Separation Anxiety

I will be working abroad this weekend, which is a rare occurence, but I will be leaving home on Saturday morning and I am not expected back until midnight on Sunday, after a full- on weekend project. So I am having to plan both, what I need to take with me to Germany ,as well as thinking about what I need to leave in place for my husband and Joshua. They will be fine I am sure, it is just one night away, which they have managed before of course, but it is not easy, especially because Joshua has had some bad clusters of seizures this week – he was off school yesterday after needing rescue medication at school on Tuesday. – so that will make it much more difficult to leave them, as I find it hard to handover control.

I returned to work on a part time basis when Joshua was 6 months old, just three days a week initially and then when he went to school, it developed to four days a week,and I still  treasure my Friday’s off. This was my first job from university, so I have now worked there for over 28 years! I have often been asked how or why I work, when being mother and carer to Joshua is so demanding? For me, it has often been a lifeline – something that I can control – unlike Joshua’s health needs – , something that is familiar and that I am good at and something that allows me to forget being just ‘Joshua’s mum’ for a while. Of course I , like everyone else, have bad times when I regret my decision to work and wonder if life would be simpler if I didn’t, but on balance it works for us as a family.

During my normal working week, I have to be flexible, to accommodate Joshua’s health needs, as he will always be my prioirity. There are many times when I have had to rush out of my office to meet an ambulance at school after seizures or a bad fall or when I have had prolonged carers’ leave after Joshua’s surgery for instance, and I am grateful for the flexibility that I have been shown throughout his lifetime. When I went off on maternity leave back in 2001, none of us knew that Joshua was going to be more demanding than most ‘normal’ children, but the family firm that I work for have accommodated my needs and they know, I hope, that I give the most that I can at any time.

But this weekend I need to hand over the carer reins to Dad and I have to focus only on my work, as there will be nothing that I can do from Germany. I will do the best job that I can this weekend, then return as Mum  from Monday morning.


It is good to talk

I have written before about how isolating being a parent of a child with special needs can feel, but if you couple that with a mental health issue then it is a double whammy. I have looked but not yet found a statistic for the prevalence of mental health problems amongst special needs parents, but I suspect that, if the average of the full UK population is one in four will suffer, then I am guessing at four out of five. That is only based upon the conversations that I have had with other parents and carers, particularly at the monthly coffee mornings that I run at school, and nothing more scientific than that.

Many special needs parents are sleep deprived and that, being a form of torture over any length of time, can create mental health issues. It is impossible to relax fully when you have a child with special needs : even when they are at school, you can still get the call, as happened to me yesterday, to say that Joshua had had a cluster of seizures and that he needed emergency medication to end them. As this happened at around 2pm, it meant that I brought him home rather than risking him in the taxi where they cannot deal with his seizures adequately. When Joshua is at home, you are on ‘red alert’ 24/7 : last night he went to bed at 9pm, exhausted by the after-effects of his seizures and rescue medication, and I followed him around 10.45. I heard him up and on the landing and thought it must be morning, as I had definitely had some deep sleep which had suddenly been disturbed by hearing him, but once we got downstairs I checked the clock, and it was just midnight, so I had been asleep for just over an hour. He proceeded to have some cereal while he experienced a few absences, and then he curled up on the settee, happy that I was with him, and fell asleep again. I did not want to disturb him, so I spent my night on the two-seater settee, my ear primed for any more seizures.

We can spend our lives, or so it seems, fighting for the rights of our vulnerable children, so much so that we neglect to take care of our own health, physical or mental. If those battles are won or lost, the toll on the parent is huge and it has to have an impact.

None of us knows what the future holds for our children, but that anxiety is multiplied when your offspring has special needs : will they ever leave home and be able to manage an independent life of their own? Will they be able to function in the real world beyond school, where relationships and employment should be their future? What will happen to your child once you are no longer around or able to care for them? All of these concerns could drive you mad if you let them. My technique for self-preservation is that I do a very good impression of an ostrich!For example, I knew that we needed to write a will to protect Joshua’s best interests for when my husband and I die, but that is only something that we finally achieved in his 17th year, that is how difficult that was to face.

