The Professionals

The last few weeks have been busy.

Life is always busy but it’s been busier than usual.

The end of the summer term brings school trips, sports day, play performances, open evenings and the perpetual panic that you have forgotten to contribute to one of the numerous end of term teacher collections.

Add in a World Cup, Wimbledon, the latest series of Love Island and a husband who takes a business trip (holiday) to America for a week then you are not left with much time to put pen paper.

Bob has been busy as well. She has had the usual end of term activity schedule but she has also been attending transition sessions at her new school which she will be starting in September. These have gone well so far. The school have a number of animals including a donkey and a dog so she’s pretty chuffed.

Bob has also had a flurry of appointments ranging from an annual review with her paediatrician to a trip to the special needs dentist with a whole host of others in between.

When Bob was born, we were quick to establish a support network to guide us through the new world of Down’s Syndrome and special needs parenting. We researched online, read books, joined support groups and built relationships with the professionals involved with her care.

It quickly became clear to us that appointments to and visits from professionals would become a permanent fixture in Bob’s life. What was equally clear was that we would need to have a good working relationship with each of them if we wanted to ensure that Bob had the best possible chance to succeed in life.

We’ve seen it all over the years. The good, the bad and the ugly personified by the health visitor who visited me at home twice a week for six weeks, the ophthalmologist who prescribed the wrong glasses and made one of Bob’s eyes shut down and the speech and language therapist who told me she saw no point in seeing Bob with any level of frequency as her progress was so slow. Luckily for Bob (and my stress levels), that speech and language therapist moved on after a year.

Over the years we have managed to accumulate more professionals than we have lost and at the moment there are around fourteen who work with Bob.

As the parents of a child with special needs, I think of myself and The Husband as a hub. We are the control panel who collate and store the information reported by the professionals. We are the people who act on the advice given and hold the school to account when guidance is not appropriately followed. We are the people who complain to County when professional advice is not reflected correctly in her EHC Plan and we are the people who make phone calls chasing for an appointment when clinics are in short supply.

Where possible, The Husband and I attend appointments together. However, there are two clinics which I actively avoid and have delegated all responsibility to my other half.

The first is the special needs dentist.

A couple of years ago, our family dentist thought it would be a good idea to put his fingers in Bob’s mouth to try and get ‘a good look’. This back fired. She bit him. This was the moment where we realised it was probably a good time to enlist the help of a specialist clinic. The Husband assures me that she is now very compliant and even ‘enjoys’ going to the dentist but I’d rather not test it out.

The second is the ophthalmologist.

Bob has been wearing glasses since she was 15 months old as she is extremely long sighted. For the first few years she saw our family optician who was wonderful with her. However, when she started school, we accessed support from the Visual Impairment Team who were insistent that her care should be managed by an ophthalmologist at the children’s eye clinic. Not being one to break the rules, I dutifully took Bob to the eye clinic. She would not sit still, I could barely restrain her and she kicked the ophthalmologist in the testicles. Mortified doesn’t come close.

Aside from the professionals that are involved with Bob’s education, it is the eye clinic team that we see the most often.

As well as having her eyes checked every four months, Bob also has a habit of losing or breaking her glasses. Flexi frames are no match for Bob. We’ve had spectacle arms ripped off, lenses popped out of frames and frames snapped in two. Glasses have been stealthily thrown from moving pushchairs and hidden in the depths of the house. With each loss or breakage, I have to complete an NHS replacement frames form. On this form I have to explain why we are requesting new frames. My personal favourite was when I had to write that ‘Bob threw her glasses on the floor whilst she was sitting in a shopping trolley as I was loading shopping into the car. Before I realised they were no longer sitting on her face, I heard a loud pop as a car drove past. Said glasses lay pulverised on the ground having been decimated by a tyre. However, one lens remained undamaged. I have bought this along to be placed in the new frames so only one new lens needs to be ordered…….’

