Wonder Woman!

I did not see Joshua awake yesterday at all ; he was asleep when I left to go to work at 8.30 – Yorkshire Grandma said that he slept in until 10.15!! – and he was in bed when I got home ,late. I had a big day at work as I had a four hour drive to a potential new client , where we have been shortlisted as one of three, to bid for a 3 year contract. I was preparing for it last week, amid the unexpected nature of hospital visits, but managed to get my presentation prepared as I had some useful thinking time on the motorway.

I was the first of the three bidders to present to a panel of three and it was quite a formal process when I was timed and I had to speak for up to 40 minutes, with no interruptions from the panel. I am comfortable with formal presentations like that, but I prefer them to ask questions as we go along so that it is more like a conversation, rather than me giving a speech. After my presentation there were some more marked questions and then some additional questions , which they wanted to know the answers to, rather than being  a formal assessment process.

One of those questions threw me briefly as one man asked me ‘if your company was a super hero, what super hero would you be?’!  Now if Joshua had been a ‘normal’ child, I would have been more aware of modern super heroes, but as they do not interest him, I have never seen any of the Marvel films. So I had to dredge my memory for a superhero from my childhood, which  took some dredging I can tell you. I came up with Wonder Woman, which I used to watch and enjoy as a girl. I explained that market research is an industry dominated by women and that we would only have to spin around, and we would resolve their problems. He said that he liked my response but it was the best that I could do under pressure and with no notice or time to research, and I was simply relieved to be able to identify one!

There are lots of super heroes in my life, people who do amazing jobs and appear to have magical powers, and I thought about them on my long drive home. I do not know how well I did but I felt as though I would not have done anything differently if I had to go through it again, so that should be good enough. We may or may not be a good fit with that company, but I was honest about where we are and what we could offer them. This was definitely a day when my work-self took to the fore, being Joshua’s mum and Mum’s daughter, took a back seat for the day. I would not like everyday to be like yesterday, but every once in a while it feels good to dress smartly and to show off about what you can do and have done in the past.

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Walk in Our Shoes

Having a child with special needs , puts additional pressure on any family as I have explained many times before. Many marriages do not survive the pressure, as the demands that that child place on its parents increase over time rather than decreasing, as is the case with most children. Everybody knows and understands that babies need 100% care – they require feeding ,changing and dressing but it is the normal expectation that from toddlers, they will start to feed themselves, become toilet trained and start to be able to dress themselves, so that they become less dependent on their parents for care as they develop more independence skills. But in many SEN cases, those self help skills do not develop and Joshua, for example, even at 18 still needs that same care that he needed when he was a baby.

It is expected in a family, that the children will start to contribute more to the household as they get older and that once they reach high school age,  that they will spend less time with their parents as friendships start to take on a bigger role in their lives. They will start to  want to stay out overnight with friends or to go on holiday with them as they move further away from their parental influence and ultimately, they will want to move out of the family home and set up in their own space. But our offspring tend to remain dependent, even as adults, which is why respite is so important; it gives parents time to themselves. to re-charge their batteries and to restore the balance of the family, which is usually skewed towards the needs of the SEN child. But it also gives the child or young adult, time away from his parents, where he can mix with his peers and engage in activities that he might not access within his family. I am certain that the fact that we have had monthly respite weekends ,apart from each other, for ten years now is one of the main factors that has kept our family together as Joshua has grown older, and arguably, more demanding.

Along the way, families have to make many sacrifices when putting the needs of their child first. Those could be relatively small sacrifices,  such as missing out on social events as there is a lack of suitable babysitters or limiting choices of family holiday to resorts or accommodation that suits the needs of the child . But more life-changing sacrifices are also made in the interests of the whole family, such as career moves. My husband and I have not been prevented from having jobs, alongside Joshua,  but we have both turned down career advancing opportunities because they would not have been viable while looking after him at home. In my experience, at least one of us has had to have flexibility at work to be able to attend the numerous daytime meetings and appointments or to be able to respond to the emergency calls from school or nursery to either fetch him home or to meet him at hospital, which has limited the scope for roles that involve a lot of travel.

