A Trip to London: Arriving at Our Destination

When we eventually arrived at our destination, we walked out of the station, purchasing a hot sausage roll on the way out as we’d forgotten to have lunch. Hubby led the way to the hotel, finally realising after about half a mile or so we should have turned left at the previous junction instead of right – heading away from the London Eye as opposed to towards it. It was raining but we managed to get there only to find we were in the wrong hotel when we had to go over the road a little further. Why would you have two of the same hotel so close to each other!

We checked in, went to our room, unloaded our bags and had a cuppa before venturing back out. After sitting down I noticed our youngest had wet himself – something that has increased again lately – as usual, he’d not said anything. I’d remembered a change of trousers but had forgotten extra pants other than those required for the following day. Before we did anything else, including having a rest, I went into the bathroom and used the body wash to rinse them out, rung them then placed them on the back of the chair to dry in front of the heater. By this time it was almost five o’clock, getting dark, cold and pissing it down. The plan had been to go to London, have a stroll with our cameras, go on the London Eye, maybe pop into either the London Dungeon or Aquarium before getting dinner. That obviously didn’t work!

We finished our drinks, put on our shoes, established what attractions were open, then ventured back out into the rain. It was pointless going on the Eye in the rain as visibility would have been crap (limited). The London Dungeon closed at five so that left the aquarium. NO! Just as we reached the steps up to the entrance, there was a security man and a sign which read’We will be closing at 5 o’clock today for an event’.  Marvellous! Disappointment swept over all our faces as well as accusations from our eldest. What ever we do is never good enough, not liked, doesn’t want to do, rubbish… I’d obviously failed as the parent to properly plan our trip by ensuring it wasn’t raining and that all sites were open as planned. We carried on walking in the icy wind and rain. We decided to pop into the arcade next door, remembering it being a lot bigger and far better than now. Eventually we went back to the hotel for dinner which again was met with a lot of detesting, further disappointment as well as unwanted comments.

We try to ignore all the negativity as it appears to be our life at the moment but when we can never do anything right, no matter what we say or do, it becomes disheartening. It’s difficult to remain upbeat and positive when life just throws negativity in your face at every opportunity. We seem to be in a no win situation.

A Trip to London: The Journey

The children had both had a half day on the last day of term. We’d booked to go to the Royal Academy of Arts the following day so decided to take the opportunity and stay over the night before – take our cameras, see some sights.

When our youngest got home from school, he wasn’t happy we were about to go back out so suddenly. Thursday is gaming day so he’d expected to be able to play his computer games. Upon being told ‘not today’, he reeled off how we should be doing things, pointing out that going to London straight after school wasn’t giving him any down time. This we agreed but also explained that he’d been given enough warning, although as usually this was met with a ‘well I didn’t hear!’. We finalised our packing, loaded the car and off we went.

Our local station being closed for maintenance, we went a little further out to catch the train, leaving the car in the overnight car park which upon driving into I suddenly forgot which side of the road I was supposed to be driving on. Slightly panicked I exclaimed ‘which side of the road am I supposed to be on?’ to which hubby confirmed the left and in we went.

We caught the train and went a few stops before we were due to change for another line. Hubby was walking off in front and the train we were due to catch was already at the platform. Being an underground train it wouldn’t have taken a few minutes for the next one to arrive but rather than wait he rushed off and jumped onboard. The eldest and I sped up, she jumped on board just as the doors started to beep their warning of closing and I was stuck standing on the platform knowing I wouldn’t make it in time without getting my rucksack stuck as it closed. I put my arms out to stop the doors closing, expecting them to reopen like a lift does, as they used to do, but on this occasion they didn’t. I stood staring down the platform waiting for the driver to reopen the doors but he didn. I had to release my arms and watch the doors finally shut with my family on the train and me still standing on the platform.

As the train pulled away, I called the driver a ‘tosser’ which I thought was under my breath although loud enough that unexpectedly the person near me heard, and I stepped back from the platform edge to think. I didn’t panic but just thought I’d catch the next train and meet them at our destination. I pulled out my phone to text them, realising I wasn’t one hundred percent sure what stop it should be, as this, I’d left upto my husband to plan. Especially as he uses the trains far more than I do. I sent a message, waited a minute but heard nothing. Being the underground I wondered if they’d have reception. Luckily my phone started to ring and it was them. They’d got off at the next stop, which I somehow hadn’t thought of, so told me to jump on the next train and they’d get on when I stopped at their platform. A few weird faces followed as we pulled up beside each other!

