I have not written for a while, probably a good few months. I had not intended to ‘blogi’ during the holidays because it is so far from a holiday as many of you will know it is a joke and no wonder when the mere mention of the word ‘holidays’ are spoken the hair on our arms sit bolt upright and we get the heebies jeebies. Holidays to us is just a bloody nightmare. Jack has always gone to an Out of School Club which if filled with the same staff year in year out and they seem to really like Jack and he certainly really enjoys being with them. Them being the women who run the club. He has over the years gone from being the only child with additional support needs at the club to there being two or three children who attend who also require support. My main problem as the years have gone on is that Jack is about 5ft 6 now, he is a young man, he requires shaved daily (by me) else he looks like Grizzly Adams and he is a heavy lad also. He now attends the Out of School Club will small primary school children and to me he looks completely out of place. Don’t get me wrong the children are lovely with him and there are no issues that I am aware of and I would know because Jack would probably not want to go if there was. He loves being there with the staff who are really kind and good with him but I think even they would say that his needs are not best met there. He does not get to go out hardly at all. The Club sits at the top of a hill so it would not be safe for them to push him in his wheelchair, and he cannot access the grounds in which the children play in. So he sits in almost all of the time. I however find that this is the only provision that accommodates my working life. If I have a work thing that starts at 9.00am in Glasgow (1 hours drive away), then I can put him in the Out of School Provision from 8..00am and I can also pick him up as late as 6.00pm although I never do, but the flexibility around the times suits me. He does not go there everyday, only when I need to be out of the house during holiday time. The rest of the time his life is not that much more exciting because I will be working away on my laptop at home and he is left to organise his time between the kitchen (his laptop) and the living room (where the tv is). He gets bored and fed up but there is little I can do and he is lucky that I work from home and that he has the opportunity to stay with me when possible and not have to go to somewhere all day everyday which some children do. There is no other option at the moment buy the childcare he has does not meet his needs and although he gets a good socialising from it I do not feel he achieves much in any other way.
I named this as so because I do believe that people think that having a Blue Badge and being in receipt of Disability Allowance and Mobility Allowance are ‘the perks of having a disabled child’. The truth of the matter is that in my own circumstances those ‘perks’ made my life so much more manageable. Jacks Motability Allowance has given us a new car once every 3 years, that is how I have chosen to use that benefit and it has been such a life saver. When he was small and his behaviour was so difficult for me to manage by being able to put him in a car and drive over to my parents house (20 miles away) or anywhere was a real godsend and life saver for me (no perk intended :)). Jack has thankfully always enjoyed being out in the car and although now I do not need it in the same way as he has no behavioural difficulties I need it because due to his height and weight it is not possible for me to push him anywhere that has even a slight incline or decline of a hill as he is far too heavy. So if I want to do anything with him at all then I need the car to get him from A to B. With regards to Disability Living Allowance, I think that professionals need to realise that this is a benefit that the government have given to families who have a disabled child in recognition of the fact that our children cost us far more throughout their life than a child without any needs. That is why we get the benefit….and no one hands it to us we often have to fight tooth and nail sometimes for years to get the government to acknowledge that our children are deserving of this benefit. For years I used the benefit to keep a roof over our heads, I needed it to pay bills, buy food and clothes and I am certainly not ashamed of that. This is a benefit that we can use in whatever way we wish to and Social Workers need to stop asking us what we do spend our money on or if they are assessing for respite they need to stop suggesting that we use our DLA money for this purpose. Yes of course some people can afford to bank for money for their child and some can afford to use the money to purchase respite but in each category I know of only one family in each who has the means to do either of these things. I certainly cannot. I had a professional recently saying that I could top up Jacks Self Directed Support by paying an assistant extra money so that I can actually get someone to do the job (at the moment I cannot get anyone as the pay is low £6.98 per hour). I have also been encouraged to use my DLA to ‘top up’ Jacks Self Directed Support by £30.00 per month. I agreed to do this but I am far from happy about it. I am certainly NOT prepared to pay any more money to someone to come and give me respite when Fife Council (as it is in this case….every local authority pays out a varying amount, some more than others) cannot increase this pittance. How are we supposed to get our child supported and care needs met on that??? no wonder I cannot get anyone.