I thought we were on the homeward stretch now. All the jobs for the end of term had been done – I’d even bought the uniform for the new school and arranged some appointments for the Autumn term.

But as usual, Bob has other ideas.

Just last week she went on a fabulous school trip to an outdoor centre. She was immersed in paddle boarding, canoeing, hiking and eating sausages charred on the BBQ.

She returned home dirty, a bit smelly and very tired.

And without her glasses.

Apparently these are at the bottom of Caldecotte Lake.

I guess I’ll be filling out another form on Monday morning.

 

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We Care A Lot

I’m often asked what I do.

Sometimes the question is asked in a way that seeks to find out what I do for a living. The answer is that I am a stay at home mum and have been for nearly 12 years.

Sometimes it is a bit more loaded and implies that I do nothing all day. This question is usually asked by those without children. Once you’ve become a member of 2.4 land you realise it’s more a case of what don’t you do.

So what do I do?

I am a parent.

I am also a Carer.

More accurately, I am a Parent Carer.

I am one of around 6.5 million carers who live in the UK. A relatively invisible army of people who care ‘unpaid, for a friend or family member who due to illness, disability, a mental health problem or addiction cannot cope without support’ (carers.org).

By virtue of Bob’s entitlement to Disability Living Allowance, I am official. I am a registered carer and one of the 1.2 million people in the UK entitled to receive Carers Allowance from the Government.

This means that I am paid £64.60 each week to care for Bob which assumes a minimum care contract of 35 hours each week.

This sets my pay at £1.85 per hour.

I pay a price for this. To receive this benefit, I am unable to accept any other form of employment that would earn me more than £120 per week after tax and expenses. Simply put, I could work 15 hours each week for minimum wage. I would certainly not be able to return to my former career and retain my benefits.

This is what it is. The allowance is a pittance based on the hours ‘worked’ but it’s better than nothing. However, it does aggrieve me that to accept a well-paid part time job, I would have to surrender my Carers Allowance. I would care for Bob for at least 35 hours each week even if I gained employment. I would still be her carer.

So what does my role as Parent Carer entail?

This is a difficult one because in many ways, what I do for Bob, I do (or have done) for all of my children. The difference is time – both in how long it takes to do something and the longevity of the requirement. For example, you would expect to assist a baby with nappies and potty training until they were around 3. In Bob’s case, she was 7 before she was toilet timed. Even now, she is not independently continent. Either Myself or The Husband have to regularly take her to the toilet and then assist with all aspects of personal care and hygiene relating to this. Similarly, Bob needs assistance with dressing, washing, hair brushing, teeth cleaning.

In my last blog, I wrote about our state of constant vigilance. This is another element of my caring role. A 9 year old girl on the whole, should not need to be watched like a hawk.

Caring goes beyond the personal care needs of Bob. She needs support to access clubs, activities and social engagements. She also needs significant educational support. We have spent a huge amount of time working on targets at home and discussing with school and professionals about how best to proceed in supporting her development.

There are mountains of behind the scenes paperwork. My office (a glorified cupboard) is full of paperwork. Big Brother, Little Brother and Baby Sister all have a single A4 box file that homes the birth certificates, medical checks, trust fund statements etc. Bob has about ten. Approximately one for each year of her life.

A couple of weeks ago I went to my Doctors Surgery for my Annual Carers Medical. This is a relatively new initiative at my Practice and a very valuable service. It is steadily being recognised by the government that carers are vitally important – it is estimated that they save the economy £132 billion per year – an average of £19,336 per carer (carersuk.org). We are frontline workers. If we are unable to care due to ill health, it costs money.

Statistics are also showing that being a carer can cause both physical and mental ill health. In a survey conducted by Carers UK, 61% of carers say they have suffered physical ill health and 72% stated that they had suffered with mental health issues as a result of caring.

Caring has affected me both mentally and physically. At the end of the school summer holidays last year, I broke out in shingles. The nurse said it had most likely been triggered by stress. She also told me that carers often don’t seek medical support or recognise symptoms in themselves as they are so focused on the individual that they are caring for.

