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Merry Christmas

Paula — Wed, 24 Dec 2008 17:14:38 +0000

John and I would like to take this opportunity to wish you all a Merry Christmas and a safe and Happy New Year. We have been overwhelmed by the support and friendship that everyone has offered on Special Families. When we started this site three years ago, it was never intended to be our site, but instead we hoped that it would gain its own momentum. Little did we know how successful it would be and how fantastic everyone that used it would be too. Thank you to everyone who has contributed and to many of you too who have just 'Popped in' for a peep!

Have a great time and keep in touch. x

Empowerment through knowledge

Paula — Fri, 07 Nov 2008 17:04:59 +0000

I have two great friends, both of whom have daughters with cerebral palsy. One gathers as much information as possible, reads and assimilates it all, almost to the point of obsession. The other does not really want to know what the future will hold and is much happier taking things day to day. Who is the most content? Not sure really but it did make me think about the information that we are given, or not, and whether there can ever be something as too much information.
When Michael was a baby, we were literally told nothing. Finding out about Disability Living Allowance was almost a covert affair, with our Portage worker almost apologetically telling us about it with the preface “I am not supposed to tell you this but…”. As a result of this lack of information, we missed out on a years worth of DLA which cost us nearly £1500. Knowing that there was a Portage service was a revelation, again realised too late, a full two years after we could have self referred. How much happier we would have been with guidance rather than beating ourselves up thinking that we were doing something wrong because our child was not reaching any of his milestones and every one else’s was. I think because of these bad experiences and the all too well remembered feeling of despair and helplessness, I have almost become evangelical in trying to disseminate as much information as possible to parents who have got enough to deal with, getting their heads around their child’s condition, without having to fight the fog of ignorance.

Some agencies, despite being well intentioned, feel that giving parents too much information, can be damaging, upsetting them at a fragile time. Personally I feel that if the information is there, then it is up to the parents to chose when and if at all they want to access it. It is not up to professionals, who may only see our children for an hour at a time, to adopt the patronising attitude that parents can’t cope with information, as it is us that have to live with our children 24/7. Some information may be of use, some of it may be irrelevant, but unless we know what options are available, then we are unable to make an informed choice. Some believe that information should only be given as and when needed, but for many parents, it is not the here and now that is scarey, it is the future looming ahead of us. I hope that my children will be cared for, especially after I am not around any more, but will they be cared about? Will they be able to have some degree of independence or will they have to rely on others and who will those others be? Our two are only 5 and 7 but I am still worrying about their old age!

Of course, I am not saying that all information is good, and I know that having two children without a real diagnosis, there can be a myriad of confusing stuff out there, especially on the internet. In the early days, we self diagnosed our son with a whole plethora of conditions, convinced, in our desperation to understand why our child was different, that he fitted the criteria of a whole text book full of syndromes, however weird and wonderful! We have to be selective and cautious at times and, yes, there are times when we are not up to facing upsetting news or facing the reality of our child’s condition, written in black and white. Even if we shove that leaflet in the back of the drawer and don’t look at it for a long time, that information is there and perhaps on a day when we really need it, it may be of use. Ultimately it is about choice and even if that is to do nothing, knowing that there is help out there if and when we want it is a lifeline. Knowledge is power, and as you all know having a child with special needs can sometimes be a pretty dis-empowering thing especially when faced with professionals who think they know best. I feel passionately that empowerment through knowledge and support is one of the greatest weapons we have, to fight the neverending battles that we face.

Undervalued Carers

Paula — Wed, 01 Oct 2008 21:25:00 +0000

One of the things that really winds me up is when things seem unfair, and that people do not get enough credit for what they do. This was really brought home to me this week when I saw an advert for a full time Learning Support Assistant position. I couldn’t believe that the salary for this post was just under £9000, in an age when we have got fat cats and business men raking it in, who in my view contribute very little to society. Such assistants are responsible for our children, helping them academically and socially in school. In Michael’s school, the LSA’s are additionally responsible for intimate care, as well as attending to the specific, challenging needs of children who have complex mental, physical and medical conditions.

I volunteer two days a week at Michaels school and I have seen first hand the fantastic job that these people do with just half an hour break for lunch. Personally, I can’t think of any job more valuable than giving anyone the care of our children and I think that it is scandalous that such work is viewed and rewarded so lowly by society. Not fair!

