|The security that comes through being loved|
Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs. Some of our mums are advocates or established campaigners, we also have a midwife, two nurses, four teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.
Over the last two years families of vulnerable people have had to adapt to so many government cuts and heartless new policies, that it’s taken its toll on all of us. This blog has given parents the opportunity to share their experience. Some, like myself, have social workers who will do all that’s within their power (and limited resources) to make our lives easier, and there are families that have benefitted from great professional support and guidance. Other families, sadly, have had no such support. They’ve been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of the disability. Facts about their family life have been distorted and manipulated into many untruths, making parents painfully aware as they drag themselves from one assessment to the next, that their reputation probably precedes them. They feel judged, disrespected and ganged up on, so sharing their story with me in Warrior Mums puts their truth out there for all to read.
10 February 2016
28 December 2014
Cancer, Autism, Special needs.
Merry Christmas to all our friends out there and thank you so much for your year-round support.
I’m honoured to feature Yvonne Newbold as our special Christmas Mum - and when you read her amazing story you will understand why.
"It's a very lonely place being Toby's mother, and now he is an adult, advocating effectively on his behalf gets harder. Adult Services teams work with a very different set of goalposts. Many share a dogmatic ideological belief that Learning Disabled adults are being “held back” by their parents. Many of these professionals see it as their role to rescue the young adult from the clutches of over-protective parents. Once your child reaches 18 technically they are a “vulnerable adult” and therefore the responsibility of the state rather than the parents."
Toby and Francesca - round and round the garden.
Would you like to tell us where you were born and if you had any brothers and sisters?
I had a lovely childhood. I was born and brought up in the Wimbledon area of South West London, the middle child of three. My brother is three years older than me, my sister is seven years younger.
M. You started work at a very young age and what an interesting job it was!
|Upper sixth form|
Teaching in Italy and looking like one of the children!
At the ripe old age of only 18, I was offered a job as a full time school teacher in a private primary school, in sole charge of a class full of Italian 6 year olds in the morning, and teaching English to groups of older children in the afternoon. I had no training whatsoever, my Italian by then was pretty good but certainly nowhere near competent enough to teach reading and writing in it to tiny children, and I had no clue about behaviour management. The great thing about being 18 is that you don't really understand what you don't know, and you just throw yourself into things without stopping to let your confidence wobble.
|Adam, Francesca and Toby|
M. Tell us about your children.
|Xmas 2014 toast|
Adam – is 17, born in August 1997, and he, like Francesca, is frighteningly intelligent, however, because of his long list of neurological disabilities, he found school incredibly difficult, and has been very badly let down by the educational establishment. After a lot of discussion, he took the decision to leave college this summer without completing his sixth form course. Instead, he is working with me on all the post-book publication internet marketing, with a view to gaining enough skills to start working in this field. Adam is the one who has inherited my chatterbox gene, and he also is hilariously funny and a natural performer. Like his sister, he too is very involved in our local theatre company, and his has also started to volunteer alongside Francesca helping with the Adult Learning Disability theatre group.
M. How have you enjoyed motherhood?
|Toby, poorly in 2013|
|Yvonne, Malcolm and Francesca|
The first I knew of Adam's problems were one morning when I discovered him after his first of many very determined suicide attempts. He spent three years in a very frightening mental health wilderness, three years where he was unable to engage and he became virtually unreachable. Over the last year or so he has made a remarkable recovery and I'm getting to know all over again the happy, engaging, hilarious, cheerful, caring, sensitive, energetic, fabulous Adam that I remember so well from when he was seven or eight, the Adam I once thought we'd lost forever.
M. Several of our warrior mums have written books that turned out to be very therapeutic and you are no exception. Tell us about yours?
Almost exactly a year ago I wrote this blog post, a few days after last Christmas. I think it gives a very honest glimpse into how things really are for my family.
"Christmas this year has been overwhelmingly difficult in many different ways, and yet also completely lovely shortly after the dinner was on the table. That wretched dinner! More about that one later.
Years ago, when my kids were tiny, and Toby was oh so ill and fragile, going out was nigh on impossible, so instead I promised myself that what my kids lacked in terms of days out I would make up for with fabulously fun and over-the-top birthdays and Christmases. However, I never bargained on getting cancer.