The Carers Medical aims to detect physical problems early through blood and cholesterol tests. I was also weighed (much to my disgust) and measured and had to answer questions about my drinking habits. I decided not to tell her that I view a Bloody Mary as one of my five a day.

The medical has also been developed to acknowledge the mental health pressure of caring. Leading questions about my feelings, coping mechanisms and support network were asked. Signposts to organisations were given.

All in all, a positive twenty minutes.

I have no idea how prevalent Carers Medicals are across the country. I don’t know if my Surgery is forward thinking or late to the party. I also don’t know what the uptake for the medical is. My guess would be that those carers who really needed the support are those least likely to be able to take the time to go and have it done.

In case you missed it, we are approaching the end of National Carers Week 2018. Given how many carers there are in the UK, it is more than likely that you know at least one. Perhaps you are one and didn’t realise it. Perhaps you will become one in the future. Perhaps you will need a carer to care for you.

So, what do I do? I am a carer. A parent carer.

 

 

 

The Alternative Destination

When I was about eight months pregnant with Bob, I sat in the waiting room at the Doctors and read an article in a magazine about a mother who had decided to proceed with her pregnancy despite having been given the ‘devastating news’ that her child would be born with Down’s Syndrome. This mother was 28 – the same age as I was at the time. In her interview, she said that she believed that the UK had come a long way in the past 40 years and was a much more enlightened place to live. Educational provision and social care was geared up to offer suitable support and inclusion to those living with a disability and their families. She believed that there was no better time to have a baby with Down’s Syndrome. She could see no reason to choose to abort a baby that could thrive in modern society.

The sentiments of this article were echoed to us around four weeks later by the Paediatrican who delivered the news that blood tests conducted at birth did indeed confirm that Bob had Trisomy 21 – Down’s Syndrome.  She told us that Bob had been born at a good time. There would be lots to look forward to and that we would be supported every step of the way. She also told us that Bob was beautiful. I will forever be thankful to her for her positivity about Bob’s long term prognosis in those dark early days.

My pregnancy with Bob had been pretty standard. A bit of sickness, a bit of hypertension, but overall nothing to complain about. My age had meant that we did not qualify for a nuchal translucency scan. This was only offered to women over the age of 34 at the hospital that we had chosen. Shortly after Bob was born, this was rolled out as standard for all pregnant women, regardless of age.

In other words, we were blissfully unaware that the baby I was carrying had Down’s Syndrome.

I often look back on myself reading that article. I remember thinking how wonderful it was that this woman felt so positive about her baby. It crossed my mind whilst reading it that there was a possibility that my baby might also have Down’s Syndrome. It was only a fleeting thought but I sometimes wonder if my sub-conscious knew that we were about to join the club.

There is an essay written by Emily Perl Kingsley called ‘Welcome to Holland’ that is often circulated to parents of children who have just been born or newly diagnosed with a disability. The essay is a metaphor. The experience of parenthood is replaced with travel. The story goes that although you may have been planning an amazing trip to Italy with all its excitement and glamour, you find you have been diverted to Holland instead. It may not be what you were expecting, but if you embrace it, Holland can be pretty great too.

When Bob was a baby, the Holland analogy comforted me. I found it a poignant piece of literature whose message I strongly identified with. Although adjustments would have to be made, life would be ok. In fact, life would be more than ok. It would be good.

As time has passed, I have come to realise that the acceptance of the new destination was just the first of many adjustments that we as a family have had to make to cater for Bob’s needs. Nine years later, the original essay is now too simplistic (and dare I say condescending) for my liking. In actual fact you find yourself continually arriving at new versions of Holland as your child develops. The grief of never quite making it to Italy often creeps in as new milestones are met (or in some cases missed). Perhaps a comparison to Groundhog Day would have been more apt. I wonder if I will have a differing view on the essay in another nine years. Perhaps I’ll still be writing then. If I am, I’ll let you know.

