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.

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.


The Sleeping Lioness

Most mothers would tell you that they will do anything to protect their children, it is a natural instinct that arrives when they are born. You see this helpless little baby and you know that you will do whatever you can to make sure that it has the best care possible and nobody can get in the way of that protective instinct.

If that feeling applies to mothers of ‘normal’ children, just imagine how much stronger that feeling is when you are told that your baby is extra vulnerable, that he has brain damage and may not walk, talk, see or hear?  You realise that ,at 4 days old,  your son will need your protection for the rest of his, or your, life, whichever ends first. This mother/son relationship will not be like most others: Joshua will never leave home and live independently, he will never bring his new fiancee home to meet his parents or produce grandchildren and he will never be in a position to look after his elderly parents as they become more vulnerable too.

So, in that context, perhaps it is understandable just how hard we mothers fight for our children and it is , in my experience recently, a daily battle just so that Joshua can have his basic human rights. I should not have to fight to ensure that he is safe when transported to and from school, I should not have to complain to ensure that he gets the nappies that he needs to keep him comfortable overnight and I should not have to request that he  experiences a full school day…….

I have often heard that a mother can turn ferocious, like a lioness, in defence of her offspring and I certainly recognise that determind, protective fight in myself. Joshua does not have the verbal ability to speak up for himself and so, as his Mum, it is my duty to be his voice and to try to understand what Joshua would ask for , if only he could.

Joshua will turn 18 next March and so then it is all change again, as he will be considered as an adult : so his current respite provision, which we love so dearly, will end abruptly from his 18th birthday and so we are looking for adult alternatives. So far,we have not been successful in our local area, so it seems likely that he will have to continue to travel some distance to access that decent provision. Thankfully he can stay at his current 6th form until he is 19, but once respite is resolved, we then need to start to review his day care options. My Husband and I are visiting a solicitor this afternoon to discuss Power of Attorney over Joshua as it will no longer be sufficient that we are his parents, once Joshua is 18. We will not be able to make any decisions for him, even though his cognitive ability is that of an 18 month old, the law recognises that it will be 18 years since he was born. He has already been asked by DWP to sign forms that he cannot read and had his bank account frozen until he can prove that he has capacity to make a withdrawal. Why, just because he is 18, will we , as his parents, suddenly stop making decisions in his best interests? It makes no common sense at all.

So we will have to learn some whole new words and processes for our adult son, now that we have finally got him into the best school and the best respite, it will be all change again. It seems that there is little continuity from Children’s to Adult services, so we are having to tell professionals all about our son, as though he will change from the 17 year old that lives with us today to another man on his 18th birthday. Fortunately this lioness is ready to roar and pounce.

Dance like nobody is watching

While we were on our short break last weekend, I was on the deck of the ferry while my husband was watching the England Word Cup match. I sat on the warm deck to read my book, feeling as though I was on a cruise! I heard some excited shouting from the deck above me and when I looked up, I saw a young man with Downs Syndrome. He was having a brilliant time being buffeted by the wind, he was leaning into the breeze and pretending to be blown away by it. I sat watching him for ages, he was so happy and absorbed in his windy game and he had no inhibitions at all about the noise that he was generating, but I enjoyed the happy sounds.

His father was close by, but not too near so as to cramp his son’s style. I admired that approach and it reflects how I tend to be with Joshua too – he needs his independence and to have what he finds fun, even if it is not the traditional view of what teenagers typically do. I try to stand back when Joshua is dancing or exploring in public, he cannot be left totally alone due to his seizure activity and his lack of sense of danger, but I do tend to keep at a safe distance, so that he can feel safe but also gain some sense of independence, no matter how small. I have now found peace with other people’s staring or reaction to Joshua bouncing in front of a busker or waving at strangers in a cafe. If it makes him happy and does not harm anyone, in fact those two things actually benefit others, then carry on Joshua and fill your boots, I say!

As we get older, typically we worry more about what others think of us and our behaviour, as a result, becomes more inhibited and less natural. This boy on the deck was loving the sensory experience of leaning into the gusty wind, he was having fun and not caring what anyone else thought of him. I think that he had the right idea and I wish many more of us would feel free enough to ‘dance as though nobody is watching’ as I was able to share his joy, just by watching him.

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.