teddington trust

Staying out of the shade…


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Every Child Matters?

It`s fair to say this month has been a difficult and frustrating one for us.

After two years of deliberation and soul searching we made the VERY difficult decision to rehome our family dog, 8 year old Welsh Terrier, Macy. This was particularly difficult for Andrew and I as we have had her since 8 weeks old and she has been with us since our life before children!

Unfortunately she has always been sensitive and had some issues with allergies which until 2 years ago we were able to manage with diet alone. However since Eddison`s diagnosis and our `new life` we have had to make lots of changes to our home environment and lifestyle which sadly have been detrimental to Macy. It seems undeniable (and we have tried), that the indoor environment which is now totally sealed (no open windows and doors) has elevated the allergen level in our house to a degree that she can no longer tolerate and her allergies flared horrendously. After 2 years of painful ears, nearing surgery at one point, various courses of steroids which resulted in her going bald, it seemed that the only option was to put her on lifetime medication, the side effects of which are unknown for long-term use as it is a new trial drug. This combined with the fact that we weren’t able to offer her anywhere enough exercise due to our limited time outside, and coupled with the logistical nightmare of letting her in and outside and managing the open door now that Eddison is fully mobile, really forced our hand to make the only decision that is right for her, but it is an understatement to say that it was done for a very, very, heavy heart!

We are very thankful to friends who have offered her a place in their home, and all being well she will settled within their family and enjoy the benefits of a more free, dog conducive way of living, but she will be deeply missed!

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Then, as always, on top of whatever emotional issues we work through as a family there is, it seems, always a backdrop of unnecessary stress that could be avoided and taken from us. We seem to be constantly hitting barriers and finding that every step along the way, we need to fight decisions and constantly explain and justify to people who have absolutely no concept of how all consuming adapting to and committing to a totally UV free safe lifestyle really is for Eddison and all of us.

We always actively promote the positives to our life, but that does not take away from the fact that it is a very serious, life restrictive, life limiting and life threatening condition and not a single daily decision we make in this household is void of special consideration or measure; and so, to have to occupy our mind with every detail with regard his nursery, schooling, leisure, play, support, financial implications, peoples prejudice and ignorance is nothing short of exhausting and beyond frustrating at times!

You can imagine my frustration this week alone, when we were advised that despite extensive consultant and professional opinion and intrusive medical and psychological assessment for Eddison that the `powers that be` determined that Eddison only warrants 1 ½ days of safe schooling, the rest of the time presumably our then 4 year old will be expected to safeguard himself from the ever present risk of exposure to UV, or must we home school him and exclude him from participating in his right to schooling alongside his peers!?!

With regard to any disability support, following a `thorough review of his needs` including a telephone conversation with myself, somebody deems appropriate to write to us to advise us, and I quote “Although Eddison does need some extra attention during the day he does not need frequent or continual supervision throughout the day which is substantially more than other children of the same age”!!

Oh how good to know! Perhaps they might see it a little differently if that really understood the responsibility of caring for a patient of XP!!!

They also advised that as they are “unable to take weather conditions” into account when assessing people’s needs he does not meet the criteria for support and apparently he is not deemed to be at any risk when out and about!

Right ok! – so they deem that the constant risk of aggressive skin cancer, the threat of heat stroke in his protective clothing, the way he fatigues easily, his limited vision and hearing when wearing his hat are all minor incidentals and nothing outside of the normal range for a typical 3 year old! 

Wouldn’t it be nice if a little understanding and compassion, let alone flexibility from the various agencies could be applied, so parents of special needs children could concentrate on just that! Being the best parents they can; giving love, security, opportunity and nurture and not having to battle and fight for everything from the ordinary such as clothing and education to the provision for additional support to meet their complex needs and everything in between!!

Big sigh, draw breath and so it goes on!!!

