Hierarchy of Need

We had a brilliant day out yesterday with friends, Joshua and I went to the theatre to see a musical called ‘Club Tropicana’. It exceeded my expectations as it was not just full of 1980s music, which we were expecting, but it was a really funny panto-like show too. We had got seats at a good price, by going through a group that I belong to, of families with disabled, and ‘inspirational’ children. We met the organiser in the foyer to collect our tickets. Joshua was being difficult as he had rejected his wheelchair and was insisting on walking, which I usually prefer but when it is busy, the chair represents an easier option. But when we arrived at the theatre we were faced with a long queue and it became clear that he would not tolerate a long wait, as he began to try to kick out at strangers, so we created a ‘fast track’ system of our own and walked round to the front of the queue and down the steps into the theatre.

We collected our tickets but were told that we had to go back outside  and back past the queue, to  access the disabled/wheelchair entrance which was close to our four seats. Joshua began to object and tried to sit down, he thought that he had finally arrived at the venue and he did not understand why he was being taken outside again. We were offered lots of help as we both man-handled a bolshy Joshua outside, where we insisted that he need to get back into his wheelchair briefly. He was cross – I joke that he looks like The Incredible Hulk when he gets angry as his eyes blaze – and he stuck his legs out straight as I wheeled him round the building, as he hoped to target an innocent victim. But between us we negotiated our way through and to the back door,without hurting anyone, where we were welcomed and shown to our four seats . We were not at the end of a row but about three seats in and  a lady with her carer were on seats one and two. We explained to them that we needed to get into the row before them, but they misunderstood and went into the row and into our seats. There followed a difficult few minutes trying to persuade them out of our seats and out of our way. Eventually they sat in the first two seats of the row, hoping that Joshua could squeeze past them and then they suggested that he just stay in his wheelchair at the end of the row! Finally they understood that they needed to move out of his way totally and we wriggled along the row to our seats with a great view of the stage.

By the time we had negotiated our way into our seats,we were exhausted and so it was really fortunate that it was a lively, funny show to keep us from nodding off! I began to ponder why the two ladies had made it so difficult for us, when the queue outside had been so accommodating. I came to the conclusion that they were simply not used to giving way or making allowances for other people, they were used to being the disabled party  in need of assistance and yet Joshua’s need, at that particular time at least, was greater than theirs. They expected people to make way for them rather than the other way around.

Mostly the disabled community are very supportive of each other- as it tends to be us against the world – but I have come across this selfishness before. At school it seems that in some parents’ minds their need is greater than that of other families, as though there is an unspoken hierarchy of need . At school drop off/pick up times , in particular, some parents act as though their child’s physical disabilities have greater priority of, for example, a child with autism who is able to walk, but is therefore more unpredictable. This is ugly, selfish behaviour and sadly I think that is what was happening in the theatre too. Surely need should be based upon the individual situation as it varies and we should simply be more aware of others  and what assistance they need and offer it where we can. Having a disability or being a carer of someone with a disability, does not give anyone the right to trample over others but we all need to co-exist and help each other whenever we can. When we understand how difficult life can be, you would hope that it would make us more , not less, accommodating.

A hair-brained scheme

I am just back from taking Joshua to the hairdressers for his smart back to school trim. In the past these have been nightmare occasions when I have needed strong arms to restrain him and ear plaugs against the noise. But  this latest visit was very calm. I could not say that Joshua enjoyed the experience yet as he held a very serious expression on his face throughout but he did not thrash about in his gown or complain at the top of his voice. He had his eyes shut much of the time but he did not attempt to bite his finger, which is something that he does when he is very distressed. He only uttered a single ‘no,no,no!’ in protest but he seemed to accept his fate.

At one time, such a passive reaction could never even have been dreamed of and for that development , I am truly grateful. I am not sure if it is because he now accepts its inevitability, if he secretly enjoys admiring the smart results in the mirror, if he enjoys all the feamle attention or if we are all better prepared for the outbursts, but today was a much simpler and more relaxing experience than I was dreading.

I hope that our experience can bring hope to the parents who are still struggling with angry toddlers who are defying the scissors and are getting thrown out of barber shops, as we once did. My advice is to persevere and to seek out an understanding hairdresser who can accommodate your child’s idiosyncracies, without making either the child or parent feel uncomfortable. My son left the salon with gel in his hair and a smile on his face and he will adore the attention that his shorter hair will no doubt now attract. All is now well until his thick unruly hair grows back, but until then I am happy to enjoy this sense of real achievement and to offer hope.