This Christmas has really given that old cancer of mine a chance to showcase its talents which are total and utter exhaustion, zilch energy, distracted concentration levels, crippling joint pain and a fairly generous helping of depressive lowness too. Absolutely everything took longer, didn't go quite to plan or even deteriorated into total disaster, or so it seemed. I just seemed to spend the previous three weeks working harder for longer hours than I've ever had to before, and just not achieving anything at all worth noticing. The house was a tip, and the harder I tidied the more tippish it seemed. The more planning I did the more catastrophically pear-shaped things went. Quite frankly, I've always been like Mrs Christmas, loving every minute of pulling everything out of the bag and making it all happen, but this year I was Mrs Christmas Misery personified.
Christmas dinner was a nightmare. I could not get my head around timings or cooking methods or gravy, bread sauce and sprouts whatsoever. How have I got everything in the oven and out simultaneously and on time in previous years? I haven't got a clue. All I know is that all I wanted to do by ten o'clock on Christmas morning was to sit on the floor, burst into tears, throw the sodding lot in the bin and get someone else to produce cheese on toast for all and sundry instead.
Somehow it all worked, but I've learned some valuable lessons in the process. At 2.30pm baked salmon fillet with a herb and lemon sauce on brown bread and butter was served, and swiftly followed by Turkey, Ham, Stuffing, Pigs in Blankets, Roast Potatoes, Bread Sauce, Sprouts, Parsnip, Broccoli, Peas and Gravy at 3 O'clock on the dot. All by myself, and the clearing up too.
So what were those lessons? Quite simply, never again. I've had to face up to the fact that I'm just not well enough anymore. The stress and the panic and the worry and the going to bed at 3am for a week or so beforehand just to try and get everything done is crazy. If I'm lucky enough to still be alive next Christmas and I do this all over again, then I would really be pushing my luck for the Christmas after that.
However, next Christmas will not be the same, nor any Christmas beyond that one ever again, and not because of my cancer, though goodness knows that may impact on future Christmases a fair bit too.
The main thing I've had to cope with is the sadness that this year was an end-of-an-era Christmas, with all sorts of things beyond my control about to change for our family.
The first change is heartbreakingly difficult to even write about, and it has taken months of very difficult emotions to cope with to accept this change as an inevitability. Toby is leaving home. I know that this is age-appropriate, and at 19, a vast swathe of his age-group are away at uni or off doing their own thing, but with Toby it is so different. He still has the mental age of a 2 year old, and the mindset of a toddler. He is very Mummy-clingy, and has no clue of what we are planning for him and why.
The very sad reality is that I am no longer well enough or strong enough to care for him 24/7. I tuned that one out and lived in denial very successfully for a very long time, but then a tragic event brought it to a head. I know of another breast cancer patient whose disease was following a near identical pattern to mine. She, too, was doing comparatively well until her disease started progressing very suddenly, and in the space of 6 weeks she had died. It was a huge shock to her family, and has given me a bit of a wake-up call to ensure Toby is properly cared for if the same thing were to happen to me.
If I was to deteriorate suddenly, what would happen to him? Social Services would have to act very quickly, and may have no choice but to shoehorn him into a situation which may not be suitable or where he may not be happy, and he wouldn't have me fit and well enough to be banging or doors if things are going pear-shaped, or to visit him several times a week to help him settle in.
One day, I will die, hopefully not for a very long time yet, but when that day comes, I want it to be a sadness for Toby, rather than a tragedy. The idea of him losing his mummy and his home in one fell swoop is just too much for me to comprehend. I owe it to him to ensure he is happy and settled elsewhere before I toddle off the edge of this planet.
Making such a major decision has been probably the hardest thing I have ever had to do, The idea of Toby, as vulnerable and dependent on others as he is, being cared for in some sort of residential setting is just the stuff of my nightmares, and has been for several years. When he was very little, he was not expected to survive, which was incredibly hard to accept and live with on a daily basis. At the time, I thought that was the worst thing that could possibly happen to a mother, knowing with virtual certainty that her offspring will die in childhood.
Now I wonder if that really is the saddest possible outcome. At least he would only have known the type of love that a warm, close-knit family can offer. For years I have woken in the night tortured by the image of a Toby in his fifties, living somewhere else, unhappy, unloved and unable to make his needs and wants understood clearly. All learning disabled adults are vulnerable to abuse of all kinds, but when they are also largely non-verbal, these fears for your child's future are magnified beyond all proportion.
