Keeping Faith

I wrote about Joshua’s vision the other day and how it was compromised.  Another one of his abilities that has come and gone over the years, is his speech. We were warned when he was 4 days old that he may never speak and so, when he was a toddler and he began to communicate, we were delighted as we hoped that it was just another false alarm and a skill that was slow to develop but that would come good. Joshua had a limited vocabulary but he had some useful phrases like ‘put some more in’ when he wanted more apple juice or ‘it needs batteries..daddy do it’, when one of his toys broke. So he was able to communicate about the things that were important to him and he made slow progress.

Then when he was 7 years old, he lost that ability and he virtually became mute. We had reduced one anti epileptic drug, in readiness to try another and while he was on minimal medication, he suffered severe seizure activity. We hoped that it was the new drug that was taking away his voice, but when his speech failed to re-emerge, the consultant confirmed that he thought that it was the seizures that had caused further damage to the speech part of his brain and that the loss was permanent. That news was a devastating blow as he had worked so hard to overcome the brain damage from birth and to be able to communicate, that this seemed to be particularly cruel.

Since then, his verbal ability has never returned to the level that it was when he was young, but it has come and gone over the years. Certain drugs seemed to impact on his language more than others and also, when he is exhausted from seizure activity, somehow he does not have the energy to speak. We had an exciting stage a few years ago when he was repeating everything he heard and so seemed to have a wide vocabulary, which was delightful : he was naming everyone in his class at school and using all sorts of words for the first time. But it seems that communicating takes up a large amount of brain power and so he cannot sustain talking  when he is mastering other skills. At the moment, his focus is on physical movement : he is walking so far, is throwing balls well and is kicking hard , so that seems to be pre-occupying his mind at the expense of too much language.

Most  children achieve a skill and then build upon it ; once they have mastered talking for instance, few, without an injury, lose that skill. But we have had to cope with the cycle of loss of language repeatedly over the years and we have to keep faith that it will return again, with encouragement. Joshua can show his cheeky , sociable personality through his twinkling eyes and through his actions, but his voice is a key way to portray his personality and I love to hear him speak.



The Past Tense

One of the things that I find hard to remember, even almost 8 weeks after Mum died, is to use the past tense: I wanted to write that she has a safe in her house, but then I changed it to had and then I got myself in a pickle. When I call people like her credit card company yesterday, they asked my  relationship towards Mum and I explain that I am her daughter, then I correct it to I was her daughter and then I get upset as I will always be her daughter, whether she is alive or not. Perhaps I am overthinking my use of language, but it is something odd that I still struggle with. Maybe it is because I am trying to override 52 years worth of language when referring to Mum and that is difficult to do. I can recall when I was first married, after being together for 13 years, I found it awkward and intuitive to call him my husband, as this was not a word I had ever used.

Mum has a safe in her house but we did not know the combination ; we have been trying to open iton each visit to the house, having three attempts before it locked us out. We were not sure what might be in there but the solicitor advised us to employ a locksmith to get access to the contents, whatever they might be. So after my meeting nearby yesterday, I went back to Mum’s house where I met the locksmith. He tried to pick the lock and then finally, he drilled it out. He called me upstairs to open the safe and we found lots of documents hidden away in there : Mum’s missing passport, every PIN number she had been sent by the bank, her senior railcard, a wax seal and  a silver £5 coin. So that was a relief that it was not empty and the mystery was solved.

I then began to look in a few drawers that I had never looked in before and I became lost in old photographs and a lovely poem that my sister had written to our parents thanking them for the childcare support that they provided for my young niece. I spent ages engrossed, sitting on the landing floor, reading Mum’s progress book, and reviewing gorgeous black and white photographs of her  growing up. Then I found some pictures of me and my sister, where, apparently, we look like our children. This trip down memory lane gave me a real sense of family and of time moving on. I saw in photographs, that our grandparents and parents had now gone, that my sister and I were now head of our family and that our offspring were the future. Mum had done all that she could to prepare us for this time by clever financial planning, by leaving her paperwork in order and by de-cluttering her house as much as she could, so now it is over to us to do the right things as she would have done.

Talk Talk

I have described how Joshua has defied the odds with his vision and his hearing, but his ability to talk has been more challenging and variable throughout his life. When he was about one year old, his favourite greeting was ” Hiya” and he used it plenty to anyone who would listen. When he started mainstream nursery and then school, he had some language. He used key phrases appropriately :  “Put some more in” when he demanded more apple juice, ” It needs batteries” when his toys stopped working, ” press that button” meant get a move on and ” daddy do it” when he wanted his father to fix something or if he wanted help.  I can clearly remember the first time that he spontaneously spoke when, he was in the back seat of the car and I was driving, and out of the blue, he said ” I like dolphins!”. My eyes filled with tears, I parked the car and turned around to tell him how much I liked dolphins too – that was our first conversation. We really thought that we were home and dry in terms of his ability to speak, he could count, name colours and identify animals and he was making progress, his speech was delayed but it was there.