Speaking his mind

I have been thinking about the array of words that Joshua has as it clearly shows what is important to him. Joshua used to have a much wider vocabulary than he now has, epileptic seizures deprived him of much of his linguistic ability. But he has still got key words in his repertoire that show what really matters:

Joshua can get our attention by calling for ‘Mummy’ and ‘Daddy’ and he uses these  everyday. Joshua somehow says our names in a variety of tones to indicate what he is expecting from us ranging from a gentle version which suggests love to a loud, demanding shout which is rather cross and is reprimanding us. There is also the heart-warming ‘Mummy’ that he exclaims when he is pleased to see me.

Joshua then has a range of words that he uses appropriately to ask for his favourite things, which are very useful : he can ask for ‘cake’, ‘bath’, ‘bed’, ‘show’, ‘tea’ and ‘Movie’. He will keep asking until he gets those things and so he has a range of requests as well as taking you by the hand to what he would like or taking himelf to the bathroom, for example, and running the taps is less subtle.

But Joshua is also very able to express his dissatisfaction as he has a very powerful and loud ‘No!’, so again you are in no doubt of his meaning. There are three levels of Joshua’s negativity : it begins with simple no, but if you persist and he is not impressed, then he will point and wag his finger at you while repeating his ‘no’. But if his wishes continue to be ignored, in the old days at the hairdressers or the dentist for example, then he will protest by biting his finger and then it is even more clear that he is not happy with the situation. This is a really helpful hierarchy of ‘no’s’ and it is a helpful guide to give people when they first meet him.

Joshua is not equipped to have a conversation with us but he still has sufficient language to be able to make his basic needs, wants and dislikes clearly understood and in that way he is more fortunate than some. It continues to be a thrill whenever Joshua adds a new word to his repertoire, he repeated ‘kiss’ to me the other night as I asked for a goodnight kiss. I have always believed that there is a store of words tucked away in there, just waiting to come back out again.

Muddling through

When Joshua was born, we were told to take him home and to treat him like a normal baby, despite his diagnosis of brain damage. The outlook was bleak but nobody really knew what he would or could achieve. So that was what we did and we were delighted when he passed his milestones as he proved that he could indeed walk, see and hear. It was easy to convince ourselves that he was going to defy the doctors and that he was going to be delayed, but would eventually catch up with his peers.

But at 4 years old, his epilepsy took hold and we had to start the trial and error process with medication. His epilepsy seemed to slow his progress down and became the biggest complication that he had to cope with. We had been warned by the GP that with his brain damage, epilepsy was very likely. But it was just a word then, nothing either of us had any experience of, and so we did not appreciate what it might entail for Joshua and the impact that it would have on his development.

It is odd how you can be thrown into the world of disability in this way, quite a baptism of fire.I have always held the view that as parents receiving a diagnosis like Joshua’s on day 4 of his life, while we were still in the Special Care Baby Unit that we should have been allocated a social worker at that point, automatically. One should have appeared and introduced themselves to us and left their contact details for when we were ready to ask all our many questions. As it was we were years down the line before we sought out a social worker and he began to open doors for us, that had previously been closed. If one could not appear so quicky, at least we could have been given an information pack with helpful details and telephone numbers in it. There has to be a better system to help to prevent new parents falling through the gaps in the system, at what is a bewildering time in any new parents life. We were very lucky to have a brilliant health visitor who picked up the slack and did more than her job required, but not everybody will be as fortunate as us.

Down by the riverside

Once Joshua was topped up on his missing sleep, he was on good form again and we all enjoyed the last day of our weekend away. We drove into the countryside and went for a walk that ran along the riverside that was wheelchair friendly for Joshua and that was flat and about the right distance for his companion and we set off for the pub, where our reward would be sunday lunch. Not long after we started, Joshua’s companion offered to push his wheelchair, which I took as a kind offer. But he then signed to Joshua to get out of the chair and he was brokering a swap, which made us all laugh. He slowed down but was encouraged to keep walking, pointing out the white pub in the distance as his goal. Joshus enjoyed the luxury of being pushed along the river walk.

We settled outside when we arrived at the pub and ordered lunch. Both teenagers weregiggling and happy – one to be finally sitting down and to have food on its way and the other, pleased to be out in company and to have food on its way. We had to wait longer than either would have liked, but we were able to keep them amused. When their fish and chips arrived, all hilarity disappeared as eating is a serious business and requires full concentration. After pudding we set off the walk back to the car and again, Joshua’s companion began to complain of being tired. He chased my friend for a promised , but elusive, piggy back, so that involved some running  and for a short while, Joshua gave up his wheelchair and stretched his long legs allowing his friend to rest his weary legs. With  a lot more encouragement, we made it back to the car, which was kissed as he was so pleased to arrive back. It was a beautiful river walk , in spectacular countryside, but typically I find that teenagers do not really appreciate views and I am pretty certain that the scenery did not really impress Joshua or his companion.

