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The Special Parent

Special children, special parents

I’m the mother of three lovely children.  My middle son, Toby, is a beautiful little boy with a cheeky smile and an adrenalin junkie.  He loves fast rides, fast cars, fast scooters and…well, you get the idea.  He’s great fun and has his own views on life, which he makes pretty clear even though he is five and a half years old and has never spoken a word.

Toby has severe, profound and multiple learning disabilities (SPMLD).  As well as having severe language and communication difficulties, Toby finds loud noises, new people and new environments difficult to manage, and can become very upset when he’s in a place he’s not sure about, or if someone is mowing their lawn or using a hair dryer.  Life can be difficult for Toby because normal life is full of noise, new people and new environments.

Life isn’t always plain sailing for us, Toby’s family, either.  We try to lead as normal a life as possible, but every meet-up with friends or pub lunch or even a trip to a playground requires a fair amount of planning and, usually, an exit strategy.  We can usually stop Toby from picking coals out of a friend’s treasured fireplace or escaping out of a pub door for a limited period, but then comes the point when it’s definitely time to go.

Over the years, I have learnt a lot about looking after a child with a learning disability.  I also have a lot to learn, and also a lot of things I need to look into.  Are there any therapies that might help Toby that we don’t already know about?  Are there any doctors or hospitals or experts we should be talking to?  Are there any clinical trials that we should be putting Toby on?  And the question that haunts me late at night: what happens to my gorgeous, adored son when he grows up and we aren’t around?

I know that my husband and I are not alone.  There are many, many other parents of children with SPMLD who are on the same journey as us.  So I thought I would set up this website to share any information that I glean on my parenting journey, and for other parents to do the same.  I will write about what I have found out, and would love you to get in touch with what you have found out, too, so I can add it to the body of information.  Knowledge is power, and who doesn’t need a bit of extra power?

I’ve called the website The Special Parent.  This is a little tongue in cheek, as there is certainly nothing special about me; I’m just a mum who happens to have a child with a learning disability.  But I also like the idea of there being a little club of parents of children with special needs – special parents, doing our very very best for our little group of beautiful, special children.

Christy xx

 

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Getting Toby to school

The charity Contact, which supports the families of disabled children, has led an inquiry into school transport for disabled children.  The inquiry showed that 51% of local authorities did not comply with the law, and the inquiry has led the government to set up a review into transport arrangements for disabled children.

It’s good to see that a review is going to take place.  For most families, getting their children to and from school just requires a walk down the road, or a short car journey, but families of disabled children know all too well that school run arrangements can be complicated, and if the disabled child or children are at a special school a distance away from home, the arrangements are likely to impact many aspects of family life.

Toby’s (special) school is a 30 minute drive from our house.  For two years, I took Toby to school and back myself, unwilling to send my disabled three-year-old off on a bus every morning, to a school he didn’t know, accompanied by people he didn’t know.  In practical terms, that meant I left the house at 8.15am every morning, dropped my older son off at his school before driving Toby to his school, returning home at 9.45am.  Then in the afternoon, I did the same thing in reverse.  In total, then, I spent 3 hours doing the school run each day.  That’s fifteen hours every week, just getting my children to and from school.

The inquiry found that many parents of disabled children give up work as a result of the difficulties of getting their disabled children to and from school, and this comes as no surprise to me: simply ensuring your children get to school in the morning and back home again in the afternoon can be a job in itself.

When Toby got a little older, and more settled at school, we decided to let Toby come home via home-school transport.  Then we had another baby, and a 90 minute school run in the morning became stressful for the baby and Toby (and me too, if I’m honest), and we decided to send him on the bus in the morning, too.  All went well; we had a lovely driver and the most amazing escort, who brought toys and games for Toby, laughed and joked with him, decorated the bus with balloons and bunting on his birthday, and fairy lights and tinsel at Christmas.  Every morning, we felt like we were sending Toby off for a magical adventure on Santa’s sleigh.

