Are We Nearly there yet? – The long wait – for a guide dog!

Anyone who is a parent will be familiar with question / whine.

“Are we Nearly There Yet?”

Well, in our house the question for the last year asked, almost on a daily basis by B is:

“Daddy When are you getting your Guide Dog?”

  On Friday he seemed to get one step closer to the end of this, seemingly endless, wait:

D has been ‘on the waiting list’ for a guide dog for over 2 and a half years.  When I say ‘on the waiting list’ I mean it is nearly 2 and a half years since he had a visit from the assessor who filled in all the forms and officially put his name on ‘the list’.  He actually made the first enquiry a few months before that.

The decision to ask for a guide dog was not an easy one for D.  He has always been registered blind.  For as long as I have known him  (17 years…..eeeek – I can’t believe it’s that long!) he has had no sight at all.  He is one of the small minority of ‘blind’ people who have absolutely no vision, not even light perception.

D is incredibly independent, he works in the City of London, uses the underground system and escalators every day (in rush hour); we live very busy lives and always seem to have too much to do, with 2 children, general work stuff, looking after a house, garden, 2 cats and all the associated crap that goes with appointments and form filling that us disabled people have to manage on top of the ordinary hassles of life.

To cut a long story short, D had always managed very well with his trusty long cane.  He couldn’t see the point of getting a dog.  Until recently it wasn’t possible to take a guide dog on an escalator, which would mean D would have had to find a different, and probably longer, route to work or carry the dog up and down the escalators.  As you can imagine, carrying a potentially wet and definitely hairy, dog whilst dressed in a suit ready for work, wasn’t particularly practical.  He also felt he, and we as a family, could do without yet another commitment and variable to add to our already. long list of things to do and things to think about.

This situation would probably have continued indefinitely, but for about 3 things.

Over the last few years D has increasingly suffered from chocolate poisining  (whoops – don’t walk away from PC while 9 yo’s around) indigestion.  Not just a little bit every now and again, but quite chronic pain and discomfort.  He has had various medical tests that have revealed that there is very little physical reason for this.  We have quite a healthy balanced diet, so it is unlikely to be caused by consuming an excess of rich, fatty and spicy foods.  The only other explanation which has been suggested as a possible cause is stress.   Although there are many things in life which may cause stress, negotiating the busy streets of London and the underground in rush hour with no sight and only a long cane for assistance has to rank up there as a pretty big one!

D didn’t openly accept that he felt stressed by finding his way about without a dog, but he did begin to discuss the advantages and disadvantages of having a dog with friends who are long term guide dog owners and with my Dad who has used a dog for over 40 years.  When others shared their stories of how much easier they found it to get around once they got used to working with a dog and described how they didn’t realise how hard it had been without until they didn’t have to manage like that anymore D began to consider it might be worth investigating.

However, the issue of the escalators and the extra commitment still remained.  By coincidence, as we started to look into the idea of D getting a dog more seriously we learned that the Guide Dog Association were looking into ways of training dogs to use escalators safely, so this became less of a concern.

In terms of the extra commitment we agreed that if the end result was that a dog would make D’s life much easier and less stressful that we could and would accommodate the extra commitment.  It is like anything in life, you wiegh up the pros and cons and we decided that the only real way of doing this would be to give it a go, so D was nearly convinced that it would be worth a try, but wasn’t quite ready to pick up the phone.  It was always a case of ‘I’m alright really’.  I suppose, it’s human nature, fear of the unknown.  Its much easier to continue with the status quo than to take the first step to a potentially life changing decision.

The event that eventually made him make that phone call was when D gave himself (and me) a huge scare.  I will not set out the details here as there are some people very close to us who don’t know about it.  I write this blog as anonymously as possible, but inevitably some of my friends do read it and know us and the children and I wouldn’t want to put anyone in a position of possibly revealing something that we would rather keep to ourselves and certain members of our very close family.

On that day D came home with a few bruises, some dirty clothes and feeling very shaken.  Anyone who knows him will know that it takes A LOT to shake or worry D.  However a few centimentres that day could have resulted in a very different outcome.

At that point even D was convinced that may be a guide dog would be worth a try.  We are pretty certain that there is no way that particular incident would have happened if D had been working a dog. So the call was made.  As I said at the beginning of this post that call was made over two and a half years ago.  We waited a couple of months for the visit from the assessor who came to fill in the forms and to assess D’s mobility skills.  She explained that there was a waiting list of 18 months to 2 years.  We were fine with this as D wanted time to get used to the idea.

At this point we made the decision not to tell the children.  B loves animals, but finds it difficult to understand timescales without a definite end date, so we decided we would wait until we knew much more in terms of the detail of when D would get the dog and what sort of dog it would be etc.  A year went by and we had heard nothing.  D made ocassional phone calls and was assured that he was on the list, then last summer he received a call informing him that he was nearing the top of the waiting list and he was invited to attend  a further assessment day to practice working with some dogs in order to help the trainers to find the right dog for his needs.  On that day he was told that it may be 4 to 5 months before he would be allocated a dog.  At that point we decided to tell the children.  We thought that there wasn’t much longer to wait and they had been asking questions about where Daddy had been and why he hadn’t been at work.  We don’t tell lies to our children and by then it didn’t seem so necessary to avoid the truth.

Well you can imagine the questions:

When are you getting the dog Daddy?
When will you find out when the dog is coming Daddy?
Have they told you when the dog is coming Daddy?
Do you know when you are getting your dog Daddy?
What dog are you getting Daddy?
How many months until you get your dog Daddy?
Have you heard about the dog yet Daddy?

