Playing together

Oliver and Popples are 2 years apart, he’s in year 1 now and she’s in nursery.  I always worry that as she grows she will leave him behind and they will both have an element of loss and loneliness.  Yet as I watch them interact and I look back on videos (I’m old school I always call everything recorded “videos”) I worry less.  They have a bond.  They may not always understand what each other is trying to do but they try to get it.

Oliver got hold of my tablet and was watching the videos of him and her playing.  One game he invented was to shout “aaaahhh” at her and she did it back and they got louder and more giggly.  One of them was of Popples putting a happy meal box on his head and saying “burger head” amidst giggles whilst he chased her about with the box still on his head.  She watches him play and I can see in her eyes she doesn’t quite get his obsession with building towers, but then I see her face change, when she wants to play with him, and as young as she is I can see her figuring out how to insert herself into his world and be accepted.  Usually passing a brick, or counting or naming the colour and she’s in.  They have eye contact and a common goal and he jabbers, she talks back- leaves a space for him to answer- then answers for him if there’s no verbal response with a “yeah?” at the end.

He sometimes wants to play with her, he hangs back a bit more, obviously unsure of her more complex games but she notices and invites him in.  They like doing “shops and cooking” as he can name foods and can play tea parties, drinking pretend drinks and nomming pretend food.  He likes to chase, monsters is a popular game in our house accompanied with lots of screaming and bumping into each other.

In the bath last night they were blowing bubbles in the water, he took his turn then looked at her expectantly- being tired she missed the cue, but when prompted, joined in.  Then a bout of screaming at each other and splashing water all over the floor and it was hair washing time.   Laughing he used an octopus toy to rinse her hair, she laughed and then used a fish toy on his hair.  If I had done that there would have been tears, but it was their game and they played for an age- until there was hardly any water left in the bath!

He has confidence in a lot of situations that she lacks and she looks up to him to see if it’s safe.  She is wary of parties and changes at school, but he had his party Wednesday at school so when it came to hers on Thursday she was ok about it cos “my bruvver had one asterday”.  She helps him with his speech and making sure I know what he wants, she accepts him and loves him and looks up to him.  He’s her hero.  He helps her with her confidence and being brave and climbing.  She wrecked his game the other day and where 6 months ago he would have smacked her he shouted “Peppy.  Go away!”.  The fallout was short lived,  It’s much more fun being pals.

I wonder how much is instinct.  When something scary happened when they were playing upstairs he got her into the bathroom and shut the door- obviously the safest place upstairs.  Is that just what older siblings are “programmed” to do?  (obviously they weren’t alone long, certain footfalls a parent hears and knows that it’s not good).  Although they have rivalry over toys, time on knees etc I think their relationship is really good.  I love watching them play, especially when they don’t know I’m watching.  I think I need to worry less- that bond will only grow stronger, so I will just enjoy watching them and their relationship that is pretty much 50/50.

 

xx

Bonfire night

We didn’t have a bonfire- it’s too risky with the little ones and the rain has been so fierce all our wood was wet anyway.  We got a small box of fireworks and some sparklers and some traditional fayre.  Mum brought black peas (eugh!) and parkin, Leon made jacket potatoes and sausages and we sat as a family and ate before the excitement began.  Max loves fireworks now, as long as they aren’t too bangy.  Popples does not like fireworks “they make noise that hurts my ears and tummy” so she had asked me if we could watch from the conservatory.  Oliver had screamed last year and shut himself in the living room until it was all over.  So we were expecting to be doing them primarily for Max.

However, when Leon brought out the boxes, Oliver went and grabbed his coat, hat and shoes.  Max was already ready, and Popples put her coat on and agreed to come outside with me.  That didn’t last long.  As soon as the first fountain had finished, we were in the conservatory.  We could see them and talked about how sparkly they were and she seemed ok with this arrangement.  Under big sisters supervision, Oliver got a sparkler and waved it around with a big smile on his face.  He “ooh”-ed at the roman candles and fountains, jumped and laughed at the rockets and signed for another sparkler, which he got.  The boys thoroughly enjoyed it.  It was a huge surprise after Oliver’s behaviour last year and his dad was made up.  Leon has had a few hard weeks, seems like the anger has given way to sadness, but seeing the boys laughing and taking part really perked him up. He said I’d missed out being inside but I didn’t miss out at all.  I got to see my son’s loving the experience, and I got to see the rest of the family enjoying my sons enjoyment.  We get to see so many struggles so for everyone to see this joy was amazing.  Who knew a few fireworks would bring so much positivity to the family.  Although it may have been that, for the first time ever, our Catherine wheel actually worked!

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xx

 

 

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