Podcast Episode 55. The use of virtual reality and virtual worlds can be used to change the future for our young people and just how this is happening is the topic of this episode. Continue reading
Credit scores, credit histories and credit ratings may seem alien Continue reading
Guilt! More Guilt! Lots of Guilt! That’s one of the things that I really got from the latest podcast, Wake Up To Sleep, even though it was about sleep. But guilt does surround us if our child is not sleeping. In fact, so many things we do as parents and carers to children with additional needs carry around feelings of guilt even when they’re not warranted.
Vicky Dawson from The Children’s Sleep Charity talked about how parents feel guilty when they can’t do something as basic as getting their children to sleep. They feel judged, and maybe we’ve all done it. Perhaps we’ve all once thought, well if those kids had proper bedtime routines…. But it’s a very small minority of parents who don’t care when their children go to bed, so in 99.99% of cases, the judgment is ill-informed. It comes down to what is expected of us as parents how our children should be according to some arbitrary “norm” and we all feel guilty when we fail to achieve this arbitrary gold standard.
Like many parents my guilt started very early with, “what did I do?” and “am I responsible for how my daughter is?” Of course, over time I’ve realised that’s not the case but, intermittently, those thoughts return and need to be slapped away.
Guilt when my daughter has to go to the hospital. This used to much more of a regular occurrence but now we are down to about once a month, so less guilt you’d think. Of course not! In fact, it has got a bit harder as she has gotten older and questioned why she has to go to hospital. We are in transition at this point from a children’s to an adult’s hospital, and although we have always tried to make sure medical professionals talk to her, not at her (not always easy), and try to involve her in decisions, there are some decisions she isn’t actually mature enough yet to make. These decisions may impact on her long-term health and potentially her independence. So with hospitals, there is a decent serving of guilt for putting her through things she hates, and she tells us she hates, but which we know will help her long-term.
Guilt she doesn’t have enough friends. This is my problem alone because as I’ve said before I’m not even sure she is one of those people (unlike me) who needs lots of friends. But as I’m responsible for her social life, then I get the guilt of feeling have I done enough?
Guilt she watches too much of her tablet. Yes, we ration her, but sometimes when she’s been busy and is clearly overwhelmed and needs time alone we do let her retreat. Maybe not perfect parenting but practical parenting and we do have every parental control possible on. However, as her favourite viewing choices are The Big Bang Theory and Friends, I’m claiming this as an educational tool!
Guilt about being happy when I have a break from her. I’ve got over this one pretty quickly when I realised she relishes this time even more than me. Away from parents means she feels grown up, independent and all the things she strives for. No need for guilt on that one.
I could go on but then I’d feel guilty for taking up too much of your time! So let me sum up what I really think about all this guilt. It’s not my fault but it will be at fault if I don’t do absolutely everything I can to give her every opportunity she deserves to live the kind of life she wants to live. So note to self, STOP IT!
Podcast Episode 41. What is Dyspraxia? If you don’t know or if you do and want to know more this week’s podcast is for you. Continue reading
Podcast Episode 37. The challenge of stepping back and letting our children take risks and make mistakes is never easy. Continue reading
We all know planning ahead can help us reach our goals more easily, but when it comes to actually doing the planning well that’s not quite as easy. What got me thinking about planning was listening to the latest podcast Planning Ahead again where Laura shared the way she has helped her son plan for his independent future. I have suddenly realised that time is running out for me to make sure my daughter has clear goals that will get her to a place where independent living can be her reality. It’s fine me going on about how she will be independent, but it simply won’t happen unless there is a clear plan about how the skills she will need are to be developed and learnt.
That’s not to say I’m completely unprepared and haven’t done any planning. There are many things we do as a family to prepare her. She would argue she is a bit like Cinderella doing all the cooking and cleaning around the house. Not quite true but over the last couple of years, there has been a focus on getting her to cook both for herself and the family. She even knows how the washing machine and dishwasher work.
I think listening to Laura talk about her son resonated because she has got him to exactly where I hope I get my daughter to in a few years: he’s just about to leave full-time education equipped with many of the skills he needs for independent living. More importantly, he knows exactly what the next steps will be. He has avoided that going off the cliff edge you will have heard mentioned when it comes to what happens to our children once they finish full-time education.
There is no doubt that one of the main reasons for this success is the level of planning that he and his family have put in. To quote Laura, “We never concentrate on the present, it’s the future you’ve got to always be thinking about.”
So, a great idea but how to do it? Laura’s strategy was to sit down and make a list of what her son wanted to do, at least in terms of what job he might do. This is the big one really because a key part of independence is always going to be linked to a job. So, making a list of all the areas they may want to work in, then going through the list together and considering each option, very honestly, makes sense. This is a conversation I have started with my daughter, but I need to do it in a more structured way.
