I Your’s

Mostly last week while away together, Joshua said ‘I like you’ as his favourite phrase and it was hard to get him to say much else, although we did have occasional mentions of ‘Joshie’. But when we got home and I was removing his bulky boots, he said my favourite phrase of his : he stared into my eyes and he uttered ” I yours” and my heart swelled, ‘ Oh yes I agreed, you are mine’ and I gave him a big squeeze and I have not heard him say it again since, so it was deliberate choice to say that then, and not random repitition. I have taken it to mean that he knows where and to whom he belongs and that is very special, in a world where we are really not sure what precisely he knows and understands.

We have always maintained that he understands so much more than he can express and he demonstrates that, daily. He had taken to going to the back of the kitchen door and pulling at his apron hanging on a hook there, to indicate that he is hungry as he wears that at mealtimes. He holds his feet out, on demand, to have his socks put on in the morning and to have his boots removed when he comes home from school. I had warned him that it was back to school yesterday, his first full day there for over two weeks, and he raced outside to board the taxi on coming downstairs, without  a backward glance.

So he undertstands much of what we mean but I do not understand all of what is going on in his head. He will have been delighted to see everyone at school again, but instead of positivity in his home/school diary, I read with sadness that he had “hit and kicked two members of staff today”, so something was not right with my gentle giant. I am not sure how to respond to that news : do I apologise? try to explain the inexplicable? Make excuses for him? I am really not sure. I would normally say that he hits out – and he does smack me occasionally – to gain attention, but the diary says that this was not the case. I love to read that he is happy at school but this diary entry suggests that all was not right yesterday and I am trying to second-guess what he was trying to communicate in this behaviour. I am hoping that it was a one -off and that he moves back to his high-5s or hugs or onto something else next, as he knows that hitting and kicking is not acceptable.

A People Person

I am always really touched when total strangers show an interest in Joshua and his story and two did yesterday : I was working in London yesterday afternoon and I met a new client, we had communicated by email before and had spoken on the telephone but had never met. We met in a cafe , for my project briefing, and I learned quite a lot about her life and her family situation through facts that she volunteered as well as due to questions that I asked. She is a french lady , who married an Englishman, and they have a grown up daughter who now lives and works in London. We both are professional market researchers and so we are both expert at asking questions to find out key information and soon she was asking me too about my family situation…

I told her about Joshua, she already knew about his epilepsy as I had had to move a telephone call once when I had to dash to his rescue, but she expertly found out about his medical history and how that impacts on his daily life. She was skilled as I found myself opening up to her and she did the same to me; telling me how she might be looking for a career change and how her daughter had asked to finish her education in the UK, when she was just 15 and she left her parents living in France while she came here to study. It is a key skill to appear to be interested , without seeming to be too nosey, and that is something that after 25+ years of asking questions professionally, that we both had in common.

But after our work we shared a taxi to the station, she jumped out en route to head off a different direction and I carried on to Kings Cross. So the taxi driver and I began chatting, generally at first about navigating around and driving in London. I explained that I knew the walk from Kings Cross to Great Ormond Street well from all of the appointments with Joshua. He was also  a proficient poser of questions and he asked about his surgery and whether or not it had been successful. We had quite a chat on the way to the station and as I alighted, he wished my son all the very best in the future.

I was made emotional by this stranger’s interest and kindness. I will never see him again but he took some time out of his day to find out more about our lives and he actually listened too – many people ask because they feel that they should, but they do not really listen to the response . It struck me, for the first time, that taxi drivers and market researchers have something in common, they are both people businesses and you probably have to like people in order to be good at the job. While he can be a decent driver without chatting to his customers, and some people might prefer that, I cannot do my job well without liking people and wanting to find out more from them.

Manners maketh Man

Joshua used a key phrase all weekend, which I loved everytime he said it : he kept saying “Thank you!”. He used it regularly in context when I gave him something and so it felt as though:

  • He was being super-polite, which I always love
  • He appreciated, at some level, what I was doing for him rather than taking it all for granted
  • It was some form of conversation exchange – he would thank me and I would reply ” You’re welcome!” and he would beam and giggle
  • It felt so much more meaningful than some of his other phrases like ” no glasses” or  ” no pants”!

I kept trying to video him saying ‘Thank You’ so that I would have a record to share with others and also, to have a record to keep for myself in case this week was a one off and he reverts to something different next week.

I love to hear his voice, to be honest, whatever he says but this is special. Joshua talked before his epilepsy took hold : he said his first spontaneous sentence in the car and I had to pull over to celebrate it, when a little voice from the back seat said ” I like dolphins!” I spun around and told him that I loved dolphins too. I also remember the first time he spoke to another child : we had rushed lunch to get to a local ‘Mother & Toddler’ group and as we got out of the car I saw his orange ‘spaghetti smile’ and commented on it to him. As we entered the village hall, Joshua sought out his friend, Molly, and ran up to her and said ” Look at my face!” and of course I cried and cried with pride.

Then the demon epilepsy took his voice away, he became mute for years and gradually he has acquired some language back and his vocabulary has expanded over the last 18 months . I talk a lot and so I worried endlessly when he lost his vocal ability as to me, communication is key and he did not have the manual dexterity to manage sign language. Even when he was mute,however, Joshua was always able to make himself understood somehow, but this phase of talking makes me very happy, as he can express his personality so much more easily through language, rather than just pointing to what he wanted.

Given that Joshua had language, then lost it and has now clawed some back, I never take for granted that he will always have this skill : I try to enjoy it while it is here and to record it for posterity, as it is often hard to remember what he was like. I have a video of an excited 3 year old Joshua bouncing and skipping around the deck of a ferry on the desktop of my laptop and for the entire video of two minutes, he is talking constantly and I watch it every week, to remind myself of what young Joshua was like and what he was capable of. 17 year old Joshua does not yet have that level of language, but he is adding more vocabulary everyday or so it seems. Onwards and upwards my son!