But of course, each year the transport is reviewed, and over the summer holidays we had to wait and find out who our driver and escort would be for the following year.  And we waited with trepidation, because if the driver and escort aren’t lovely and friendly and kind, or if there are other children on the bus who are noisy (Toby is extremely sensitive to noise), or if there are too many stops after Toby and he is sitting on the bus for too long, it could all go wrong and I would have to go back to doing the three hour daily school run.

We also waited to find out about the time the bus would reach us in the morning and afternoon.  Toby needs to be picked up before 8.30am, so I can take my other son to school, so when I received the letter this year explaining that Toby would be picked up at 8.35am, I panicked, until the transport company kindly agreed to change the route so he could be picked up earlier.

We are lucky to have a transport company that employs excellent staff and tries to be flexible enough to accommodate arrangements for other children.  So it’s worth adding that a degree of flexibility and an understanding attitude on the part of local authorities and transport companies is important, as well as following the law.  Families are often trying to juggle the needs of their disabled children, other siblings, and their own work or other commitments, and the original arrangement may need to be tweaked to take all of this into account and make the day work for all members of the family.

Let’s hope the review makes changes to home-school transport that have a really positive impact on the lives of families with disabled children.  I, for one, will be awaiting the results with a great deal of interest.

Summer holidays, here we come

The long summer holidays are fast approaching, and the conversation between parents at my oldest son’s (mainstream) primary school is all about what we are going to do with our children over the summer.  Which holiday camps is everyone going to – football or dodgeball?  When is everyone away – and more importantly, when are they back?!  Who is around to book up some play date swaps?  It’s good fun and while the prospect of six school-free weeks is daunting, we are all (I think!) also looking forward to slightly more relaxed time with our children, and a break from the school run.

The conversation is not so different at my younger son’s school – a primary school for children with severe, profound and multiple learning difficulties and/or an autistic spectrum disorder.  Which play schemes are running over the holidays?  Shall we book in some dates to all meet up?  Who is going away, and where – any good tips for places to take children with disabilities?  And is anyone around for a coffee / stiff drink before the end of term?

But while the conversations are similar, summer holidays for families of children with disabilities pose a specific set of difficulties.  To start with, the summer camps and play schemes for disabled children are great, but can generally only offer children a limited number of days.   In our borough, the council-run play scheme aims to offer all children  eight days over the holidays, which are gratefully accepted – but eight days out of thirty leaves quite a few days left to fill.  For working parents, this can be a nightmare, and they are left trying to find alternative play schemes, which are limited, will again only offer a limited number of days per child and can be a long drive away.

We have accepted four days at a play scheme for Toby, who is six and has a diagnosis of global developmental delay with some autistic tendencies.  For the other twenty-two days, I have been trying to make some plans.  Going out on day trips is difficult, because Toby has a tendency to run away – and he is an extremely fast runner.  So trying to keep an eye on my older son (age 8), my younger daughter (age 13 months and crawling) and a Houdini-like 6-year-old is nigh-on impossible anywhere where there is a crowd.  The best places to visit would be the sort of enclosed play cafes that exist for 0-5 year olds, but they wouldn’t be impressed if I arrived with an 8-year-old and a tall, destructive 6-year-old in tow.  So our days out will generally be to the special needs adventure parks which offer calm environments within secure fences.  Thank goodness they exist – but the one closest to us is a good hour’s drive away, so not somewhere to visit every day.

Meeting up with friends is lovely, but it’s usually a bit hit-or-miss as to how the meet-ups will go.  Toby has a severe sensory processing disorder, which means he can become extremely upset if he hears any sort of mechanical noise or enters a busy, crowded, or sometimes just different environment.  In the past he routinely screamed whenever we went to anyone else’s house, although this has (thankfully) improved in the last year or so.  Nonetheless he is unpredictable, so we stick to visiting very much loved, accepting friends, who – if Toby gets distressed – will stick CBeebies on the TV, offer Toby a biscuit and let chill out until he feels better.