So having tried to give an insight into how it feels to be a parent of a child with special needs, let me tell you one thing that I have found that eases the alienation and stress. For me, sharing with and supporting other parents in a similar position, is really beneficial.  You immediately feel a common bond and do not have to explain what you mean as they know from thier own experience. At the coffee mornings, our ‘children’ – Joshua is the oldest at 17 – are all very different, have a different diagnosis and their behaviours are all unique, but we are all parents , trying our best for them and we face many of the same battles with social workers, local authorities, school…..sometimes we find that someone has advice  for another parent, from their own personal experience, and other times we just need to rant and know it is a safe place to moan about how unfair life is. But I am happy to host and bake for our monthly gatherings, so that such an environment exists for our parents, who do a great job just holding things together.

Down in the Mouth

Towards the end of last year, Joshua stopped eating and became painfully thin – he is already slim built, but he became very ribby and his hip bones stuck out sharply. We took him to the GP and tried to tempt him with all of his favourite high fat foods and , as a last resort, had his teeth checked out at the dentist. It is so hard when your child is non-verbal, it is necessary to be a detective to identify what might be hurting and how you can help.

On the last day of  term before breaking up for Christmas, we took him to his special needs dentist. It took three of us to hold him still so that she could look inside his mouth for long enough to identify the problem. She diagnosed oral thrush – which  she said would feel like sandpaper in his mouth, making eating unpleasant – and she found that he had cavities and gum disease. We came away with fluoride toothpaste,  an anti fungal prescription for his thrush and a strong sense of guilt that we had neglected Joshua’s oral hygiene. I had brushed his teeth, as best as he would allow, in the bath all of his life, just once a day maximum and now he was paying the price for my neglect.

We now have a much better dental routine : we have invested in electric toothbrushes for home and school and his teeth are now cleaned, of a fashion, three times a day using fluoride toothpaste. He now has his bedtime medication in sugar free yogurt, rather than chocolate mousse and he drinks more water than sugary J2O, which was his drink of choice. So we are doing all that we can, albeit his 17th year will be the first year of his life when we have taken oral hygiene as seriously as this, before then, if I am honest , his seizures and lack of sleep took precedence over his teeth. But now that his seizures are reasonably well controlled and he has never slept better, it is time to focus on his teeth:

Joshua will need to be sedated for them to properly assess and clean his teeth and to fill the cavities, and so he was referred on 22 Decemeber 2017 for that treatment.  Now almost 7 months later, we are still waiting for that appointment! I chased his appointment yesterday, only to be told that he is on the waiting list and that some patients wait for 14 months!!! I told her that I was not waiting that long when it was a child who was not eating and was in pain, what kind of system is that where that is acceptable. So while I can chase as a parent, I have engaged the support of his social workers,  school and his paediatric consultant. We should not have to go to these lengths when he surely has a basic human right to be looked after and not to be in pain?

Whirling Dervish

Joshua woke up yesterday full of mischief and his cheekiness carried on all day, right up until bedtime when unusually, it took  four attempts to get him to stay in bed. He was awake too early, before 7am, but that should have made him tired and subdued, not this whirling dervish that I had all day. He was so restless at home that I took him to the supermarket at 8.30, as he loves to push a trolley normally and that wears him out. While he pushed the trolley down the aisles, whenever we turned round to come back towards the doors, he abandoned the trolley and made a run for the doors, at high speed. He normally sits on the seats while I pack the shopping bags, but yesterday again set off at high speed, causing me to take off after him and abandon my shopping. He was giggling like mad when I caught up with him and brought him back, so he knew exactly what he was doing.

I wanted to visit a friend who has been unwell and she was working in her shop yesterday, so we paid her a visit. He immediately began to behave the same in her shop – throwing cushions off the settee, pulling clothes off hangers and heading for the stairs. Needless to say, we did not stay long in her boutique, just long enough to deliver a home made sweet treat and a hug.

We were en route to meet my sister at Donalds, and I had hoped that might calm him as he was very excited to get there and very excited to see his Aunt, he gave her a lot of cuddles, but then would grab at her glasses sayng ‘No Glasses!’ as he did it. We had to sit either side of him to wedge him into the bench seat and then he kept blocking his head in front of my sister’s ,so that we could not easily see each other! He refused to eat his burger, throwing some of it, but he was thirsty and drank more than usual. We only met for around an hour as I was not keen to drag him round any shops, as had been the original plan, in this mood, so we headed home again as, at least in the car, he has to sit still and the air conditioining kept us cool.  he did still manage to throw the remainder of his ornage juice all over me and the car, making us both sticky!

