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

 

Dealing with “nice”

Now this is a real problem for me.  I never know what to do.  You see after 20 years of dealing with autism it’s not often that I’ve had this experience.  I don’t know when it became acceptable to comment on a person to their face knowing nothing about them.  I have to say I am not too nice when dealing with these people, a part of me knows I should try to educate but when you see me with Max especially, any one can see he is different, so the comments don’t seem like questions just an excuse for someone to try to get one up on us.  “that child needs a good hiding!” and my response “oh have you called the Lancet- I’m sure they’d be thrilled to hear your cure for autism”, “there was no such thing as autism in my day”-“was there always ignorance?”.  I’m not especially proud of my replies but I’m sure I’m not the only autism parent who has to deal with this inane nonsense.  I was shopping with Oliver the other day and we were discussing sausages- I say discussing it was me asking if he wanted blue sausages (chipolata’s) or purple sausages (Cumberland).  It was also 6 am and we’d been up since 3am so I wasn’t in the best of moods anyway but some woman overhearing us says to me “why you giving him a choice? he should eat what he’s given” I just replied we didn’t live in a dictatorship and left it at that. But what makes anyone think that comments are appreciated?  When I was little I was taught “if you have nothing nice to say, say nothing at all.”

This has gone on for years, staring I can cope with, it’s not often you see a 40 odd year old woman dragging a 5 year old round a supermarket by his walking reins while he is on his tummy on the floor making swimming motions with his limbs and I’d probably look at that too.  So I can manage staring and I can manage comments (although admittedly not always nicely).  When people are nice it really throws me off.

It was Oliver’s sports day early July, on the big playground with parents invited so the main gate would be open and with him being a flight risk I was panicking in case he got away from his 1-to-1 so I positioned myself ready for the intercept if he went for it.  He cam out with his classmates, sat with Mrs D- his 1-to-1, and waited.  He was winning the obstacle race- until he stopped to wait for everyone to catch up, he cheated at the egg and spoon but won, then came the space hopper race.  He was more enthusiastic than skilled and was well behind, so I was cheering him on and I stopped to draw breath and I heard a group of other mums shouting his name and encouraging him  He eventually finished to great cheers from parents and school friends alike and the look on his face was pure happiness. I wiped away a tear (hayfever-honest) and when it was all over I went to collect him.  So many parents came up and said how well he’d done, how they/d seen his progress over the year and often a story of their child and mine doing something together.  Yes I was in tears on the way home.  These people don’t know how their simple “didn’t he do well” comments affected me, and made me feel supported.

I was in the quick check out queue once in the supermarket when Max was little and the woman in front kept looking at me then him- I got ready to defend us when she spoke I was deflated “would you like to go before me? My grandson gets bored waiting in queues and my daughter has the same look you have.  I don’t want to pry but is it autism?” We didn’t go in front but we had a chat while we helped each other pack up.

When Oliver was a baby I took him and Max to Morrison’s for a few bits.  We’d been doing well on our walks and shopping trips when suddenly Max went into Meltdown mode.  A staff member from the bakery came over and I thought “uh oh we’re going to be asked to leave” but she crouched in front on the pram and kept Oliver entertained while I dealt with Max.  I couldn’t thank her enough.

So I’m not good in dealing with nice, it turns me to jelly and often makes me cry.  I have also developed a face that I call my ray liotta “goodfellas” face

ray

“He’ll eat it if he’s hungry enough”

“just put him to bed he’ll get the message”

“take some time for yourself”

“He’s just spoilt”

I’m sure you get the picture.  I sent it to my daughter when she text me saying “did you get any sleep last night?” the reply I got “lol. ok do you need some help?”  I think the picture just sums up my reaction to insane statements and questions.  I also think it might be more polite than making pithy comebacks.

I just wish people would think- how would I feel if a stranger commented on my life? before opening their mouths.

 

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 we held each other and d

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

Altercation at the park

My son, Max, has  a placement at a park.  It’s like work experience, self help skills, gardening working in the café and other such things you’d find in a park.  I drop him off every day he’s “working” and this week with it being half term I have to take Oliver too. This morning was like most others with the exception of dropping Molly off at the vets for her operation.  The turning into the park is one car width, you turn from a busy road into this narrow gap so everyone slows down because you can’t see what’s coming out and it’s a bit shady due to the trees so can be a bit dim.  Added to that it’s a park, so there’s kids, dogs, college students glued to phones and not checking the road and other people like my son’s with no sense of danger.  Everyone who drives into there is very careful.

Today I turned in slowly as usual and there was a cyclist on the main path heading to the entrance/exit.  I stopped and he eventually saw me and ended up wobbling into the gate.  I couldn’t have gone further down the path as he was there and I couldn’t move from the entry until he’d moved.  I think he didn’t see me until he was right in front of me and he seemed to expect me to move- to where- I have no idea as I couldn’t reverse back onto the main road.  I carried on up to the drop off point where Max meets his 1 to 1 and I’d just got him out and was about to get Oliver out when this bloke comes riding up screaming at me.  I got a tirade of abuse about going to fast, it could have been a child, I’m irresponsible, I didn’t give a shit about my passengers.  I politely informed him that I had seen him and stopped then carried on when he’d moved so he could exit the park.  Apparently I’d driven so fast I had “knocked him into the gate” I said “I’m sorry if you think I was going to fast but I saw you and stopped and waited then carried on…” He carried on screaming at me saying “next time I’d get more than just a talking too” which was nice.