Not wanting to end on a down note, so here is a picture of our cheeky chops enjoying some of this lovely cooler Autumn weather to cheer us all up…

And for us and every other parent who finds themselves bogged down in paperwork, bureaucracy and ignorance this is the single fact that keeps us all going at all times – as the UK government initiative itself professes; YES, “EVERY CHILD MATTERS”, and that INCLUDES MINE!!!

Cheeky chops

Note: A big thank you to my Mum and Dad who have timed their visit to perfection and given us a wonderful two weeks together, giving us and the boys a much needed distraction from the departure of Macy and ever constant support and encouragement through the challenging times – THANK YOU, LOVE YOU x x x

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The True Reality of UV!

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One of the most frequent questions we get asked from people who enquire when they meet Eddison is “so what would actually happen if he was exposed to UV”

I understand that because the consequences aren`t visible its difficult for people to grasp what it means and what the real risk is to children and adults like Eddison with XP, but living with XP means living with the constant anxiety of maintaining a defense against daylight and artificial sources of Ultra-violet light at all times.

It means on a daily basis having to make judgments on the safety of activities, travel, etc but also on the minutia of basic living, which means making a judgement on every item of clothing worn when outside of their safe space.

Is this t-shirt with his jumper ok?

What if he gets hot and wants to take that jumper off?

Are these socks ok with these shoes and this length of trouser?

What if he takes his shoes off, are the socks ok?

If these gloves get wet is the UV protection still in-tact?;

and so it goes on…

 

Then there is the issue of deterioration, an item of clothing that was once perfect, may after washing, or with wear lose some of its integrity and at what point does that occur?

So you see it isn’t as simple as it seems, “cover every millimetre of skin” (not that this is simple by any standard either). Unbelievable to most; patients like Eddison can and do actually burn through clothes! We found this out first hand before Eddison was diagnosed when he repeatedly burned through his cotton long sleeved tops.

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Eddison before diagnosis; Burnt through his clothing!

This has more recently been brought home to us again when an online friend, James; from the XP community posted photos of recent burns he sustained whilst wearing lined woollen slippers!

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1) Initial Burn; 2) 10 Days Later… 3) Two Weeks Later

 

These pictures are the horrific burns he acquired through these slippers, and you will note that with no skin repair mechanism after 2 full weeks from the incident James is still suffering from terrible, angry burns.

James and his family have dealt with his condition for over 20 years which shows how relentless the daily challenge is to keep safe and protected.

Thank you so much to Cathy and James Coleman for allowing us to share these images with our followers, and for their advice and inspiration x x

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Nursery blues; for Mummy that is!

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After a day out on the Teddington Trust stall it`s back home to get organised for Eddison returning to Nursery tomorrow after the summer break.

So like Mums the land over I am busy labeling uniform and kit, making up his pack lunch and getting his bits and bobs looked out, but I also have some other bits to do.

1.  His UV clothing has all been washed and treated (with UV wash in treatment);

2.  A new Visor has been cut and fixed to his hat;

3.  His`Eddison` bag had to be sorted and packed, which includes just a few little essential…

  •      spare hat;
  •      spare film;
  •      spare gloves
  •      change of clothes;
  •      UV poncho; (in case of an emergency evacuation without time to dress in his protective clothing)
  •      Urine bottle (in case he had to go to the toilet outside or in unsafe premises in event of evacuation)
  •      Medical Letter with overview of condition and Consultant details (in case he needed medical treatment);
  •      Bag with sun cream, lip block, hair band (to stop the cream getting in his hair);
  •      Anti-fog cleaning solution and cloth (to clean visor);
  •      Sunglasses; and
  •      UV meter.

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I am absolutely thrilled he will be trotting off to nursery again tomorrow, as he just LOVES it and had a wonderful two terms there pre-summer, and after 6 weeks at home it will be wonderful for him to get back to is term time activities and his 3 days at nursery, but on the other hand,  I suddenly feel as nervous as I did on his first day back in April at the thought of handing over his care to others again!