When you become a parent, adjustments have to be made regardless of whether your child has a disability or not. These adjustments are generally accepted as part of the process of becoming a parent. A limited social life, nights of broken sleep, leaving the house with a mountain of baby paraphernalia and eating as quickly as possible with one hand becomes the new normal.

Being a parent of a child with special needs however brings a more complex layer of necessary adjustments.

We have been incredibly lucky with Bob’s general health. We have not needed to enter the world of caring for a child with complex medical needs. Apart from the use of a disability friendly pushchair which we use on long walks or to keep Bob safe in crowds, we have no need to carry specialist equipment with us and on the whole, we have managed to steer clear of the hospital.

Instead, pretty much all of the adjustments that we have needed to make over the years have stemmed from Bob’s learning disability.

The development of constant vigilance has been the biggest adjustment we have had to make. The Husband and I (and to an extent Big Brother), have developed something of a super power in spotting hazards in the environment. We sense danger before it appears and we have learnt to read Bob’s mind when we are out and about.

Bob is a runner. Our house is on permanent lock down. All windows and doors are locked with keys kept out of reach. Our house is a fortress. It is well protected inside as well. No fewer than five strategically placed stair gates are in operation.

On trips out, Bob will explore her environment and find weak spots to exploit. The Husband and I have to find them first.  Gates will be rattled, door handles in friend’s houses will be wiggled and she will experiment to see whether she can squeeze her body under a fence. She is a quick runner and we have become experts in reading her body language which lets us know if she is about to bolt. We have also learnt that it is best not to sit down when we are at the park or in an open space. It is much easier to outrun her if you are already standing up.

Constant vigilance takes its toll. Not only is it physically exhausting chasing her, it is mentally draining to remain focused to pre-empt an escape attempt. I have written about isolation before but this is another situation in which it rears its ugly head. Soft play parties are the bane of my existence. Rather than socialising with the other parents over a leisurely coffee, I am instead to be found wading in the ball pool or squeezing down the slide as I tail Bob’s every move. If I can get away with it by smiling nicely at him, I delegate these outings to The Husband.

Although the adjustments that we have to make for Bob are sometimes challenging, the article I read that day in the waiting room was right. On the whole, life is pretty good. I’m a silver linings kind of girl. I find there usually is one if you look for it. In this case, Bob’s running has kept me fit and I have mastered the art of the rugby tackle – always a good trick to have up your sleeve.

I must admit though that every so often, I think how nice and relaxing it would be to have a trip to Italy. Only for a day. That would be enough. Any longer and I know I’d miss Holland.

Seeing in Colour

At around 10.15 on a cold December morning in 2013, I sat with my Dad and my Brother and watched my mum take her last few breaths of life.

She had only been ill for a few months. By the time they found the cancer, it was too late. The operations and rounds of chemo were a brave but ultimately useless attempt to prolong her life. My Dad had to deliver the news to me that her cancer was terminal. A CT scan had shown secondary tumours all over her liver as if they had been sprayed there with a machine gun.

In the months that followed her passing, I was fine. Being a practical and fairly rational person, I could reason why she had not been able to live. Although she was only 62, she had raised a family and met her Grandchildren. She had had a good and happy life. I was also relieved that she would no longer have to suffer the pain and indignity that her illness had bestowed upon her. Her body had wasted away. You could feel her bones beneath her yellowing skin. There were also loads of tiny lumps. No one ever said but I am guessing they were tumours. Her eyes however, never lost their beauty. They sparkled until she closed them for the last time.

Keep calm and carry on. That’s what the posters and memes tell us and that’s what I told myself. I’m an optimist by nature. I knew it would be all right in the end. We’d be ok, we’d learn to live with it. We just had to keep going.

That worked a treat. Until it didn’t work anymore.

I once read that the brain is able to protect us from traumatic events by only allowing itself to process what can be safely assimilated at the time.