Once we were on our way again I started to think about our children and what if they had been stuck on their own. Of course this started to conjure up thoughts, feeling and emotions not required on our trip so had to hold back my urge to cry. I became. little protective of our son when getting on other trains after that or even lifts. It took a few hours to get rid of the horrible anxious feeling, the worry, the thoughts of: what would he do? would he cry? how would he react? It brought home the differences in comparison to other children his age, dragging up to the surface that pang of sadness we try so desperately to bury and ignore!

Stress: The Fun Weekend

The weekend was stressful. Thursday evening while I was messaging my mum and sisters, we established that none of us had sent nan a birthday card. Not because we’d forgotten but because we were seeing her on the evening of her birthday for a get together, only she didn’t know. There were a fair few giggles whilst we thought up excuses for when she phoned along with a few misspellings which eventually had us in fits of laughter. Eventually I decided it was best to order some flowers so that she didn’t think we’d forgotten but mum opted out saying it was best to come from the grand children and great grand children. We agreed on a budget, picked a florest, found a suitable bunch of flowers and I set about placing the order. By the time I’d finished my head was thumping and my neck in pain.

As predicted, nan phoned mum the following morning after the post had been delivered and exclaimed that she’d received no card from any of us which was unusual. Mum said she sent hers on Wednesday and it must have been something wrong with the post. I held off phoning and wishing her a happy birthday knowing I’d have to lie about sending her card but knowing she was out from midday for lunch made it easier.

Friday evening we popped to my aunt and uncles for the birthday surprise. Nan was already there when we arrived but she didn’t have a clue we were going. They’d closed the kitchen door so she was unaware of the food they’d prepared. I leant forward to give her a kiss and wish her a happy birthday and almost fell over my own feet into my cousin! She thanked me for the flowers and said they’d arrivd just before they’d left that evening to come to the house. She wondered who they were from but said as soon as she saw ‘hugs and kisses’ she knew it was me. I take it from that, that I’m the only grandchild left to fully grow-up to stop the ‘hugs and kisses’ phase, but I never will. My nan is very special to me.

Nan opened her card and chocolates, then after a while she handed me the card to spot my mistake. “Happy 80th Birthday….” What? I pulled a face. “How old am I?” she asked. Panic rushed over me – hmm surely she’s not 90! or 70!! Crap, how old is she? “err how old are you?” I asked. “I’m 85. You came to my 80th birthday party at the golf club”. Yes these are the delights of my current deteriorating memory as it consistently fails me. Even my 85 year old grandmother has a better stake on the memory chips than I do at 38!

A while later after a glass of rosé I managed to mix my words and was unable to produce anything coherent, the letters were garbled. Both mum and my nan looked at the glass and said “how many have you had” with a laugh. Whilst walking into the hall to collect my bag, then upon walking back into the dining room, I managed to almost lose my balance and walk into the table. None of this was due to drink but just misguided perception of distance and balance which was obviously a little off. We left a short while after that and I was beginning to get quite tired.

Saturday started off okay but that didn’t last and suddenly went downhill fast. Our youngest didn’t want to complete his homework. It took five hours approximately of coaxing and keeping on at him. He eventually attempted his MyMaths but on more than one occasion he accidentally closed the window which doesn’t save when part of the way through a section, losing his whole attempts.. My husband had a bad head which resulted in a lack of patience and quick outbursts making things a lot worse. He wasn’t able to cope with the argumentative responses from our son and I was left trying to keep everyone in the house calm whilst trying to get home works completed. Eventually this had to be stopped but that meant the loss of computer game time for that day resulting in more tears than had already been shed.

I made Sunday a no homework day as I’d already planned a mummy & daughter day and son & daddy day. The girls went shopping and the boys stayed at home for some gaming fun. We spent a little of what we didn’t have but retail therapy now and again is required. Both children had deserved a treat for good reports and our eldest a little extra for doing well in her classes ready for the upcoming tests. The youngest got some Lego and the eldest picked a top and new shoes.

