Friday, 30 September 2016

When I was rooting around in an old computer folder I found a lot of stuff I had written when I was pretty poorly with PTSD some years ago. It was a tough time faith wise. A time of what I now call fingernail faith, holding on to what you still know is true, but only just as if by your fingernails. 

Worship is a decision, not a feeling. And sometimes it is a decision to live the fact that God is still God and worship Him even if nothing makes sense and everything hurts. Or nothing hurts because nothing feels and everything is bone dry.  Or both.

God honours this. I absolutely want anyone in this situation to hear that God honours the choice to keep believing, keep worshiping, keep hanging on by those fingernails. And He will bless, will redeem, and will never leave your side.

Now I have come to my wit’s end Lord
which must be your beginning
I am walking alone in the desert and still
I don’t feel the wind and the heat

I know you are present but I am blind
to your pillar of cloud
and your fire by night
You died for me but my heart forgot
Because it has closed the door

on the good and the bad.
Lord I pray for rain
On the good and the bad
Lord I pray for tears,
On the good and the bad
Lord I pray for your joy,
For a heart that remembers the dance

Your voice speaks in silence Lord
but I can't hear 
Through the noise that invades my mind
I reach up my hands but their emptiness hurts

I don't feel your touch on my life

I'm beyond caring Lord just break my shell
smash into my emptiness
with the gentle strength of Your Spirit Lord
So I won't be dry no more.

Pain is preferable to nothing, although it has
Taken my soul many years to admit it
And I do not know the way
Lead me Lord in the way everlasting
Bring me back to life
Life in You as the only life
Worth living
Holy Lord
Be here

Friday, 10 October 2014

A bit of a side step for World Mental Health Day

It is World Mental Health Day, well for another three hours or so, and I've been brooding all day and decided to throw in my three pence worth, heavily influenced by my own experiences, rather than any sort of expertise.

As much as faith, and my faith community, are a life sustaining force, church can be a bit hit and miss when it comes to Mental Health. Even a really good church, working hard to live out the Bible in an authentic way. Anxiety in particular can be a sticking point:
  • ·         Ah, we all worry from time to time, that's normal, just keep giving it to the Lord
  • ·         Pray more, worry less
  • ·         Just cast your burdens on Jesus
  • ·         Just put those worries at the foot of the cross
  • ·         If medication doesn't work, just go back to the back of that course book, the prayers in there will help

These comments are all well meant, and also mostly very true, when it comes to worry of your every day common and garden variety. 'What if mortgage payments go up? Will Mother cope in that house on her own? Did we pick the right school? What if I get made redundant?' Your average 3am fretfulness. Yeah, I get that too. But that's not anxiety. That's normal worry, and THAT is the kind you can, and should, cast upon the Lord and He will take care of you. And I try to do it, with the typical variable result of a saint who is still very much a work in progress.

Anxiety is when your child has had a snotty nose for three days and while he tears around the house with his dog, happy as Larry, you sit on the edge of the sofa, paralysed, with just this obsessive compulsive thought going round your head 'He has leukaemia. He is going to die', round and round and round. To the exclusion of everything else.

Should I also cast this anxiety upon the Lord? Most definitely! Am I able to do it when this obsessive-compulsive anxiety really has a grip? No. Can't even fish a teabag out of a mug. It's an illness. It has ugly causes in my past and needs treatment in the here and now.  

Just bear in mind when you suggest 'just casting it upon the Lord', that this is the same as telling people to cast broken legs, cancer or diabetes onto Him. Just because it's in my mind doesn't mean fixing it is any easier! You would not tell people with a physical illness that a bit of prayer will fix it and you would certainly not suggest that they stop treatment and 'just trust in the Lord'. And yet, with mental health that is somehow ok? Depression and anxiety are so often painted as a lack of faith, a lack of trust in the Lord. Let me tell you, when you stand helplessly by the incubator containing your terrifyingly sick newborn baby, you either trust the Lord, or stop believing. So don't say I don't trust the Lord enough. I do. He has never given me reason not to. I simply have a mental illness that I didn't ask for and cannot fix on my own by just praying a bit more. 