He rampaged around the house when we got back, sweeping and posing in front of the hall mirror with the telephone were his most constructive behaviours. Joshua enjoyed all of his evening meal and we had an early bath too. But he was not interested in lying on his bed watching ‘Lion King’ as he kept coming downstairs while I  was making my own meal.

I am not sure what triggered this busy behaviour but I have two theories :

  1. The heat made him uncomfortable and unable to relax
  2. I was home alone as my husband has gone to London to see friends and a concert,  so this was a request for attention as, Joshua was not going to be ignored yesterday.

I am enjoying the peace now while he is still asleep and I am wondering if we will have a repeat performance today, in which case I will be going back to work in the morning for a rest.


Here comes Summer!

Joshua will finish his first full year in 6th form on 24th July, which seems unbelievable to me, where did that year go? It seems just a blink of the eye since I was anxious about his big move upstairs and his early days when he was kicking at closed doors, trying to escape. And now he will be moving to his second year out of three, so if that one flies by just as fast then we are in trouble.

But before I can think about Joshua moving classes in September, we have the long summer holiday to contend with. We will go away on a family holiday for two weeks of the six weeks off school and so we need a plan for the remainder , when I work Monday to Thursday. It is quite a logistical juggling act to manage childcare during the holidays but I think I am sorted now.

But I know that school holidays are a stressful time for many families with children with special needs : the change in weekly routine can unsettle many children; I have heard of some families having to drive to school to show a pupil that it is really closed. We are fortunate that Joshua slots into the holiday routine and he tends to make the most of lie-in opportunities whenever they arise and that he does not fret or question a change to routine. Joshua has always faced life as the ‘here and now’, I do not believe that he thinks about the past or worries about the future, he deals with whatever is in front of him. I often think that my life would be easier if I approached things like my son does.

School holidays can be an isolating time for many parents and children, as they lose the social contact and structure that school provides. Not many of our children will receive invitations to play round someone else’s house in the holidays, as would happen for mainstream children. I have tried to remedy that , on a small scale, by inviting four mothers and their children round for lunch, hopefully in the garden, in August. It can be hard to find things to occupy our children in the holidays as they are used to a structured and busy school day.

I asked at one of my parent coffee mornings just before May half term what they planned to do in the school break and I received one reply which was “coping”. Another has described the summer holidays as the most stresful time of year as their hyper-active autistic son requires close monitoring for all of his waking hours. That for me sums up the issue for our families. I know that many mainstream pupils will complain about being bored in the holidays, but for our students, it is not just about boredom, it is about so much more and many parents will already be counting the days until the new term in September.

Prom Night

After months of preparation and planning, Joshua’s 6th Form Prom  has arrived and their school day is dominated by getting ready for the big event : a hairdresser is invited in to style the pupils’ hair, everyone is showered ready for the evening and there is a parade around the rest of the school, to show off their finery as students wear their suits and posh frocks. The evening was all set and the pupils and staff left school in a coach to go to the Hotel in Town at 5pm and parents were invited from 7pm onwards.

My husband and I were on our way, when I had a call on my mobile to see how far away we were, as Joshua was pale and was refusing to remove his suit jacket and at that stage we were still about 15 minutes away, and the staff sounded concerned about him. As we pulled into the hotel car park, we were greeted by an ambulance and police car, so I leapt out while my husband found a parking space. A teaching assistant recognised my look of panic, as I scanned the scene, and gave me a thumbs up to reassure me that all was well. It is incredible how quickly your imagination can suggest scenarios to you when presented with such a  scene, putting two and two together and getting six.

I rushed to the function room, to see Joshua in his wheelchair, in his 3-piece suit, doubled over with his head on his knees. He sat up when he saw it was me, but he was indeed pale, was very hot and was trembling. I removed his jacket and waistcoat immediately , so got no photographs in his finery, and stood him up, walking him outside to some fresh air as he seemed to be over-heating. He continued to tremble outside in the marina and so we moved into the quieter, cooler bar area where he snuggled me on the settee.. My husband bought him an orange juice to try to cool him down but he was very reluctant to drink. He then set off in search of some paracetamol to try to bring his temperature down. Two TAs sat with us in the bar  and several staff members checked on his well-being, while we waited for my husband to return with paracetamol. When he arrived, Joshua took his medicine well and we waited for a few minutes for it to work its magic.