I have no idea if this is true but I’m pretty sure that my brain did this to me.

As much as I had tried to contain it, my grief started to leak out of me. Initially it showed itself as stress. An inability to cope with the children. I was ratty, short tempered and uninterested. It culminated in a shameful vitriolic spew of rage on Mother’s Day weekend, 3 months after Mum had died.

Hero to zero. My fall from functioning adult to someone clinging on to their mental health was swift. The husband had to step in and catch. He’s a good one, he had been waiting in the wings.

My mental health recovery was a painful one. I enlisted the help of a therapist and had CBT based counselling for six months. For weeks, I felt no joy. I didn’t recognise the person in the mirror. She looked grey and old. Her clothes didn’t look right on her. She didn’t enjoy anything. It was a struggle to cook the dinners, keep the house clean. She was sad. So sad.

And then things started to get brighter. I had reached a tipping point. Pulled myself out of the hole. I started to notice the beauty in things again. I was in colour. I could smile and actually mean it.

My therapy uncovered that my Mum’s death, although traumatic, was just the trigger for my breakdown. The underlying reason was Bob. We had spent so much time and energy problem solving, being positive about her Down’s Syndrome and taking care of her and our other children that I had not allowed myself space to grieve her diagnosis. It had never seemed ok to be angry about it. As it turns out, we have no control over our feelings so furious is now a word that I allow myself to use when I talk about how Bob’s diagnosis made me feel.

My control over my mental health is an ongoing battle. My breakdown has left marks on me. I don’t cope in social situations like I used to. They wear me out and I struggle to remain engaged, particularly in large groups. As someone who used to be a definite extrovert, I find myself increasingly resorting to social masking.

Stress is something I have to keep control of. If I take too much on, I simmer dangerously. I have had to learn to ease and control my mental load. I have got better at organising myself through lists, forward planning and seeking help from elsewhere to ease the burden. Rest and recreation is also something I now take seriously – enjoying quality time with my friends and family as well as giving myself to pursue individual activities.

Although I no longer see a therapist, the tools that she gave me are in constant use. Most importantly, she helped me realise that it is necessary for me to acknowledge my feelings. They deserve a moment to be recognised. To not recognise them creates a pressure cooker in my head. This goes hand in hand with allowing myself to be vulnerable and feeling emotions that might be uncomfortable.

It is currently Mental Health Awareness Week 2018.

My mental health story is not dramatic. I don’t have a mental health diagnosis, I am not on medication, probably not even part of NHS statistics. But yet I am sitting here, blogging about my mental health issues. And I think that is probably my point. Mental health will at some point touch us all. We will all have our struggles and there will be times when we find ourselves in crisis.

The 2014 Adult Psychiatric Morbidity Survey found that each week, 1 in 6 adults experience a common mental health problem such as anxiety and depression and that 1 in 5 adults have considered taking their own life at some point.

I find these statistics sobering. How do we collectively take responsibility for each other’s mental health? How do we take personal responsibility for our own mental health?

I don’t check in on my friends as much as I should. It’s not enough to just share on Facebook that ‘my door is always open’. I need to work on that.

So I ask you. How are you today? Check out mentalhealth.org.uk and take some time for yourself.

Me? I won’t be keeping calm and carrying on. I’ll be keeping calm and taking a moment.

The Thief of Joy

Comparison.

It is something that most of us do on a daily basis.

We compare ourselves with one another in many ways. Superficially, financially, academically, emotionally………the list is endless.

Along with most other women I know, I’ve stood in front of the mirror wishing I was thinner, a bit taller. Definitely prettier. This is certainly not good for ones self-esteem and is definitely not an efficient use of time. Particularly when these thoughts are washed down with a bottle of red and a Chinese Takeaway which does nothing to solve the weight issue. The easiest way to rectify this problem is to stop looking in the mirror and to buy bigger clothes.