I heard yesterday of a family whose son is struggling at present : getting ready for school and the journey to school has become overwhelming for him and he is resisting it daily with his Mum and even by calling on assistance from extended family, it is still proving to be a real struggle. She has fought a hard battle everyday before 9 am and often on very little sleep. Her husband, she told me yesterday, has handed in his notice to be able to support his son and wife better, as what they have been coping with on a  daily basis is untenable for any of them. He had no flexibility in his work and so the burden always fell to his wife. I am relieved for her and their son that he has made this decision, but beyond families who know this situation, who would truly understand the strain that working families are under and the choices that have to be made.

Given the number of appointments that have to be juggled and the full time chasing and complaining that has to happen in order to get what is needed, it is rare in my experience to find families where both parents manage to work, certainly full time. I use my Fridays-off for appointments where I can and for chasing calls and emailing. When that is not possible, I am very fortunate that I have some flexibility over my hours to enable me to juggle them to accommodate Joshua’s commitments, but I would have struggled over the last 18 years if I worked Monday to Friday , 9am to 5 pm. I am also permitted to make personal calls during my working day, as often the services that I have to chase, work the same hours as I do. But for those who are not blessed with that flexibility, a life on benefits may be their only choice.

Everybody realises that when they choose to have a baby, they will be making some personal sacrifices in the future. But please spare a thought for the challenging lives that many parents of children with special needs are facing behind the closed doors of their home. Most will not complain about it spontaneously as it is everyday life to them, but as you get to know them better, you begin to learn about the struggles that many are facing on a daily basis. So if they have become bolshy or weepy, or seem to be disorganised , are always late or forgetful, cut them some slack , as they may be dealing with untold horrors at home.

The Juggler

My husband is working overseas this week, where he is 9 hours ahead of us – so I spoke to him on my way to work, and he was heading to bed and last night, we spoke as I was going to bed, and he was just getting up. I am very grateful for mobile phone technology that enables us to speak, as though he is just down the road, even though he is half way around the world. He will be home again on Friday and so he is not away for long and with the support of Yorkshire Grandma, we have a plan for managing work and Joshua between us this week.

In order to manage work while parenting a young man with special needs, takes both support and a flexible employer in my opinion. If Joshua did not have not have any difficulties, now that he is 18, he would not need anyone at home to greet him from school, to make him his evening meal and to stay with him while his mum took his puppy to Dog Obedience Class. But that is not the world that we live in, even now he is an adult, Joshua is not safe to be left in the house alone at all : he might have a seizure and fall over, he may trip on the stairs, he could leave the house and wander out onto the road. He pulls his own socks off or trousers down and then his own clothing becomes a trip hazard. Joshua would unwittingly touch a hot kettle or hob and burn himself. He has no sense of danger at all and is unable to keep himself safe and as such, cannot be left to his own devices at any time. So even nipping out to the shop, when I have forgotten something, is not an option without taking Joshua too, which he would not appreciate once he is home from school as it is very hard to tempt him back into his boots and into the car in the evening.

Joshua is not able to occupy himself, so although he has DVDs and movies that he likes to watch when he comes home from school, he is reliant on someone else to set them up for him. His attentions span is not what it was for such distractions, so last night when I got  home from work , I found the ipad playing Shrek on the floor in the snug, his Show blaring away in his den and yet he was upstairs with Yorkshire Grandma, lounging on his bed enjoying a Bruce Springsteen DVD! He leapt up to greet me and he then ignored all of his media options as Mum was home!

Normally after Joshua’s taxi has picked him up in the morning, to take him to school, only then do I have my breakfast and I have 20 minutes to myself, before I need to leave for work. But this week, with my First Aid course, I am having to be more organised so that I can leave the house the same time as him in order to get to my course on time. But today is the last day of the course, and my assessment day, so we will have managed this military operation to get out on time for three days. But next week we have a new challenge, as Yorkshire Grandma is on holiday and so I will need to meet him after school, or make alternative plans for the day that I am working away from home. I am not very good at planning ahead, I tend to only work out one week at a time but I am getting better at juggling, while trying to keep as many balls in the air as I can.

A Quick Reminder

I had a long day working away yesterday , leaving home at 6.15am and catching a train to Scotland and not home until 10.30pm, by which time thanks to Yorkshire Grandma and my husband, Joshua was tucked up in his bed. However I expected to sneak out in the morning, leaving him fast asleep, but we had one of the worst nights that we have had for a long time, so I saw too much of him the night before my trip. He appeared at my bedside at 2am as he needed changing. I hoped to do that quietly, without either of us really properly waking up – I have, over the years,  mastered changing in the dark for this very reason. However, Joshua had other ideas as he marched off downstairs, ready to play! I gave him some Weetabix with hot milk, hoping that would fill and settle him. But Joshua was wide awake and so I agreed to let him watch the Show in his den, under a blanket, hoping that watching the TV screen would make him sleepy.