When we got home neither of the boys were in a jolly mood which led me to believe things hadn’t gone to plan. I established  that our son is heading into the teenager stage of behaviour where he is answering back or being sarcastic, which unfortunately both children get from me. However, this, hubby didn’t like because he loves his daddy son time as they are both jokers and our son thinks daddy is funny. This change in attitude gave a little battering to hubbys self esteem, especially when he struggles to interact with our daughter who has sensitivites to touch and won’t allow hugs or cuddles. For our son to suddenly be less tactile than we are used to was a bit of a blow for him.

Dinner was fraught with arguments at the dinner table, mainly between hubby and daughter and then I had to contend with an hour of crying on our bed while she told me all her problems – always being the one to get into trouble, everything is always her fault, son never gets told off, she doesn’t like daddy, he doesn’t like her, children at school are horrible, they pick on her size, call her twig legs etc…and she wants more attention and can’t help being sarcastic.This went on for a long while and all I could do was console, calm, try and explain certain situations and even give example of my own school experience – explaining how children are, in general, and that most experience the same thing but don’t realise they are all hurting the same. Eventually I was allowed back down stairs to relax for an hour before bed.

Such a relaxing weekend full of enjoyment. Heres to the next one 🍷

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Standing in the Distance

20121103-223251.jpgThe night when all the fireworks displays around the country are shining bright and making the loudest noises.

I like fireworks, NO, I love fireworks. The problem I have is that my son has a sensory processing disorder and for that reason we are unable to enjoy them.
Tonight was a mixed bag of emotions; my in-laws have moved closer to us but even closer to the main centres fireworks display. Yay!!

The plan was to go there for dinner then all pile into the garden and watch the fireworks from a distance; hoping that they’d be big enough to view. It was a little nippy and they started off later than scheduled, but they started with a bang a very loud bang that our son didn’t enjoy. He ran into the house quicker than you can say ‘go’ and closed the door behind him refusing to come out. It wasn’t our house and I wasn’t going to leave him in doors on his own so I tried to get him to watch them out of the landing window – point blank refusal.

There was a little whining and weird behaviour, mainly because it was getting late and not part of his usual routine but also because it was something he wasn’t enjoying. He didn’t like how the noise and vibration of the fireworks ran through his body.
I managed to draw his attention away from the discomfort by giving him my phone to play a game, but it didn’t change the fact that I was unable to go outside like you’re supposed to on fireworks night. I wasn’t able to appreciate the nipping cold air while snuggling into the many layers that I’d piled or do any awing at the amazing fireworks. I did however get to see them from the landing window and towards the end I actually had a big smile on my face, but it wasn’t as enjoyable as it should have been and it tugged at my heart strings.

It made me sad that my son is unable to participate in the yearly enjoyment that so many children love. That we can no longer go to events where fireworks are the main attraction, or any attraction for that matter. We can’t join in with friends and family who boast amazing photos on Flickr or Facebook, or give us their run down of events and their adventures from the weekend that we know we’ll never be able to have.

Next week I’ll give my usual smile of excitement at their stories, show my interest and maybe give encouragement for more, nod and ooo – ar, but deep inside, It will still be hurting!

Occupational Therapy Lifts Weight

I know, I know, there has been a huge gap since my last post – for those who follow anything on my blog then that doesn’t count as you saw a post only a little while ago, but for those who only want to read and relax in the knowledge that they aren’t alone with the stresses of special needs here’s another step forward.

I have many drafts still to complete from the last year but lets just jump straight to the front here, todays accomplishments!

NHS have kept us waiting for just over two years for an appointment for our son to be seen by an Autism and Sensory Processing Occupational Therapist. They are trained and experienced in ASD and therefore know what to look for and implement with regards to integration therapy for day-to-day school/home living. Due to the huge expense and lack of trained professionals the department that our son was referred to was closed and those waiting were placed on a back list. Well, you’ve guessed it, they have employed new staff and last week phoned to ask if they could come to our house and discuss the issues and our concerns.

I’m not going to lie, after waiting two years, the first appointment she read out was snapped up quicker than and toad catching a fly! Luckily that appointment was for the following Monday and with only a couple of days and the weekend to ponder, I had very little time to worry or think about things too much. Roz arrived bang on time and spent an hour and a half mainly listening to me telling her all about our sons sensory issues (sound, temperature, proprioception and vestibular… etc.), attention issues, and the new leg pains along with the general daily self-care skills. A few pages of note taking later she was able to give me a little confidence on the areas they can help with and things we might try while maybe referring him for Physiotherapy or a Podiatrist for the leg pains (that’s to be confirmed).

