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.
When I was pregnant with our son, the effects were completely different to when I was pregnant with our daughter. During my first pregnancy I was climbing two stories of warehouse racking like a monkey or jumping across, between and over pallets of letterhead, envelopes and leaflets – all to the exasperated cries of colleagues ‘Jamie get down before you fall, you’re pregnant!’. Not that I couldn’t have fallen at any other stage in my career, yet for some reason, when you’re pregnant people become over protective for the life you’re carrying. However, with our son it was a whole lot different. Gone were the feelings of sickness where I had to snack non stop throughout the day to stop it, whilst the new girl looked on as if I was a pig. Of course we did inform her that I was pregnant after a few days of her sitting and staring, wondering how I could eat so much and put so little weight on.
Upon my visit to the clinic at twelve weeks, unbeknownst to me, I saw the head midwife. I was asked if there were any troubles or concerns. I had one: having been pregnant before this was mainly routine, only this time I had slight aches and twinges in my groin. The midwife told me this was all a normal part of pregnancy and likely to increase as the pregnancy progressed due to the hormones relaxing the ligaments. If it became too uncomfortable I was informed paracetamol would be appropriate to use.
Stupid that I was I never said another word. As it progressed I just remembered what I was told and kept reminding myself when I needed a pillow in between my legs at night that these straining pains were all normal. However, little did I know that although some women get them, it isn’t normal and generally support, monitoring, birth planning, and possibly a girdle is required. Careful delivery is required to support the pelvis and prevent the legs opening too wide putting strain on the joints.
Similar to my first pregnancy I was overdue – I went in for a sweep but nothing! The following evening about midnight I had a slight twinge and a pop to which I jumped out of bed extremely quickly, just in time for my waters to break and gush all over the bedroom floor. Lovely! Never having attended an antenatal class before, nor dealt with my waters breaking – in fact for my first pregnancy I was asked if my waters had already broken because when they tried, almost nothing came out. Id like to think that I’d have noticed a waterfall between my legs! Anyway, I digress – not knowing anything about waters breaking, I folded a tea towel and put that between my legs to catch any excess liquid, expecting it to be constantly leaking. Yes, you may roll your eyes at my stupidity and mock.
We got our daughter out of bed and drove her to my in-laws. My mother-in-law gave me a hesitant but unexpected hug and we were back on our way. We thought going around town on the motorway would be the quickest route but manged to get stuck in traffic due to roadworks – yes at midnight; lots of traffic! The contractions were increasing and panic was setting in so we phoned for an ambulance just in case. They were also stuck a way away so informed us to let them know if we managed to turn off before they got to us so they could be rerouted. Luckily, the inside lane started to move and we managed to get off back on our way to the maternity ward.
When we arrived, I waddled up to the reception desk with the towel still between my legs and informed one of the nurses. I received a look, a condescending speech about only requiring a small pad for the odd drip where she requested I remove the towel, handed it to her and she threw it into one of their bins. ‘Well, really! Its not as if they supplied me with a birthing manual!’ I was taken to a birthing room whilst being informed the birthing pool wasn’t available as it was already in use by another mother. I was offered a large birthing ball, being told it would speed up the delivery while reducing the pressure on the pelvis. I rolled and bounced in between each contraction which came in waves with extreme pelvic pain. I was given gas and air, although how much it worked I don’t know. It hadn’t worked at all during my first pregnancy, yet I’d resorted to an epidural after being in first stage labour for over 48 hours, lack of sleep and exhaustion. When our daughter was born, I passed out after for a few minutes while they cleaned her up a little. This subsequent birth was moving much faster.
Just under four hours of a lot of “fuck, fuck, fuck, ouch, ouch, ouch, fuck…” to which one of the midwife team came in to write up notes on my progress. She told me that, “that language” wasn’t really necessary – she almost got a “fuck off!” but instead the guilty side of me sat on the ball, teeth gritted and lips pursed tightly shut until she’d left the room for a release of “fuck, fuck, ouch..you fucking sit here… fuck, fuck, ouch ouch..”
I wanted ‘my’ midwife but she was busy delivering in the next room. I was in so much pain and discomfort that I was literally screaming her name with each contraction. One of the midwife team wanted me to lie on my back so that she could check my progress and how dilated I was. When I opened my legs the pain was unimaginable. I refused to let her anywhere down there and clamped my knees shut! I then noticed her dirty hand brace and that was it – luckily hubby stood in and blatantly told her I’d said no, seeing how much pain I was in. At that point I was trying so hard to hold back tears. That made her a little angry but just at that point my midwife came in. They exclaimed I’d refused to be checked, not hiding their anger, however my midwife was lovely.