It was very like old times, we were both up for two hours in the end and I persuaded him back to bed at 4am and we both gained another hour’s sleep, but he was back at my bedside an hour later. So when Yorkshire Grandma crept in at 6am, trying to shush the dogs from barking , I told her that it did not matter, that we were all well and truly up anyway. Joshua was super excited to see her, shouting loudly ‘I like you’ and giving her hugs as he had not seen her all of half term. I knew as I left the house to catch my train,  that he was now definitely not going to be inclined to go back to sleep and I left them to their happy reunion.

This broken sleep, being awake and downstairs at 3am, was very familiar to me as we have spent most of his childhood seeing that time of day. Last night was a great reminder of how far he has come lately: more often than not, Joshua is asleep around 9pm and sleeps through until 7am, which is a perfect sleep pattern for school nights. It made me appreciate how far we have come and my only wish was that he had chosen a different night to re-visit the past. As ever, I was fine in the morning and I could not shut my eyes on the train, as I had planned. But certainly on my route home again, my head felt a little fuzzy and on one occasion, I woke myself up with a loud snore. When I finally got in, relieved to find that Joshua was in bed, I had a quick cup of tea then was in my bed, asleep, within 20 minutes of arrival home.

Holidays are coming, holidays are coming

I finished work for my two week Christmas break yesterday so I spent the day tying up loose ends and preparing to be away. I know how lucky I have always been as out offices close for the festive period, so I have never had to work between Christmas and new year. I know from experience that it will fly by faster than any other holiday. It is always a busier holiday than any other so I think that is what makes it go quickly, there is the run up to Christmas and then that lull before New Year and then bang, it is back to work. I joined my company on January 2nd 1990, so I am about to have my 29th anniversary, which seems ridiculous to me as that is a lifetime! How much has changed during those 29 years? I arrived newly graduated and keen to progress and learn, I had no idea back then that I would stay as long as I have. We got married after 5 years at work and bought  a house in the town where my office is, so I have a four minute commute, and we both worked hard, both doing more than our share of travelling for work. Then after 11 years, I took maternity leave to have, and then look after, baby Joshua.

I returned to work, for three days a week , when he was 6 months old and he went to a local childminder who had her own son who was 6 months older than Joshua. They all had fun together and that arrangement worked well and I had hoped that this would represent my permanent childcare solution. She took maternity leave to have her daughter and during that time, Joshua attended local nurseries, which he did not settle at and so it was with relief that he resumed his time with his childminder. That continued well until her mother died, leaving her an inheritance, and the family bought a retail business and she stopped being a childminder , sadly. So it was back to nursery until Joshua started at mainstream nursery school, which both he and I loved.

At that stage I increased my hours to four days a week and that has continued that I take Friday’s off. These Fridays are very precious to me, I have never been keen to resume full time hours. The plan is that my Fridays are ‘me time’, to use as I choose. Today for instance I am at school this morning for my monthly coffee morning, then I will do a supermarket shop on the way home and this afternoon, Joshua’s social worker is coming round. But they are not all like that, having last Friday off meant that we could enjoy a long weekend away and I have booked to go and visit two friends in the new year who I have not seen for many years. During term-time Friday is a day without Joshua at home, so whether I am doing things on my own, at school, with my husband or friends, it tends to be a Joshua-free day.

It is the last day of term today for him and so it will be my last Joshua-free day for two and a half weeks, which will be fun. I know that he enjoys school so now that he is busier and  more active, we will see how we all get on. He will enjoy the family-together time, although he will probably be less tolerant of the inevitable time that will be spent in the kitchen in the build up to Christmas, as he is less willing to watch from the snug, these days he comes into the kitchen too and stands very close, demanding cuddles and wanting to help by opening and closing drawers and cupboards for me. He used to be oblivious of what went on in the kitchen now it is a source of interest and also annoyance, as it is somewhere where he does not get full attention. He used to have long teenager lie -ins , so you could get on in the morning, but more recently, he is too busy to stay in bed and he usually appears around 7ish, ready to attack the day at full pace.