Home is a haven for Toby, so much of the holidays will be spent pottering around in the garden, Toby playing on the trampoline or swing.  And for two weeks, we are going on holiday.  Hooray!  I hope that this year, we have got it right.  Two years ago, we went to an all-inclusive hotel in Majorca.  It was great, but as with everything else, not straightforward for the family of a disabled child.  For one thing, kids’ clubs aren’t an option for us – children need to be potty trained, able to join in activities, and minus a strong tendency to run straight out of the room and into the nearest pool.  So while other parents packed their children off to the kids’ club and went to relax by the pool, my husband and I took it in turns to take Toby off to the bus stop and spend the morning riding around town on the local buses –  one of Toby’s all-time favourite things to do.  Then evenings were spent with one of us chasing Toby around the restaurant, then the hotel grounds, while the other ate / watched the entertainment.  It was a fun holiday, but perhaps needed some tweaking.

Last year, we decided to stay at a Eurocamp caravan in France, with the idea that at least we could keep Toby in a safe, secure environment during mealtimes and in the evenings.  This was successful, apart from the fact that we realised Toby could escape out of the open windows, so we had to keep them shut at all times, even in the 35 degree heat.  So this year, it’s a Eurocamp caravan holiday – with air conditioning.  It’s got a lot of water slides, which should keep Toby happy and mean less rides on local buses – but because we can’t let Toby out of our sight in case he escapes, whenever he goes on a water slide, we need to go on a water slide too.  So we are likely to emerge fitter, if slightly sick from all those waterslides.

So – am I looking forward to the holidays?  Overall, the answer is yes; as with my older son, while I’m feeling a little daunted, I’m looking forward to a slightly more relaxed timetable and spending some time with Toby.  Which reminds me – I need to check with the other school mums when they are away – and when they get back.  And when we are meeting for that coffee…

 

Happiness and independence

So many of us, when asked what we wish for our children’s future, reply: “I just want them to be happy”.  Money, a good job, academic success – all these things are secondary, really.  As long as our children are happy, that’s all that matters.

I agree with this, and have always said the same.  But since becoming the parent of a disabled child, I add an extra wish for my children.  I would like them to achieve a degree of independence.

It’s not something that would have occurred to me before; we assume that our dependent children will turn into independent adults.  But now I see that independence is not a given.  And a lack of independence makes people vulnerable.

Toby, aged six, doesn’t speak.  He couldn’t tell us if someone was abusing him.  Yet he requires adult help with the most intimate aspects of his care – changing his nappy, getting him dressed and undressed, bathing him and helping him to brush his teeth.  He is gentle and sweet-natured and doesn’t fight back.  He is extremely vulnerable.

At the moment, this is not an immediate worry for us.  Toby attends an excellent school, with extremely rigorous safeguarding procedures, and we know all the teachers and staff involved in his care.  Toby comes out of school happy and relaxed.  We are confident that he is being well looked after and should we have any concerns, we can act swiftly to ensure they are dealt with in a way we are happy with.

The worry is that in the future, unless we outlive our son, we are going to have to hand over our entire parental responsibility to someone else, or perhaps a collection of people, in a care home of some sort.

We don’t know how Toby will develop.  Aged six, he has the cognitive abilities of, perhaps, a one-year-old, so by the time he is an adult, this may have developed to a five, six, seven or eight year old.  Handing complete parental responsibility of a five, six, seven or eight-year-old to a stranger, or a collection of strangers, is a terrifying thought.  Toby may look like an adult by then, but he will be as vulnerable as a primary-school-age child.  And would we ever give complete responsibility of our primary-school-aged child away to a complete stranger?

To protect Toby and make him less vulnerable, I want him to be as independent as possible.  By this, I mean that I want him to be able to care for himself as much as possible.  I want him to be able to shout, loudly, if someone isn’t treating him as well as they should be.  If he can’t shout with his own voice – well, then we need to teach him to shout with whatever communication aid he can use.

