Mindfulness Schmindfulness

Jo Griffin of www.affinityhub.uk and Dr Lisa Greespan of LAPIS discuss making mindfulness manageable.

Mindfulness is often touted as a ‘cure-all’ answer to many of today’s ills.

Modern life is full of stressful timetables, too much stimulation and choice and the intrusion of social media into everyday life.

It can be unhealthy and unhelpful. Finding something that helps us to navigate this is to be welcomed.

I have to confess, though, that when mindfulness is suggested a part of me despairs. I find it hard.

I’m not a naturally patient or mindful person but having recently undertaken part in a research study on Be Mindful, an online mindfulness programme –

I could see the benefits for myself and for parent carers in general.

Life can feel overwhelming managing the many varied stressors parent carers experience and any way that we can build in a little bit of me time into our lives sounds good to me.

I thought it would be useful to consult Dr Lisa Greenspan, who uses mindfulness in supporting parent carers in her work and here are her words of advice:

‘I’d like to start by relaying a couple of ideas to parents

i) being mindful is a natural process we can all do but it isn’t necessarily easy at first and

ii) practising mindfulness is not about going to a class or listening to a podcast.

So why am I saying that mindfulness can be challenging?

This is especially true when you’re first starting out, for a few reasons.

There’s the challenge of learning something new, a familiar almost childhood experience of learning a new skill and thinking everyone else can do it more easily that you can!

Fear of ‘getting it wrong’ is what we’re dealing with all the time as parents, more so if our child presents issues about which most other parents and even professionals may not be experienced.

Most of us breathe shallowly into the top of our chest or the clavicle.

This may not be an issue for you but if we’re trying to pay attention to the breath, as most mindfulness meditations suggest, you’ll find the sensation from the upper chest or clavicle to be quite weak.

It’s not that easy to pay attention to a barely detectable sensation.

Try this exercise if you like.

If paying attention to the breath is available to you, by placing one hand on the semi-circular bone just below the front of your neck and the other just below the ribcage (your center), and then try placing it lower down on the abdomen.

You may notice a deeper breath is more noticeable the further down your torso.

Experimenting with this noticing the breath idea is in itself a mindfulness exercise.

More about that in a moment.

Even if shallow breathing is not an issue and you have past experience of meditation, there are things we can tell ourselves during mindfulness that take a fair bit of our energy.

While we’re in the process of noticing our breath and a thought or emotion comes into our heads (aka being human).

Typically people can be fairly critical of themselves, employing negative self-talk such as I am ‘doing it wrong,’ ‘can’t see any changes’, or ‘can’t do it on my own’.

This natural and habitual self-talk stands in the way of self-acceptance and it’s not likely to be an overnight change to a lifelong habit in some of our cases.

We may ask how we can even make a start on this? Simply by NOTICING!

Seems circuitous but the first step is to notice any of the thoughts, feelings, body sensations that arise and to say ‘well done for noticing’ with a metaphorical or even real self-pat on the back.

Now scroll back up to the clavicle/center/abdomen breathing section. Repeat.

So paying attention to your breathing isn’t comfortable for you?

No problem, the main reason the breath is used so much in meditation is that it’s easily accessible.

But so is the feeling of the feet on the floor, the hands on the lap, the bottom on the chair.

Any sensation can be used as an ‘anchor’, the one we attend to that gives us a few seconds freedom from our usual thoughts and feelings.

Move the feet around a bit, lift the big toes on their own, try lifting the middle three toes only, use the fingertips on one hand to tap gently on the palm of the other.

Repetition of this process of noticing sensations, noticing the thoughts or feelings with a self congratulatory attitude, is all it takes. As often as you remember.

Experience the difference a little mindfulness can make in your life.’

Now that sounds possible. I hope you can make some time for yourself today.

Jo Griffin is the Founder of www.affinityhub.uk a website that signposts to emotional support for parents of disabled children.

Dr Lisa Greenspan is a Counselling Psychologist at the London Accessible Psychotherapy Independent Service (LAPIS) which provides emotional support to disabled clients and their families.

Please Listen To Mums

People think they know my daughter but no-one knows her like me.

So when you say she is fine in school and doing well and I say she is struggling, please listen to me.

I’m not trying to dismiss what you say but I can see the bigger picture.

You see a child conforming, trying, listening, working.

I see a child unable to sleep for fear she got a sum wrong or crying because she didn’t understand when you explained what an adjective was.