On a lighter note, Michael and I were talking about Halloween the other day after he saw a display in the garden centre. On discussing the tradition of Trick or Treat, Michael looked quite bemused by the whole thing (not surprising really - it sounds quite ridiculous when you actually try and explain it!!) Suddenly he said “Why give Treaters chocolate - give carrots, apples. Sportacus says!” Good old Lazy Town - looks like our house will be the healthiest and least popular house in the street!!

Back to School

Paula — Wed, 03 Sep 2008 19:25:19 +0000

Blimey - it's quiet! I am sitting in my lounge and all I can hear is the tapping of my lap top keys and the wind blowing the shrubs in the garden. I am also sitting and drinking a hot cup of coffee!! Yes, it is that time of year again when we all let out a collective sigh, wave our charges off and, whilst we love our children to pieces, thank goodness that our forefathers had the insight to make education compulsory!

A big pat on the back to everyone for surviving the hols and hopefully you have all come out of it all relatively unscathed. From our own perspective, we had a really nice 'break' - a few dodgy moments as usual but overall I would say that us and, more importantly, the kids had a really good time. Did loads, and thanks to our fab direct payment carers, the whole process ran a lot more smoothly that normal. It's amazing the difference that an extra pair of hands can make.

We also spent a fun two weeks in France but, as we have found before, a change of environment presents its own issues. Michael coped really well but as usual had to develop his own little routines, invariably involving shutting doors and turning on and off and on and off light switches! That is cool though as we know what to expect now and subconsciously we found ourselves shutting doors too!! Elise unfortunately coped far worse than Michael and the challenging side of her behaviour came to the fore, big time, especially in the first week. Even though we have had her for three years now (we adopted her when she was two) in the whole scheme of things, this is a relatively short time and she is still very insecure. Because she has fitted so well into our family and is so happy, we have almost forgotten that she is adopted and inadvertently downplay the associated problems. Even though logically she knew that she was coming home with us, emotionally, she was not, hence the behaviours. Trouble is, even though we know the reasons for it all, it doesn't alleviate the situation and I can freely admit that my patience does wear thin at times!

Not to worry though - as someone recently said to me, we are not robots and as usual, we worked through it and all was fine at the end. As she stood in front of me this morning in her new school uniform (the second one of the morning as she managed to spill milk all down the first attempt!) looking as proud as Punch, it really hit home to me how much she has come on in the last three years. Whether your child is just starting 'big school' or are old timers, lets hope they have a good year. I am going to go and put on the radio now - it is too quiet!!

Discrimination at the Fete

John — Thu, 03 Jul 2008 21:44:43 +0000

A couple of weeks ago, we had our village carnival which was followed by a fete at the recreation ground. The kids' eyes lit up when they saw that the main attraction was a massive inflatable bouncy castle and slide. Along with our friends, we queued up, only to be told that we were not allowed on as adults were not allowed to accompany children. Despite the fact that I explained that both of mine are physically disabled and need assistance in climbing etc, we were refused entry because of 'insurance reasons'! I'm not quite sure what they expected me to do on the castle (the last time I did a roly-poly I pulled a muscle in my neck!) and I would have thought that they would have been in more danger had I just let them go on their own. It's just another ever present reminder that our children are different and that, even in an arena which is supposed to be for families, it seems that disabled families are excluded yet again and made to feel awkward. I have emailed the carnival organisers three times now and have still received no reply - does that tell me something?

On a positive note, today we received notification that we have been allocated direct payments for eight hours a week during the school holidays, which is GREAT. This will allow me to have an extra pair of hands to take the kids out and do all the normal mundane things that everyone else seems to manage, like going to the shops or taking the kids to the park! Hurrah!

