Care in the Community?

I watched the news last night horrified as I saw a broken-hearted mother speak about her campaign for parents’ rights : Her adult son had autism and had expressed his desire to live apart from his family and so he had been set up with a placement in ‘supported living’ where he would have constant adult supervision. He broke off contact with his mother and though devastated, she respected his wishes and left him alone. It seems that nobody was looking after his best interests once she was out of his life. The authorities clearly thought that he had more capacity than he actually did and his status and housing was reduced from supported to ‘independent living’, unknown to his mother. The young man could not cope with day to day decision making and as he missed a review meeting date, his benefits were stopped. He had no advocate or support and eventually his dead body was found in a cupboard after 9 weeks.

Under the current law, his mother had no right to contact or to even enquire as to how her son was, once he had moved away, yet nobody else was picking up that caring role and as a result, he needlessly died. ‘Professionals’ who did not properly know this young man and his capabilities, made a devastating decision about his living arrangements and they did not even need to consult his family as he was deemed to be an adult.

My husband and I watched this news story, horrified, then hugged Joshua closely to us. In many ways, Joshua is actually lucky, as I think life is much harder for those of his peers who appear to be more able than they are. Joshua will never be put in this situation and as such, he will always have his parents there to defend and protect him from the authorities. I do not believe that Joshua is frustrated by living at home with his parents and monthly respite gives us all the break from each other that we need. The much more vulnerable young people have aspirations to be independent and have the same opportunities as their peers – they think that they can live independently, forge relationships or go to college then get a job, whereas in reality they might need a lot of support to achieve those dreams. These young people need to be encouraged in their dreams but the appropriate support needs to be in place to protect them as they are so vulnerable.

The distraught mother that we watched on the news has to live with what happened to her son and she is trying to change the rules so that a positive comes out of this tragic situation. I could feel her pain as I held my own teenaged son close.

Dog Training

Six weeks ago today, our cocker spaniel had three healthy puppies. For weeks, she fed them and cleaned up after them and rarely left their side. But now them have teeth, wagging tails and their own personalities. It feels as though, overnight they went from being dependent, immobile babies, to becoming mini dogs who are now pleased to see me when I get home from work and who are no longer satisfied to exist in the utility room. Their world has grown larger, as this last weekend they sampled life in the snug and the back garden too, now there is no turning back. They have met Joshua and their Dad, Kevin the jack russell, and have even come face to face with the cat, so they have experienced our whole family now.

Thank goodness human beings do not develop and become independent this quickly, as it already seems to have happened in the blink of an eye, that Joshua has turned 18 years old. The gestation period for puppies is just 9 weeks rather than 9 months and they are ready to leave their Mums from 8-10 weeks. While Ruby still feeds her pups as a snack, they are no longer reliant on her milk as they are enjoying solids. She is already happy to leave her brood alone,  so she is preparing them for an independent life without her. So the canine world appears to be much better at transition than I am, as it is the natural order of things. In the animal kingdom, if Joshua had been born into a pack, with his difficulties, he would not have survived. While we tend to nurture our weakest family members, the harsh rule of ‘the survival of the fittest’ in the wild, would definitely have worked against Joshua in the wild, as he would have been the runt of the litter.

We have often supported the underdog: I can remember when we bought our first cat from a pet shop, excited to have our first rented home together. In those days, pet shops were allowed to display kittens in the shop window and we spotted this black and white litter one weekend, while we were viewing rental properties in a new area. We found a small terraced house to rent in a village and one of our first purchases was a kitten. My husband went to work and was to collect the kitten, but rather than the feisty, boisterous one that we had chosen the week before, he came home with the small runt of the litter, saying ” Well, nobody else would want this one, so we have to take care of it!”. With love, feeding and encouragement, Harvey grew to be a strong cat who lived all of his 9 lives. Our first dog together, only had three legs, but he lived life to the full and was always ready to play. After he had been run over and the vet had removed his damaged leg,I would visit him at my mother in laws house, where he lived while I was at university. She was protecting and nursing him through his recovery, but he expected me to play stick with him, much to her horror, as he quickly adapted and bravely triumphed over adversity.

With hindsight therefore, I can see that perhaps through our early pets together, we were gaining valuable insight into our future outlook for parenting Joshua, more than ten years later.

