Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx

Anniversary- at Bletchley Park

Our first anniversary was spent at Bletchley Park- Home of the codebreakers.  I know it doesn’t sound very exciting but to nerdy history obsessives like me and my husband (I’ve converted him) it was something we really wanted to do.  The office in the picture was Alan Turing’s, it’s where he actually worked.  We saw the enigma machine’s, we saw part of the thinking machine working, we learned so much more about the Polish contribution and the other great people who worked long hours, in secrecy to help stop the war.  There was loads of stuff I didn’t understand, the actual maths behind it, and the works of Alan Turing that were on display were gobblydegook to me.

Then when we watched the Imitation game we used our new knowledge to impress eachother “that’s not the mansion we saw, google where that one actually is- see I told you it wasn’t the real one” etc.  It just brings it all a bit more to life walking in the footsteps of giants.

We got to eat hot food with no one moaning for a wee, or a drink or “can I try some of your food” which was bliss.  We didn’t go anywhere fancy, but it didn’t matter, just as long as we got to eat together and have an uninterrupted chat.  Time together is not something we get much of, which is why I wanted to go away for our anniversary, instead of just going for a meal locally.  We don’t blame the kids for the time they take up, but having three very demanding children at home and one who is just as needy even though she doesn’t live here, means having the odd weekend away is a big treat and something we need to recharge our batteries and reconnect.  We sometimes lose ourselves in the day to day challenges and lose each other.

Its his turn to pick what we are doing next year.  To be honest I don’t really care what he picks as long as he builds in a hot meal, and some cocktails!  I think when you live lives like ours, priorities change.  Fancy hotel, bar, pool- ah you can keep them as long as I can have a sleep and a hot meal……..maybe a pudding too!

xx

First day at nursery school

On Monday, my baby girl started nursery school.  She has gone to a private nursery since she was 18 months but she calls this “nursery school”.  We call it foundation stage 1.  She is in full time eating dinner there and having to wear a “nooniform”. She has been so excited to start, going to her big brothers school.  She has dropped him off and picked him up with me over the last year so has known the teachers and some of the kids already.  The foundation stages, 1 and 2, are in the same unit so some of the children from last year are still there which made her happier.

She had a home visit from Mrs B and Mrs H where we did some paperwork and they played and talked to her.  For someone usually quite shy they brought her out of herself and got her talking.  On her first day she said “I am going to talk to my teachers, I won’t be shy” which was my big worry.  And when I took her in Mrs F asked her if she wanted to play play-doh and she said “no I want the sand please” so I was really happy as I thought she might be a people pleaser and just go along and not cause a fuss.  So I felt a bit better leaving her.

I know she’ll blossom, I know she was ready, but I put on her uniform and wanted to cry.  She looked so grown up.  She’s my baby, sandwiched between two losses and has been my little buddy for the last year, we have done loads together and I find I’m a bit lost without her.  I know I will fill the time but shopping and gardening won’t be the same without her.  Letting her go, knowing she’s my last was harder than I thought it would be and I am a bit sad but I know in my heart it’s right for her.  It’s not about me, it’s about what my beautiful little girl needs to fly!

She came running out of school yesterday and up into my arms babbling away about her day, and her dinner, and her friends and painting which is wonderful for me after having 2 non verbal kids and home school diaries in which to communicate.  She is just so happy, carrying her book bag, showing me her hanging-up-her-coat skills (which she loses once she walks through our front door), discussing her paintings in great details and just talking about her new experiences.  She finds wonder in everything. She had to do a booklet “all about me” to take in on her first day, so did a self portrait

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This is her picture of herself.  I think it’s great for a 3 year old, but then I’m biased.

So my baby has taken her first steps into the big world.  My job is to support her and to catch her if she falls, and set her back on her feet.  Right now, I’m looking forward to 3.15pm and getting my big hug and all the day’s news.  Oh and another painting!!

 

xx

Miscarriage-it’s not like on tv.

I assumed that miscarriage happened like on tv, you find out you’re pregnant, you bleed, you go to hospital, you come home and try to get on.  However mine lasted what seemed an absolute age.

I didn’t feel pregnant, I took the test because I was late.  It was positive.  I didn’t get any symptoms and after having 5 previous pregnancies I kind of knew what to be looking for.  I went to the doctors anyway, Emily made me, and they did a repeat test and bloods.  After having a previous ectopic they wanted to keep an eye on the hormone level as it can indicate ectopic if it doesn’t get above a certain number.  A week later I was back with spotting and lower abdomen pain and a slight fever.  My GP taking no chances sent me straight to scan to check it was where it should be.  It was and everything looked ok except I still didn’t feel pregnant.  I was booked in for the following week for another scan when they would be able to see a heartbeat.  In the mean time they drew new bloods.  I phoned for the results and the numbers didn’t work.  Pregnancy hormone usually doubles every 2/3 days and mine didn’t sound high enough.  I could hear the nurse on the end trying to do a positive voice “I’m sure if we sat down with a calculator it’s high enough” but I knew then that this baby was never going to happen. No one thought I’d have coped anyway.