We have explained to both children that we don’t know an exact date and that Daddy has been told it would be a few months, but that he is near the top of the list.  We have also told them that as soon as Daddy hears for definite about a dog we will tell them.  This uncertainty still causes some anxiety for B, not necessarily in a bad way as he loves dogs, but he finds it very hard not knowing exactly when it will happen.  He asks probably 3 or 4 times a week and it is always the same questions, to which we always answer with the same ‘we don’t know yet’ and ‘we will tell you when we do know anything’.  That is all we can do until we know anything for certain.

So, it is now nearly another year later and still no dog.  About a moth ago D got a call to say that his case had been moved to a new team of trainers and he was now their first priority with the exception of anyone who may be an existing guide dog owner who’s dog needs to be replaced unexpectedly.  However they explained that they didn’t have any suitable dogs in training at the moment, so it would be at least another 3 – 4 months.  The waiting just seems to go on for ever.

So, D was surprised on Friday to get a phone call saying that they had a dog available that might be suitable.  Great, at last.  The trainer went on to explain that the dog was a good worker, it is a lovely dog, the only slight downside was that the dog doesn’t like escalators.

What….??? One of the key issues for D about influencing the decision to get a dog was that it needs to be able to work on escalators.  They know this.  It was part of the assessment.  Why on earth are they offering him a dog that can’t work on escalators???

So, after thinking we were nearly there.  We nearly have a date, we can start to make some definite plans like where to set up a ‘spending area’ etc.  Like actually be able to answer B’s questions… D had to say ‘No thank you’.

It’s just soooo frustrating, the waiting and having to try and explain it to B.  He is getting increasingly anxious.  A year ago we told him it would be a few months and here we are nearly a year later!  I’m glad we didn’t tell them at the beginning of the process!  The latest news is that is another batch of dogs being trained.  If one of those is a possible match it may be September.  That will be nearly 3 years…..!   And for those 3 years I have had to live every day with the fear that D will make the same mistake he made all that time ago and if there is a next time he might not be so lucky with those few centimetres!!!

I will keep you updated, when we have any further news, but please don’t hold your breath!

If you would like to find out more about Guide Dogs for the Blind in the UK please visit their website by clicking here.

Thanks for reading.  xx

Advertisements

About Violets Diary

Visually impaired Mum, with VI hubby, 2 disabled children. Disability campaigner, novice blogger and tweeter. Trying to put the world to rights and share our journey and positive stories. https://violetsdiary.wordpress.com
This entry was posted in Aspergers, disability, family, visual impairment and tagged , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

12 Responses to Are We Nearly there yet? – The long wait – for a guide dog!

  1. Missus Tribble says:

    That is so rubbish. Do the beurocrats NEVER listen?

    • yes, but in this case its more complicated cos guide dogs are a charity so there is no statutory right to one & they can only train as many dogs as there are with the trainers they have within given resourses, But nevertheless when you make a decision to do something and then it takes soooo long it’s so frustrating. I don’t think many people realise how it all works. Thanks for reading x

      • Missus Tribble says:

        To be honest I don’t know how it all works either – and I probably ought to find out in case I ever need a seizure alert dog. I know that you don’t get to choose the breed or anything like that, but I would have thought that something as important as “needs to be able to work on escalators” would be taken into consideration before offering an unsuitable animal.

        I think I need to head over to Wiki 🙂

      • Tbh we were a bit surprised at the offer of a dog that couldn’t do escalators

      • WordsFallFromMyEyes says:

        I definitely did not realise how it all works. I wonder if it’s the same in Australia. I NEVER thought guide dogs were a charity, never. God, they are a blessed animal.

        Actually, I never even THOUGHT where they came from. I know that people have them as puppies “adopt” them a while, and then they go into training, but I just believed that guide dogs, well, you go blind, you get a dog. Had no idea.

        This was a great post.

        Noeleen

      • I’m glad you found it informative. I don’t know how it works in Australia, but I’m guessing that its probably similar to the UK. Because it’s all charity funded that’s why it sounds so ungrateful to complain and make a fuss when it takes this long, but it is really hard on people to have to wait such a long time. Thanks for stopping by and commenting

  2. Rebecca Mitchell says:

    Waiting lists, waiting lists – two words imprinted on our brains!! BTW for me, going on the London Tube escalators is sheer bravery for anyone as I have to admit to a phobia of them that is preventing me from travelling around London when I come to visit my brother. Last time I went on one of the big ones was for my sister-in-laws hen-do and I embarrassed myself at 41 by clinging onto my Mum’s coat and saying ‘Are we nearly at the top yet’ repeatedly whilst sweating, trembling, gripping onto the hand rest as though my life depended on it. I hope your wait isn’t too much longer. xx

    • Funny the things that cause irrational phobias isn’t it? I have to confess to sometimes having a bit of vertigo when going down the long ones, but then I tend to hold on and close my eyes. For us living in London and having the underground and all the other public transport is absolutely fab. I hope we don’t have to wait too much longer either. x

  3. It does seem like an awful long time to it – I have my son with aspergers on a waiting list for a dog, but that is a just in case, I’m not even sure he’ll need one, but he shouldn’t have to wait as long, hope you get some good news soon x

    • thanks, I guess it takes so long because there is only a limited supply of dogs and people to train them. and if people who already use a dog need a replacement then they go above new people on the waiting list which I can understand, but it is still frustrating. Thanks for reading and for your comment. x

  4. This must be so frustrating for you, and all credit to D for carrying on mean time. Hope it happens soon for you. Must be disheartening having braved the decision to accept a dog into your life to have to wait sol ong. I am sorry to say even with full sight I would hate to go on the underground even out of peak times….crowds freak me, and enclosed spaces freak me as well.

    • Hi, yes, lots of people say they are freaked by the underground. For us it is fantastic, because they are quite freequent, go to loads of places and we pretty much always know where we are. Thanks so much for reading and commenting. x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s