I am saying to you as parents if you are told ‘that’s what your DLA is for’ then challenge that please because that is none of anyone’s business…so tell them that. If you are in receipt of DLA then it is because of the reasons given above so stop letting people make you feel bad and challenge that or simply say ‘it is none of your business’…because it really isn’t and some professionals are so rude and so judgemental. Do people not think that I would far rather my son was mobile and we had no car but could have the freedom to go anywhere and do whatever we wanted to do, hop on cars, buses, trains & planes rather than have a mobility car?? Do people no realise that I would far rather my son at 15 years of age was out and about enjoying his self and mixing with children his own age than having DLA?? People need to stop judging and thinking that we get paid a fortune by the government because we don’t!! I have a motability car and I get £295.00 per month and that’s it and would give it all back tomorrow if I could have my child physically able to manage his own care needs and able to get about like children without needs do.
The only perks in my eyes of having a child with a disability is when they reach milestones that have taken them many years to achieve. My son took his first steps when he was 6 years old…and it was right in front of me…6 years old!!! after being told by his consultant that ‘he would never see the world standing on his feet’, can you imagine what that was like…amazing. Another perk is when he celebrates another birthday with us…….that’s the best perk of all.
One of the most frustrating things in the world of disability is ‘change’, nothing ever stays the same for long does it? We’re no sooner getting to grips with Direct Payments (those who were lucky enough to get this) then they bring about Self Directed Support and we’re all back to the drawing board again.
There has always been one piece of legislation that I have worked around and firmly believe in it and that is the Additional Support Act. I have supported parents around this and really do feel that it is something that as parents in Scotland we need to know a little about as it affects our children who are of school age. I could give you lots of information about it here but if you do want to find out more then there is an organisation called Enquire and they have a very informative website that you could check out http://www.enquire.org.uk they also have a parents helpline that I would absolutely recommend you call if you are having any difficulties or questions around your child’s additional support needs within school. Just for the record a child with an additional support need is not necessarily a child with a disability or a long term condition but the act covers any child who has an educational need even if it is for a short period of time (ie, if a child is hospitalised or perhaps they have broken their leg). There is a free A4 book called ‘A parents Guide to Additional Support for Learning’ and it covers all important aspect of the ASL act but does this in an easy to read understandable way and does not make you feel like you need a professional qualification to read it. Call them and ask them to send you out a copy (all free) and keep the book as you will throughout your child’s schooling need to refer to it from time to time and use the information to question or challenge the school under the act as in my experience if the schools know that you know and understand the law then things will change for your child. Trust me!!
Anyway back to change!!! So things change for us all the time. In Scotland we are implementing a set of good value principles called GIRFEC (Getting It Right For Every Child). This is something like the ASL act (and I really don’t want to complicate things but does in fact tie together under the Cirriculum for Excellence context of Successful Learners’, ‘Confident Individual’, ‘Responsible Citizen’ and ‘Effective Contributor’) that as parents of a child with a disability or long term condition and the young people themselves need to know about. I know at the moment that there are a lot more parents and young people who have not heard of this than there are those that have but hopefully the Scottish Government will be looking to change this within the next year or two by holding awareness raising sessions which will give you an insight into what GIRFEC means and how it can work for your child in order for them to be the very best that they can be. All agencies who work with children and young people within the public, private and voluntary sector are signed up to this positive way of working so again like the ASL act it would be in your best interests to know something about it even if it is only remembering the word GIRFEC and asking professionals who are working with your child and family about it and how your child/family can benefit from it. Due to the way your life may be at the moment and as someone who hates these constant changes and new things being thrown at us please don’t worry about the ins and outs if your not up to it at the moment just remember GIRFEC (Getting It Right For Every Child) and ask a professional about it. Think I might have said that twice but who cares better you hear it twice than not at all!!
