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

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.

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...

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.

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.

Just a minor procedure

Sometimes being mum of a child with special needs can make you feel extra vulnerable. After a day and a half in A&E earlier this week I am now waiting for an operation to have my gall bladder out. A straightforward procedure, keyhole surgery, day admission only, home the same day, just a few weeks to recover at home with no lifting and straining. Oh that's ok then. 

Hang on.

<rewinds tape>

Say that last bit again?

A few WEEKS with no lifting and straining?

<major panic>

For most people the no lifting and straining is straightforward enough. No lifting boxes, no carrying shopping. For me it means not being able to lift and support my 5 year old with cerebral palsy. Eek. 

Despite the cerebral palsy being one-sided and mild, Nathan needs to be lifted in and out of bed, onto the floor, onto my lap to have his teeth brushed, supported in standing to be washed, placed on the floor, dressed and undressed, lifted in and out of the bath, carried down the stairs, supported walking up the stairs, helped in and out of chairs, on and off the sofa, lifted in and out of his high chair, supported on and carried off the bus, lifted into his car seat, lifted in and out of his walking frame, trike and buggy, there are still nappies to be changed and a myriad other moments in time when he needs to be picked up or otherwise supported. And there are the all important and much hated leg stretches. 

I have a wonderful husband who pulls his weight anyhow and will do whatever needs doing for those weeks. I have wonderful friends who will chip in if needed. But like many special needs family, in ours things work just so as long as they work. It gets a lot more complicated if the child in question has autism or behavioural difficulties as that will often make it much harder for others to help out, so we are lucky in that respect.

So yes, it's a minor procedure, and everything will be fine. But maybe this explains why I'm just a little bit scared and worried!

Fault, blame...and guilt

Fault, blame and guilt. The triad of unhappiness with guilt possibly the most destructive of the three. Guilt is part of every parent's life. Not enough play/read/listen time? No healthy, balanced, home cooked meal seven days a week? Not enough money to give them everything you want them to have? Familiar and normal. 

Feeling that you somehow should have been able to prevent or fix your child's disabilities? Familiar yes, familiar I reckon to most parents with a SN child. But normal?

I've done battle with it for a long time. My Nathan was absolutely fine until possibly the beginning of my long labour or even slightly before. He had more or less recovered from whatever had hit him as he was pink and bouncy at birth, not blue and floppy. This makes him a bit of a rare case as most similar cases happen through oxygen deprivation at birth. That's why it took them five days to find out why he kept having seizures in his first 48 hours - significant brain damage. My consultant's best guess is that my body doesn't cope well with labour and triggered an inflammatory response in Nathan's brain. So I felt I had let my precious baby down. My womb should have been a safe place, and it wasn't. At some point it became a dangerous place and there's nothing I could do about that.

A few years later I had a very early miscarriage. A good friend, knowing me well, said 'Make sure you don't blame yourself'. Which is exactly what I was doing. I hadn't kept the first one safe, so what made me think I could keep the second one any safer! It's worked through and behind me now, but that has taken a lot of time and a lot of pain. And so much wasted energy. At least now I only feel guilty about not doing his stretches enough, not spending enough time doing exercises, not spending enough time practising reading and talking...ah the usual gumpf. 

Blame and fault are another game altogether. I have friends who are struggling with feelings of pain and anger towards medical professionals who didn't listen, didn't act, and then didn't take responsibility. It leaves them with an ongoing sense that it needn't have been this way. I feel grateful that I don't need to struggle with that. On one hand we all make mistakes. I make mistakes. If my mistake affects a client I grovel to the Court and ask for my client not to be prejudiced by my error. There is precedent for that, senior judges have said over time that clients should not be prejudiced by the mistakes and oversights of their representatives. So that sorts that. Me being embarrassed is ok as long as the problem gets fixed. A doctor or midwife making a similar mistake can have consequences that cannot be fixed. Oxygen starvation, brain damage, disabilities. A doctor or midwife doing so on an overcrowded, badly run ward while refusing to listen to the mother who thinks something is wrong is a tragedy for all concerned. 

A woman is very vulnerable in labour. I remember lying on my back, helpless, connected to drips and incapacitated by an epidural while my baby got tired and distressed. I was confused, scared and totally dependent on the judgement of others. When I met my obstetrician some time after birth he put Nathan's heart monitoring sheets on the table and said I could probably find someone who would say that I should have a c-section much earlier in the labour. He was an experienced expert-witness, I'm a legal bird, it made the conversation easier. Crucially I feel that (unlike many!) I had good care, I had at least one midwife with me at all times, was given options and choices where possible and was clearly told when it came to that point that my baby was too tired and needed to come out now. I know I was monitored by a doctor for quite some time and I believe that a careful judgement call was made. Maybe a mistake was made, although I am inclined not to think so. I feel able to say that mistakes are made, and to let it go. I do not feel and never have felt an inclination to sue the hospital. 

For some parents not suing is not an option, not because they are such vindictive people, but because their child has been left so profoundly disabled that 24h care is needed. Suing is then the only way to make sure that care will be there, because social care budgets simply do not stretch and as a result it is rare for anyone to get the care they need and deserve. So in a real way the NHS' insurers pick up the tab for the care the welfare system should be providing. False economy? With the current vicious cuts in funding this will only get worse with more parents being forced to take legal action to provide for the care needs of their children.  And a culture of blame against medical professionals continuing. Not good for anyone. 

So what am I trying to achieve with this rambly post?:

I'm calling those fellow parents of SN children to stop blaming themselves, to stop feeling guilty. If you could have prevented your child's troubles you would have done. You are good like that. 

I'm calling for grace and empathy for overworked midwives and junior doctors who staff underfunded, understaffed, exhausted maternity department and end up making errors of judgement. 

I'm calling for the government to stop funding managers and targets and to spend some money on the staff that is actually needed on the wards. 

And for a universal amnesty on guilt. Guilt is like a thief in the night. It robs you of joy and leaves nothing in return. Grace not guilt, that's what I say...