That had taken longer than 26.2miles and had been far tougher than the Marathon.