I told my midwife I needed an epidural as I couldn’t cope but up until then the anesthetist had been busy and unable to attend. I told her I was unable to relax enough to open my legs to be checked but at that stage I was getting the urge to push. Non of which I’d experienced previously due to the epidural. At the same time I was informed that the anesthetist was on his was to which I exclaimed I wanted that epidural. My midwife spoke to me calmly and explained that if I really needed it I could but with every contraction, as I push the pain would subside. ‘REALLY?!’ Shock and relief. Again, after previously having the epidural and never having received that all informative birthing manual that describes the whole process in fine detail from start to finish, I was unaware that it would be quicker and easier to push.
Eight minutes later our son was placed into my arms, me with a second degree tear and luckily, not as much pelvic pain. I waited to be sutured and after a while I was escorted into the bathroom to clean up. I was too weak to stand for long so instead of the welcoming shower the midwife had planned for I had to use the bidet to rinse, where I almost passed out. My eyes blacked out, all sounds became muffled or distant as I told the midwife I was going to faint, and I screwed up my eyes holding onto the side of the bidet in hope I wouldn’t fall off. She helped me dry, carefully escorting me back with the support from my husband, back to the bed where I found I couldn’t lift my legs on their own without using my hands. The midwife checked my vitals, then offered me a cup of sweet tea telling me it would help. I agreed. Later, on my notes, I notice she wrote “requesting a cup of sweet tea” – ‘Hello! No I didn’t, you offered and I said yes!’
It wasn’t long before they were informed a bed was available in the ward, so they wheeled me up. Luckily it was a private room – YAY! No strangers to share with or pretend aren’t looking at me. I was given a buzzer to request support getting in and out of bed due to my pelvis and when the senior midwife arrived later that morning she informed me I should have mentioned it in my clinic visits. I told her I had mentioned it to her on my first visit and was told it was all normal, to which she gave a slight ‘huh’ response and quickly moved the subject on realizing she’d made a mistake. I was informed I had SPD: Symphysis Pubis Dysfunction, or DSP: Diastasis Symphysis Pubis and needed to see the physio to assess my movement before being discharged. I was therefore advised to stay in over night. That didn’t quite go to plan as the physio was off sick the following day so after a few discussions with the nursing team I was allowed to go home with a referral the following day.
I spent the next couple of weeks lifting my legs by hand until I was able to move them without as much support. However, even today during the menstrual cycle I’m unable to shift boxes or items with the sides of my feet or push a shopping trolley without receiving straining or shooting pains in my groin. Some say that if you control it, you can prevent it worsening with subsequent pregnancies, yet others say theirs has increased with each one. Bearing in mind I was unable to lift my legs at all and it hadn’t fully resolved as expected, we decided it was best not to put my body through that again – so we stopped at two.
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 🍷
What do you do when your child is verbally bullied on the coach, day in, day out?!
Our eldest receives free transport to the secondary school she attends but her friends do not go on the coach she’s been designated. Every morning or afternoon, the children push her aside and bundle on to the bus trying to get to the front seat of the coach. The elder children go to the back, as you’d expect, so the next best thing for the lower school children is to fight for the front instead. If our daughter gets on the bus before anyone else arrives, she’ll sit at the front, not because it’s the popular spot but because it makes are feel comfortable being able to see where the bus is going once it starts to move. However, there are a few girls who like to make a big fuss most mornings about this and will either barge past her which isn’t hard as she is petite for her age, or will make comments on the way past or while sitting behind her.
Due to the nature of the issues that have happened since before she left the Juniors and went up into Secondary school, I had to liaise with the school ‘Pastoral Care’ to make them aware and to highlight the issues that she was dealing with without telling anyone. They informed me and later spoke to her, that she must tell them of all incidents or they are unable to work with us and fix things. So, suffice to say, she reported the verbal taunts from one girl on the coach but now the friend of this girl has started in her place.
I don’t want our daughter to get pulled into the game by retaliating, which is what she is thinking of doing by replying with short remarks in reply, but at the same time how do I get her to stand up for herself without making things worse for her re: school ethos and rules!?!
Its like having a small blade pushed into your side and slowly twisted; apart from forcing your child to keep reporting bullying or for you to be constantly on the phone snitching on the kids doing the dirty, what else can be done. You have to listen to your child vent about the abuse that they receive and really, apart from follow the procedures, you and they, have to endure it and carry on as if nothing is happening.
Over the last few years we’ve taught our daughter how to vent to prevent physical and verbal behaviour which we were receiving in the home. The anxiety levels were extremely high although now we have them at a reasonable level but more than the typical child, and there were a lot of leg, arm and hand flaps with temper tantrums. These are all things that we now have under control but not something I want to regress!
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.
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.
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.
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.
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).
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?
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)