God could choose to heal me instantly, through a miracle. He doesn't always. He worked a few in my son's life and that is more than anyone can ask for in their lifetime. Our God is a relational God and we are relational people. That clearly shows in the things that are making me get better, and I believe these are the means God puts in place to heal me at this time:

  • ·         Friends to talk to and pray with, and who pray for me
  • ·         A remarkable GP who in the current climate makes time to listen and care
  • ·         A good ('secular'!!) counsellor who is properly skilled in Cognitive Behavioural Therapy
  • ·         Medication, that gives me some rest and allows me to cope with therapy, and find my balance again. (Yes I need it, no it doesn't change me, no it's not addictive)

I have every hope of beating this again and feel better in and about myself. That's not given to everyone. Mental illness can be lifelong. Medication can be necessary for life. That can be hard to come to terms with. Here's a simple test: Before you decide to suggest something to someone about their mental health, ask yourself 'would I say this about diabetes too?'. No? Then think again. 

Wednesday, 4 September 2013

Humour will see you through!

A much needed tool in the toolbox of a parent with a child with special needs, and at times the only one that will get you through, is humour. I'm delighted to share a prime example, written by my friend, fellow special needs parent and author Mel Hodgkinson. It cracked me up, hope you like it too!

"Jacob came home with his class weekly timetable today. Parts in brackets are my additions .

Personalised Focus Work (aka "please just sit still for five minutes. No, focusing personally doesn't mean admiring yourself in the mirror."

Registration/Communication. (aka "is he still in the room? I turn my back for three seconds ....").

English (aka - this is where Jacob expands his vocabulary as he debates whether he should be participating in this subject, or climbing on the radiators. Key arguments to include "okay then," "bye," "see you soon,", "never mind okay then", "later," "then later", "we will rock you" and "steamboat shenanigans." Teacher's response to be determined).

Physical Activity (aka- "this should help to calm him down").

PHSE - (aka - "Why we do not look down the teacher's blouse or grab great handfuls of the TA's hair and try and swing on it").

Maths (aka "do I still have all my marbles?")

Planned Social Interaction/Circle Time (aka Jacob maintaining his reputation as an international child of mystery by refusing to answer any question).

Lunch (aka "food! He keeps quiet and still when there's food!")

Physical Activity. (aka "well, the first bout of PE only served to give him a new burst of energy. But this time he'll definitely be calmer.")

Taught PHSE (aka "why it is not appropriate to look down the TA's blouse or grab great handfuls of the teacher's hair and try and swing from it.")

Geography/History (aka "where am I? When did I get here? Every thing's just a blur!")

Sensory Integration/Physical Activity (aka "what do you mean he's as lively as ever? Jacob, sensory integration does not mean picking your nose!")

Music with another class (aka "Jacob, stop drumming on the radiators. Get off the radiators. No, you can't play 'Another One Bites the Dust' on the Glockenspiel.")"

reproduced with permission

Tuesday, 6 August 2013

Have you ever seen one of the videos about Team Hoyt? If you haven't, read no further, just watch this very special father and son team in action. Here for example. Hoyt junior has severe cerebral palsy and expressed a desire to run. So Hoyt senior strapped on his running shoes. Now they run triathlons together with the father lifting, pushing and carrying his son. His son, he says, does the racing. He is merely his legs. If you doubt that, watch Rick Hoyt's eyes and body language as they race.

I ended up watching one of their videos again the other night, after sending someone else the link. And not for the first time I cried like a baby. And I ended up wondering what it is that makes me so emotional about it. Part of it is that I am blessed to live with a father and son team that, although at somewhat smaller scale, is remarkably similar. My husband Peter considers it his duty and joy to help Nathan explore areas where he cannot go by himself. The buggy is only used when I'm out with Nathan on my own. When daddy is around, Nathan 
travels on his shoulders and they go everywhere. The familiar image of my boys travelling together in this way is my very favourite one and actually, Peter is much harder to spot in a crowd without his passenger's blonde hair sticking out above, as that is what I automatically look for. Of course Nathan is growing fast and getting heavier, but Peter isn't ready to admit defeat just yet.