I have often thought that it is unfair the way change also seems to happen. When professionals are being informed and trained around something that is about us our children, our families and yet no-one tells us about it. It seems there is a lot of money put into informing the professionals but we are the last to know and yet we need to know. How can we ask about something if we do not know it is available to ask for in the first place??? CRAZY!! How great would it be if the government trained and informed parents about a new Act or set of values and they spent lots of money on training us and bringing us up to date with what we need to know for our children and families but did not say anything to the professionals!! of course some would get whispers of something and bits and pieces of information in the same way that we have but the people in the ‘know’ would be the families. I wonder how the professionals would react to that. Of course they would also get trained around it but that would come 2 years after the families knew about it!!! How great would that be. Then when they visited us we would be able to say to them ‘actually your wrong, that’s not how it works’. or ‘you have misunderstood what this is all about’. There would be an uproar, however that’s what happens to us all the time. What is wrong with training us all together at the same time, that makes more sense does it not. I am not suggesting it is done with professionals and parents in the same room at the same time as I know that the two sets will need different training but that makes more sense to me that the way change is implemented at the moment.
Anyway go find out about GIRFEC because it is here to stay and because I do believe in it and hope that like the ASL Act it will be hugely beneficial to our children. It is a really refreshingly positive way of everyone (child, family, professionals) working towards making our children be the best that they can be and it highlights our child’s strengths as well as their challenges. It also makes professionals sign on the dotted line (well not physically) but it commits them to carry out tasks and if they do not carry them out in the given period of time then they are made accountable for that. Now this may just be that they need to explain why they were unable to carry out their tasks (we’re not going to send them to jail or anything) however that in itself is a very small change that was not in place prior to GIRFEC just at the discretion of the professional so as usual the service was patchy.
If there is one thing that needs to happen its that families who have a child with a disability or a life long condition receive the same service. Its not even a postcode lottery for us (I hate when people say that), it is merely down to who works for us. We as families receive a patchy service that is inconsistent and full of judgements. GIRFEC will really help with this and it is one change that as a parent, child or young person we need to know a bit (not everything but enough) about so that if professionals don’t mention it to us we can mention it to them and we can also have a bit of knowledge about what it involves and how our child can benefit from this. If you are up to it and you can be bothered then check out the GIRFEC National Practice Model ‘A Guide to Getting It Right For Every Child‘ has all the information you need.
So please find out a wee bit if you are up to it about GIRFEC and it would be helpful for you to read in the above guide about the Named Person and Lead Professional.
Hope I’ve not overloaded you too much.
It’s been a wee bit hard for me to be motivated to write my blog of late. To be honest I think that it is because it is nearing the start of the summer holidays and as that looms or should I say zooms towards me I start to wind down a bit myself. Goodness knows why because I have to work through the holidays like lots of other parents although I do have a week off in August and I have not long returned from Spain. So I have nothing to wind down about nor complain about.
I have had a few parents (all mums) that have written to me with their stories and I am thankful and grateful for them taking the time to share a part of their personal life with me. Some people have said that they have wept whilst reading parts of my blog and I am truly sorry for that as it is not my intention at all but I am hoping that these were tears of acknowledgement because we are all going down this rocky unsteady road together. Although I have had a few stories I feel that if we are to make an impact the I really do need to have a lot more (not sure if I even have 10 yet). So I feel that I am not doing enough and I think that by asking people to share their emotional journeys is a huge ask and I really do get that but I think the problem is that no-one has ever asked us to share the emotional side of things before and therefore it is really harrowing for us as parents to do this when we have suppressed our own heartache and challenges so far down that they sit squashed together in the deepest darkest parts of our hearts under lock and key and we are probably all very scared to open it for what we might find.
