Caught Napping

I am out of practice, just to keep me on my toes, while Dad is away overnight, Joshua thought he would like to get up at 3.30. He would not get back into bed, so we both came downstairs and he had his Weetabix a bit early. Once he had finished his three Weetabix, he headed back upstairs and into his bedroom. So  I thought that he was simply hungry – though Heaven only knows how, the amount he ate last night. I went back to my bed and expected us both to get some more winks, but no at 4.30 he was back out of bed and on the landing, and judging by the books on his bedroom floor, no winks had been gained in there at all. So we are both up, have had a 5am bath, done some baking and put a load of washing on.

3am always used to be a crunch time for Joshua when he was younger, so I am not unfamliar with this time of day, just that I have not made its acquaintance more recently, luckily. If I set an alarm, we could have a power nap before we need to get dressed, just to top ourselves up, as it wasn’t even an especially early night either. In othe old days, Johshua  would have made up for lost time on a giant beanbag in the corner of the classroom, but these days he is too busy and nosey to nap at school – he might miss something!

I tend to find that I will be OK this morning, but by 2/3pm, the tiredness will start to hit me. I start to feel dizzy and a bit nauseus and if I can just have a short nap, I find that I am able to carry on until bedtime. I will try to doze in my lunch hour, as I am in the office today and siestas are, regrettably, not encouraged in our culture. The siesta is a luxury reserved for weekends and holidays.

As I look across from my laptop now, my cheeky son is snuggling down on the settee, under a throw, all set for a snooze, and I think that I might join him……

 

 

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Too good to be True

Joshua has always shown that he loves me, by the way that his face lights up when I get home from work or when I appear unexpectedy at school, by the bear hugs that he frequently gives me and by the fact that he follows me around at home, desperately trying to get my attention. That all means so much and I have never had to worry how he feels, even when he was pretty mute or oblivious when I left him with a childminder or at school and he never gave me a second glance, as I have always known how he feels.

But Joshua said something very , very special yesterday morning, as we had finished getting dressed ready for school : He said ” Emma” and I said yes, with a snigger as it makes me giggle when he calls my name rather than saying ‘Mummy’ or ‘Mum’. He replied with ” I like you” and gave me one of his bear hugs. It briefly took my breath away and then I replied ” I like you too”. That he could voice how he was feeling was so special and if I never hear it again, I will always have that simple expression of affection from him. What a way to start my day, I was grinning from ear to ear.

Chalk & Cheese

You may recall that ten days ago I wrote about a disappointing orthopaedic appointment for Joshua’s foot, well yesterday we had a similar discussion in a different hospital, with a different surgeon, about another limb, and the whole experience was so much better :

We had to wait over an hour in the busy waiting room to see this Doctor, which was challenging as Joshua was feeling very restless , so I took him for several walks down the corridor. Well I say walks, he ran down the corridor, trying to escape, and I followed him! I got him to sit still. briefly, with food, he enjoyed both a banana and a chocolate muffin. I should have brought my ipad to watch Shrek on, as my mobile phone was not interesting enough. Eventually we were called into the consulting room and there were two patient seats and the Doctors chair behind his desk. Immediately he offered up his seat so that we could all three of us be seated and he squatted on the floor in front of Joshua! He shook Joshua’s hand first, introducing himself and then ours and he had a gentle manner with him always maintaining eye contact.

He asked Joshua if he could look at his wrist and hand, to see what movement he had and when he pulled away as he moved up to his elbow, the Doctor backed off and said that he had seen enough and he apologised to Joshua for making him uncomfortable. He seemed so much more in tune with Joshua than the Orthopaedic Foot Doctor. Even though he was recommending surgery , he had won our confidence over with his approach and so my husband and I agreed there and then, once he had answered our further questions.

The Doctor wanted an X-ray of Joshua’s wrist to see the extent to which the joints are fused and fixed and given that it is so contorted and stiff, he acknowledged that was not going to be easy. But instead of making us or the radiologists feel bad, he explained that any image that they achieved, would be better than nothing. So despite having been in the hospital for two hours already, we went along to X-Ray and between us, they managed to get two images for the doctor to study. So now we are waiting for an appointment for tendon release surgery.

This has become necessary because , due to his stroke, Joshua has never had fine motor skills in his hand, but after his brian surgery in 2014, his wrist and fingers have got much tighter, so that his hand is always in a fist and his wrist is at right angles to his arm, due to the inbalance of tendons. He has had three batches of botox in his arm, which temporarily loosens those tendons and with physiotherapy and splints, his wrist and fingers open up more. But the effect of botox lasts a maximum of 6 months and then you are back to square one, as in Joshua, everything on his right side is just too tight. So we have opted for tendon release surgery which should give him a more permanent solution. He is never going to gain any fine motor skills in that right hand, but he ought to be in less pain with it and it will make life easier for dressing and for keeping his hand clean and finger nails, trimmed.