Speak my Language

I recognised how far that we had come in terms of relating to young people with disabilities , when we were out for lunch last week in a garden centre. Both my husband and I noticed a young man with an Ability Dog – a gorgeous chocolate labrador called Sheriff. It was not clear what the young man’s disabilitiy was but he sat down at the table  close to us, waiting for the rest of his family to order and collect their food from the counter. I kept catching the dog’s eye and he only had to look at you and burst into a happy tail-wag. They made a happy, companionable scene together.

After we had eaten our lunch, my husband went up to their table to say hello to Sheriff and the family and he was asking about this Ability dog, both the yong man and his Mum answered the questions and I too went to have a chat afterwards, then we introduced Joshua to Sheriff. Now probably the dog gave him confidence, but 15 years ago, my husband would not have approached this family. When we first looked around Special Schools ten years ago, My husband was very uncomfortable around children with special needs, he did not know how to react and the experience upset him too. But now here he is having an unecessary conversation with an autistic teenager, he high-5s and dances with Joshua’s peers at his Special School disco and he has read stories to a class mate of Joshua’s, while he sat on his knee when they came to our house once. He has certainly come a long way, probably due to experience over the years.I was always more comfortable with children with disabilities but was wary of teenagers and young people, as I did not know how to be. In fact when I first volunteered at school, I confessed this discomfort to the Head, so she threw me in at the deep end and assigned me to a class of seniors who were 16+ and I learned how to adapt.

It is always interesting to me that the people who engage with Joshua when we are out and about, usually admit to having some link with disability – a sister with cerebral palsy, a brother with Downs , teaching in a special school or prehaps working with adults with learning disabilities. Those who do not have that connection, possibly find it more awkward to know how to respond and stay away. From my perspective, if you met Joshua in the streeet and wanted to engage him, these are tips that I would give you :

  • Eye contact and a smile is key, these are Joshua’s visual clues that you want to engage. Then see if he responds, he almost definitely will, as he is scanning most of the time for someone to engage with. It is helpful if you are on his level if he is in his wheelchair as eye contact is essential so that he knows you are addressing him
  • Speak to him directly – there is no need to ask my permission – he will either acknowledge you or not, if he is not in the mood
  • Speak clearly, do not confuse him with too many words and actually allow him the time to process what you are saying and process his response. Too many people are uncomfortable, so talk too quickly and they hate silence, so they fill it with their own words Joshua needs more time than most to process and to formulate his reply
  • Laughter and humour is a big part of Joshua’s communication, so he would love to feel like he was in on the joke or a tease
  • Joshua might repeat what you have said, while he is processing it. There may well be alot of repitition in your ‘conversation’ but let there be give and take, you should both take your turns at speaking and listening.
  • Joshua may well say something random in is attempt to communicate, do not read too much into that, it may just be his word of the moment and could be unrelated to what you have just asked.  At the moment he is saying “tummy” and lifting his tshirt to flash his belly at people. We have been trying to discourage that so it would be important not to encourage him by reacting too much, we try to ignore that behaviour. But it could equally be ” no way!”

It is difficult I know, but you need to comminicate with Joshua at his cognitive ability: Joshua is a tall, slim, handsome 17 year old now but he has the brain of a toddler. So most of these communication tips would work equally well for a toddler. I am not suggesting that you enage in ‘babytalk’ with him but you need to reflect that although he looks like a teenager, if you want to communicate with him successfully, you need to reognise his special differences and reflect that. But I promise you, if you were fortunate enough to meet Joshua in the streets, when he was in a fun mood, he would lift your spirits ,so it is worth investing some time into getting that interaction right.

Sharing words

Communication is one of life’s gifts to bridge the miles : Talking over the phone, exchanging emails and texts and writing letters, I did them all yesterday. Although I enjoy the electronic media of this blog, Facebook, email and Whatsapp, there really is something special about receiving a letter or card through the post I think, yet it seems to be a dwindling art.  I enjoy reading and re-reading a card and putting it up on the mantelpiece to admire. I also re-read emails as a record of how someone was feeling in a moment of time, which I enjoy, but they are still no substitute, in my view, for a handwritten document that someone has gone to the trouble of writing and posting. We received a postcard from my sister’s holiday on the day that she was setting off back home and I already knew their news as we had been in contact daily, but I still love to receive a holiday postcard as it signifies somebody sharing their holiday joy, while showing  that they were thinking about you. I beat my Texas postcards home, but that was still not the point and I re-lived my trip when I read my words home.

Joshua has been deprived of the ability to read and write, so he will not send me a postcard, email or a letter in the future. It is not fair or right that Joshua has been deprived of one of the joys of my life, but that is my interpretation only, Joshua has never known any different ; His verbal communication is pretty limited, but is very effective. His few words express his basic needs : ‘mummy’ ‘daddy’ ‘cake’ ‘No’ ‘Show’ ‘bath’ ‘bed’ and ‘Go’. He can get quite a long way with that vocabulary . But  he relies upon non-verbal communication to express how he is feeling : he beams and glows when he is happy and similarly, effectively withdraws when he is not impressed by bending double and going to sleep with his face on his lap. Joshua makes it very clear who he likes and who he does not like, being very generous with hugs, and even kisses, with his favourites.

I am pretty certain that Joshua does not feel deprived by not having the ability to read and write, and unlike some of his peers with special needs, he does not currently exhibit their frustration at not being understood. While his needs are being met, Joshua appears to be content enough with his life, which is the best that I can ask.