Its difficult for anyone to wave off their precious child to nursery or school, but for us the anxiety is heightened by the constant fear of risks to him while not in our care. We are blessed he has such a wonderful supporting nursery and staff and the very special Support Worker Sue who looks after Eddison while there, but it is still very hard to let go and relinquish his care for those few hours.

Mixed feelings at bedtime for Mummy tonight!!

 

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It Was The DAWN of a New Era

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In early spring 2013 we met someone who was to become a significant presence in Eddison (and our lives) beyond all expectation, and as she came into our house like a whirlwind of energy and fun we had no idea what we all had in store…

But to take you back a step before that, we need to tell you about another significant presence in our family journey; Denise Doms. About 10 months after Eddison`s diagnosis we contacted our local Primary School to initiate dialogue with them to find out what hurdles we were going to have to jump to secure Eddison a placement in mainstream school. After a very productive initial meeting they gave us several names of people to contact regarding helping us work through this minefield. And after a few calls and it seems discussion behind the scenes about where Eddison fitted in the system, we got a call from Denise, shortly followed by a home visit.

Used to helping families and children with complex physical needs, it seemed that Denise was the woman for the job, and was she ever!!! She seemed to immediately understand the nature of our restrictions, the likely obstacles and our anxieties, and she immediately sprang into action. Among many things Denise has done for us; right at the outset she was determined that Eddison should receive Home Education Portage Visits a view that was not widely shared within the Council because, as is a pretty standard response, “he didn’t meet the standard criteria”. However she stood her ground and eventually won them over and before long we would find out just what this Portage Service would mean for Eddison.

At this time, Eddison was just over two and we had, had to stop most of his previous play groups and clubs as we now knew them to be unsafe. Raife had been born and we were effectively housebound with very few safe venues that we were aware of and Eddison wasn’t attending any form of nursery. We were faced with the challenge of exposing him to the simple sensory side of growing up and exploring, knowing that he couldn’t (in daylight) feel textures outside (due to his gloves), smell flowers, get his hands dirty, just enjoy the simple pleasures. Also, with no soft play centers safe, and at that time no swimming, parks etc, ensuring that his gross motor skills developed in line with his peers was a massive anxiety for us.

And so in came Dawn Hurd, our Portage Visitor, or as we in our family call her LADY Dawn, which Eddison fixed on from first meeting her and has called her ever since! And without sounding too dramatic, it in every sense was the DAWN of a new era for Eddison and us as a family!

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 It started as fortnightly visits to our home where each session was a themed range of activities. Beach, Jungle you name it. Armed with sand, shells, bark, grass, fur etc she brought the outside in and encouraged him to immerse himself into these messy, mucky sensory delights. In turn he would show her things we had gathered in his own Nature Box, cones, feather, stones etc. Threaded through the sessions was of course some education work too, and Eddison very quickly learned that if he did them super fast he had more time for the mucky business of fun. Each week Lady Dawn left him with a selection of toys, tunnels, balls etc to keep until the following session, which he just loved.

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As a parent it was an absolute joy to watch, as they giggled, cuddled, played and had endless fun, and he immediately bonded with her, and we watched his confidence grow so much in those early months. Often it was an emotional experience for us, watching him get so much pleasure from the very simple experience of putting his feet in sand or mud.

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 As we started to approach out first summer with Lady Dawn we were all starting to think “how on earth were we going to keep him fit and stimulated over the summer months”, but Lady Dawn had a plan and a wonderful one at that.  We checked out the local children’s hub which has a small soft play room, sensory room and large open plan space and it was all safe (when UV lights were off, and lights dimmed etc). And so every week over the summer Eddison and Raife went along for 2 hours of mayhem. Cycling, scooters, running races, sand trays, paint, gloopy, sticky fun…even pretend snow one week (although never to be repeated on account of the mess!). Followed by jumping, climbing and diving around in the soft play and exploration of the sensory room! And to make it extra special Lady Dawn allowed Eddison to bring his best friend Finlay with him, which meant they could enjoy this together.

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After summer the usual sessions returned, some at home, some at the centre and then as Eddison started nursery it was nearly time to come to an end, but not before one last summer of fun for the boys!

