teddington trust

Staying out of the shade…

Every Child Matters?

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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!

 Macymoo

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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