At the next scan the blob had grown but I had a “bulky” uterus. “You may have got your dates wrong, come back next week and we’ll see” accompanied by a sympathetic head tilt and smile.  They put your results in a brown envelope to take back to EPAU (they eventually got their own scan machine so you don’t have to sit with pregnant women) and who wouldn’t have a look at their own notes?  Gestation was 5 weeks.  I knew that wasn’t right.  I went back, and I told Leon that there’d be a heartbeat, I know how cruel the universe can be, he didn’t think so.  There was.  Very slow, the sonographer had to have it confirmed by a colleague.  The doctor talked to me and said I may start bleeding at any time, I told her I hadn’t stopped.  And then I stopped bleeding, so I thought maybe, just maybe I did get my dates wrong, maybe his heart had only just got going and it would get stronger.

The following Tuesday I was back at the unit again.  They had changed floors and the scan room hadn’t been set up so I was sent down to the pregnant women bit to wait my turn.  Oh I should mention that Emily had come with me on every visit.  She was working at a hotel at the time so changed shifts to fit in with my appointments and my mum had the little ones.  She is someone you want to have with you at times like this as she is amusing- not always on purpose which is even funnier.  We were in the waiting room and a woman was staring at Emily whilst sucking on a juice box.  It wasn’t just looking it was staring and aggressive sucking.  She was whispering to me “why am I being stared at in that way” but I couldn’t reply as I was sniggering with my face turned away.  I suppose you had to be there.  Anyway scan time came and there was no heartbeat.  She got a colleague to confirm and asked if I wanted to see, I did as it was going to be my only chance.  Then they put us in a room with sofa’s – a bad news room- and did her report.  I had seen gestation 5 weeks, gestation 6 weeks and this one said Gestation 0 weeks.  I was offered 3 options, wait and see, medical management with pessaries or vacuum.  I wanted to go home so took the pessary option.  I had to have bloods done first and they’d take an hour to come back.  Emily phoned work and said she may be late, explained the situation and told them to “fire her then”.  I asked what was wrong and she said they’d been “nobs” but I know she would have risked her job for me.  She needed to be there for me.  Leon had been phoned and told to pick up the little ones etc.  I got the pessaries eventually and given a shed load of codeine then sent home.  Come back in 2 weeks for a check up.

So on the 24th November, I had really bad, what felt like labour pains and copious amounts of bleeding.  It was truly truly awful.  The codeine didn’t really touch the pain, and I couldn’t sleep, probably because I’m a self recriminator and I was trying to figure out what I did wrong.

2 weeks later I had a positive pregnancy test at the hospital, scan sent home come back next week.  We watched some good Christmas films, me and Emily.  She kept my spirits up, and the littlest vampire was on which was a trip down nostalgia lane for us.  They Kept coming back positive, and on the 29th December I had a scan that showed a small “mass” that the doctor said would pass naturally.  Hurrah!  Finally discharged.  Errr……..no.  After a Consultant had seen the file he wanted me in for an extraction the next day- buggered up Christmas, now New Year too.  Dropped off- no one allowed to stay, picked up a couple of hours after surgery.  I’d given Leon my engagement ring to keep hold of and he’d lost it somewhere. No big deal.  In the car, nothing to say.  Got home, nothing to say.  Took codeine, went to bed.  Spent the next few days in a fog.  My mental health did get progressively worse (that’s a different tale) but I never realised how long miscarriages last. And just how emotionally draining it is to go back week after week, to be given hope then it be taken away, not to mention the physical toll.  Feeling like a failure, again.  Being given a number of a counsellor you’re never going to call.  Feeling so alone.  Crying over nothing.

“It’s probably for the best” “you can try again” “you’ve got four already- be grateful” are phrases you don’t really want to hear.  I don’t know how couples go through it, time and time again.  They have my admiration, they must be so strong.I plant another tree and plan another tattoo.  Maybe I’m just daft- I know not everyone even sees it as a baby til a lot later, but I do.  I saw him on screen, his heart tried so hard to beat.  He just couldn’t do it.  In my darker moments I think “maybe he didn’t want me to be his mummy, maybe he heard people saying I couldn’t cope, maybe he felt unwanted”  I know it’s stupid thinking but it’s when I’m low these thoughts come.  I have four beautiful, healthy children that drive me insane at times.  I love them and am so grateful for them but it doesn’t mean I can’t take a moment every now and then and think on what could have been.  I know that without my parents, my partner, Emily and my aunt and uncle I couldn’t have got through it, I may not have a large support network, but what I have is small and mighty.

