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.

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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.

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.

Life changing

Having a child with special needs changes your outlook totally, in my experience, nothing is ever the same again. Our experience of life is simply different from ‘mainstream families’, perhaps a more exaggerrated version? All parents worry about their children, of course they do, but the types of worries are different : I do not worry about Joshua making friends particularly, what career choices he might make or his academic school record. Last week Joshua was given a certificate of achievement and it was for following his peers to the next activity without prompting! That would be taken for granted for a normal young child, but it was something to be celebrated for us. We learn to enjoy our victories whenever they arise and try to allow them to compensate for some of the tougher times, so as to sustain us.

I am on ‘red alert’ almost all of the time: even if my eyes are not on Joshua, which they mostly are, then my ears are pricked for unusual noises from upstairs It is hard to distinguish the noise of a 9 stone teenager falling to the floor in a seizure from the more rhythmic sound of that same teenager emptying his bookshelf in his bedroom onto the floor until you have heard both sounds several times as I have now learnt to recognise both and to ignore one. Even when Joshua is not with us, when he is in respite or at school, my mobile phone is always close by and I am always ready for that call. Joshua is at his respite provision this weekend and sadly, due to the 999 call and hospital admission last stay, it has dinted my confidence and now I am half -expecting it again. We will need some incident-free weekends for that nervous feeling to disappear.

I enjoyed another episode of “There she Goes” yesterday and their family birthday meal out with autistic Rosie, was so familiar to me and made me laugh out loud. So simple family traditions, such as a birthday, are not the same when you have a child with special needs, as it became about her even though it was her older brother’s birthday party. They had to move tables as she was too disruptive and they even brought dough balls from another restaaurant to keep her quiet. The waitress was clearly nonplussed as to how to handle this dysfunctional family. We have had numerous family meals when we have taken turns at walking Joshua around outside or taken him to wash his hands to distract him or to calm him down. Thankfully these days he is better than he once was and he enjoys eating out and I usally take the trusty ipad along with me too, as back up. But the prospect of a long lesiurely family meal in a restaurant is often a daunting prospect even now.

There are so many ways in which I, or my life, has changed since Joshua came on the scene and the impact is permanent I would say. I can’t go back to yesterday, because I was a different person then. I should also say that not all of the changes are negative ones : I am much more aware and tolerant of differences than I once was and I certainly do not fret about things that really do not matter anymore, like having a tidy house – what is the point when I pick up the cushions that Joshua has thrown on the floor a thousand times a day. I recognise and even seek out, kind people and I no longer waste my time on those who are not good for my mental health. I have made so many new friends as a result of having Joshua, who help me daily to get through, and I am very grateful for that and for them.

When people told me that having a baby would change my life, even they did not realise by quite how much I am sure.