Comparison can be positive. It can spur us on and make us ambitious. It can also bring us thankfulness and perspective. No matter how bad our day might have been, you only have to read the news to re-evaluate your own problems. These type of comparisons can make us more compassionate to others and give us a greater appreciation of what we have.

When you become a parent, comparison enters another level. It becomes competitive.

From the tedious ‘does your baby sleep through the night yet?’ to the more divisive ‘breast or bottle’, comparison is everywhere.

When Big Brother was born, I could keep up with these comparisons. He was an average baby who developed in line with his peers and I could enter into conversations with other new mums about all the mundane things that babies do. Although it pains me to admit it, I was even one of those mothers who would happily talk about nappy contents.

Bob of course was a different story. We did not fit with convention this time. She struggled to thrive for her first month of life. She was floppy and feeding was difficult. She did not sit unsupported until she was 13 months and did not walk until she was 3. She did not say Mummy until she was 6 years old.

She still cannot tell me how she feels. She still cannot independently use the toilet.

If I sit and dwell on this for too long, it makes me sad and at worst, resentful. An unattractive and destructive emotion. This is not in Bob’s best interests and most definitely not in mine.

Over the years, we have become relatively proficient at not comparing her to other children. We don’t even compare her to other children with Down’s Syndrome. She develops at her own speed and although it can be slow, progress is still made. We have learnt to appreciate her strengths, taken opportunities that have helped her development and come to acknowledge the enrichment that she brings to our lives.

Unfortunately, there are times when this bubble bursts and we get a reality check.

Every so often, to tick a box and to satisfy the powers that be, we have to compare Bob to other children to get her what she needs. Examples where this has been the case include getting her an EHC (Education, Health & Care) Plan, securing Disability Living Allowance and being granted Exceptional Needs Funding at school.

Bizarrely, to say that Bob has Down’s Syndrome is not enough to legally define her as having Special Educational Needs. A comparison is needed here as well – ‘children with Special Educational Needs have learning difficulties or impairments that make it harder for them to learn than most children the same age’ (SEN Code of Practice).

She is even compared to other children when risk assessments for school outings are completed. Having escaped from the school building on more than one occasion, she is no longer underestimated and they don’t take any chances.

Last week, I had the unenviable task of writing a letter to the Provision Panel at County Council, asking them ‘very nicely’ to agree to allocate her a place at our local special school – Bob has been in mainstream school with her brothers since she started Reception nearly five years ago. She has been happy there and she has made progress, but ultimately, the time has come for her to access more specialist provision.

The Provision Panel have never met me and they have never met Bob, but for some reason, they are deemed best placed to decide what type of schooling is suitable for her.

My letter not only outlined our request for specialist provision, it detailed all of Bob’s weaknesses as an argument for the move. I had to compare her progress both educationally and socially to her mainstream peers. I had to write that my daughter has no equal, peer appropriate friendships in school. I had to write the words profound and severe. I had to focus on areas that she cannot equally compete in. I was unable to celebrate her strengths.

I have had to do this to get her into a school that will give her the best opportunity to develop independence skills and provide her with peers that she can have true friendships with. Despite this, I feel like I have betrayed her. In this case, championing and advocating have not gone hand in hand.

In a few days I will be over it, but for now, I am pretty upset that in order to get Bob what she needs, I have had to be negative about her. Should it really work like that?

The optimist in me cannot leave it there. Instead, I’ll leave you with this.

‘A flower does not think of competing to the flower next to it, it just blooms’ – Zen Shin.

Back Up

Bob is flanked by 2 brothers. Big Brother is protective, nurturing and highly aware of his sister’s disability. Little Brother is pretty much the opposite. Bob is more of an annoyance to him so he tends to stay out of her way. He is aware that she has Down’s Syndrome but he does not yet fully grasp what this means. He can recognise other adults and children who have the condition but the concept of disability and how this affects people is a step too far.

Big Brother is 11 and Little Brother is 7.