We drove back to the cottage and packed up, our weekend away was over. I am so pleased by how both boys got on well and had a fun time. I hope that we will repeat the experience again in the future but before next time, I would like to learn more signing so that I can communicate better with Joshua’s friend . I picked a fair amount up over the weekend, I now know more than I did, but I would like to be able to communicate properly as my inadequacy with signing must have been frustrating, but thankfully we had an interpreter. I must add to learn sign language to my list of skills that I still need to acquire. If he was frustrated by my inability to speak his language, my travelling companion never once let it show.

A fun day out with friends

Thankfully on night three, Joshua slept and is still asleep now. He continued to be ‘in and out’ all day  and gradually he was with s more than he was not, such is the pwer of spilepsy, its residual effects rumble on for days. Gradually the loud shrieks for ‘Mummy’, ‘daddy’ and ‘bed’ subsided and by the evening Joshua was fianlly able to close his staring eyes.

We took the boys to the cinema to see ‘Petes Dragon’ and it was a success. we sat on the second row under the screen, so had there not been a row of chartering girls behind us, it would have felt as though the film was being played only for us. The noise behind us menat that I did not feel any embarrassment over the range of noises that emanated from our row of seats. Joshua would shout out occasionally and his friend would get louder and rock in his seat when the action became exciting. It was an entertaining filma and Joshua made no attempt to leave or to sleep so that is a success in my book.

After the film we went shopping, which JOshua tolerated but his friend adores. He loved to rummage for DVDs in charity shops and he came away with  a new stash of films and books to enjoy, pleased with his newly acquired treasure. Whereas the highlight for Joshua was when we stopped for afternoon tea, we shared a toasted teacake and Joshua tried to catch the eye, or sometimes the arms, of the young waiters and waitresses. He produced his best smiles of the day for them and was rewarded with his chased response. Joshua gets a thrill from a smile or a greeting from a stranger.

There was a special shared moment between the two teenagers last night, as we were all relaxing after tea, watching one of the new films. Joshua’s friend signed hello to him and asked if he was happy. I helped Joshua to sign hello back, which made them both giggle and then Joshua purposely sat up and waved across at his friend, expressing himself clearly. Then they both went back to watching the television. Joshua does not have many friends with peers and so it was great to witness this brief interaction.. It is a friendhip that I would love to see develop and continue to grow.

What if….?

Yesterday was A level results day and so all over the country there were families who were celebrating that their teenagers’ hard work had paid off and they were taking the next step on their journey, and going off to University in the autumn and there were also families where dreams were shattered by disappointing A level results and new plans had to be made. It made me reflect back on my results day 31 years ago but it also made me sad that this was experience that Joshua would never have.

I am so proud of all that he achieves everyday; he takes so much in his stride and comes out the other side smiling and he has great social skills. But he is never going to have any academic success nor head off to college with his peers and I am sad for this missed opportunity. But I accept that Joshua will not have that regret, he will not feel as though he is missing out, that is simply my projection onto him because I loved my years at university. Similarly, my husband regrets that due to Joshua’s right sided weakness that he has not fufilled his athletic prowess, while watching the athletics in Rio at the moment, he often muses which sport Joshua might have excelled at given his tall, slim physique. Again I do not think that Joshua is a frustrated long jumper, my husband is simply speculating over what might have been.

But Joshua does have opportunities to fulfill his potential, both at home and in school. If he shows any interest or aptitude for something, then he is encouraged fully to develop his skill or interest further. Joshua may not acquire a string of qualifications or a shelf full of trophies, but we could not be more proud of the young man that he is becoming and the outlook on life that he adopts. we never know quite what is around the corner, but whatever it is, Joshua will embrace it in his unique style.

A short break away

Joshua was more subdued than usual when I dropped him off at his respite provision yesterday afternoon; he was not unhappy but instead of being excited, he smiled quietly and rather than greeting each of the staff with a hug as he has done in the past, he sat on the settee and let them come to him, so he played it rather cool.