So perhaps I need to go a step further but how do I do that? I have a real impulse and have had this for quite some time that I should travel around Scotland holding venues in small meeting places, advertise well in advance and just get us all together to raise the profile of the emotional impact together. Of course I have not fully thought this through because how could I manage this geographically, just me….but I think with enought preparation and a bit more thought and a kind of agenda (but not too much, just enough to give the gatherings a purpose so that people actually turn up). Then at the get togethers we just talk and perhaps we could get some key people along to listen to our stories. Perhaps in each area we could have a couple of parents who might be prepared (I was going to say happy there but no-one would ever be happy doing this, ‘prepared’ is a far better word) to stand and tell there stories and then we could all just talk about our emotional challenges and lets see what comes out of that.
The last thing I would wish to do would be to cause upset but my feeling is that for some people it might. I don’t see them as being easy gatherings.
However as I keep saying it costs nothing for the Scottish Government or anyone to acknowledge the emotional impact of having a child with a disability and how that affects the whole family and extended family and what emotions are like, how our children’s health, support needs (or lack of it), have a huge impact on our lives. To acknowledge the emotional impact costs NOTHING not a penny but I think because lots of people in their own lives (particularly true of those who have control in their professional lives) never look nor acknowledge their own emotional needs therefore how can they possibly begin to acknowledge ours?? It doesn’t take brains nor a degree to listen (really listen) it takes nothing from the brain but it takes everything from the heart to do this and the reason lots of people are put in positions of power in their professional lives is because they don’t acknowledge the emotional side of their colleagues only the business side and yet if they did (and remember this is extremely cost effective), then they would get far more out of them. If they took the time to acknowledge not just their work situation but also their home life and what it takes for them to turn up every morning and what they go home to every evening then they would have staff who would be loyal and honest and they would have them on their staff for ever.
We need to teach people about the power of the emotional impact and that if they acknowledge that and take on board that and provide something for families which addresses the emotional impact then we really will be almost there.
Counselling is not for everyone, I know this, some people do not see the reason in it and for others its just a bit wishy washy, HOWEVER, an idea that I have and I think its a good starting point is that when a child is diagnosed with a disability (that could be at birth or when the child is much older, or perhaps because of an illness or accident they suddenly become disabled). I think that the parents and siblings should be given a voucher which entitles them to 10 free counselling sessions, which can be used by them whenever they want. I know that for some people it would be put away in a drawer and forgotten about but I would absolutely put my life on the line and say that at some point in their child’s life (probably before they were 16 years old) the voucher would come of use to them. It’s not perfect I know but it would be a start and it would also help with the mental well being of the parents and siblings. There is nothing out there for siblings who have a disabled brother or sister. There are great groups like Young Carers and Sibs who work with the children around matters but this is often in a group setting and what siblings need is a private space where they feel safe to say how they feel that they know will remain private. They need to be able to say ‘He gets everything’ or ‘I’m scared he’ll die’ or ‘no-one ever pays attention to me’ because that is more than likely what it is like at times and that is through no fault of anyone. In my house the one who shouts the loudest gets and that is usually Jack.
Anyway I just feel that as the blog is a way for me to reach people and I know that I do have people who read it and I hope get something from it. I need to do more so……………watch this space………..nothing will change though till after the school holidays as with most parents who have a child with a disability, when everyone else’s life becomes easier holiday times are a bit of a nightmare for us parents.
I’ve not been on for a while as I’ve had the luxury of being away on a weeks holiday. I swithered about confessing that on here or not – such is my guilt around it- and I did not want you to think that I am writing one thing however living a completely different life.
I might as well let you know the stress involved in getting organised to have a break and a few hopefully helpful tips if you have not already had this luxury.
First of all to rid me of any guilt you should be aware that Jack will be 16 years old this year and I have managed to get away for about 3 weekend breaks with friends from when he was about 5 years old till he was about 14 years old. However since he was in receipt of a Direct Payment I have been able to go away for one week every summer with my other children and have paid agencies to come to the house to look after him. I am also now in a relationship and as a couple we have managed to have a couple of short weekend breaks and last week was our first week abroad just the two of us.