But when he was 7, all that language stopped abruptly and he became mute. We hoped that it was a side-effect of his anti-epileptic drugs but once weaned off that drug and onto another, there was no improvement. His consultant eventually admitted that it was likely that seizure activity had robbed him of his language. If seizures are left uncontrolled, they can damage the brain further and the part of Joshua’s brain that controls his speech, had been under prolonged attack, while we weaned him off one drug and increased its replacement. So it was heart-breaking, his epilepsy  was not just agonising to watch and deal with, but it left a permanent scar on Joshua too.

We were heart-broken, as our cheeky, happy boy remained silent and his little phrases and even his funny pronunciation of the number 16 – he used to call it sickaleen – were all just dim and distant memories. With no language, his ability to fit in at mainstream school was in jeopardy. We worried endlessly about how he would cope and how he could get what he wanted and needed, without his own voice or if we were not there to be his interpreter. But without talking, he learnt how to communicate with pointing , gestures and using objects of reference and we resigned ourselves to the likelihood that he would be silent for the rest of his life. I resisted sign language, as I knew that he had been able to converse and I hoped that he would again one day.

But Joshua is a determined battler and over the last few years, he began to imitate at first, copying lots of words that he heard and repeating them endlessly and he would finish lines of favourite stories and songs. It was such a thrill to hear his voice after so long and so it would not matter that he would get stuck on the same phrase which was not always sensible or relevant, such as ” no glasses”, ” no pants” or ” I not poorly”. At present, Joshua’s vocabulary is pretty limited, with ” I like you” and ” thank you” being his mainstay, but relying much more on gestures to get what he wants and needs; But as I say, if you only have two key phrases, what lovely positive ones to have in your repertoire and he uses them to great effect.

More than anything, I would love to have a conversation with Joshua. To find out what he is thinking and how he feels . I am a good talker and listener but our interactions are one-sided. and I would love to share more with him. I know him well enough to intuitively know, in the main, what he wants or is trying to communicate. so perhaps we do not need words. But his life would be easier if he had words to use with the outside world. I still have faith that his vocabulary is locked inside his brain somewhere and at some point in the future, those words may well come back to the surface.When that day comes, we will rejoice and welcome Joshua’s language back with open arms. But in the meantime “thank you”, perhaps it is better to have had something and lost it, rather than never having had it at all.

Mind your Language

I am now, after yesterday’s course by St John Ambulance, a Mental Health First Aid Champion. It was a fascinating course and I learned a lot of new things. It was the perfect mix of listening and interactive group exercises and there was an interesting mix of attendees too. One of the exercises we had to write on a flip chart all of the negative words that are used to describe Mental Health and on another, the positive  words. It soon became very clear that there are many more insults and criticisms of a sufferer of poor mental health than there were positive references. It made me think that even when we think we are enlightened or aware, a number of times, even yesterday, I thought of using the phrase ‘are you mad?’, mainly in jest but even so it arose several times through the course of the day. I know a colleague of mine who used to tease her team mate who was attending counselling, she would joke ‘ Are you going to Mad class today?’!

Language has changed around disability and special needs too in my lifetime; when I was a child we talked about the handicapped, which is a really negative word, but not as bad as ‘crippled’ so perhaps we made some progress in the 1970s after all. Although I can remember at school that it was  a common insult to call someone a ‘spastic’ or a ‘retard’, which makes me shudder now. It is not a defence to say that we did not know any better and that it was common-place during my childhood, but language does change and develop.

I tend to describe Joshua as having ‘special needs’ or a ‘learning disability’ which is a gentler, more vague  description.I have also seen autism have adopted a new label to replace disabled , which is ‘differently abled’ which makes sense for this varied and complex condition and certainly has a more positive twist. It is interesting how the use of different descriptors though can come across as more negative or positive. There is a movement to use politically correct language when describing minority groups, but the problem is that language is entrenched and often you can be unaware that the words that you have been using are no longer appropriate. I am not sure if this is something that is taught in mainstream schools? How does society keep up and ensure that we are not unwittingly being negative, or worse being insulting, either about a sufferer of mental illness or someone with special needs?

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!