Of course, I hope there is no abuse of the vulnerable in care homes.  Our adult children who live in care homes deserve to be treated with the dignity and respect that they would command when they lived with their parents.  I have heard of many positive stories of adult children happily settled in homes where they are treated extremely well, so I am optimistic about the future.

But now, if anyone asks what I wish for my children, I always reply, “for them to be happy – and to achieve as great a degree of independence as possible.”  And whenever I take Toby’s socks off for him, or absent-mindedly get him changed for the bath, I tell myself off.  Toby must learn to do that for himself!  He isn’t best pleased, but he chuckles and gets on with it.  He is, after all, a very sweet-natured boy.

 

Portraying disability in children’s fiction

I was at a baby clinic in a children’s centre recently when I spotted a book helping children to understand disability.  How great, I thought, to have a book like this in a children’s centre.  Full of optimism, I opened it up and had a look.

On the first page, there was a picture of a busy playground, full of busy kids.  The book asked the reader to try to identify which child in the picture wouldn’t be interested in sport.  As all of the children in the picture were running, jumping or playing football apart from a single girl sitting alone in a wheelchair, the reader was expected to point to the girl in the wheelchair.  Wrong! the reader was told on the next page.  The girl in the wheelchair loves sport.  In fact, she plays for her local football team!  She is a child football star!  Don’t judge a book by its cover, was the book’s message.  The real person who didn’t like sport was a boy who, despite running around with a basketball, in fact hated sport and preferred drama instead.

I know, of course, what the creators of the book was trying to do.  They were trying to show that if someone is in a wheelchair, or walks with difficulty, he or she is the same as everyone else on the inside and may have special talents that we don’t know about.  That is a good and very positive message, of course, and it’s one I have seen repeated in a number of books I have seen that aim to show disability in a positive light.

And yet the approach is problematic, for a number of reasons.

First, it assumes that young children make negative judgements about other children with disabilities.  In my experience, this isn’t, actually, often the case.  Adults make negative judgements, certainly, and older children, too, but when young children meet Toby, there usually follows the same pattern of behaviour.  First, they usually watch Toby for a while.  Then, they ask me, or his dad, or his older brother, about him – why he doesn’t talk, why he is distressed by a particular noise, why he dribbles or still wears nappies.  His brother or I explain that he has a learning disability and his brain works differently so, for example, he doesn’t talk but he uses a special book to communicate instead.  The children usually nod, interested in the answer, perhaps try out his communication book for a while, and then that’s that – Toby is accepted and the children carry on playing.  We find that being open and honest is the best approach and is most likely to lead to Toby being accepted.  So a book that tricks young children into being prejudiced and then tries to show why that is wrong is confusing, unhelpful and puts the concept of prejudice into their minds when it might not have been there before.

Second, and perhaps more critically, books that suggest that disabled children have special talents can send a worrying, if unintended, message to the disabled child him or herself.  Many disabled children, and particularly those with a severe learning disability, have a variety of interests, but they don’t always or necessarily excel in them.  Toby loves the outdoors, and can spend hours exploring parks and countryside with amazing stamina, but he isn’t the president of the local orienteering and fell-walking society.  He likes music, but he isn’t the leader of the local orchestra.  He enjoys cooking and is great at trying new food, but he’s not a participant on Junior Masterchef.  And that’s fine.  We love Toby for who he is, not for what he does.  That’s an important message to give all our children, and our disabled children are no exception.  We love them, and will support them, and if they excel in a particular sport or activity, we will be proud of them – but if they don’t, we will be equally proud of them for taking part and for doing their best.

I know that these books are written with the very best of intentions, and it’s genuinely wonderful to see disabled children reflected in picture books for young children.  But I would urge the writers, illustrators and publishers of these books to consider carefully the messages they are giving, not only to non-disabled children, but also to disabled children themselves.  All children, disabled or not, should be loved and accepted for who they are, not for what they can – or can’t – do.  The best way of ensuring this happens is by including realistic disabled characters in children’s books.  The characters may play for Arsenal, or paint the most amazing pictures, or be writing the next Harry Potter.  Or they may not.  Either option is fine; we’ll accept them – just as they are.