As my oldest two children are now it their mid to late 20’s with lives of their own it is now just Jack’s twin sister and myself that holiday together for the week in the summer and as Jack is now in respite they keep him for the week that we go away.
I hope that the above makes sense. So basically I have been able to go on holiday with my other children for one week in the summer and I was lucky enough to sneak in this extra week with my partner. This year I feel very lucky however I realise that luck is all it is and it is unlikely to happen this way again next year.
I really dislike the fact that everyone and their dog knows my business and that whenever I have to go anywhere there is no chance of me sloping off I have to engage far too many people in the caring process. It’s not that I am unappreciative of the help and care given to Jack just the yearning to lead a normal life without needing and engaging others to sail the ship when I am away.
I have learned that when you are planning to go away there is a chicken and egg situation before you begin. If you book the holiday first then what if you cannot get the care around the dates and if you get the care first what if you cannot get a holiday that matches. So what I do is book the holiday first because apart from what I have just stated if you start to arrange the care first you’ll get so stressed out by it all that you will decide the holiday is not worth the stress and will probably just abandon the whole project (and at this stage it is a project….a mission……a bloody dream!!). So book your holiday and then let that drive you forward when it seems like you are NEVER going to get away.
So I book the holiday which is often for months in advance and then for a week or two I live in ‘Denial Land’. When I get so excited about going away, research it on the internet, places to eat, things to do, weather (very important!!), but don’t do anything about childcare because underneath the excitement there is the guilt ‘what are others going to think of me’, ‘what will my family think of me’ and of course when you do tell them, do they say ‘where?…oh that’s great……you will have an amazing time’… no, usually the first thing they say is ‘whose watching Jack?’ and this really riles me because it’s like they infer that I never would have considered that before booking!!! and of course a bit of it is that they may be asked to help out, which to be fair I understand that of my older two girls as they have both done more than their fair share of childcare however I now know that this is not an option and I actually think this is beneficial for Jack’s independence that he is cared for by others and also I think it helps us as a family if his sisters remain sisters and not step into the role of carer (although that cannot be said of his twin as she at times takes on a caring role).
Sooooo, once we get over the ‘whose looking after Jack’, I generally have to begin to think about this and approach agencies. I really do dread doing it as sometimes one agency can do some of it and another agency can do another bit of it and then you have to fill in the gaps by using the goodwill of others. This break however was without complication as one agency had recruited new male staff who were young and I knew that this would be welcoming for Jack and we were lucky enough to recruit another lady who knows Jack well and Jack thinks she is wonderful. So on this occasion the childcare was sorted out within a few days and rather than worry, cry and want to cancel my holiday because it is all just not worth it, for the first time I was able to get very excited about it and research it all (because I’m sad like that), without this constant reality check lump sitting in my stomach.
The week before I go is always completely manic, I need to make sure that Jack’s medicines are all within their use by date and that there is plenty. I begin to type up all the information that people will need to know about Jack, all his likes, dislikes, clothes, schoolwear, his toileting routine, what day he has swimming etc As he is generally cared for at home then I need to let the carers know how to work the cooker/oven, what Jack likes to eat and drink, how to turn on the hot water and shower and how to regulate the central heating…there is so much and on this occasion it amounted to 5 A4 pieces of typed out script!!! You would be amazed on what you need to put down so by starting it a week before I leave and keeping it saved on my laptop allowed me to add to it bit by bit as I remembered stuff. I had to make sure that Jack had snacks at school for the days I was away (I handed them into the school prior to me leaving for them to dish out to him). I had to make up 2 pack lunches and leave them in the fridge as Jack had two outings the week I was away. I had to make sure that the fridge had plenty of milk, butter, food as well as the freezer, cupboard and snacks. It is a mamoth task so why anyone would assume that I could just swan off and leave everyone to fend for themselves is really unfair. Nobody offers to take him, which I understand so I don’t ask anyone to do anything for him but then it’s like they then feel that the care I am leaving him with is not adequate. My dad asked me a few times ‘what is happening with Jack’, ‘will he be cared for properly’? it is such an insult.