My job is to make sure that we springboard him into his new setting as positively as possible, and that I am still well enough to advocate for him for long enough until Francesca and Adam are sufficiently confident to take over. He will always be a huge part of this family wherever he is living, and I am trying to console myself with the fact that, if this goes well, our relationship could develop so that I am "just his mummy" for the first time in our lives. Of course he will still come home often, and we will visit him frequently too. Yet other people will be there to do his physical care and cajoling and giving him his medicines; all that stuff will be out of the way so that he and I can just have fun in the very silly ways we both enjoy together.
In the next few days, I'm hoping to write another post about the whole topic of care, and the decisions I have had to make and why, but right now there's another change to tell you about too.
I'm going to be a grandmother to a little baby boy in April, courtesy of my youngest son, Adam and his lovely girlfriend, Alex. They told both Grandmothers-to-be together in the same week their GCSE results came out, so they are far too young in most people's eyes. It's not easy to become a parent when you haven't even finished your own childhood yet, but I am so proud of both of them in the way they have taken it on board. They are acting responsibly, saving for the baby, working hard and pulling together - they may be young but they are growing up incredibly fast and showing a level of maturity that I've seen lacking in new parents double their age.
There are huge social stigmas attached to teenage pregnancy, and I've done more reading up on the subject than I ever thought possible. Yet how can the birth of a brand new baby ever be anything other than joyful? In many ways this little boy is already blessed. He is being born into two incredibly strong, resilient and loving families who are both pulling together already to support this new little family unit in every way we know how to.
If you have been reading this blog for a few months you may remember that the one thing I was very sad about when I was diagnosed with Stage iv cancer was that I was unlikely to meet my grandchildren. If Adam and Alex had waited a more conventional extra 10 years before starting a family, that may well have been the case, but now I can look forward to being a fully-fledged Grandma with babysitting duties and everything else Grandmas are good at doing.
In our situation, though, I feel very strongly that my role is to support them all through thick and thin, come what may. When they leave the house with the baby they are going to have to learn how to grow a thicker skin to deal with hostile stares, remarks, judgements and ignorant assumptions from strangers who won't understand that young parents need more support, not less.
Teenage parenthood does not have to be a disaster, in fact, I'm hopeful that this baby could actually be the making of both of them. As long as we all support them so they can finish their education so that they have a reasonable earning capacity, they don't have to be a poverty breadline statistic either. If I'm still around I will be highly amused at watching Adam deal with parenting a teenager when he is still in his twenties, but having seen both of them becoming focussed and forward-thinking by the day, I'm sure they'll both deal with whatever challenges parenthood brings them admirably.
Even Francesca is off, out and about, doing her own thing. She has made me brim with pride and quake with fear in equal measures this year, as she has discovered a travel bug and fallen in love with Italy. She spent several weeks in the summer as an Au Pair on a Sicilian beach for an extended Milanese family supervising 5 small children. Then she enrolled on an intensive language course in Rome, absolutely falling for the place. This weekend she did both Rome and Bologna, managing to make it home in time for Christmas but arriving at Heathrow in the height of the worst storm we've had for years. I have a feeling she'll be spending a lot of 2014 in pastures new, and I'm thrilled to see her making the most of her youth.
It was only May 2012 that I was diagnosed with cancer, and my biggest fear then was leaving the three children motherless, well before they are ready. They are still nowhere near ready for me to pop my clogs, but just look at how far all three have come in the space of less than 2 years.
Back to Christmas. Dinner was on the table but it took me an hour or so to get my own Christmas spirit flowing nicely again, possibly helped in the end by a couple of glasses of good red wine. By the evening, things were great, the kids were happy, the whole family was there and we laughed like drains til the small hours of the morning. In the end, it was probably one of the nicest and happiest Christmases ever.
Who knows what next Christmas will look like. The dynamic will definitely have changed, but Toby, our very own family Christmas King, will definitely be at home for the whole of Christmas. Who knows about the others? Francesca, Adam, Alex and Baby will know how welcome they will be, as will everyone else in our extended family, but it's now up to my kids to decide for themselves to do what feels right for them at Christmas. One small change I may make though, next year it could well be cheese on toast for Christmas Dinner."
M. Yvonne, thank you so much for sharing your story. I know I speak for many when I wish you well in the future with both your health and Toby's placement.
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