What is it like not to be able to talk?

Toby is non-verbal.  He doesn’t speak.  At all.  He makes noises – excited noises, upset noises, hurt noises – but he has never said a word in his life.  There were times when we thought he was starting to say ‘duck’ or ‘cat’, but it was wishful thinking.  His ‘ah’ noise wasn’t the start of a word – it was just an ‘ah’.

I sometimes wonder what it must be like for him, not to be able to talk.  We are often asked if he gets frustrated because he can’t make his needs known, but he doesn’t get frustrated because he makes his needs known very clearly.  If he wants a peanut butter sandwich, he gets out the peanut butter and the bread and puts them on the table.  If he wants a bowl of custard, he gets the tin of custard and a tin opener and a bowl, and puts them on the table.  If no-one comes to spread the peanut butter on the bread, or open the tin of custard, he comes and gets us, pushes us off the sofa and drags us across the room to the table.  He can be determined when he wants to be.

So being non-verbal doesn’t mean that his needs aren’t met; they are.  But I think that Toby’s inability to talk means he misses out on a lot of what makes life interesting.  When friends and family come over and fill us in about what’s been going on in their lives, Toby hovers on the outskirts.  If other children come over they immediately start chatting too, about toys or missing teeth or what they have been up to, and again, Toby hovers.  He wants to join in, and does what he can to be part of things.  If the children go upstairs, he will go and sit with them. If they go on the trampoline, he will join them and bounce.  But his lack of speech always keeps him at a distance, and there is a whole fun part of life that Toby isn’t able to experience.

We, taking our lead from Toby’s school, are doing our best to help Toby develop other means of communication.  At his school the teachers use makaton to support speech, have sessions of ‘intensive interaction’ and Toby has a PODD book, which is a book full of pictures to give Toby the tools to chat.  In the book there are pictures for almost all the things he might want to say, with pictures for feelings, all sorts of activities, and even ‘just joking’, which will allow Toby to have a bit of banter with his friends.

But learning to sign, and learning to use the PODD book, is slow work.  Over the summer, Toby signed his name for the first time.  And Toby can now use the PODD book to request certain foods or activities.  It is likely to be a long time before we get to the bantering stage, but hopefully we will get there eventually.

In the meantime, on a day to day basis, Toby gets his enjoyment from other activities – being outdoors, running, scooting, looking at books, watching his favourite TV shows, having cuddles with the people he loves and eating his favourite food and drinks.  We know that he is missing out on a part of life by not being able to talk.  But a non-verbal life can also be an enjoyable one.  And there is something calming about a world without speech engage in conversation.  Going for a quiet ramble together in the woodlands, followed by a drink and a snack in a cafe, has become one of our all-time favourite things to do.

 

Inclusion, inclusion, inclusion

‘Inclusion’ has been a buzz word in education and other fields for a good few years now, and I’m all for it.  I love the fact that my son is welcome – and, indeed, has a right – to attend our local mainstream school.  I love the fact that CBeebies has a presenter with a disability, and that children with profound and multiple learning disabilities often feature on their programmes.  Inclusive policies and practices in education, books and on TV undoubtedly help Toby to feel he is a valued member of the community and that there is a place for him in the world.

So what happens when the inclusive model of education stops working for a child?  Is it a betrayal of all the people who have worked so hard to send out such positive, welcoming messages to opt out of the mainstream model of inclusion and send a child to a special school instead?

This is what we did and I must admit that I felt somewhat guilty about it.  So many kind, positive parents, whose non-disabled children attended mainstream school, told me how much they valued having children with disabilities at school, because it made their children understand difference.  I believed in the inclusive model, too, and felt that surrounding Toby with children who could talk and play and interact would give Toby some positive examples of how to communicate.  And yet it was a model that wasn’t working for Toby.  At mainstream nursery, Toby was surrounded by children talking, yet he wasn’t learning how to communicate; it was hard to learn anything when he was standing by the exit with his hands over his ears.  The nursery was full of children playing and interacting, but Toby stood at the edge, fearful of the noise and unsure how to join in.  Toby was attending the same nursery as these other children, yet he was on his own and he wasn’t learning a thing.