I looked around that waiting room every week and hoped and prayed that those women would have a different outcome and that they’d get to hold their angels.  I really hope they did.

 

xx

Max

Max is my eldest son, second oldest overall.  Him and his sister Emily have a different dad to the younger two.  The dad wasn’t really interested in us until he had a heart scare a couple years ago then he started to take an interest- that’s led to problems between Em and her dad but they are both grown up they can sort it out between them.

Recently Max has been having a really hard time, his sound sensitivity has got worse and although we have him in a lovely placement now I suppose it’s hard for him to forget his college and last couple of years at school.  He now works in a park that has a café and a “learning room” where he can (allegedly) learn to use a washing machine, learn to wash up, sweep and other household skills.  He didn’t really take to that as he is a lazy little sod at times but as he loves being outdoors he does ground work- weeding and such like, cleans in the café, shops for stuff, gets to drink mugs of tea and has done sanding and paint stripping.  He goes 4 days a week, five hours a day and has a 1-to-1 to support him.  It was going well but I didn’t think about the summer holidays where there would be more children using the facilities, he doesn’t like squeaky children.  A couple of week ago I had to go collect him at lunch as he had hit his head so hard during a meltdown he had made himself bleed.  I picked him up and brought him home, made him a cup of tea and got a jigsaw out. He can’t talk except to make the odd request and every method of communication I’ve tried with him has failed as school and college never listened and never used it so there was no consistency.  Starting from scratch now using PECS and Makaton but it will be a slow process.  I called “work” and told him he was having a week off.  The doctor had previously prescribed some anti anxiety meds (I hate giving out meds ) so I started him on a small dose of it, and ordered him some ear defenders.

He seems much calmer now and he has more control having the ear defenders and I have noticed he sits with the family a bit more- even when Popples is around (she is very squeaky).  Anyway I’m writing this because I was talking to my husband about him the other day and I said that Max is one of the bravest people I know.  He has no language and very limited ways of communicating but he will get up each morning and try to make the best of the day, even though the world is busy, which scares him; it’s noisy, which scares him and I can’t even imagine what it’s like to be in a world that makes no sense with no way of making yourself understood – I’m supposedly neuro typical and I find it difficult to navigate the world so how hard is it for him?  He never refuses to try something (except food) and even though it’s hard for him to be around youngsters I remember all the times when Oliver or Popples have been babies or asleep on the sofa poorly and he has sat with them and protected them when I left the room.  I would love to be in his for a few hours so I could know how best to help him, so I could see the boy I used to know, who was a joker and a daredevil and had a wicked sense of humour- mainly slapstick but still.

He gave me away at my wedding.  I know mum expected me to ask my dad but who else except my gorgeous 22 year old son could have done it?  It wasn’t a traditional walk down the aisle- we lurched and stopped for a flap half way down but who cares?  He looked so smart in his 3 piece suit, all eyes on him but I had hold of him and he did so well.  He smiled for some pictures, scowled in others, and I asked the photographer for every picture, I didn’t want them choosing what represented my family.  People said to me that day “You must be so proud of him”  and I replied “I’m always proud of him” because it’s true.  Having a child with autism is hard going, but along with all the cack stuff I have been taught patience, acceptance, unconditional love and that sometimes you may have to dig a lot deeper to find a person but when you take the time and effort to do the digging you find such a beautiful soul that it makes it all so worthwhile.

xx

Stay at home mum

That is my title  I am a stay at home mum.  People try to dress it up like “homemaker” or whatever but I’m a mum.  My husband works full time and we make do with his wage and the pittance I bring in for being a carer.  We’ve looked at the numbers and to be able to pay for childcare and care for Max while I worked – well I couldn’t get a job that pays enough.  It costs us over £80 a week for 15 hours of nursery care for Popples, mainly to socialise her.  Having 2 non verbal brothers we thought it was important to have time to play with her peers and not just be reliant on mummy for company.  She still lacks confidence a little but she has fun with her friends and is ready for Nursery School (FS1) in September.  She is going full time, and a couple of children from her nursery are going too so she’ll have familiar faces.