We were offered this surgery previously, but we were not ready and so we settled for the less invasive botox solution, but now we have all three of us reached a point where we are ready to embrace this surgical solution and I for one, have complete faith that this surgeon will do his best for our son, so bring it on.

The Host with the Most

We invited a family of friends around for tea last night and when they first arrived, Joshua was dozing on the settee in his Den. But then he soon learned that there was an audience in the house and that they were playing with Kevin, our new puppy, so he appeared to make his own presence felt and to perform. He sat very close to their son, ruffled his hair, tried to steal his glasses and to lift his shirt up, all with a cheeky glint in his eye. He joined us for the meal, which he enjoyed but towards the end , he went upstairs and we could hear from the monitor, that he was removing books from the bookshelf on the landing and throwing them on the floor – another effective attention-seeking tactic! But he was safe on the landing, so long as he did not fall over all of the paperbacks on the floor, as he was shut in so that he could not mess about on the stairs.

Throughout the fun evening, he would breeze in and out, to check what was going on.  I like to think that he was behaving rather like a typical teenager, one that was not going to admit that he enjoyed the company of his Mum’s friends! He repeatedly showed off his new trick, that of dropping gently onto his knees on the floor and kneeling there for a while, then getting up again. He is able to get himself up again, with no assistance, so I think that it must be great physiotherapy for him to encourage that movement. He is so much more agile and flexible, certainly, than he used to be.

He was worn out when they left and asked for ” jamas” and he was asleep within minutes of getting into bed. It seems that all this showing off, is exhausting!

Intentional Rescue

Joshua has an Epilepsy Care Plan, that applies at school and when in respite, which advises staff when medical intervention is required for his seizures. He has Midazolam as his rescue medication, and as I understand it, this is an anaesthetic which dulls everything ,in the right dose, including the electrical waves in the brain, that  generate seizure activity. Joshua has had this same rescue medication for many years now and originally it came in little bottles with four doses in them, that you had to draw up with a syringe. The problem was that it was possible to overdose by giving him up to four times the recommended dose and once opened, the bottle leaked, so you would think that you had three more doses with you, only to find that it had all drained away into your handbag!

Thankfully, pre-measured syringes were provided, maybe five years ago, so that they were more convenient to carry around, it was easier to give a syringe to school and respite and more important than this convenience benefit, it was impossible to give Joshua too large a dose. I can recall the training from the Epilepsy Nurse to our then respite provision, it was the best innovation ever, as there had always been anxiety amongst school/respite staff that, in the heat of an emergency, an overdose could be given. It is powerful stuff , so much so that we are only allowed to give Joshua one dose – if it does not work, then we have to call 999 as his breathing would need to be professionally monitored in the event of giving a second dose.

We have only had to do that a handful of times in his life and the most memorable was back in Easter 2010 : we were on holiday in the Yorkshire Dales and Joshua began fitting, so we gave him the usual dose but the seizures did not stop like usual. We were in a remote village and so fear set in about the availability of the emergency services and when I called 999, they assessed the need and sent the Air Ambulance for him. I was in such shock that when they told me that is what they were doing, I told them that the garden was not big enough to land a helicopter in. They landed in a field near the local pub and an ambulance drove me and my still fitting son to that field to be loaded on. In  what seemed like an instant, we were airlifted to Middlesborough hospital, my husband had to follow on by car. Joshua was still having constant seizures and so he was taken immediately into Resus , where they tried a variety of rescue medications. Eventually a very smelly, powerful rectal drug called Paraldehyde did the trick and Joshua was taken to Intensive Care as he had had so many drugs and had been fitting for so long. We were moved onto the Childrens’ Ward the day after and stayed there for around ten days. They warned me that Midazolam might no longer work for Joshua and that Paraldehyde might need to be his new rescue medication. Thankfully that is not the case and for whatever reason, it started to work again, as it is relatively easy to administer on the move, in a public place as it is administered into his mouth and absorbed by his gums.

I carry a syring a Midazolam with me wherever I go and we have to use it, while out and about, too regularly – the last time was in the car, driving home from my Mum’s house when he began fitting while I was on my own on the motorway, which was frightening. It takes around 10 minutes for the drug to take effect and in the old days, it would knock younger Joshua out for hours, but now it just makes him drowsy, but does not necessarily send him to sleep.