Moving On Up Now

I saw on Facebook yesterday that several of Joshua’s peers had sat their last A level examination and so their high school career’s were over and university would be , all being well, beckoning them in the Autumn. I wish them well and hope that they get the A Level results that they need to progress. I am able to be pleased for them, while at the same time, being sad for Joshua, that he is not on the brink of the same exciting experience. Before Joshua was born, we would have expected our offspring to go to university, like his parents, to complete a degree and go on to develop a career. But those hopes were dashed when he was 4 days old, when we had to adjust our expectations, to focus on achieving more basic milestones such as walking and talking. I have had 18 years to adjust my expectations , so this realisation is not as painful as it might once have been.

I am very thankful that Joshua has the benefit of an additional year at school still. I am attending an Open morning at school tomorrow, and I already have a list of questions for his teacher about his year ahead. When he joined 6th form two years ago – where did that time fly to? – they were clear that 6th form was all about preparation to leave school and certainly  we seem to be on the home straits now. I am hoping that school staff will be able to guide us through our search for appropriate daycare. Having recently searched for , and found, respite locally, I am more confident than I was this time last year.  I am also more confident in Joshua’s ability to adapt and embrace a new provision. He has made me very proud over how well he has taken to his new respite provision, without so much as a backward glance. Surely staying somewhere overnight for the first time,  must be more daunting than going somewhere for 6 hours in the day, and he has taken his weekends away, totally in his stride.

I find that it is not helpful to spend too much time speculating over what might have been. It is much more useful to focus on where we are now and the road we are travelling on, rather than still dreaming of the detour we might have taken once and where we might have ended up. My Mum was pragmatic like that, she would not have entertained any fanciful daydreaming about what should or could  have happened, she would have kept me on the path where we are and would be cheering from the sidelines, every step of the way. So that is what we are going to do, play out the cards that we have been dealt and celebrate every success along the way.

The Impact of Joshua

For anyone to suggest that Joshua has ‘ruined my life’ , or has uttered the words ‘what a shame’ when they have seen him, has missed the point totally:

  • They cannot have seen the way that Joshua’s face lights up when he sees me. They must never have witnessed the endless bear hugs that I receive, when he squeezes me tight, while he gently pats my back or strokes my hair at the same time .  They have not witnessed the twinkle in Joshua’s eye as he pats his chest , then points at me, in his sign language for ” I love you!” These are all clearly Joshua’s expressions of unconditional love for his Mum and they are to be envied, rather than being pitied. How many other mothers of 18 years olds receive such blatant expressions of love from their 18 year old sons
  • My life is much richer for having Joshua in it and , although he is sometimes  challenging and demanding, I would always rather have him in it, rather than not. To suggest that Joshua has ruined my life, is to imply that I would be better off without him; but how insensitive and inaccurate would that be? How could anyone suggest such a crass thing to a fellow human being? When I think about the occasions that we might have lost him, during surgery for instance when he has had general anesthetic, while waiting for him to come around, agonising, I have never once thought that it would be better for everyone if he simply did not wake up. Instead I have paced around , counting the minutes until he is awake and there, smiling back at me. It is the same when Joshua is at respite, while I love and appreciate the brief break from my caring duties, I am always desperate to get him back as I miss him.
  • So what have I missed out on by having Joshua in my life?  We have not had the luxury of dining out  in fancy restaurants or had luxury holidays, where the likes of Joshua is not welcome. But I am not so shallow as to think that is something that matters at all. We have not been able to share the pride of our son passing his GSCEs or pass his driving test and Joshua will not be setting off to University this autumn, but that does not matter in the grand scale of things. We have celebrated much more significant life skills than those : Joshua has walked, against adversity, but his determination helped him to walk. I celebrate whenever Joshua uses a new word or phrase and his clear ” thanks yous” in cafes and shops, make me beam with pride at my rare, well-mannered son. I am sad that I will never be the mother of the groom and we will never be grandparents, but those two life stages are not actually guaranteed to any of us.

Joshua has not ruined my life,rather, he has enhanced it; I have experienced first hand what it is like to be a mother and that hands-on nature of parenthood will continue for the rest of his, or my, life, whichever ends first. Joshua going to special school has given me the opportunity to meet some kind, caring friends, who I would not have known even existed and that would be  a great loss to my life.  Being Joshua’s mother has given me the insight to be able to share my thoughts and experiences in this blog, which is a vehicle for expression that I really value in my life. But most of all, without Joshua, I would not have experienced generous, unconditional love that sustains me through difficult times and lifts my spirits. Anyone who suggests that he has ruined my life, must be blind.