Anyway, I am getting off topic.  Being a stay at home mum is often thought of as being a soft option, I don’t have the pressures of commutes, deadlines etc etc but on the other side of that I don’t get holidays, time off sick or paid!  My day starts when one of the adorable children I have wakes.  Currently that is Oliver……at 3.30 am……. every morning!  The research suggests that 80% of children with autism have “sleeping difficulties” and how I hoped we were in the 20% this time that didn’t. We aren’t.  So he gets up and has to be wrestled back to bed, often holding me in a death grip in case I think about leaving to get some sleep in my own bed.  Then Popples wakes around half six and immediately starts jabbering on about what we’re going to do today or to ask if I “had a good sleep mummy?” or to talk about yesterday or last week or……you get the picture. Breakfast then getting the little ones dressed.  Oliver is allergic to clothes at the moment which is fun on a school morning where you have to try to get him dressed whilst he is trying to get undressed at the same time and get him into the car (whilst he is writhing in my arms ) and remember book bags etc.  After various drop offs I get a chance for a quick coffee and tidy up before pick up from nursery.  Then its a couple of hours working with Popples until Olivers pick up and Max gets dropped off.  Then, on a good day I get to make 2 lots of dinner, Max is extremely fussy, Oliver is mainly into Italian and Popples will eat almost anything so she’ll either eat what one of the boys is having or what me and daddy are having.  In between all this there’s washing up, washing, drying, folding, appointments, making/changing beds, decorating our ramshackle house, walking the dog, speech therapy programmes, education programmes to follow and general playing with the kids.  After dinner it’s supposed to be free play where I get ten minutes to look at the accounts or sort out the schedule for the next week but I inevitably get dragged into dolls house (everyone just poos and sleeps) or doctors (I’m the patient who is too hot and needs a blue plaster?!) or saving the olive tree which Oliver has never seemed to like and attacks at every opportunity.  If daddy is home on time he helps with the baths- his commute is awful so often I take this on and he joins us if he’s home on time.  Apparently the best game to play in the bath is shouting “Hoppity Voosh” as loud as you can whilst throwing water everywhere.  If all jug type implements are removed then hands work just as well splashing fiercely. Bed time reading then the “I need a wee” “can we do this tomorrow”  “I can’t find my cat/duck/witch” and Popples is asleep.  Oliver as has been stated is not sleeping so he stays up a bit longer while one of us does dinner and the other tidies up- do you know how far stickle bricks can get?

Max is in bed by 10, lights off at 11.  Oliver is having a hard time so it can be anything up til midnight before he sleeps, and cannot be left unattended at the moment due to his exuberant death defying activities.  So I don’t get much time with my husband at the moment, or time to do much at all.  Don’t get me wrong Leon takes on a lot after a full day at work helping out where he can but I don’t like him doing the nightshift then having to work all day and travel in commuter traffic on the motorway so I try to do as much as I can because my job is to look after them while he earns money to look after us so I can look after them.  At the moment it feels like we never see each other, we are both working flat out trying to do the best we can for our family and we are losing ourselves and each other.  It’s a few weeks away yet but I’ve arranged my mum and eldest to look after the other 3 while I take him away for our first wedding anniversary.  Just to have 2 nights together, a meal we can talk to each other through and just have some peace and together time.  I know it’s not a long term solution but it’s something.

I’m not moaning really, I know I am lucky to get to raise my kids and be there for them all the time.  I’m just saying it’s not easy.  I got to sleep in til half past nine this morning!  That’s how I know Leon still loves me “you look like crap, I’ll get up with them tomorrow” were his actual words but I know he loves me really. I think what prompted me to write this was a few things people have said to me.  They seem to think I sit at home watching day time tv and eating bon bons.  “some of us work and have children too” yes and I admire that but some of us also get time off or get to watch a film once the kids are asleep or get to share a meal with their family.  And no, my kids are not spoilt brats.  You can’t discipline the autism out of a person.  I discipline my kids of course I do, they have boundaries but there are somethings you just have to roll with because nothing you can do, at this moment in time, will change anything.  Things will change, but at this moment this is our family. And we’ll cope because we have to.  Everyone’s family works differently, some a little more differently than others.

Getting a bit rambly now due to lack of sleep, and I know theres a chocolate cake with my name on it downstairs- it’s a “hooray we survived the first week of the holidays” cake.

xx

Autism, and other stories

I’ve never done anything like blogging before.  I am not very tech savvy but writing a book seems like a lot of hard work for someone who’s brain is often on many different tracks so this seemed like an easier option.

I have 4 children, 2 daughters and 2 sons.  The lads are on the Autistic spectrum.  My 23 year old is non verbal and at the severe end and my 4 year old is classed as moderate, for now.

One thing I remember from counselling is that she said talking about things often helps put things in perspective and as I can’t afford £50 a throw for counselling this is it!

So this will be my take on our family life, family life with ASD – the good, the bad and the ugly!IMG_1200