Seizing opportunities

Paula — Fri, 06 Jun 2008 20:03:20 +0000

Life is a funny old thing, isn’t it? All the twists and turns, which at the time seem insurmountable, mould us into the people that we are today without us having any say in the matter at all. The values and priorities that we used to have somehow end up by the wayside, replaced by a whole new set, shaped by the day to day events which make all of our families so special. Until the last few weeks, I hadn’t really realised how much my priorities had changed as a result of having the children but subsequent events have made me realise what a better family we are as a result.
As I am writing, Michael is off school with a sickness bug and I have got an Open University exam the week after next which I have not been able to revise properly for, due to the aforementioned bug and the joys of half term! I know that I should be getting nervous but in comparison to the fact of whether Michael would or would not lose his kidney a couple of years ago, it really does seem inconsequential.
In addition, John texted me about an hour ago to say that he had handed in his notice at work to go self-employed. One of the many reasons is so that he can spend time with the children and a big driving force behind this move was the recent sad, premature death of a girl who I used to help out at school. It suddenly dawned on us how fortunate we are to have the opportunities that we have and how important it is to seize them if we have the opportunity. Yes, we could have more money and security if he stayed where he was but then life isn’t all about this. You only get one chance!

Trivial irritations

Paula — Tue, 20 May 2008 20:40:59 +0000

At the moment I am sitting on the settee and our rabbit is jumping all over my lap top - honestly, if it isn’t the kids…! Have entered a relatively calm patch in our household which is a bit weird as I am waiting for something to hit the fan soon!
I think though that because we have entered a brief hiatus, all the little things that I wouldn’t normally notice have become more obvious and therefore more irritating. The main thing that I have noticed is how seemingly trivial events which others never notice, have such a big impact on our lives. Michaels school coat, for example, has gone missing for the second time in a fortnight. No big deal, especially with the lovely weather we are now having, but this is the only coat that he will wear in and out of school so if he does need it we either have to literally have a fight to get a different one on or he gets cold. Our dishwasher was supposed to be delivered last week and due to an incompetent sales man it was delayed a week. No big deal, but this resulted in an hour long tantrum by Michael who had been prepped for its arrival with everyone who got in his way getting thumped. Elise’s transport has changed slightly to fit in better for the Escort (!) so she is now getting home ten minutes later, the same time as Michael. Because he has his rigid routine, Elise has to virtually be ignored for 15 minutes, which of course leads to her attention seeking and the whole evening is thrown out. (Do it the other way around and things are even worse.)
All little inconsequential events and the perpetrators are unaware of the repercussions of their actions, most of which are inadvertent. However, like a little butterfly, these little ripples lead on to certain chaos. Have got no solution to all this, but sometimes wish that people would be a little more astute and thinking in their actions.

Can we get Direct Payments?

Paula — Mon, 21 Apr 2008 21:04:45 +0000

Firstly, apologies to everyone for the lack of blogs in recent weeks. Not really sure what has happened this year, but what with a seemingly endless run of minor illness, Open University, Face 2 Face, knocking two walls down and having a new kitchen installed as well as the usual day to day tasks, appointments etc., time has absolutely flown! I could really do with a 30 hour day but even then, I think that I would still run out of time to do what I want and need to. Recently saw a really pertinent cartoon in one of the Sunday magazines which said "Not sure if I am running towards something or running away.." which really struck home. Everyone always says that I do too much which is true, I suppose, but in a way, keeping busy is my way of not having to think of things too hard!
Am just embarking on a new battle, this time with Social Services as I attempt to get Direct Payments. Over the Easter, we all went for a week to Devon which was absolutely fantastic but really made me realise how much I need an extra pair of hands. Having John there all day to help was great and my stress levels really melted away as I began to feel like a Mum again rather than a referee/ the riot police/ minder….! It is so easy just to poodle on without realising how hard things are as everything that we do so easily becomes our normal and becomes subsumed into what we do day in and day out without a second thought. It is not until we have the opportunity to step back that we realise how wearing things really are and also how run down we are too. I cannot remember a year where I have had so many colds and coughs and I am sure that this is due to sheer exhaustion.
Asking for help is a difficult thing as I feel like I am admitting that I am not coping, when I am (usually!) though things could be a lot easier. I am also sick and tired of everyone knowing our business and having to go over the same thing time and time again. Anyway, I have decided to grab the bull by the horns and rang our local social services where I was put through to a lady who, after a five minute conversation, decided that we were not going to be entitled to anything. Apparently our children are not severe enough and I get a break from them when they are at school and couldn't I just send them to a child minder?
Now, I know that we have not got an official diagnosis and therefore not a nice neat tick box to fit into, but between the two of them we have got, ADHD, dyspraxia, ataxia, attachment disorder, autistic traits, moderate learning difficulties, physical tremor and gross and fine motor delay, cystinuria and eating disorders so I would say that we have more to deal with than the average family. How on earth this lady could make such a judgement in five minutes, I don't know and I would like to see a child minder who could deal with Michael and Elise when they are 'off on one' individually let alone at the same time! Of course, I am now waiting for the obligatory "I will get back to you" phone call, which translated means "I will wait until you have the time and energy to get back to me in the hope that you won't!". Not holding my breath but will definitely fight our corner - again.