While Joshua has access to Midazolam at home and at school, there is none in his taxi on the journey to and from school, which is a battle that I am currently fighting. I was told that Joshua’s escort is not trained nor paid to perform medical interventions and that, should the situation arise, that they should call 999 and await the paramedics. His journey to school takes around 30 minutes, so they have guidelines about bringing him home if he starts fitting within ten  minutes of home or returning to school if he is just ten minutes from school. The school journey is short enough to not be a big concern but the drive to his respite provision, once a month, takes over an hour and during that time, Joshua is very vulnerable. It was agreed in Joshua’s Education Health Care Plan meeting that the Passenger Assisitant needed to be able to administer Midazolam , in order to keep Joshua safe but as yet, it has not made it onto his paperwork and the Transport department are resisting taking responsibility for it. After several unsuccessful conversations with Transport, I am now taking my own action to protect my son : I have emailed the epilepsy nurse to ask if she will train the PA, if she is willing to be trained and responsible. It is simple common sense  but in my experience, that is not the rules that Transport abide by, but we continue to fight for what is right for Joshua.

A Busman’s Holiday?

It was my day off work yesterday so I went for a swim  late morning, rather than my usual 7am slot. When I got into the pool it was pretty busy and as I looked closer, it was full of adults with learning difficulties, swimming with thier carers, so it must have been some Daycare outing. As I swam my lengths, I observed them really carefully to see how the carers handles their charges and to see how much fun was being had. It was a timely coincidence as in the afternoon, our adult social worker was coming to visit to discuss respite and daycare options for when Joshua is 18.

I was delighted to see that the young people were all happy and confdent in the water and that their carers appeared to be very caring : the young man nearest to me was shrieking with delight – a noise that Joshua used to make, but no longer does I realised. He was paired with a young man about the same age as him , which I loved as they looked at first glance like two friends who had gone swimming together. Professional carers tend to be, in my experience, older ladies , so this appeared as though they had been more carefully matched together. I watched, from a distance, two female carers meticulously assist a physically disabled young lady up the steps to get out of the pool, they were gentle and went at a slow pace, there was no hint from the body language that they might have been impatient with her. I watched a mother in the observation area rush around to the showers with her daughter’s towel and tenderly help her to dry herself.

As I was swimming up and down, I took a lot of the scene in and I just hope that I was not guilty of staring. Had I seen any hint of intolerance, impatience or boredom amongst the carers , I would have enquired which organisation they worked for , so that I would know to avoid it for Joshua’s future. But quite the opposite, I could readily visualise Joshua in that pool with a one to one carer in two years’ time and I might well be that mum in the observation area, waiting with a towel.

What are the chances of me coinciding with a group such as this, on my day off on one of my few respite activities? But rather than it being something that spoiled my swim, it actually enhanced it.  It was an absolute privilege to witness the fun that these young people were having, it gave me a positive vibe for what daycare might mean for Joshua in the future and, while being so nosey, I hardly noticed the 35 minutes of exercise that I completed!  Win, win, win!

 

School Life

I was in school all morning yesterday, for the first time this term and  it felt good to be back there. I always enjoy taking Joshua into school as I can see how he responds when he arrives and how he greets the satff. Yesterday, he could not wait for me to sort out my bags on the back seat of the car, he opened the passenger door himself and was out, raring to go. He dragged me into school, so I was in no doubt that he was pleased to be there. We got to Reception and he immediately spotted one of the 6th form teaching assistants and he ran up to her for a hug, even though she was not there for him but was taking a peer swimming.  Joshua was collected by his TA and taken upstairs, without so much as a backward glance. I could hear him talking and shouting happily in the stair well as I walked towards my meeting.

I am part of a working party that brings parents and school together in ‘partnership’ to discuss issues of interest to us both. Yesterday we discussed the school website, communications with parents and their approach to Relationships and Sex Education, which is a challenge when the ability and understanding of the pupil base is so varied.  We meet up every half term and try to represent the views of all parents, so that the parent  voice is heard in school decision-making.

After that meeting, I caught up with noisy Joshua again, as we were meeting Orthotics with his troublesome splints, which are rubbing his ankle and making it sore and I had a great welcome, as though he had not seen me all day! They have taken his splints  away again to adjust for the third time. Joshua enjoyed the appointment, surrounded by three young ladies. While the Physiotherapist was removing his boots and socks, he was pulling and stroking her tempting ponytail which was right at his level, but luckily they have all known him for a long time, so tolerate his ways. So that she could see his foot position when walking, the orthotist rolled his trousers up to his knees, which he was not happy about and he kept pulling them trouser leg down again, so it became an amusing battle of wills. Once she had finished with him and he was back in his boots, he rushed down the school corridor at top speed to get  back to class, or lunch, I am not sure which but I know that I had to run to catch him up!

If ever I needed any reassurance that Joshua was happy in school and that he was in the right setting, I got it in bucket-loads yesterday.