We also have Baby Sister. She is 1. Baby Sister adores Bob. They have an understanding between them and can happily spend an hour laughing and playing together. They have also started to argue and disagree. Good friends in the making. Developmentally, I would imagine that in a year or so they will be on a similar wavelength – although I expect Baby Sister will have a greater command of the English language. If we are lucky, she might be the best tutor that Bob ever has. I am also highly suspicious that the two of them will become partners in crime. A force to be reckoned with. Hilarious for anyone witnessing it but an absolute nightmare to parent.

Bearing in mind The Husband and I only planned to have 2 children, you could say that something went a bit off course.

I joke that it is because he is so irresistible (which he is) but that is not the reason.

For me, it is all about safety in numbers. Back up.

It was about a week after Bob was born that I figured out we had to have more children. My mind had been busy processing her diagnosis. I’m a problem solver and I needed to find solutions that would make the situation feel better and not quite so desperate. You could say that I was at the bargaining stage of the grief process.

Although I was sad for myself and The Husband about the challenges and worries that potentially lay ahead, the person that I was most sad for was Big Brother. At the grand old age of 2, I could see a lifetime of responsibility sitting on his shoulders. I was concerned that he would not have a fulfilling sibling relationship with Bob – not just in childhood, but also in adulthood. I was very anxious about the long term future for him. Who would help him make decisions about Bob and her care if The Husband and I were no longer living? Who would help him emotionally and practically as we entered old age? What if he had to care for all three of us at the same time? Even worse, what if he was left without any of us and with no family of his own.

It wasn’t just about Big Brother, there was the other side of the coin as well. What about Bob’s needs? What if three of us were not enough for her? I felt the need to surround her with love and support as well.

I didn’t see any other option. Luckily for me, The Husband agreed.

Fast forward many years later and I can see that some of my fears were just that. Big Brother actually has a very fulfilling relationship with Bob. I honestly think that she has enriched his life and made him into the kindest, most inclusive and accepting child. I asked him what the best thing about having her as a sister was. He told me that he loved how unique she is compared to other people.

Whenever Big Brother has asked questions about Bob’s future, we have tried our hardest to reassure him that we will have made provision for her and that he must not feel that she is his responsibility. As he has gotten older, he has begun to realise how her learning disability impacts all aspects of her life. It is also beginning to dawn on him that her ability to live independently might be difficult. I know he worries about her. I also know that despite us telling him otherwise, he will step up and take the role of supporting Bob in adulthood should The Husband and I be unable. I guess this is what love looks like. He loves her unconditionally.

We are very fortunate to have been able to access a local SIBs group for Big Brother to attend. SIBs is a UK charity that ‘exists to support people who grow up with or have grown up with a disabled brother or sister’. According to their website, there are over half a million young siblings and at least 1.7 million adult siblings in the UK who have a disabled brother or sister (sibs.org.uk).

Each month, Big Brother gets to go and spend a couple of hours with his SIBs group where they do fun activities or go on trips. He has made friends with other children who are also living with a disabled sibling and as such, he has a peer group in which to confide. The group also facilitates circle time where they get to talk about their worries or concerns. He has found it a positive and supportive experience being in the group.

SIBs also offer a range of support mechanisms for adult siblings. I am hopeful that Big Brother (and Little Brother and Baby Sister) will continue to use their support and expertise as the years go by.

So is four children enough? Honestly, I would love more but the practical hat has to be put on at some point. We are very lucky to have the children that we do and for now, this Mum (and Dad) are most definitely at carrying capacity!

 

Splendid Isolation

Before we go any further, I need to introduce you to my eldest daughter, Bob.

Bob is 9 years old and she has Down’s Syndrome (DS). Her name isn’t really Bob, but she has a right to anonymity so Bob will be her pseudonym.

Why Bob? Bob is her favourite Minion and Bob only has 3 letters so that cuts down on typing time for me. It’s a good choice.

