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

 

Genetics Counselling- Stage 1

After we saw the psychiatrist with Max a few months ago and he took a detailed history, he asked if we would like to be referred to genetics.  With every professional we’ve seen over the last year making some comment about my X chromosome we decided to be referred.  We had the appointment a couple of weeks ago with a lovely woman who drew a family tree, took a very detailed history and then explained the options available to us.  I told her about the boys births and how they weren’t textbook which appeared to make no difference really to what she was saying, although her specialty is genetics so why would it?  It seems that it IS my chromosome that has affected the kids, and may have caused miscarriage etc etc but it’s not conclusive………yet!

As a parent I feel guilty anyway, I think it’s part of being  parent anyway but now I feel really crap.  I know logically there’s nothing I could have done differently, no one had mentioned the X factor and I was told there was little risk as I was with a new partner.  But I still feel it’s my fault.  So I had a bit of a wallow for a bit, but then that doesn’t help anyone so what will help?  Well they took a blood sample off Max to run DNA and to check for 66 X chromosome abnormalities- technology has advanced, although they have discounted fragile X.  He was really good giving blood but then I was waving a Mars bar at him for when he was finished.  The geneticist also asked if we wanted to take part in the 100,000 genome study which maps as much as they can at the moment and then more as technology gets better.  It shows like cancer markers and stuff, so we will have to have a session of counselling before signing for that.  They will also compare it to Max’s for now to see if there are any blatant defects.  I’m not explaining it very well am I but there was a lot of information and I’m not remotely scientific.

I know there’s no cure or nothing I can do for my family in the immediate future and the tests may come back with a definitive “yeah, you broke your kids!” which I will have to deal with but it may help other families.  It may help my daughters make informed decisions when it comes to them having children.  So after thinking about it, we’ve decided that if they want us on the study they can have us.  I don’t really like the idea of people having my DNA, I obviously read too many books where people have been set up by the cops, but I feel I should do it.  I am not one for eradication and making perfect humans (eugenics?) but I am for education and informed decisions.  Maybe we can narrow down some diseases and syndromes and find better ways to educate and understand those affected.  I don’t think we should try to eradicate people who are different- where would the world be without those who think differently?  It would be nice though to make life easier for those who are different.

As I get older I realise I don’t know anything.  I have my core values and morals but I find I fluctuate about other stuff so much.  There’s no black or white in so much of life, it’s all shades of grey.  I find that my feelings come second to what I believe is best for my family.  I think, honestly, that if it was up to me I wouldn’t go down the family genetic route but I have to think about everyone.  I love my boys, but it’s hard and personally I wouldn’t not have them in my life (oh that’s bad writing).  If I’d known, I would have had them anyway, because there is so much good too, so much love and you get to share a different world, but it is bloody hard work- not least educating people who have no clue how to treat someone different.  If my daughters don’t want to take the chance of living this life again with their own kids then that is up to them and I fully support them.  Maybe we will get some answers, maybe we won’t but I will always try to make my children’s lives better- all four of them.  Information is never a bad thing, is it?

 

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

Poison- or as I call it, liquid paracetamol

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Max is at respite this weekend- he’s gone to the caravan with his lovely other family. As a treat I thought I would book tickets for the zoo for Saturday for the little ones as an end of summer treat.  I should know better than to book anything.  It’s Popples last week at nursery before she starts nursery school in 2 weeks, Oliver is back on Monday- big year 1!  So on Tuesday I get a phone call from nursery saying Popples isn’t well, running a fever and crying.  She’s not a crier.  And she was ok when I dropped her off.  So I went to pick her up and sure enough she is hot as hell.  Great, last week in nursery and she’s going to miss it.  She has recovered well, don’t know what it was, Calpol a cool and soothe on her head, wrapped up on the sofa, lots of sleep and she’s back to her normal self so she can go in and say goodbye (with cake) on Friday.  Huzzah!  I hear you cry.  But wait, not to be outdone by his sister, Olly comes down with the same thing the next day.  Higher temp, floppy, and not wanting anything- I made the mistake of offering him a drink, and got a tearful wobbler for my trouble.

He let me, after a few minutes of persuasion and showing how I do Popples ears, finally take his temperature  and at just over 39 degrees I knew it was time to poison him.  Well if you saw his reaction, the screaming, thrashing, scratching in self defense you would be forgiven for thinking I was trying to kill him, but it is actually strawberry flavoured liquid paracetamol especially designed for children.  Brings down temperatures, and soothes aches and pains.  It comes with an oral syringe for ease.  Yep so easy.  No mess, just squirt (or dribble) into the mouth and most kids swallow it no problem.  Oliver on the other hand, does not care for the syringe, or teaspoon or juice with it hidden in.  Once you have him in position, legs and arms restricted you can actually get the syringe into his mouth.  Now over the years he has developed various techniques for getting it back out and I thought I had got all angles covered.  Yesterday I checked his mouth and could see nothing so thought it had been swallowed.  Silly me.  Of course he hadn’t, he’d somehow stored it in his throat and when I released him it got sprayed (literally) everywhere.  I’d seen him swallow so don’t know how he’d done it.  It is also the stickiest substance known to man, which is really great when me, him the sofa has been sprayed with the stuff.  Anyway after much sweating, and soothing words and restricted limbs, I managed to get some into him, and his temp did come down.  I also had to ask his dad to pick up another bottle on his way home from work- we buy generic now at half the price.