I drive in that park 4 days a week.  I know there are dogs off leads chasing balls, I know there’s people power walking, I know there’s kids and joggers and just people chilling.  I know not to go fast.  I know to have eyes everywhere when driving somewhere like that.  Even if there is a meltdown going on in the car, it has to be ignored until I’m safely pulled over- wherever we are.  I went to the drop off and reported the incident to the boss, told him there would probably be a complaint made against me.  These people have seen me drive into the place.  They’ve seen me park a good few minutes walk away from drop off as it’s safer if it’s busy there.  There are dog owners who are throwing balls for their dogs and I watch and have waited for the dog to take the ball back so it’s in no danger of running out in front of me.  If people I power walking I don’t drive behind them slowly making them move, I sit and wait as it’s their park too and it’s a couple minutes wait.  I was a pedestrian for a very long time, my husband was a cyclist and told me all kinds of stories about impatient car drivers so I try to be a good and courteous driver.

The man today upset me because what he was screaming at me was false, it genuinely was his problem.  He was screaming and swearing in front of my children and he physically threatened me.  If he did have a problem why not just do it politely “excuse me but I think you went a bit fast and it startled me”? Why does everything have to be all shouty all the time and accusatory?  I suspect he may be there again tomorrow now to make another point.  I’ll have Popples with me to tomorrow so it’ll be extra fun.  Like I said I am a courteous driver, a few minutes added onto my journey is nothing and I’m not going to drive like a lunatic when I have my children with me anyhow.  The incident rattled me and I wonder if he’d have been so threatening if I’d been a man.

Vimto Bath

For her 3rd birthday, Popples got a baby bath and a doll that does a wee.   It was a present from her nana and granddad and was a big hit because it has a shower attachment that really works with a pump action tap.  The little ones both love it.  Yesterday Oliver decided there was not enough water in it so carried it to the kitchen sink in order to fill it up.  I let him put a bit more water in it, then told him it was enough and left him using the shower to squirt his face and his hair.  Leon and I were just in the next room gluing some skirting boards on- we don’t trust him enough to go very far when he is messing.  Heard the tap go on, so Leon went back and turned the taps off- he has a stronger grip than me so neither me nor Oliver had any chance of turning them back on.  That was him safe so we went back to the diy.

If I can make a suggestion to anyone planning on doing a quick job sticking bits of wood to walls don’t bother and go straight to screws.  It doesn’t dry quickly it is absolute bobbins.  We gave up and went to get more tools.  Leon checked on Oliver, and shouted me.  Our son had decided to get around the problem of not being allowed any more fluid for the bath by unscrewing a 2 litre bottle of Vimto cordial and pouring it into the baby bath.  He now had a delicious drinking fountain.  Leon saw the problem solving immediately, he’d been denied what he wanted so what could he use to achieve his aim, found it and used it and was happy with his accomplishment.  Popples was not so happy with a sticky dolls bath and I’m not quite as pleased as Leon about the situation.

Then the cheeky bugger asked for a drink and when I served him apple and blackcurrant as that was all that was left, acted like I was trying to make him drink poison.  Fortunately Vimto was still on for 2 pounds for a big bottle so daddy came in and saved the day!

Oliver v’s the range rover

This morning started like most other- getting three children ready for the day, drop Popples at nursery, wrestle Oliver in the car and drop Max off at placement.  All done on time- even arrived early for school and was looking forward to Foundation Stage’s production of Jack and the Beanstalk.  We’ve had to grow beans at home and keep a bean diary, and there’s been lots of work done in school with the story being at the focus.  Oliver was part of the beanstalk and had to wave a leaf at the appropriate time.  It was going to be interesting at any rate.

So we pulled up at school and was just finishing listening to Room on the Broom before getting out.  Now I know my son is a runner and a flight risk, we had a near miss just outside the house a couple of months ago where I let go of him to put the key in the door and he ran down the neighbours path into the road.  I shouted and ran after him and got to him a second before the car did.  A couple of weeks ago he got past the teacher on the door in the morning and ran off to the Bug Hotel/outside readers corner.  Fortunately he went down that path and not the one next to it as it would have been onto the road.  Therefore I am super vigilant and hold onto him all the time when he is mobile.  Today I had him by the wrist as it was hot and he is sweaty and I didn’t want to lose my grip on him. Five steps from the gate he managed somehow to get loose and was on the road in front of a range rover who fortunately wasn’t driving too fast and I had reached him and snatched him out of the way.  He is so fast and seems hellbent on escaping and running into dangerous situations that he has no comprehension of.