The next stage is for Roz to liaise with the school and arrange a suitable time to go in and watch him, speak with the staff and get a better picture of his school needs before coming back and looking at implementing a program for home/school.

You see, this makes me happy because I can implement strategies that they can supervise and ensure are correct without worrying that I’ve done it wrong. I can push for the support he needs and the best part is, I no longer have to feel guilty for stopping the private OT sessions that were too expensive for our newly one income family.  I know eventually he’ll be discharged when we know how to do everything properly, but that’s better than having nothing in place at all.

Today, a weight has been lifted and although it’s a foggy and damp day, it’s brighter within.

aMazing

Our son loves mazes and while he was in hospital earlier this year I struggled to find an activity pack that had a maze big enough that wouldn’t take him less that a minute to complete. In fact, I struggled to find any books with a maze in at all and had to send my husband and daughter to the local store to try to find one.

We usually order maze books online but as this was an unexpected visit, I had to think fast and create my own.

Here’s a link to one of the Mazes I created for our son: Maze

My eyes start to go blurry after a while so it is difficult trying to make them large and complicated but this was a quick attempt.

See how you get on.

Reviewing the IEP

Sunday 12 June 2011

Our sons IEP (individual education plan) has been the same for the last year; two objectives that are quite broad in area and not being met or achieved.

These objectives are:
1. To get dressed quickly – put clothes in order and follow the pictures.
2. To complete a piece of work on his own – listen to the task, repeat it to an adult, complete the task and work towards the reward.

We need to change these goals so that they are achievable but I don’t know what should replace them. As you have all probably read by now (if not, then go check out my pages, there is lots of info in different sections to piece together about me and our life. We’ll be here waiting) our son has Autism but high functioning with bad attention and sensory issues to sound, temperature etc. which affect him daily. So while these objectives might seem like something to work on because he needs to learn, he can in fact do them, he just has trouble with the sensory side of life which I’m sure as he gets older he’ll learn to cope with, I hope!

Should we keep the ‘getting changed’ task on the IEP but maybe break it down into chunks so that only the bottom half needs to be achieved first? Do we replace them with more academic type objectives, such as, reach reading level 5 by July, learn 6 x table by end of term?

What kind of things do you have on your IEP?

At the moment the IEP seems a pointless exercise, but as we are on the path for Statement assessment, we really need to work this out.

I’ve been told that the IEPs need to be SMART (specific, measurable, achievable, recordable/relevant and time-bound). For example task 1 should have a time frame to achieve rather than the basic ‘quickly’ along with the help he will receive from a teacher or support assistant and maybe the reward. However, a mixed response on the academic targets; if a child doesn’t have any issues in that area then the IEP is only going to show issue relating to social/self-help skills!

There are a lot of things to learn regarding IEPs and how each person believes the system works.

Until Death Do Us Part

I’ve really struggled this week, trying to remain on a high but to no avail. I’ve been on one for the last 4 months so it was bound to end at some point! I failed miserably to stay happy and the nose dive was sudden; into the abyss of my mind. It was a quick on-set starting Tuesday following a rough weekend which incidentally I’d managed to cope well with, but the extent of all issues obviously took their toll! Luckily today had been a better day and I managed to spend my day pottering around the house without my mind wandering into the depths of dark thoughts.

We were meant to go away for the weekend but decided at the last-minute, with the rainy weather, it wasn’t worth the hassle. A family member decided they were going to leave their spouse and take their child with them and the spouse decided to go searching, phoning constantly and eventually turning up on our doorstep. This in turn set my husband into a low spiral which then had knock on effects. I’ll leave it up to your imagination on how the events played out, but suffice to say they eventually got their child back and a legal battle has commenced!

By the time I got to Tuesday, I’d already lost it. On Tuesday night I couldn’t sleep and by Wednesday morning my alarm clock had decided to reset itself and was going off at 4:30 am. Obviously I noticed just before getting up, but it had gone on and off every 10 minutes prolonged by my need to push the snooze button for an hour, thus disturbing the little sleep I had managed to get. I don’t think I looked too impressive, mood wise, when I went into school to help, but the children took my mind of things and they made me smile, even if it was temporary.