Bob has many of the features of a person with DS – almond eyes with Brushfield spots, a small mouth, delicate folded ears and a flat neck. But, as is true of all people with DS, she looks more like members of her own family than another person with the disability. When I look at her, I don’t see DS, I just see Bob.

Bob is good fun. She loves Tinkerbell, Taylor Swift and Little Mix. She loves to dance to her favourite songs and sing (shout) into her Bluetooth microphone at the same time. She has a great sense of humour and gets a real kick out of the TV programme ‘You’ve Been Framed’. She enjoys colouring and painting – although mainly using the colour black as she can see this better. She has a lovely affinity with animals and particularly enjoys playing with our dog.

Bob is also hard work. Her speech and language development is so delayed that her relationships and educational progress are profoundly affected. At the age of 9, Bob’s expressive language skills function within the realms of a 21-24 month old. She understands many single word nouns but she struggles to put 2 words together, let alone produce 3 or 4 word sentences. ‘Who’, ‘what’, ‘when’ and ‘where’ questions are a mystery to Bob and as such, conversational skills and the ability to gather knowledge by asking questions are severely affected.

It isn’t as simple as saying that Bob is a 2 year old in a 9 year olds body because although her communication skills are severely delayed, she has had 9 years of life experience. Instead, she has a ‘spiky profile’ – strengths in some areas and significant difficulties in others. Her paediatrician once described her as ‘a conundrum’. I think that about sums it up.

It is currently the Easter holidays and the children have now been off school for about 10 days.

For me, school holidays are at best tolerable. This is not because I don’t like spending time with my children, far from it. The holidays are difficult because this is the time when I am most socially isolated from the world.

Having four children, I am obviously out numbered, but if you add in a child with a disability to the mix, you have an entirely new ball game. All outings need to be planned with military precision. Bob needs to have her hand held at all times – she is a flight risk and if she got lost, she would not be able to tell anyone her name, let alone give a contact number. Bob can also exhibit challenging behaviours such as sit down protests, shouting, screaming and general non-compliance. Stamina is also an issue. Although Bob is relatively fit and healthy, she does have hypotonia which means she can fatigue quickly. It gets to the point where the easiest and safest option is to not go out.

I am able to mitigate our isolation to a certain degree by having children and their parents to play at our house. But I must be honest, I envy families who can go for day trips to the zoo, visits to local attractions or even just a simple outing to the park. Unless I have an extra pair of hands, it is simply not an option. I know that it will not be this logistically challenging forever. My other 3 children will continue to become more responsible as they get older and I will be increasingly able to give Bob the supervision and attention that she needs when out and about. I am also eternally thankful for having good friends and family close by who take the time to either take Bob or my other children out to do and see things. They are also generous in inviting us to their homes. However, visiting people brings its own challenges. Bob likes to explore her surroundings and I have been left red faced on many occasion when she has taken it upon herself to empty knicker drawers, strip the beds, get in the shower or eat a stash of biscuits in secret. Despite her limited language skills, Bob is incredibly resourceful.

I am not alone in struggling with social isolation. A google search whilst writing this blog confirmed that it is a common issue faced by both people living with a disability and their carers. There are many reasons for this. These reasons include (but are not limited to) problems with accessibility, fear of prejudice from the general public, previous stressful experiences and financial hardship.

I want to put a scenario forward to you. When you go out, either alone or with others, how often do you use public toilets? My guess would be relatively often. Now imagine if these public toilets were inaccessible to you. This would change your entire experience of going out and your ability to do so. According to the organisation Changing Places, over 250,000 people in the UK need a Changing Places Toilet to be able to get out and about and enjoy the day-to-day activities that so many of us take for granted. A Changing Places Toilet has more space and necessary equipment such as a bench and hoist. Surely this isn’t a big ask? Take a look at changing-places.org which sets out their campaign and explains why it is so important to create accessible toilets.

So. Back in my world I have 6 days left until the children go back to school. I’m on the homeward stretch. Self high five. Relax.