In terms of really getting goals written down with a structure, I plan to use the S.M.A.R.T approach. This stands for Specific, Measurable, Achievable, Realistic and Time-Bound. You may have seen this acronym before but if not, the idea is to set goals that have all of these elements. So, a goal I might set with my daughter would be “Cook a lasagne for the family without any help by the end of this year“.
This is a very clear goal even down to the dish she is to cook so passes the specific test. It is measurable because we will be eating lasagne if she achieves it. It is achievable because it is based on what we know about her cooking skills and that is that she is ready for this next step. It is realistic also because we have been working with her and she is already doing a lot of the preparation and cooking by herself. It is time-bound because we have said exactly when we want her to have achieved this.
I think using SMART goals will work really well for my daughter. She likes to know what’s happening in her life so that’s specific and measurable covered. Achievable and realistic are in part down to us as parents, we will have to make judgements on what she is ready to do, although the big issue here is that we must be careful not to underestimate her abilities. Time-bound is very important too. Like I said earlier, I can tell the world how I want my daughter to be independent, I can believe it but if I’m not really working to a plan to achieve it then it’s very unclear when it might happen. I do have a vague notion I would like her living away from home by 25. So, setting a time frame to achieve certain skills will ensure she is always moving forward towards that independence.
What goals to start with? As I mentioned above, work will be the main thing that needs careful planning. I do plan to put in other things as well including skills around daily living. The example above is an actual goal but I’m thinking there will also be other goals linked around this such as shopping independently to buy all the food she might need to make a meal. We are having some challenges with social media at the moment, so there is bound to be a goal around that too. Budgeting and dealing with money will also need some clear goals.
Of course, any plan I do make is very likely to be interrupted by unexpected events, or by a realisation that my daughter can do more than I think she can, or that some of the goals set for her need to be delayed or extended.
Using this clear goal approach has helped Laura enable her son to be independent but in a very structured way. This “helping hand” approach is a tactic that many parents use to help guide the way for their children, and it’s something that allows them to gain the confidence they need to live a more independent life. It’s one I plan to replicate and use with real purpose. It’s time I was more SMART.
Regular readers will know why we started Journey Skills. Fear of the future. Fear of what would happen to our daughter when she finishes full time education, which is coming towards us way too fast. So, one year on from when we launched Journey Skills, I am pleased to say I’m not afraid anymore. It has been a pleasure and privilege to talk to and share the stories of so many fantastic people. I’ve found some fabulous solutions to many of the problems I anticipated, which has made me very optimistic for my daughters future.
One key part of my daughter’s independent future will be a job. Finding paid work is not an easy task for young people with additional needs, often because of negative perceptions around their ability to work. Hence, nothing takes away my future fears more than hearing what is possible and what forward thinking people are doing to change the world of work my daughter will jump into in a few years. In my latest podcast, Providing Opportunity Not Charity, I talked to Steve Chapman and Matt Clifton, from Skillnet Group, who are doing their bit to alleviate my fears.
Matt is the Chief Executive and Steve is a former client of Skillnet. Steve now mentors young people placed with employers on internships. He also spends time educating employers as to why those with additional needs make excellent employees. Skillnet Group started in part as a result of a white paper issued in the UK in 2001 called ‘Valuing People’. While you might not have time or inclination to read all of it, the executive summary is worth a read, even if to be a good reminder of how far we have come.
This report identified where change was needed and this, along with the frustrations felt by a small group of people who believed the services being offered did not enable people to develop, grow or progress led to the creation of the Skillnet Group. The focus is on developing initiatives where choice and control are put into the hands of the people using them. The focus is on real work where people with additional needs are valued and seen as contributors not passive recipients of care. A key part of the operational structure of Skillnet is that they are not a charity, something Matt was keen to stress. Matt recognises that there are many charities, across varied sectors, doing excellent work. However, he also believes that often the concept of charities can reinforce an imbalance of a power where there are helpers and people being helped. Skillnet is a social enterprise and operates very much as a business. It sell services as a supportive and nurturing employment agency.
Steve illustrates what can happen when opportunities are provided. If you listen to the podcast you will hear Steve explain how his initial involvement with Skillnet was through attending courses, and how he quickly realised that this wasn’t enough for him. He felt his strengths lay in talking to others, particularly employers. He knew he could help change the attitudes of employers towards people with additional needs. Steve passionately believes everyone has a need and desire to earn their own money, and are empowered as a result of doing so.
Organisations like Skillnet Group, Ignition Brewery, REDinc and The Ark Project give hope. While these organisations may not necessarily be the right fit for my daughter, or your child, somewhere out there is the solution. In the meantime I shall keep looking and sharing what I find and I hope you will continue to come on the the journey with me.