When you see her getting another toy at the shops and you assume I am spoiling her please understand I am not.

I know when my child’s mental health needs a boost because life has been hard on her.

I know when she needs an incentive or when she just needs to feel loved and treasured.

When you see her in clinic once every six months for ten minutes maximum and tell me I must work on something we both know she struggles with and I say ‘not now’ please listen to me.

There is more going on in my family than the one child you see.

We have bigger battles to face and while I accept your professional opinion I have a right to say ‘not now’ when I know it isn’t the right timing for my child or my family.

Please respect that and don’t see me as ‘not engaging’.

When I take her to the GP because I feel she isn’t well please listen to me.

My child may be in mainstream school but she still struggles to communicate. I know her better than anyone and if I think she needs checked over please do so.

I am not wanting to waste your time and I am not neurotic. I know my child and my mum intuition is rarely wrong.

It isn’t that I think I am better than you, far from it, but I need reassurance and a little support.

Please don’t invalidate my opinion because you assume I just want attention or I am wasting your time. I respect you and I would like you to respect me too.

When I say things like ‘she will struggle with that’ or ‘is there a different way we could do this to accommodate her sensory needs’ I am not trying to be difficult.

I am trying to minimise the stress on my daughter and support her.

When I tell you she isn’t able to answer you please don’t ask her anyway as if I just lied.

When I say we need liquid medicine still because she can’t swallow tablets please don’t prescribe tablets anyway just because they are cheaper and easier.

When I ask if you could put her baked beans in a separate container please as she can’t cope with food touching please don’t agree then do the opposite.

I am not trying to be difficult, I am trying to facilitate my daughter to eat.

Just because your child doesn’t mind don’t assume mine doesn’t either. I asked for simple accommodations for a reason.

No-one knows my daughter like I do. That isn’t an arrogant statement it’s a fact.

I ask for referrals when I know she needs them. I ask for accommodations because without them she can’t manage.

I talk to you about her struggles because you need to know for your records not for me to be judged and criticised.

I come into school to talk to you about issues not to cause trouble but to try and support and help my daughter better.

I know my child. I advocate for her until she is able to fully do so for herself.

I am familiar with her ways and her sensory issues and developmental needs.

I am the one lying with her through the night and wiping her tears. I am the one working through her problems with her and reading to her every night.

She grew and developed for nine months in my womb and I have met her every need for ten years.

Please listen to mums when they tell you things. We know when our child is different and when they need support. We know how to help them more than anyone else.

Listening to us and working with us makes a huge difference.

To all those professionals, teachers, doctors and nurses who have listened to me over the years…thank you.

Life Changing

As a parent of twins, life was always going to be hectic. Raising children of the same age is not easy as there is always something that needs to be done.

But to also have a child with a disability is a whole new level of difficult, yet also gives a completely new insight into the world.

Raising twins, you expect everything to be the same.

Yet when one is disabled the contrasts quickly appear and only increase as they get older.

When Rory and Alfie were babies, it was hard to tell that Alfie is disabled, because at that age, Rory was of the same physical ability.

But as time goes on, and Rory has learnt to walk, and talk and is developing at a terrifying rate, it is easy to see how disabled children can be left behind.

How society expects them to achieve less and therefore offers them less support and opportunities to progress.

So, you become an advocate, whether you want to or not. You force society to accept and embrace your child, the way they embrace other children.

Because Alfie is likely to be wheelchair bound,

the majority of his professionals expected us to put him in a special needs school and try to move our focus from helping Alfie to progress and develop, to simply making Alfie ‘comfortable’.

But there is no reason why he cannot be comfortable and healthy whilst also progressing and developing.

There is no reason why Alfie’s education should be less important than another child’s.

There is no reason why Alfie cannot have the same opportunities as Rory.

You also see the inequalities that society tries to hide.

Be promoting inclusion, it is as though society feels it is doing its part, yet when you look below the surface…

There is still so much missing for disabled people that you are fighting an uphill battle before you even realise it.

Rory is expected to have some level of independence at the tender age of 2, yet Alfie is expected to be reliant on others for the rest of his life and will have to fight for equality.

But the journey Alfie, and every other person with a disability, will go on is no less important than anyone else’s journey.

It is simply different. It may take them longer to complete a task, but they can still get the same result, they may have a different method, but the same outcome.