We decided to re-join the party, as we were missing the fun, and so we wheeled him back into the function room and sat at the side of the festivities, where there was much excitement to watch. After a while for the paracetamol to take effect, I stood Joshua up again  and we stumbled onto the dance floor where staff and students danced around him and he stood still looking around. Gradually he started to feel better and so he began to bend his knees and dance on the spot. Within around half an hour, he began to move around the dance floor proffering  high-5s, waving and pointing at all the familiar faces in the room and he began to enjoy himself and we had Joshua back! We had a go in the Photo Booth, though were not very successful as Joshua will not keep hats on his head and so most of the 4 images involve me placing a hat on his head or him removing it, there was no posing!

The party ended at 9pm, when Joshua was just getting into his stride. He was rarely off the dancefloor and he was drawn to many of the pretty big sisters who had brought their siblings to the Prom. Much to my surprise, I only shed a tear once – well we missed the leavers  awards and speeches so that may be the real reason ,why – when one of the students sang a solo, and his intense performance really moved me. Joshua’s first Prom did not start quite as I had envisaged, but the second hour that we were there, he thoroughly enjoyed, so we will all know what to expect next year and we will learn from last night’s experience.

Thank you School for offering the young people in your care, an opportunity to have a mainstream Prom Experience. I realise how much hard work and extra hours go into organising and running such an event, and despite some unexpected blips, it went really well and the students, and parents, thoroughly enjoyed themselves.

Caring is bad for you?

My sister told me that now that I was over 50 years old, my body would start to let me down and ‘bits would drop off!’ . While nothing has dropped off exactly, this year I have had two warnings that I am indeed getting older: back in May, my calf muscle was giving me a lot of pain and after I had to crawl up the stairs and could barely walk, I reluctantly saw a Doctor and immediately he told me that I had torn my achilles and that it would be 6-8 weeks to recover. He showed me some exercises to stretch it and told me to ‘listen to my body’ and rest when I needed to.

I discovered that two things eased the pain : a hot bath, so I was having two of those a day, and raising it up when I sat down. It would get more painful if I had not rested it enough, until I was forced to sit down. Since having a torn achilles, I realise in caring for Joshua, how little I sit down before he is in bed at 9pm and at how often I need to run up and down stairs too. So I have become more organised and saved up trips upstairs, rather than going each time I needed something, or I have asked my husband to fetch and carry things for me more. But being in a caring role, really is not conducive to sitting around with my leg in the air.

At the  same Doctor visit, I had blood tests done and they showed that I am pre-diabetic – meaning that if I do not change my lifestyle, I will becoame diabetic in the future. This news struck me hard and I immediately began taking more exercise. I had got into a routine if coming in from work and spending the evening caring for Joshua, eating my evening meal, bath then bed and there was no room for exercise in that weekday pattern.

At the moment ,I am awake and up early in the mornings, full of energy. So I decided to harness that energy and now, on three days a week, I cycle 1.5 miles to our local leisure centre ready for them opening up at 7am. Then I swim for 35-40 minutes and then I cycle home again, getting home for around 8am, where my husband has got Joshua fed and dressed. I have now been doing that since early June, so this is my sixth week of this new routine and it suits me very well. Unfortunately swimming makes me very hungry afterwards, so I have seen no real weight loss, but I am certainly fitter than I was.

The Doctor will monitor my blood sugar levels in 6 months time and the nurse thought that if I could exercise more and reduce my carbs – that is a tougher ask! –  that I would be out of the pre-diabetic zone. I have found time in my busy week to slot in some exercise that I enjoy – I am a fair weather cyclist so I will not be cycling there in the winter or when it is raining – which has to be a good thing. Even to be released from dressing Joshua everyday is a bonus.

I am not blaming Joshua for either my torn achilles or my pre-diabetes, but as his primary carer, I know that I need to keep fit and well for him as long as possible, as he needs me.