So he has his favourite dvd’s in a pile and  is sat under the “poorly blanket”.  It’s almost time for the next dose, and I hate it.  I hate that I can’t explain it will make him feel better, I hate that he won’t look at me afterwards, I hate that he runs away shouting “no mummy”.  I hope that he will one day understand, Max took years to understand “much better” but now he does I can dress wounds, give him meds and apply creams to his eczema.  I’m hoping he is well enough for the zoo and well enough for his new term.  His immune system is not as robust as his sisters and the lack of sleep doesn’t help either.  I don’t know if offering a smoothie after his poison is just asking for trouble.  Ah well I like to live dangerously!!  Medicine time- I just hope the neighbours don’t call social services 😉

 

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

Summer Holidays- week 5 of 6

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Yes we have made it week 5 relatively unscathed.  Uniforms all bought and nearly all labelled just need a pump bag for Popples and I’m done.

To be honest I was dreading the big summer break, 3 kids at home apart from her three sessions at nursery and at first it did not look like it would go well.  The boys are usually out at school or placement so Miss P usually has me to herself during the day.  “You’re my mummy!” has been heard regularly for the first two weeks and I’ve had to explain that I’m everyone’s mummy even Emily’s even though she doesn’t live with us anymore.  For a just turned 3 year old this concept has been hard to grasp but we have persevered and there’s no more griping, as everyone gets mummy time and everyone gets daddy time as well as all time together.  The sharing of toys has also been tricky with many arguments turning into fisticuffs.  For a tiny person, Popples can certainly hold her own.  “That’s not nice.  Let’s share. No fighting. There’s enough for everyone”- honestly got sick of the sound of my own voice!  When it comes to sharing food, no one has a problem everything is distributed fairly with no complaining or hogging.

I also decided this summer to give everyone a break from hard learning.  The speech therapist, Vicki, has discussed with me how Oliver takes time to process things and should be given time when the pressure is off to just kind of make sense of things. So we went back to mainly play based learning, taking turns, colours, numbers letters- etc. Still learning but not at a desk with a pencil and work sheets.  I can not believe the progress they have made.  My non verbal Oliver has not shut up!  We bought Sing! for them and Secret life of pets a while ago and these have been great for both of them.  Oliver made a stage and microphone out of stickle bricks and was singing proper words to proper songs  When he wants to watch it he comes up to me and says “shake it off  shake it off” which is what the pigs sing “piggy power”.  His negatives have improved but Vicki said that’s usual as he is more motivated to declare his objection to something “no more bed time” “no more car” “leave me alone”  but he has also started verbally requesting things “more juice. Want crisps. breakfast now” and telling me just things “bumped head. it’s raining”.  Now for a child who had 20 words at best before the summer, well I’m impressed.  But what made me really proud was yesterday and him voluntarily sharing.  They have a set of secret life of pets figures each, just little ones that were about 2 quid a set from ebay and they love them.  Usually they still fight over them but Oliver split them into two piles and then came over to Popples and said “Peppy’s” (he has always called her Peppy) and then when he found another 2 Gidgets in his set he brought her one.  Obviously I then text and told everyone I knew what he’d done- I was so proud!

I think the turning point in their relationship was when it was raining hard the other week. The weather is not great in the summer holidays- it’s like the universe wants to see who’ll go crazy first.  They’d had enough of staying in so I ran them a bath and opened the back door. There was a huge muddy puddle in the border I hadn’t finished planting in and they both dived in running up and down, screaming and laughing, in the pouring rain, getting wet through and muddy head to toe. I’d done the bath so when they came in they were warmed straight away and into warm clothes- last thing we need is poorly!  Now Oliver joins in when we play chasing, obstacle course, racing, and everything.  He was the monster yesterday so put his Gruffalo gloves on (they are like claws) and chased “Peppy” round the garden shouting “Raaaaaahhh!” and attempting to tickle when he caught her.

We have a week and a bit to go before Oliver goes back to school and I’m worried he may lose his speech?  It’s busy at school and he doesn’t have much confidence in his voice yet- he’s only just found it.  But I’m going to put that aside and enjoy what I have right now.  I’ve heard her helping him with his words and I’ve seen him helping her with her confidence in climbing.  Maybe it’s the start of a beautiful relationship, best friends.

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xx