Their journey is no less interesting and exciting so why does society make it so much harder?

Why is the world not as open for Alfie as it is for Rory and when will it change?

5 Ways To Find Your Tribe

Becoming a special needs parent is life changing in more ways than one. There’s a lot we need to deal with mentally, physically, emotionally, and logistically. It can often leave us feeling like we’re lost and alone.

You spend much more hours at home. Social occasions can sometimes be too difficult for our kids, or maybe just impractical too.

There are few people we trust to be able to look after them, so we can end up not going out and doing things for ourselves either.

Fed up of all the cancelled meet ups, friends who we thought would be there for ever start to drift away.

The ones who do stay around, we sometimes feel like they just don’t get what our lives are really like.

They just don’t understand, or we feel too exhausted to bother trying to explain.

As time passes, we can start to feel even more isolated, even more alone.

Nobody we know is living a life like we are, they just don’t understand what we go through.

Which is why it’s so important to do something about it. To be pro-active, to take the first step and find likeminded people who do get it.

Who can understand, who can give valuable advice, who have been through what we’re going through?

Here’s a few ideas of how to find them:

Start with Facebook

These days we’re lucky that technology can bring us together, no matter where we are in the world.

Being stuck at home, unable to go out doesn’t mean you have to be cut off from others. Search Facebook for online support groups relevant to the world of special needs.

There are 100’s of groups out there that allow people to share their lives and learn from each other.

Be brave, read a few pieces in the group and then ask a question, comment on someone’s post, share a little about your life. In no time at all you’ll find people interacting, offering advice, or just becoming someone to talk to.

Search your local area

You’ll be surprised what you might find. See if there’s a support group that has meet ups. Check with local charities, community centres, ask the professionals who work with your child.

Often there’s something going on nearby we just There’s always lots of parents nearby, it’s just finding a way to meet them.

Take a course

Go on any course that you’re offered by your local health care professionals or social worker. Not only will you get to learn more to help your child, but you’ll also meet other parents who may even live nearby.

Even if just for the duration of the course, it gives you a place to go, meet new people, and maybe share some of what’s on your mind whilst you’re there.

Meet people through your child

See what SEN sessions are available locally for different activities. Trampoline parks, swimming pools, soft play centres, often have a SEN session once a week.

A chance for you and your child to have fun, and again meet other families living similar lives to you.

Check with school

Often if our kids attend a SEN school, they take transport to and from school, meaning we miss out making any connection with the other parents.

So maybe they run coffee mornings, or meet ups to solve this problem. If they don’t, maybe it’s something they should do. Speak to the school, see if they can help you arrange one.

Finding our new tribe can mean we have to be brave, push ourselves outside of our comfort zone.

But we ask our kids to do this every day, so the least we can do is try to do the same.

The hardest part is taking the first step, finding your tribe and being brave enough to open up once you do. We’re never alone, we just don’t always look in the right places.

Autism: The Inside Story for Parents – Helping Parents Understand Their Child with ASD

Jo Griffin of www.affinityhub.uk and Felicity Rosslyn discuss how parents can best support their child on the autism spectrum

  1. JG: How parents receive a diagnosis for their child is key. Parents sometimes report feeling left high and dry with no idea of what to do next. What advice would you give parents in the early days?

 

FR: While for some parents the diagnosis can feel devastating for many the diagnosis is not so much a surprise as a relief—they’ve always known the child is ‘different’ and they’ve suffered from being blamed for their child’s ‘bad behaviour’ for a long time.

But the questions remain, what to do next when the agreed diagnosis is an Autistic Spectrum Disorder (ASD. I strongly recommend the autism.org.uk website as a central hub for information and contacts.

The child needs to ‘find their tribe’, whether in school or on the internet – and so do the parents.

  1. JG: It can feel very de-skilling, as a parent, to not understand your child or know what they need. How do you support parents who are feeling like this?

FR: I tell them that understanding autism from the inside is a bit like a journey abroad.

You have to face the fact that you don’t understand the language or the customs very well, and that the foreigners are busy about their business and won’t take time to explain anything.

At the same time, exploring somewhere new and different can be interesting and exciting and you’ll gain all sorts of new skills and experiences along the way.

In communicating with someone on the spectrum it is wise to be cautious about hidden assumptions, yours and theirs, and to focus on information rather than feelings.