We were lucky enough to be offered a place at a nursery attached to a special school, so Toby began attending the special school nursery half the week, and the mainstream nursery the other half.  Within a day or so at the special school nursery, we saw Toby relax.  His hands came away from his ears, so he could hear.  He stood close to the other children, so he could see.  His senses slowly came back to life and Toby began to learn.

It quickly became clear that if we wanted Toby to learn anything, he would need to attend this special school full time.  This is what our educational psychologist and other professionals had gently been trying to tell us for a long time, and we grudgingly began to accept that they were right.  We made the difficult decision to opt out of the inclusive model of education.  It was a sad day when I received the email telling me Toby had a place at our local mainstream primary school, where his brother was already a pupil.  I had always assumed that our boys would go to school together, and be part of a lovely, local community, but we were going to turn down that school place and way of life, and send Toby to a school thirty minutes’ drive away instead.

We have no doubt that we did the right thing for Toby.  He loves his school and is learning, albeit at his own pace.  And when I shed tears for the school community Toby wouldn’t be joining, I forgot that there may be a different but equally lovely community at the new school.  The children, parents and staff at his school are wonderful.  It has been a massive relief for Toby and for us to join a large body of people who understand Toby and can help him.  And it’s a relief to be in a place where Toby isn’t considered different.  He’s just Toby – our lovely, smiley, happy Toby.

Some parents, particularly those without children with special needs, look at us as if we have let our son down by sending him to a special school – as if we have stopped fighting for him and given up on any chance of his living an independent life as an adult.  I have heard many people say that if they had a child with special needs, they would want them to go to a mainstream school and learn from other children there.  I totally understand that; we would have kept Toby in the mainstream system if there was any chance he could have coped and learnt there.  And a special school is always a last resort – who would choose to send their child to a special school if they didn’t have to?

I would love to hear other people’s thoughts and experiences about how their children with learning difficulties have coped in mainstream and special schools.  Has your child thrived in either setting?  Or have you had problems with a mainstream school or a special school?  Are special schools even available where you live – I know that provision is patchy in different areas of the country?  We have been on our own personal journey, trying to decide what is right for Toby; please do get in touch and let me know about what you have decided for your child, and why.

 

 

When children grow up

Most of our children with learning disabilities will become adults with learning disabilities.  This is the part of Toby’s life that worries me the most.  While he is a child, and I am in good health, I can look after him.  I can make the final decision about where he goes to school; I can look after him when he is sick; I can create a home life that makes him happy.  But when he grows up, what will happen to him?

This is a genuine question.  Does anyone out there have grown-up children living at home, or in supported housing, or anywhere else?  Is it working for them?  And have you made any plans for what happens when you die?

These are all questions that often remain un-asked.  I suppose it’s a bit like talking about wills: we don’t want to think, or talk, about death, or dying.  It’s too sad and too morbid.  And yet for those of us with children who are likely to need assistance all of their lives, we have to think about that time, if we want our children to live happy lives when they grow up.

I once worked on a summer camp in the US for children and adults with disabilities.  It was a very happy place, with loads of activities – swimming, dancing, singing, arts and crafts.  There were weeks where elderly ladies came and we had tea parties and dances.  There were weeks when young adults came for discos and American football.  It was fun.  It’s the sort of environment I would love Toby to experience when he’s older.  I want him to be happy and active and surrounded by friends.  I hope I can put the right plans in place now to ensure that happens.

So do get in touch with your thoughts, experiences, tips or advice about how to ensure our children have happy lives when they grow up to become adults.  I can assimilate your responses and report back.  Maybe there are things we can do, individually or together, to ensure all our children live happy, fulfilling lives when they become adults.

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