The thing is as any parent leaving their child you feel so guilty anyway. Jacks twin sister is also left and I miss her just as much but she is able to look after herself and stays in the house with the carers but she can see to herself and I think she quite enjoys her freedom she gets that week and although she misses me as I really miss them both, we all feel the benefits of our break from each other. It’s not like it happens every week.
I never call home when I am away either however everyone has my number and a contact number and Jack’s older sisters are in touch with both Jack and his twin throughout the week. I am also in touch with them through text.
I understand that this is not ideal but I am trying to make the best of our lives and as they are getting older I feel that I can get away for the odd weekend/week. My finances do not enable me to leave my children and travel the globe but it is really lovely to be away doing things that I want to do and it also allows me time to be in a relationship which is what I want. I do not want to be lonely in my old age however life is not always straight forward and that may not be a luxury afforded to me……..who knows.
As for me having a break every now and then, I refuse to feel that I doing something wrong…I’m not it’s just that when most people go off on holiday they can do it discreetly and when I go, I feel like the whole world knows!!!!!! AND I HATE THAT.
and if anyone thinks that I never give a thought to my children when I am away or they never cross my mind then they are very wrong. I think of them and worry about them constantly…I love my children
Recently I’ve attended a few conferences, mainly around the implementation of the Children & Young People’s Bill and I am feeling really frustrated and very disheartened. Not by what I hear when I attend because to want to embed the UNCRC (United Nations Convention of the Rights of the Child) within the Bill is wonderful and very welcomed move and to wish to make ministers and public bodies accountable for doing so is also welcomed. I am so angry about what I don’t hear, what I rarely hear (unless I bring it up) and that is to see in black and white what matters to me and that is the rights of the disabled child and their families. Where is the recognition ever given to this???? If you query it then ‘they’ will say that when the word ‘children’ is embedded in legislation then it is inclusive of all children, and yet if that is the case why are ‘looked after children’ singled out then?
Within the Children & Young People’s Bill it states that looked after 2 year olds and those with a kinship care order will receive 600 hours of free early learning and nursery education a year. Yet if these children are ‘looked after’ then surely they are safe, healthy, achieving, respected etc, so what about the ‘vulnerable’ disabled child whose parents are struggling at home and who is not developing because of the strains that having a child with disability brings on a family. Would it not be of value to both the child and their parents to have the child receive 600 hours of nursery care a year. Yet no-one listens, no-one hears. Disabled children’s needs are very different from that of any other child and the impact is also very different. Parents can spend their lives grieving for the child they chose to have and not the one they were given. That is harsh, I know but in some cases it is the truth. Like I said in one of my blogs, I chose to have a child and I signed up happily to being a mum. I did not and do not want to be a carer AT ALL. I do like being a mum though.
You don’t grudge anybody anything particularly if they are in need and particularly if they are children but I just wish that professionals would hear about the challenges that children with disabilities face and also listen to their families. Infact don’t listen just look in their eyes, that should tell you all you need to know!!
If only disability were sexy or part of the Holywood scene, if it sold magazines or won an Oscar for ‘Best Performance’
What will it take for someone to listen, to hear and to act!!!!!!!
I’m so disheartened by policy makers.
Tomorrow my boy Jack is to receive an award from the Lord Provost at his schools award ceremony. He is receiving it for being a ‘Confident Individual’. His head teacher send me an email today and her words were ‘his charming, gregarious personality brightens every day. Always a willing volunteer for all tasks’ I am going to be such a proud mum and I know he will be a proud boy. I’ve already told him I’m going to shout ‘woop woop’ when he gets the award but he said ‘no…mum…quiet’ teenagers!!!! such fun suckers!!
Hopefully I’ll get photographs and let you see the proud moment. Jack’s achievements are such a long time coming that when they arrive you feel like bursting with pride.