There is a ‘guide for visitors’ by a 13-year old boy, Freaks, Geeks and Asperger Syndrome (Luke Jackson) which is revelatory about not only the difficulties of his ASD experience, but the joys.

It taught me a lot. He has subsequently written a book about ASD adolescence.

  1. JG: In my own experience, society and the reaction of others can make, or break, my day (i.e. if my son is displaying signs of sensory overload in public). Do you have any tips on how parents can manage this and support their own emotional well-being in the fallout?

FR: I think public awareness has moved on to the point where you can say ‘my child is autistic’ and be understood.

Obviously, the negativity may still be there, but you can take pride in standing up for your child and know that there’s an increasing body of opinion on your side (which has led to innovations like ‘quiet shopping’ hours and autism-friendly cinema).

The National Autistic Society’s website has short and powerful films representing autistic feelings from the inside (‘Too Much Information’) which could help you understand why overload will lead to meltdowns.

Above all, you need friends who are in the same boat!

Look out for local self-help groups, go online, and reach out to other parents whose children show the same behaviour.

Your child may already have found a friend at school who they recognise – that child’s family may become your support network.

  1. JG: Parenting and childhood are often idealised in the Western world and of course the reality, for many parents, often falls short of these dreams. Images that we receive from adverts, TV and social media rarely tell the whole story of people’s reality. Psychologists talk of cognitive dissonance, the gap between the ideal and the real and the larger the gap the more someone can feel a sense of dissatisfaction or that they have in some way failed.  Are there strategies that parents can use to adjust their expectations to something more realistic?

FR: I think children on the spectrum can be a total antidote to the idealisation of childhood – and that is what I have learned to enjoy about them.

They are factual, truth-telling and direct.

They make us question our ‘normal’ because from their point of view social behaviour is a charade and not worth the effort.

They can be very funny, both accidentally and deliberately, because they see so much absurdity around them – and that can be a gift to those of us who take life too seriously and forget to live in the here and now.

Of course, there is a huge spectrum of abilities and challenges, as well as individual hopes and expectations for parents.

Taking care of yourself while finding your feet in your new situation is an important part of the process.

  1. JG: What messages would you pass onto parents about the future with their child?

FR: I think ASD is best viewed as developmental delay, sometimes in learning, and always in social understanding.

As a rough guide, I get parents to halve their child’s age to get a sense of their social abilities, so an 8-year-old would be 4 in terms of self-control and awareness of others, and a 16-year-old would only be 8, a 20-year-old only 10, and so on.

The message I want to convey is that progress is always being made, but if you compare your child to their peer group you will frighten yourself and pile extra pressure on the child themselves.

The proper comparison is with other children on the spectrum, and with the child’s previous achievements: all glimpses of improvement are to be celebrated.

There’s a new book ‘Been There, Done That, Try This!’ written by mature people on the spectrum for younger ones, where you can eavesdrop on how grownups look back on their years of slow development and see how far they eventually travel.

The difference between these (often very successful) adults and your child is the intervening years of experience.

These adults remember how they learned that other people had feelings, and what to do about it.

They remember learning how to modify their language and tone of voice when socialising. They remember learning to limit the amount of time spent talking about their latest enthusiasm, and how to capitalise on their specialisms when it came to getting employed.

They have done all this so successfully that many of them pass for neurotypical, and they are the only people who know how hard they have worked to get there.

One other side benefit of thinking about the timeline of ASD development is that it throws new light on the behaviour of other members of the family.

The diagnosis of a child is often the trigger for recognising ASD in parents and grandparents also – and the fact that they have survived and lived full lives without diagnosis is all the evidence we need that developmental delay is not final.

Jo Griffin is a Chartered Counselling Psychologist and Founder of www.affinityhub.uk which signposts parents of disabled children to emotional support.

Felicity Rosslyn is a family counsellor with a special interest in autism. Her website is http://www.leicesterfamilytherapy.co.uk

Hospitals and Helplessness

Hospitals are not generally happy places.

Yet they are often a part of our life as parent carers.

I had forgotten or lost awareness of what an impact that can have on us in terms of our wellbeing until recently I took my youngest, non-disabled son to our local hospital for a routine appointment.

Seeing his worry and curiosity at certain things, such as the man walking along with a bandage across his face; another person wearing his hospital gown with a drip attached to him, made me realise how shocking the place can be when it’s seen through fresh eyes.