Full On

Lately I have been meeting Joshua after school on Thursdays and yesterday afternoon was pretty full on and yet he took it all in his stride : I had a meeting at school at 2 pm, with his teacher and the manager of his new adult respite provision, so that she could ask questions about him and learn how he acts in school. She will also visit him at his current short breaks provision later today , so she will then be fully briefed on how he behaves in all three settings. We had our meeting in an office within the 6th form so I was pleasantly surprised not to hear him crashing around and kicking doors, while we spoke. It turned out that he was protesting on the floor in a cookery lesson, so that is why all was quiet! But he was pleased to see me at the end of the school day, he gave out a few hugs and kisses to selected staff and pupils, than began waving goodbye as he rushed me out of the door then slowly walked downstairs, with all of 6th form behind him, having to go at his slow pace – I enjoyed the banter that his peers gave him.

I drove him to our home town, but to his annoyance, not home but straight to the hairdressers where he had a 4 pm appointment for a much-needed trim. The stylist was still busy when we arrived, so he busied himself by sweeping the floor and watching himself on the salon telephone in the many mirrors that surrounded him, so he was pretty happy. He was less happy to be dressed in a gown, which he rejected in favour of getting hairy clothes. I held his hands while he was first of all clippered around the back and then she used scissors on the top of his hair so that it is still floppy but neater than the pineapple-look that he had been sporting. He was delighted with the end result, admiring himself in the mirror and happily posing for a photograph.

Then we rushed home and had a quick pasta tea. He began to get himself comfortable in den on the settee but I had to persuade him out again, down for a 5.30 Doctor’s appointment this time. He was not impressed and put up a fight, but I insisted that we needed to get his itchy stomach looked at. It was lucky that we were the last appointment of the day, as he was grumpy in the waiting room, throwing the magazines on the floor, trying every door that he saw and throwing leaflets off the desk, behind reception. Finally we were called through by a smiling Doctor and he was content to lift his t shirt to show her his spots, then while we talked, he stood up over her, using her telephone. We were in and out quickly but the waiting room  was deserted when we left, via the pharmacy, to collect his prescription. That was his final stop off and he had had enough and lay on the floor in the chemist while we waited, waving at other customers.

When we finally got back home, after 6, we went straight to the bath as the small pieces of itchy hair down his clothes were not helping preventing him from scratching, so he enjoyed an early bath and  then into his PJs. He was happy to watch Lion King in his bed, satisfied that he was not going to be dragged anywhere else that night. Sometimes he has choices about what he does and does not wish to do, but last night he was dragged from pillar to post in a day of catching up and although he tried to protest, he fell in line pretty well, once he realised that these appointments were non-negotiable.

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.

Check Up

Joshua had a check up at the dentist yesterday before school and he was badly behaved in the waiting room : he refused to sit and wait, but was trying to get into the surgeries where all the action was. He kept pulling my glasses off and throwing them across the room. I took him to the toilet with me to pass the time  ,as unusually we were early, but as soon as we were inside the disabled cubicle, he began to kick first the metal heater which made a great sound of vibration and then the wooden door. So he was being quite a thug. When we returned to the waiting room I found us a seat around the corner from other patients, and I hooked my arm inside his and I sang to him to settle him down and made him laugh by blowing raspberries. Soon enough we were called through to the  special needs dentist, who knows him pretty well.

I was surprised that he cooperated enough to lie in the dentists chair and I held his hand down and she was able to see his teeth and gums. While we have been brushing with an electric brush, it is still hit and miss as to how thorough we can be as he will only tolerate it in his mouth for so long. She said that while his teeth had improved, his gums still looked sore and that he should also have his gums cleaned with a softer brush. She demonstrated and made his poor gums bleed, but he tolerated the procedure. He messed about again at reception as I made an appointment for another check up in three months time.

The dentist is not far from school so I delivered him there in about 5 minutes and he lead me to the stairs that lead to 6th form, there was no doubt that he knew where he was going. He rushed into his classroom making a grand entrance , shouting “I like you” and hugging his TA. He was clearly happy to be there and both pupils and staff seemed pleased to see him too, which I loved. I put his belongings in his locker and said goodbye, but he was busy squeezing his TA so perhaps did not hear me. When he realised that I was going, he chased after me to see “Bye Bye” and give me a hug too.

As I drove back to work, I followed a car with a bumper sticker on saying ‘ My child has autism’ on it and some smaller print beneath it that I needed to get closer to read. I was intrigued as to why you might want to tell other drivers that your child had autism and wondered if it was because the driver or child might show irratic behaviour perhaps. At a junction I got close enough to read the smaller text which said ” My child has autism – Questions are welcome but parenting advice is not!”, which I have never seen before. So this driver must have been bombarded with well-intentioned advice and had finally had enough. But I am not sure how welcome questions about autism might really be as you are struggling perhaps to encourage your anxious child back into your car!