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I cannot tell you what these weekly session have meant to the boys this year. They have looked forward to them all week and again been able to enjoy them with Finlay and on occasion other friends.

This summer Lady Dawn has provided Eddison with the most incredible fun, with fun themed playdates, including every little boys dream things; DINOSAURS, KNIGHTS & DRAGONS, OUTER SPACE and THE WILD WEST. They have hunted for fossils, made moon rocks, knights shields and sheriff badges, painted castles, buffalo, dragons and aliens. They have run, climbed rolled and laughed and squealed with sheer joy and excitement.

Dinosaur Tedphoto 1 (7)photo 2 (6)Wildwest

It is impossible to put into words what this has given Eddison and Raife for that matter, but to name a few, he experienced these precious firsts with Lady Dawn; he made his first sand castle, first mud pie, first snow experience. He has also benefited enormously from the one to one which has built his confidence and trust in others at a time when he was only surrounded by family and close friends in our own home.

But as our last ever Lady Dawn session came to an end last week, what it has meant to Eddison was written all over his face. After trying every trick he could to stall the inevitable for as long as possible and delay the goodbye, when the time came, he simply couldn’t and wouldn’t say goodbye.

And so after a very sad Eddison left and returned home in the car truly blue and emotional he declared when we got home “I am very sad about that” and when I asked if he will miss her, he nodded and said “shall we have her over for afternoon tea? SOON!!!”

Thank you LADY DAWN, for everything!

You were the perfect one in a million LADY for our one in a million boy and we will miss you lots!

 LD

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Its the Season…

The significance of today wont have passed by any family with XP, because it means one thing! We have survived the summer and with a change of season; Autumn means the cooler weather is on it`s way!!

For us it also means that there is only one week until all of the boys term time activities and Eddison`s nursery starts again. Which means after 6 weeks of high temperatures keeping us in and none of our regular indoor activities running, they will soon be back at RugbyTots, Athletics, Swimming and more.

All things considered we have faired pretty well over these difficult months, thanks to implementation of our “Summer Survival Strategy” to keep the boys active and us all sane!

So here is how we have done it:

1. We booked out our local village hall (which is treated with UV blocking film) every week so that the boys and some of their friends could have  a couple of hours running about, playing soft ball football and riding their bikes and cars;

2. Family staggered visits through August to help keep us occupied indoors and give us all some company, and regular visits from friends which was a blessing and lots of fun was had by all (including some very special late night after dark treats);

3. We had a weekly themed play session with the wonderful `Lady Dawn` which included, Dinosaur Week, Outer Space, Knights and Dragons and the Wild West! (more on that to follow soon on our next blog!);

4. Regular trips to the cinema and swimming; and

5. LOTS and LOTS and LOTS of very late night after dark trips, to the Park, Beach, and just out right fun in the garden.

And above all, what as made this tolerable has been being in the VERY privileged position of being able to enjoy Eddison`s Indoor Garden this summer. This area has allowed us to swing, slide, hop, bounce, picnic, camp out and just lay looking up at the clouds when the temperature has kept us in, and it is beyond words how much this has helped us through!

With a week to go before we get back out and about we are just starting to show signs of cabin fever as we all get a bit grumpy, and I can see the boys appetite is reduced and sleep more disturbed. I have even found myself parking as far as I can from the supermarket, just to get the walk to stretch my own legs!

We have packed in every last bit of outside time we can over the summer, and have managed park trips, afternoons in the paddling pool, cycling, castle visits and trips to the farm; but even with all that, I think we can probably say that our time outside during the day in the last 2 months probably hasn’t exceeded 48 hours of time, so its fair to say that despite having more than survived and having had a wonderful summer we are all very much looking forward to AUTUMN x x

Ted in Grass

This song has been our favourite family car song over the summer and seems so appropriate “there`s a reason for the warm sweet nights, there`s a reason for the candle light” ….Tis true…”Its the season”

Hope you all enjoy!