But there is something else about team Hoyt that really touches me, something deeper. And the other night I caught it. It was in the lyrics of 'I can only imagine', the song to which the video I was watching is set. 'Will I dance for you Jesus, or in awe of you be still'...'Will I sing hallelujah, will I be able to speak at all'.
Both Dick and Rick Hoyt are dancing to Jesus. While singing hallelujah. As yet another song says 'with arms wide and heart abandoned'. They are living their lives in front of God, squeezing every last drop out of it. And it is something to be jealous of. I don't quite manage that. My son does. Nathan lives with his entire body, as much as he is hampered by the cerebral palsy, and with his entire soul. He's in it. Totally in it. And nothing stops him. No wonder he falls asleep like a log at night, he is spent. He has rolled, crawled, fought, challenged, played, explored, learned and rough-and-tumbled his way through the day. I try to learn from him to be in the moment, in the day that God has given me. Somehow I find it hard.

Saturday, 15 June 2013

The pain of not being able to communicate

The last two Thursdays Nathan has come home from school in tears. The first week he was fine on the bus and burst into sobs on my shoulder just as the driver was saying how good he had been, the second week he started crying on leaving the last stop before our home. The cause: The person putting his splints back on after swimming not getting it right and him being in pain as a result. We found this out quite quickly, because the only other time something similar happened there was something stuck in his shoe so we went feet first and found indeed his heel several inches up and his toes squashed.

It is hard for most people to understand Nathan. He relies purely on his limited and unclear speech, not very keen to use signs or even the speech software on his iPad and he clearly had not managed to explain that his feet were hurting. The tears were relief that mummy and daddy would now make it ok. The second time he kept crying for a while after we took his splints off. We sensed frustration in the tears too.

He doesn't help himself though. Apart from the speech issue he is also currently obsessed with the scuff marks on the noses of his shoes. He says that his shoes are hurting. So apart from understanding what he is trying to tell you, you then have to figure out if his shoes are hurting or his feet!!

I phoned his longstanding and rather wonderful physiotherapist and like all good professionals working with children she listens to parents. A plan of action was quickly formed and splints are now checked several times a day in the classroom to prevent him being in pain, an attempt is made to get him to hand in a card to say his feet are hurting, a clinic appointment has been made to review his splints. New boots will be ordered. His physio has found that if you ask Nathan if his feet hurt he gives a pretty clear answer! So it will all come together again and another problem solved.

It's one of the toughest bits of having a child with special needs. Finding out they have been in pain and unable to do anything about it. You don't realise how much our society relies on verbal communication until your child cannot fully take part in life due to speech issues. Nathan is a fantastic communicator and has from a young age used everything he can (voice, facial expression, hands, body) to express what he wants. But sometimes what he says requires an adult to give him their undivided attention just at the time when he is trying to express something. And that does not always happen in real life.

He is a trooper and very determined. He will get there. But this is why we worry more about his speech than about his walking...

Saturday, 18 May 2013

An angry one - ASD and ADHD are real, deal with it

Crudely speaking Nathan is a classic example of the nice and acceptable face of disability. A cute little kid in a walking frame who smiles a lot. It is easy to feel sympathy for a child with a physical disabilities who just needs a little more time and help. Funnily enough no one ever stares at me with this 'Jeez, you are a rubbish parent, all your kid needs is a bit of discipline, mine would never have gotten away with this' look that is the daily diet of many of my friends whose children have less visible disabilities, like ASD and ADHD (or both at the same time!). Not only do these parents generally end up exhausted, looking after children who do not sleep when other children sleep or who are not able to entertain themselves for 5 minutes or who cannot be left to their own devices for a second for safety reasons. They also face a harder battle to get the support their children need (cerebral palsy is just that much easier to understand and measure). And on top of that they cope with a society ready to believe that children with behavioural difficulties are 'just naughty'. Their parenting is always under scrutiny from Joe Public who knows all about autism because he's seen Rainman and who doesn't believe in ADHD as 'these kids just need some discipline'.

One of my friends has just pulled the plug on her facebook account because she got what was effectively hate mail on her wall from people who had read a website suggesting that the man who defined ADHD (Attention Deficit Hyperactivity Disorder) had said on his death bed that it was all lies. He didn't say that. He expressed his concern that more children than necessary are medicated. That's a different game altogether. Snopes explains it here. I've read the original article in German. It doesn't say he thinks ADHD is fake. What makes people think they can hound a parent of a child with Special Needs with 'proof' that the child's special needs are fake in the first place? No one would tell me that Nathan doesn't really have cerebral palsy and that he could walk if we just refused to put him in his walking frame. It would make no sense. In the same way it makes no sense to tell a parent whose child has no 'off-switch', who is oversensitive to every external stimulus going, whose world ends if the recipe of their favourite baked beans changes slightly, who never seems to sleep, who cannot concentrate at school, and who does not know how to communicate with peers, who will only watch one and the same video over and over again or who screams very loudly trying to drown out the stress that their child does not have a real disability just because you've read something somewhere.