I thought back to Joshua’s behaviour in the dentist waiting room and how nobody had made any comment, the odd stare perhaps, and a few sympathetic looks, but I am struggling now to think of a time when I have been given unwanted parenting advice. Perhaps that is because children with autism can look more ‘normal’ than Joshua – sorry I hate to use the word normal – and so they can simply appear to be naughty. But Joshua with his splints and built up boots perhaps looks as though he has special needs and certainly his learning difficulties are clear once he speaks, so that is perhaps I have been spared that advice and instead I have frequently received the head on one side, sympathetic smile, the pat on the arm or am told ‘well done’, all of which drive me mad but I have learnt to smile graciously,even though I am inwardly snarling.

Strange Sunday

Joshua was very clingy to me all day yesterday; he followed me around all day and he hovered in the kitchen while I cooked, hooking his arm around my neck. All day long he was hardly out of my sight. I wonder if he too was re-living the horrors of last weekend in his mind? Or if he felt odd, perhaps with seizure activity in his brain, and did not want to be alone? But something was definitely different to usual, when he comes and goes from his den.

We made our weekly trip to the local supermarket together, when I allow, and encourage him, to push the trolley for me. He enjoys that but he is a pretty wild driver and the trouble starts when I want to stop at an aisle and select something for the trolley. It is impossible to hesitate, browse and choose which version to buy, it has to be a snap decision that is hurled in the trolley as he flies by! Normally he is happy to sit on the seats while I pack the bags, but not yesterday : he was adamant that he was going to push the trolley out of the shop for me, so I had to pack with one arm and hold the trolley back with the other. Although the man at the till could see I was challenged, it is maybe the first time that I have not been asked if I want any help with my packing! I think he was enjoying the battle of wills in front of him too much.

Despite his unusual behaviour, Joshua communicated beautifully on several occasions with me yesterday : after I had unpacked the shopping at home, he came in to survey the kitchen. He then grabbed a bag of newly purchased satsumas and brought them to me, clearly indicating what he fancied to eat. After tea, we were sitting on the settee watching TV, we had enjoyed an early bath, and he simply came in,sat down next to me and said ” Bed!”, well you can’t get any clearer than that. I hugged him and off we went upstairs, even though it was only 8pm – he had had a busy day after all. He took his bedtime medication and I tucked him in, and as I leaned in to give him a good night kiss, he piped up with “Bye Bye”. What a brilliant way to end a full-on Joshua-filled day!

Dining Out

Eating out has always been  a fun thing to do, before we had Joshua it was a treat night out or a fun way to enjoy family celebrations like birthdays. But when Joshua was younger, dining out rather lost its appeal as it became hard work. He would be noisy and disruptive and he was difficult to keep in his seat as he wanted to find, then stand under the loud speakers to listen to the background music. So we were less keen on meals in restaurants as family parties, they were not relaxing, with one or other of us having to take Joshua out for a walk mid-way through as a distraction, while waiting for the food to arrive.

I laughed out loud at the birthday party depicted in ‘There She Goes’ as it was so familiar to me, apart from Joshua has never tried to remove his clothes to sit in his underwear! But the confusion of the waitress and the pitying looks from fellow diners were very familiar and the desperation to do anything to keep your child quiet, at any cost, so as not to draw too much attention to him, have all been a familiar experience and could only be written by someone who has personal experience of such an ordeal.

Joshua now enjoys the sociability of eating out, and he loves meeting new waitresses and trying to gain their attention.  although his eating can be hit and miss in that environment – apart from ‘Donald’s’ – in that he may either eat everything or nothing. I have finally learnt to have the ipad in my bag, ready for when he gets too restless and often Shrek or Madagascar will keep him calm and quiet and stop him from trying to leave the table. We have to choose our restaurants carefully as we would feel uncomfortable in somewhere too quiet or too smart, that would simply  be asking for trouble and drawing attention to ourselves. Our simple aim, when we are dining out with Joshua,  is to enjoy delicious food without drawing too much attention to ourselves and to get out again, in reasonable time, relatively unscathed.

Dining out on respite weekends and on rare nights out is a treasured  treat;  we are able to linger more over the meal and can choose restaurants that would not appeal to Joshua , either due to the nature of the food – so we can enjoy spicy Indian food for instance – or perhaps an unsuitable environment – such as upstairs seating or somewhere too posh ,full of diners out for a romantic meal for two. what is for sure is that, dining out , without Joshua, is about much more than simply eating.