So today is the first day of my Christmas holiday…bring it on!

 

 

 

 

is day one of my Christmas holiday…bring it on!

The Aftermath

We were full of euphoria to be back home after our adventure at A&E, and then normal life resumes. Joshua slept well in his own bed – as did I but for less time – but when he did get up, he had a very runny nose so he had been brewing a cold, which will have contributed to his high temperature too. Due to his upset stomach, he needs to be off school for 48 hours, even though I am pretty sure he is not infectious, that it is a reaction to the Midazolam and anti-biotics. But pretty sure is not definite and we cannot risk infecting his fellow students and staff ready for their half term break, so we made arrangements for him to stay at home : I was in charge until 11, while my husband attended an apointment that he had already made, and then he took over for the rest of the day , while I went into work, despite my “fuzzy head”. I have orgnaised that Yorkshire Grandma will take care of Joshua today and then we should be back at school tomorrow, all being well.

Despite his runny nose, Joshua was full of energy and was constantly drifting between his bedroom and his den, unsure what he wanted to do or what he wanted to watch. He refused to eat the lunch that his Dad made for him and he spat out the tea that I prepared too. He would however eat satsumas and rice pudding, suggesting that he has a sore throat as well as a runny nose. It is necessary to be a detective when your child cannot tell you if something hurts or if he feels ill.. So I dosed him up with magic Calpol and gave his another hot bath, and stopped nagging him to eat his meal, as I am sure that he will more than make up for it when he feels better and his appetite returns.

My colleagues at work wanted to hear about my adventure : my busy working weekend and also our trip to hospital. It was a big day in our office calendar yesterday, we had our annual quality audit, when an inspector comes to assess if we are keeping to our stated procedures. It is usually a stressful day but I had a new outlook on being examined : after the stress that I had experienced over last weekend , an inspector asking me questions and to show him my paperwork held no fear for me at all. In fact, I became rather giddy during my ‘interview’ but fortunately I did not cause us to lose our accreditation with my light-hearted approach. But compared to the life and death scare of a call that your son is being taken into A&E with uncontrolled seizures and a sky-high temperature, market research, and whether or not I ticked a particular box, was very low on my list of priorities. But not so low that I chose to stay at home and avoid the inspection  completely, which might have been the easy option. But since when did I ever take the easy option in life?

Work/Life balance

I have been working away since Thursday, all weekend, which is thankfully a rare occurrence for me and I will be really pleased to get home this afternoon, as I feel as though I have been away forever. I am so lucky that I was able to see Joshua, my friends and Matilda on Saturday afternoon, as an oasis of fun during a pretty intense weekend. I left our accommodation at 6.15 yesterday morning, both Joshua and I were up and padding around between 3am and 4am, when he had two bowls of cereal and we shared some toast, then I packed my bags while he watched Shrek on the ipad.  He was restless and so I snuggled in next to him around 4.30am and set my alarm for an hour later. I felt more tired when I re-woke up after an extra hour’s sleep, but I managed to slide out, shower and creep off in the dark without disturbing him, leaving my friend, who was also up early, in charge.

I drove for 4.5 hours, enjoying the driving experience until I reached our capital, where the traffic and navigation became more challenging and I struggled to find my destination. I work in market research, so I was moderating focus groups. I enjoy meeting new people, asking them questions for 2.5 hours to get to to the heart of issues, then knowing I will never see them again. It is  a people business and I enjoy getting to know strangers. I have been with the same two clients since Thursday now and we will meet up again this morning, to debrief, before I catch the train home.

During this intense weekend, I am a market researcher and  a project manager, I am not Joshua’s Mum, so it gives me the opportunity to leave him in the capable hands of others and to focus wholly on my work. I would not like to do that permanently, but it makes a refreshing change of outlook for a few days. This weekend I have been concerned by reporting and logistics, and the fact that Joshua needed his emergency medication at his respite provision, was not my problem. But even so I called them ,as usual, at 9pm for an update and then I promptly fell asleep with the lights, TV and my glasses all on!

One thing that has worked out well is that after these next 4 days of work, I have the parent coffeee morning at school on Friday – so need to get baking! – then we have a week’s holiday for October half term holiday together, when it will be no work and all play. I cannot wait for that week away, it could not come at a better time.