Making the School Swim Team

Paula — Sun, 16 Mar 2008 10:24:57 +0000

Back from Brainwave now and gradually getting used to the new programme. Seems to be going really well and we are all pleased with the progress that Elise and Michael are making. They are both enjoying it and it is nice for us too as, since our children have started school where they have therapy, we have felt a bit redundant on the therapy front. It is nice to feel that we are making a difference.

I got really angry this week as Elise had an ophthalmology appointment at the local hospital. Our usual consultant was on holiday so we had a stand in who was supposed to be a specialist in children with special needs. My goodness, I have never met anyone so ill-tuned in to our children's needs, talking nineteen to the dozen and rushing through the whole process. Rather than explaining to Elise that she was going to put eye drops in she just said to me, "Lay her down and I will put them in!" She had no idea about preparing the child for what was to come, thank heavens it wasn't Micheal who would have probably blown his top! She might have had the badge but she certainly did not have the wherewithal. Yet again, strong words were had and a complaint issued! Incidentally, we only got her glasses back the day before the appointment, having been lost at school for five days and two days later, they have been broken and are now lens less!! Thinking of getting her a snorkelling mask - less destructible!

Having recently completed my Face to Face Training, I am now the Face for the Portage Play and Stay sessions in our area. Have really enjoyed it and so wish that these sessions existed when our children were younger. To be in a play environment made up of children with special needs and their mums has been a real pleasure and I can't wait until next week!

Other big news this week is that Michael has been chosen for the school swim team and is going to swim in the special school's swimming gala next week. John and I were absolutely wrapped but Michael was less impressed as he hates competition - we still haven't got past the inability to lose at Wii Tennis! Will let you know how he gets on!

Boogie Beebies

Paula — Sat, 01 Mar 2008 22:25:22 +0000

Last weekend, I was with my hubby and the kids in the local newsagents. I didn't take much notice of the magazines as I headed towards the CD section, at least not until Elise pronounced, at the top of her voice, "Why has that woman got big fat boogie beebies?". Much to my embarassment, and to the amusement of a few others in the store, she had spied the top shelf! Hmm, not sure how to answer that so rushed her to the CD section so she could dance to the music playing there.
Our life is normally hectic, but it seems to be speeding up rather than slowing down recently. I spent most of this week visiting local schools as our educational psychologist has suggested Elise would be better placed at a local mainstream school rather than travel to the mainstream school with special unit that she currently attends, about 25 miles away. Initially, I loved the idea of walking her to school and making local friends, but after spending an afternoon with her in a mainstream class the other day I quickly realised it was not going to work. There were many difficult incidents during the afternoon, the worst of which was her stumbling into another child who then pushed her to the floor. She just didn't fit in. At least at the school she currently attends she will be one of several children with significant additional needs in the class, so the other children are that much more tolerant of differences. Elise's statement review meeting was on Thursday afternoon and I was relieved to find that everyone, bar the educational psychologist, was in agreement that her current placement should continue. This means she will join the reception class fully next September as a back-yeared pupil.
Other news at the moment includes the arrival of Pepper the baby rabbit, Michael's early Birthday present as our friends' rabbits had an "accidental litter". It's amazing how many times 2 female pets give birth! I'm glad to report that Michael absolutely adores Pepper, though it has taken us all week to persuade him that it should be called something other than Rabbit, which was the most obvious choice for a literal mind like his!
Tomorrow we are off to the Brainwave Centre for our 2nd visit. I'm quite looking forward to it, even if only because I can't take my long list of chores with me so will be forced to take a break!