Talking with Antonia Chitty in last week’s Podcast made me start to think about the impact having a child with additional needs has on our relationships. As she said many parents feel they don’t have anyone or anywhere to go to discuss the pressures put upon their relationships.
If you’re lucky you have support around you, but often people don’t understand the pressures. I guess that’s why we gravitate to other parents who face similar issues. Over the years I’ve made some good friends, and these friendships have started because they have understood what I’m going through and vice versa. It’s not always easy watching friends enjoy their children in ways you will never be able to.
I still remember vividly when my daughter was born and she was taken away suddenly to the special care baby unit. For a while we didn’t know whether she would live. But she’s a fighter and still is. If you’ve had the same experience I don’t need to remind you how it felt. If your child’s diagnosis was later, then you would still have had a similar experience. Coming to terms with a diagnosis can cause the same emotional stages as dealing with grief – loss, depression, anger, bewilderment and, hopefully, acceptance.
Then, in years to come, there may be empty nest syndrome for us to NOT look forward to. That is where most parents can look forward to (or not) their children becoming more independent and moving out to work or university. For many of us who have children with additional needs, this won’t happen, or at least not in the same way and certainly not as quickly. We fully intend out daughter to be independent of us, but she will be at least 25 by then, and we’ll be keeping an eye on her from afar.
Antonia reminded me we cope in different ways under stress. Some might be feeling angry about something but their partner might not appear to be as concerned. Perhaps we don’t understand why they don’t feel as angry as we do, but the reality maybe we are both at different emotional stages of coping. When everything feels like it’s becoming too much, Antonia advises getting help. Acknowledge that our situation is taking its toll. Relationships do break down, and there is a higher occurrence of this with kinds of pressures we face. But there are strategies for coping that can be learnt.
We are under different pressures at different times of our children’s life. We need to find friends who understand the stage we are at. We mustn’t forget our partner is more than just a fellow parent and that, hopefully one day, it will just be us and them again. It’s also important to remember that we are not alone, and that we all worry about our children’s future whether they have additional needs or not: that’s called being a parent!
For a better description of the difficulties and of the pressures upon our relationships, listen to my discussion with Antonia Chitty. She has a wealth of experience talking to parents just like us. If you’re not sure about listening to a podcast this article offers a great introduction. Antonia’s words of wisdom are well worth the effort and I thank her for reminding me I’m doing ok.
Last weekend I went to the movies with my daughter. Some father and daughter bonding time made better by snacks during and dinner afterward of course. We saw The Greatest Showman – a film all about big dreams, financial risk, and belief. Things I need to go with my big vision for my daughter.
Before we discuss that belief in those big dreams, let’s talk about how we got into the movies using the CEA Card first. This is for those in the UK only but there may be similar schemes where you are and if there are please let us know so we can share them. In the UK, it is relatively easy to get just fill in a form which you can find at www.ceacard.co.uk. Some of the online booking systems don’t have a place to add this card the so occasionally you might need to buy your tickets at the cinema. As I showed it to the usher at our local cinema, he said to me it confused him why the carers get the free movie pass rather than the children; I felt like saying, with a smile of course, “yes but I put up with a lot too”.
The Greatest Showman tells the story of a man who also had big dreams, took a mountainous financial risk, and despite the hardships along the way ended up at a place he didn’t expect but one that gave other people happiness, joy, self-fulfillment and pride along the way.
Just what we are all trying to do for our children.
Sometimes we need belief when all logical reason says we shouldn’t expose ourselves so much – I certainly feel this a lot of the time. Few of us would’ve picked our paths if we had a choice, but sometimes I find the rewards of our “little victories” are greater than we might have experienced if our lives had been (quote) as “normal” as every other parent. But that doesn’t change the fact that we sometimes need belief.
Belief in our children’s ability and belief in the plans we have made for them. I know the responsibility of planning for my daughter falls on me and my wife. If they don’t work, it’s us who have shaped her future. A thankless responsibility but honestly one taken on willingly. I think when we have children we all change suddenly we have another human being to care for to be responsible for. Of course, as our children grow up they push us away just as we did to our parents. But the big difference is while my daughter may push me away I can’t really go away. I need to stand beside her as invisible as I can make myself. I plan to interfere in her daily life as little as possible whilst planning her future without me as much as possible.
So, when it comes down to it I need self-belief and faith that the financial and other plans I make for my daughter are good. It’s a risk like the greatest showman’s circus. But I have to have faith in what we are doing. If we don’t believe in her future then we can’t expect others to and most importantly for her to truly believe in her own independent future.
I tease my eldest daughter that I’m going to live to 105. Continue reading