So I was relieved to hear, when I called them up at 10pm, that he had been making them laugh with his smiles, hi 5’s and giggling. He had eaten two main courses for his evening meal and he had enjoyed a walk out to the park too. That news allowed me to go to my bed smiling, knowing that he felt at home there and was having fun as these ‘short breaks’, as they are now called rather than respite, are about all of us enjoying out time apart: not just us as his parents having some time away from Joshua, but also, Joshua enjoying  some time independently from us. Time when he perhaps does activities that we have not considered for him, when he mixes with his own age group rather than just adults and when he experiences a different bedroom and eats alternative meals. It is all valuable experience and it is clear to me that the staff at his respite provision are already very fond of him, which matters a great deal to me : I like to think of him being in environments where he is popular, as he responds well to that warmth.

Working with children and young people with special needs is a challenging role and I am not sure that everyone is equipped to do it with the passion that it requires. It is so refreshing to witness carers and teachers who clearly adore their work , so much so that they make it look easy. The best ones appear to have an additional sense and to have eyes in the back of their head. I have learnt over the years as Joshua’s mother to predict his moods, behaviour and even when a seizure is brewing. But I have had 15 years practice with just one child, which is very different to the comings and goings of several young people in a classroom or at respite, when they can run rings around the staff They have to be alert to the interaction between the various personalities and be aware of potential clashes , in addition to the needs of the individuals, so that is a specialised juggling act and we are very fortunate that Joshua is in the care of such skilled professionals.

The Here & Now

Joshua missed his last weekend of Respite as it fell on the first weekend of our family holiday. I turned it down rather than delaying the start of our holiday and I asked, without any real expectation, if he could have any other days and nights as an alternative. To my surprise, this did not seem to be such a hurdle, and they offered us two nights this week. So I will be dropping Joshua off there this afternoon and picking him up again on Friday morning. I am hoping that he is as excited as he has been previously to stay there, even though he has not stayed for six weeks now. So his bag is packed and I have told him several times where he is going and when I will see him again, but I am not sure that he will really understand until we pull up outside the familiar building.

Joshua certainly understands what is meant by ‘bath’ and ‘bed’ as he repeats those words and even requests them when he is tired. But we were asked on the last day of our holiday if Joshua was upset to be going home? I had to explain that I doubted that Joshua realised that we were homeward bound and if he did, Joshua would not be disappointed by that change as he is a real home-bird. While he can grasp nouns like bed, I do not think that he feels emotions such as ‘being upset’ about a future event, which is a benefit, as is not feeling anxiety about something that is about to happen. But likewise, Joshua will not experience excitement about something that is anticpated, such as an outing or his birthday, which is disappointing as , for me, often the build up is as rewarding as the event itself.

On balance, perhaps living in the ‘here and now’ as Joshua does, rather than wasting time pondering the past or speculating about the future, is the sensible way to be, maybe he has the right idea after all.

Nose to the grindstone

I did not really feel ready to go back to work yesterday as I felt in need of some time at home to acclimatise. We always like to squeeze the last moments out of our holiday, by not leaving until Sunday afternoon, but the downside of that is the rushed feeling of just a few hours turnaround. I know that the more sensible approach is to leave on Saturday or at least on sunday morning, but we have never been sensible where holidays are concerned as we have always been ruled by our hearts not our heads. But as a result, going to work yesterday was a struggle. Having had over two weeks with Joshua, it felt odd kissing my sleeping teenager goodbye in the morning and then he enjoyed a day on the beach with Yorkshire Grandma. I saw him awake when I got home, while he was eating his tea, but after that he snuggled down to go to sleep in his armchair, so I complained about only seeing his eyes open for around 20 minutes all day.

We live in a seaside town so I seemed to be surrounded by holiday-makers, which did not help my feeling of injustice and feeling sorry for myself. I queued home in the car at lunchtime, due to congestion of tourists, so I decided to cycle back to the office in the sunshine – partly to bypass the queues and to be healthier, but also in an attempt to re-capture some holiday spirit and it worked well. So much so that I may cycle in today too; I will not win any medals for speed but it is a fun means of transport and my 2-3 mile commute is just the perfect distance for me. But I did warn my colleagues at 3pm that I was now accustomed to an afternoon siesta and so I may have nodded off at my desk, but I managed to keep active to prevent that from happening, even though my eyes wanted to close briefly for a power-nap.

I was relieved when it was time to cycle back home and I heard Yorkshire Grandma’s tales of the day and of the two weeks while we have been away.I know that today will get easier and soon I will be back in the swing of my routine. This is simply the price that I have to pay for having had a good holiday. And lets face it, we have a long Bank Holiday weekend coming up just around the corner…..