Let's play it straight. Nathan gets DLA. He gets Mobility at the higher rate, as he can't walk. He gets Care at the middle rate because he goes to bed at 8 and stays there until 7. So we get down time, and sleep. Some of my friends' children get Care at the higher rate because they struggle to go to sleep, wake up a lot and happily start the day at 2am. Now you choose, the extra money or the sleep? Yes, I thought so. I wouldn't swap either. Nothing gets you down like never having a good night sleep or a decent break. It wears down your sanity.

ASD (autism) and ADHD are real. Very real. Tough for the kids and tough for the parents and for siblings. Believe it. Accept it. Don't let government rethoric and media frenzy tell you what to think. Use your common sense and understand that other parents also love their children and also know how to use appropriate discipline. That they do not need your parenting advice and judgementalism. If you do not know anything about the difference between meltdowns and ordinary temper tantrums it's easy to find out more. Like here. Children with conditions like ASD and ADHD need your support and so do their parents. There will be at least one child in your circle of friends and acquaintances with a problem like this. Your understanding of what it is like will mean a lot.

PS: Rainman. Famous film featuring Dustin Hoffman as a man with autism who is also madly clever with cards. My first encounter with autism. Responsible for commonly held belief that every person with autism is also outrageously genius at something. This is not true. Only a small percentage has a gift like that.

Sunday, 28 April 2013

Speech, questions, hope and jokes

People, friends and strangers alike, are always commenting on Nathan's wonderful smile. From a very young age he has had the ability to light up a room or the face and heart of a grumpy adult with no effort at all. Turning on the beam, they call it. And people call him 'smiler' wherever he goes. Whereas this smile is an expression of his very sunny nature, it also has a second function: Nathan struggles to speak with clarity and is well aware of that. He is bright and so knows that people who don't know him well will not easily understand him. So he uses his smile as his preferred means of communication: 'Hi, are you nice, I like people, I won't say much, but I will beam at you, because I am a very sociable person and I love making contact'. More recently he will confidently say his name to most people (pronounced  'Naynan', so in need of translation at times), add his age (five!!!!) and will say something about whatever toy he is clutching (usually a train or a car).

Speech is an essential part of our communication with each other, an important tool to get by in our society. It's therefore no surprise that Peter and I are more concerned about Nathan's trouble with speech than we are about his mobility problems. It is easy to underestimate Nathan if you judge him by what he is able to say. His speech problem is caused by unwilling muscles not getting the right signals from his damaged brain, it is not in any way linked to his understanding. It does also impact on his reading progress. Thankfully he is at a fantastic school where specialist teachers help him learn as much as possible despite the speech trouble, as well as work to improve his speech and other forms of communication. We thank God (and the wonderful Family Fund) for his iPad, with its specialist speech software - think Stephen Hawkin with pictures- that can also be used to practise reading and writing. And we rejoice in small things that others take for granted.

Every school holiday we are bowled over by the progress he has made with his vocabulary and clarity since the last one. This is because when he comes home after a long school day he has no speech energy left, so we get limited language. It means a step change for us every holiday, catching up with new words and sentences and the quirks in pronouncing them ('tooden twing' took a while until I saw the wooden swing he was referring to...).

To our great delight he has just started asking questions. I am not yet tired of 'mummy doing?' 'Daddy doing' and  'Andy doing?'.(It might yet come, after all I always said I would never lose the plot with 'Mummmyyyyyyymummymummymuuuuuuuuummy' after waiting for 2.5 extra years to hear the magic word and that didn't last..) It means that we have a whole new way of having conversations, and can bring in lots of new vocabulary. It's wonderful!

And our practical joker has started to crack verbal jokes. Maybe not very funny to the ordinary hearer, but amazing to us. Nathan sits all the way at the front of the school bus and when one of the teenagers in the back called him recently he yelled 'I'm not here!!!!' It is amazing to hear him use language for pure fun and nothing else.

And so we thank and praise God. And keep hope. And will him on. And do what we can to help him fulfil his full potential.