What made it worse, was Wednesday afternoon I received a phone call and was told places hadn’t been allocated for our family at a relatives wedding or the breakfast meal because I’d failed to send back the R.S.V.P. Now that hadn’t bothered me too much, I was in two minds whether to go anyway. What did bother me however, was that I’d already spoken via email to the grooms mother and explained our family situation, our son having Autism and sensory issues and not being able to confirm until closer to the time. I’d said, we’d likely be able make the main event but probably not the evening meal/disco due to the noise and days overload.

This got me thinking, which at first I hadn’t thought about, but why ask if we were going to attend before sending out the invitation, to tell me in their reply it was okay that we wouldn’t be able to confirm until just before, to then send me the invitation and not tell me directly but via another member of my family that we were now unable to go. Had they done it because they hadn’t known initially that he has special needs and the thought of it and their ignorance scared them. Were they expecting a situation similar to ‘Rainman’ with an impact that would spoil their big day?! Do they not want my son at their wedding!?!? I’d already explained he wouldn’t cope with the afternoon/evening so telling us we can’t go in the morning is telling me they don’t want us there at all!

The emotions this thought conjures up are powerful, hurtful, bitter and lonely – the latter because due to the sensitive nature of these thoughts, discussing them with my family would be too depressing for them to cope with. I have no one else to tell that I trust and those I do trust I don’t think would want to deal with my burdens and unhappy thoughts. This really wasn’t what I needed during the week of hell.

Colour Co-ordination Revisited

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Since my last post about separating the lego, its now complete! Yay
What fun we had, breaking up tiny pieces that were stuck together.
Anyhow, you can see they are now stored nicely in their tubs ready for use.

The new task in this room is to sort through the comics and magazines that are taking over the corner shelf, plus the puzzles. I think the puzzles, while good, are too young for son so might have to go (especially as he doesn’t play with them).

Dining with the Stars

Every year that we’ve visited WDW with the kids, we’ve booked a character breakfast. On the first visit we were supposed to fly when the Hurricane hit, so went two days late and spent just over a week with empty parks, which for our first visit was great. We hadn’t booked in advance for the character dining and strolled into the Norway breakfast with the princesses.

On other visits we booked 180 days in advance. So far we’ve been to Cinderella’s Royal Table, Crystal Palace, Hollywood & Vine, Akershus Royal Banquet Hall, And Tusker House restaurant. Of the main parks that just leaves the Garden Grill restaurant which I’d love to try, although looking at the menus, there isn’t much of a selection.

We’ve discussed our dining plans for this years visit and we decided that as we can’t guarantee how our son will cope in the echoing restaurants, waiting for the characters to get to the table (although, sure he’d be fine now he’s a little older) and getting up on time, it will be best not to book a breakfast this year.

I have mixed feelings about this decision, I really love character dining and might change my mind but for now, character dining is negative.

Understanding Extreme Love

Following on from my earlier post Louis Theroux, I’ve skim read a forum thread on the title ‘Louis Theroux – Extreme Love: Autism’.
Parents of children with Autism and other special needs don’t like the title!

I don’t get it?

Can someone please explain it to me?

This is a two-part documentary on Autism and Dementia showing a school and families who struggle with the day-to-day life. I won’t discuss the dementia documentary but if we look at the Autism one: its supposed to depict the life of families struggling to cope, dealing with and providing care for a child or children who are on the Autism Spectrum and a school that provides a great deal of support and therapies. Its to highlight the additional care and love we give to our children, even through the stress, heartache and worries that it produces.

Lets look at another word for extreme: great, exceptional, intense, excessive, maximum.

Whats wrong with the title? Extreme love – say it ‘Extreme Love’ – do you not provide a lot of care and show extreme love to your child with special needs?

Colour Co-ordination

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Along with my previous post ‘Car Rally’, this other sudden need to organise his Lego into colours has coincided within a day of the car alignment. Maybe he’s not had enough activity this week and is bored? Easter break is finished now and they are back to school today, so hopefully he’ll burn off some unwanted energy (but I know he’ll also start to overload)