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.

Last night Nathan said 'Nathan'. Almost five and he's cracked it, he can say his name. I admit it, I squealed. 

We've had long times of saying 'no' when asked for his name, then he called himself 'Naynay' for a long time. In the last month or so there was a shift to 'Naynen' and then finally last night the 'th' appeared. He beamed with pride. 

Some cliches are true. The one where they say that it may be tough to have a child with special needs, but that you will never know joy like the joy you feel when they achieve things that others take for granted. That one is true. It is very true. 

He managed to pull to stand over Christmas and oh my the whole world was told about it. It's the first thing I said walking back into the office after the break.

There simply is no joy like it. And it way outweighs the occassional bouts of heart ache watching him struggle with things. 

List of things that you don't expect to come with your child when you're still pregnant and dreaming:

Walking frame (First Rifton Pacer, now the far more exciting bright yellow R82 Mustang!!)
Tripod walking stick
Specialist Trike (Possibly the only non breathing thing we would rescue from burning house)
Leg splints
Oversplint boots
Kneepads
Arm splint
Botox injections
Juni chair
Size Two Mountain Buggy age 5-9 (when folded almost too big for even my boot)
iPad with speech software (Think Stephen Hawkin with pictures)
Physiotherapists (let's hear it for the amazing Heather and Julia who have looked after him for nearly 5 years now)
Occupational Therapists
Speech therapist
Paediatric Consultant
Orthopaedic paediatric surgeon
Fantastic special school 
Specialist school transport (Jackie and Dermot are the best)
Disability Living Allowance applications
Motability Cars
Blue Badge (A blessing and a priviledge)
Ignorant Health Visitors
Statement of special educational needs
Home-school books
Referral forms, application forms, charity grant forms

But hey

Who cares. We've got this. So worth it. 

Have you heard of the poem 'Welcome to Holland'? It is about how it feels to find out that your child is autistic but can just as easily be applied to many other disabilities. If you do not know it, you can read it here. As far as I know parents of disabled children either love it or hate it. I must confess I really do not like it. Life with Nathan is not, and will never be, a second choice destination. He is a true gift from God and my perfect child. The best way I can sum it up is 'I never felt entitled to Italy', with Italy presumable meaning having a child that has 'nothing wrong' with it. Children are precious gifts, whether or not they can walk, whether or not they are autistic, whether or not they have behavioural challenges. It does not change their value as a human being. My life would not have been better, richer or nicer if Nathan had not been brain damaged. Easier maybe. But not better. It would have been very empty if he had not been born. 

A child is always a gift, whether 'perfect' in the eyes of the world or not. No one knows that better than those who have experienced or still experience the pain of childlessness. Except maybe those of us who are given a child with special needs (please do not say 'Special babies for special mummies within my earshot. That would be a very unwise thing to do. I can explain if you wish). Those who need to face up to the fact that there are people out there who think that their child is second rate, should not have been born, is a burden. 

A child is received by raising empty hands to God, not by going to a dealership and ordering size, colour and specification. A child is given. 

My Nathan is perfect. I've just been to check on him as he sleeps and yes I can confirm he is perfect. He is my baby, my miracle, my 

''Gift to me
A song that's free
Coming Down in Time and Season
From a higher place
and higher ways
and a Love that gives no reason''
(Martyn Joseph, Gift to me - this is my Nathan song, I sang it to him when he was inside me, when he was crying as a baby, and at his baptism). 

Maybe there are people who firmly plan to go to Italy. They will come a cropper one way or another. Their child is bound to disappoint them one way or another, or life will. Me, I am blessed. Truly and utterly blessed. And in love with my amazing child, who was fearfully and wonderfully made. (Psalm 139)

Getting tough with the outside world is one thing, getting tough with my own child is also not something I had signed up for. From the age of 6 months old, when the suspicion of cerebral palsy was confirmed, physio commenced and stiff hamstrings discovered I have been doing daily hamstring stretches. Making your child cry on a daily basis by hurting him is Not A Fun Thing To Do. Having your son use his limited language skills to plead with you not to do the stretches just sucks, there is no other word for it. The orthopeadic consultant saying Nathan's hammies are looser than his own mollifies a bit, but doesn't make it easier. All you can do is pin him down, persist, keep explaining that it is to make sure he can crawl, hop around, pull to stand, walk and ride his trike. Which he may understand but certainly does not appreciate in the moment. It's a surprise he doesn't hate me frankly, although the carefully built in ritual of hugs and cuddles after may have helped with that. 

Perhaps unsurprisingly it leaves you a bit puzzled when a mate tells you that she cannot get antibiotics into her two year old because said child doesn't like it and wriggles too much! 

Less dramatically it's sometimes necessary to be tough to help Nathan practice his skills. 'Want on sofa', ok then honey make a start, use your arms and legs, pull to stand then I will help with the last bit. No? Ok then stay on the floor. Strop. Ignore. Strop. Ignore. Pulls to stand, I help, I win, skills practiced. When he had just learned to sit himself up he would often find a suddenly very necessary toy just out of reach and would grunt at me to get it. And I would say 'You will still be disabled when you are 18, get on with it yourself'. Helping doesn't always help. 

Although that time in the supermarket car park when I told him to 'Help me to get you out of the trolley, you are not THAT disabled' I did see a few shocked faces! But you have no choice. Your aim is to help your child to become as independent as possible with a view to the future, and if that child has significant challenges you cannot leave it to happen all by itself!

How I became a mummy bear

Here is the picture that made me decide to start writing this blog. Because I never set out to become a mummy bear. I was such a nice Christian woman. Not that assertive despite being a lawyer. Likely to accept what others told her. Now there is the wonderful and nearly 5 year old Nathan who popped out a bit special. He has cerebral palsy on the right side of his body meaning he cannot yet walk without support and he struggles to use his right arm at all. On top of that the muscles in his mouth don't work well and he struggles to express all the thoughts his bright little brain is thinking. An independent and rather determined young man he is still vulnerable and needs protection and support. 

I first became aware of the need to become a mummy bear when he was just 4 weeks old. He had come home from hospital a week or so before and was discharged on anti-convulsant medication as he had neonatal seizures. In hospital he had been getting special paediatric alcohol free medication. Now he was 'in the community' suddenly that was not available basically because the computer said no. At first I accepted it, but it niggled away at me. One evening I did the maths and worked out that he at 4 weeks old and weighing less than 4 kilos, with a liver that was already recovering from whatever trauma had also damaged his brain, was being given the alcohol equivalent of half a pint of beer a day. In a health care system that dictates that children must be given drugs full of artificial sweeteners because sugar is bad for their teeth they happily gave my baby alcohol. I got A Little Upset. Which cumulated in me having a tearful meltdown in a busy Boots chemist. 'I Just Want The Best For My Baby'. With a sympathetic pharmacist on my side I found out about special, handwritten prescriptions for more expensive drugs that are not on the computer. She found out what drug Nathan needed and gave me paperwork for the GP. I wrote a heartfelt letter to the GP. I got my handwritten prescription from the GP and my tiny son could now supplement his breastmilk with alcohol free medication. I sat back a bit stunned. Pleased with my achievement but shocked at this need to fight.Blightely having assumed that everyone else would also do their best for my baby. Little did I know that the fight was only just beginning...