I had somehow got used to these scenes, but my son illustrated how on some level they are concerning, upsetting and make us confront the frailty of human existence.

Attending hospital appointments can make us feel helpless, de-skilled and reliant on others.

Sometimes it feels as if the professionals have the answers, or not, and we depend on them for referrals or solutions to problems that are beyond our immediate knowledge and capacity.

The frustrations in the NHS are well documented and problems of bureaucracy and inefficiency can add to a sense of powerlessness and lack of control.

The additional challenges of finding parking, late appointments or overstressed and sometimes insensitive staff can be experienced as re-traumatising.  We are no longer the architect of our own destiny.

It got me thinking that parent carers are often at the coalface of life and death, disability and illness.

This is a difficult place to live your life.

It has consequences, such as hyper-vigilance to other things going wrong in life or health worries, as we know how easily life can change forever.

It means we have in our awareness, either consciously or unconsciously, the knowledge that we are mortal, our bodies fail us, there are illnesses from which people we love never recover.

Our eyes are opened to a world that is normally hidden from view.

So what can we do?

Acknowledging this difficult reality is key.  Recognising that sometimes a trip to a ‘routine’ hospital appointment may leave us feeling anxious, vulnerable or in tears.

It may be such a part of our everyday world that we don’t always realise, putting it to one side and just getting on with the jobs that need doing.

But it’s important to stop and acknowledge if we need something nurturing afterward, such as a coffee with a friend or a distraction to take our minds off the experience.

There is also the possibility that it makes us appreciate things more fully.

The precious little gifts that life can throw our way – a rainbow, spring flowers, kindness from a stranger or a helpful meeting with a professional who has really ‘got’ our child.

It may make us more grateful for the days that don’t involve illness or a visit to the doctors.

A smile from our child or a hug that was previously not there can feel like pure gold.

Relish these moments, soak them up and re-charge.

You are strong, you are resilient, but most of all, you are human.

When Should I Start Reading Books with my Child?

Here’s a secret- As an early intervention pediatric physical therapist, when I use a book while I ‘play’ with your baby, I can also assess their fine motor skills, cognition, play skills, expressive and receptive language, and vision.

By the time a child enters kindergarten, they should have read 1000 books.  WHAT?!?

Imagine, if you read one book a day with your child, for 365 days a year, by the time they’re three years old, that’s 1095 books.  I’m sure that there are even days that you read many more than a single book with your child.

A book is a great multisensory toy as it’s essential for learning, at any age, especially in this age of technology. This article will outline the growth and development of a child respective of a book.

Early on in development, a book serves as an oromotor stimulant that a baby can explore.

Handling a book may begin as a single-handed activity, and expand to using both hands at the midline.  Some books have sensory and auditory stimuli that maintain their attention.

Pictures are colourful and can be used to facilitate eye gaze and head control.

Then as the child realizes that there’s something inside this square or rectangular object they begin to use it as a hinge.

Your child will begin to open and close it numerous times, manipulate the book and gaze inside.

As their intellectual curiosity increases, they begin to seek more information from this object and it’s not only a hinge, it’s a hinged toy with content and context.

This next phase is a significant one.  What do those pictures mean to your child?

It’s important to see whether your child gazes at both sides of the page, or do they randomly turn pages.

Your child will develop an association between familiar items and people with sounds or real objects.

They may tap the picture, gaze in your direction; this is referred to as conjoint attention.

At this time, you can begin to label the object, and they may attempt to approximate consonant sounds or words.

They eventually read to themselves with jargon and inflections that mirror your own.  They will increase their repertoire by seeking out different books with a variety of context.

Slowly, their attention span and curiosity will increase.  I’m not specifying the length for each of these phases because this differs for every child.

In the perfect world: your child will love books, love the time you spend together and they will be available to learn.

In short, when I read a book with your child I’m checking the muscle strength of their arms and fingers and their fine motor ability to manipulate this object.

I’ll observe whether they’re eating, banging, opening and closing or just throwing the book.

I’ll listen to the sounds they make or word approximations that they use while they look at a book; lastly, and most importantly, I’ll see what this object with pictures means to your child, and take it from there.

This is the first opportunity we have as parents, and as educators, to signal to them that there is a time to move and play; however, there is also a time to stop, look and listen during play and this is an important message for every child.

Aside from spending quality time with your child, reading will prove to be the foundation for later literacy, cognitive and language skills.

READ ON!