Teddy’s gran saw the whole thing, she said he was fast and I did nothing wrong but its hard to feel that way when I know him and he’s in my charge.  School made me a cup of tea and had a chat about his Houdini type antics.  I watched some of the play and he was happy as anything waving his leaf.  I think Teddy’s gran got upset too, she used to work with kids like Oliver and it’s never nice to see a near accident. I use reins everywhere else but never needed them to get from the car to school.  Well that’s what you think until this happens and you think “I knew what he was like why did I not do it as a precautionary measure?” When I went to collect him after another day of “what if’s” and sweet tea I took his reins and put them on.  Whilst walking with him out of the gates he managed to get the shoulder straps off.  So I did my research and have ordered him some super strength reins designed for children like Oliver.  They weren’t cheap- nothing is when you put special needs in front of it, but they may save our lives. Teddy’s mum said this afternoon “I bet you can never relax, always waiting to run ” and I am.  I have seen Oliver watching where I put my keys, watching which key I put in the door and I know he is waiting for his chance.

I’ve tried talking about cars and squashing.  Used simple language, told him NO.  Nothing works, he doesn’t understand danger, he has no clue as to the seriousness of consequences, he thinks mum shouting “no” and him having a time out is worth it to “catch” a car.  I need to be more vigilant, and I need to stop being lulled into a false sense of security.  Lets hope these reins help- at that price they had better be good!

Julia Donaldson and Axel Scheffler

These guys have my eternal gratitude.  I am a big reader as is my husband and my girls.  They always loved snuggling and reading and discussing pictures.  When I was teaching Max to read I bought the Biff and Chip books that Emily was reading in school.  It worked to a degree, he could read the words but it was mechanical.  We discovered The Gruffalo by accident- I was just looking for something different, bright and options for voices and discussions.  Now he has what used to be termed “classic autism” so to get him reading was an achievement for him but he did do the voice for the owl.  Very proud day when he did the Twit-two.

Oliver, however was totally disengaged.  No interest in any books.  I still did reading at bed time.  I tried the lift the flap Spot books, Peppa books, Little library book sets but he wouldn’t sit with me.  Then my aunt bought him the Gruffalo sound book and things changed.  Being a button presser meant he couldn’t resist the book.  He got fixated on certain noises which was fine, he pressed and I copied the noise gaining smiles and eye contact.  Then we got to the stage where I could read a couple of pages with him pressing the buttons.  It made me so happy that I could sit with him and actually engage in a mutual joyous activity.

We found a dvd set of the Gruffalo, Gruffalo’s child and Room on the broom.  So we bought it and let him watch it.  He was engrossed from start to finish and that night we got through the whole book.  I had to do voices, and roars but does it matter if you sound like an idiot?  No.  It really doesn’t.

On Popple’s birthday she got the witch from Room on the Broom as a gift which Oliver immediately took too (we ordered another one on next day delivery) and the shops had 2 for £6 on a lot of books which meant they could have their own copies of the books instead of me having to sneak them out of Max’s room and sneak them back before he took his nightly inventory.  Room on the Broom was a massive hit!  The squealing when the dragon was coming was music to my ears-anticipation and appropriate reaction.  I started leaving gaps when I was reading familiar stories and he sometimes filled in the missing word or I’d say the wrong word and his outrage would make him correct me vehemently.

Stick man was on over Christmas and we taped it and showed him and it seems that once he’s seen it he is much more amenable to reading the book.  Although he does “read” a lot more books now even if he hasn’t seen them but watching them seems to improve his joining in and language.  We also got given some audio cd’s (they need replacing now they are worn out and skip) that we listen to in the car, after the story there is a song that we all join in with.  The Book People do a lot of discounted books and we got ten paperback Julia Donaldson books for a tenner which we gave him for Christmas, came in a very handy carry bag too.  He opened them first and sat with his room on the broom book and his witch reading it a nd “ziggity zoom”-ing.  He now has all the charcters from Broom which we re-enact the story with.  He has a Gruffalo and the mouse but the mouse often ignores the Gruffalo and wants to eat “Oliver crumble” giggles and tickles aplenty.

Popples bought him a stickman for his birthday.  He lives in his bed and is not to be touched by us mere mortals.  The Gruffalo’s child is an opportunity for squeals and lots of AHA! OHO! He likes pointing to things in Snail and the Whale, Squash and a Squeeze gives us animal noise chances.

So my son who would not read or look at books now insists on his bedtime story and snuggles and points and says some words.  Occasionally the witch gets “whooshed” across the room but it’s all joining in.  His witch is his best friend, but she deserves a page of her own.

So I will be forever grateful to the two named above for their books.  The repetitive language is not boring (as is it in a lot of books), they are bright, they engage all my children and it’s given me an opportunity to do something with my ASD sons that makes me feel close to them which is often difficult with a child with autism.  Thank you Julia and Axel, I hope they know how much they change lives, it may only be a small thing to some people but having a child snuggle on my knee and share a book is a huge thing for me.