Family at breaking point.

Oliver is 6. He was diagnosed with autism 4 years ago. I struggled at first to accept it- how and why did it happen again, but that couldn’t last because he needed me ready to help him and fight for him and just love him. And I do. Max was diagnosed 20 years ago so maybe it helped that I knew what I was doing this time around. My family is now in the verge of breaking up because after four years, Oliver’s dad will not accept the autism or change his approach.

He’s not a bad man. Olly was his first child and he had such expectations that he thinks now will not come to pass. He doesn’t understand how Oliver sees the world, how he learns, when he’s just being a swine, the difference between meltdown and tantrum etc. Things I’ve had to learn so that I can help him achieve everything he wants to. I’ve modelled the discipline model, I’ve shown the speech therapy techniques, I’ve shown him how to play with children, I’ve talked to him, I’ve offered him counselling and helpline numbers and I don’t know what else I can do. Treating him like his sister will not make him like his sister, but he doesn’t get this.

The last couple of months have been so bad, I feel like I’m alone raising this family. If something happens it’s me having to referee and sort out the fall out. There’s constant arguments with him saying “I’m entitled to be angry” and me saying “you have to see through his eyes. Anger is no good anymore, it’s driving us all away”. Shouting at kids doesn’t work in this house. Loud, sudden noises make a situation escalate so fast. I’ve been saying the same things for 4 years and he’s just not listening.

Oliver shut down last week. I’d never seen it and I do not want to see it again. The playmobil pool was filled with water and Olly went to tip it. Olly and water is always a risky combination. Dad shouted “No” so Olly went to do it again. “I Said NO!” And then the pool got tipped. “NO MEANS NO!” So Olly ran into the living room and I followed as if he gets told off he will throw something or tip something. He was shaking. I tried to talk to him but he lay on the sofa covered his ears and closed his eyes. He shut out everything. I stroked his back and murmured to him. He lay there for a good while and I just let him calm himself until he was ready to let me in. Eventually he sat up and dad came in to see him but he just clung to me. And that was the point I told him to get help or go.

It may seem harsh but it’s been four years. He’s missing out on important things while being angry. I understand the frustration of dealing with our boys at times, the behaviour and lack of sleep is not a good combination. I understand any kid winding up their parents at times, hell, no one is perfect. I’m nowhere near perfect but I try every day to do the best I can, to learn, adapt, make learning fun, picking which battles are worth the fight. He refuses to adapt. I asked him if he thinks acceptance means giving up and he said yes. I disagreed. I think acceptance means you can open up to more ideas, different worlds, different rules. We aren’t like other families so why should we try to fit in with their “normal”? Why can’t we make our own normal? Why can’t we embrace our differences? We can think outside the box of norms to make life fun. If we keep trying to force our kids into a blue print they can’t fit what kind of parent does that make us?

If anyone has any constructive ideas on how he can move on it would be helpful. Coming from me the words are falling on deaf ears. We can’t carry on living in this angry fug. It’s not good for anyone especially the kids. If you do care to leave a comment please know that bashing him won’t help the situation. I can’t help him. He just throws that I’ve had 20 years to deal with this and he’s only had four. When max was diagnosed I was a single parent with no family back up so I didn’t have the luxury of wallowing. The boys don’t need fixing, they’re not broken. I don’t know how to change this mindset. We have to get through Christmas and then I suppose we will sort out the future. Over the last four years we’ve had the chats, discussions and arguments but nothing really changes. I’ve asked him how I can help, what he needs, how I can make it better, tried to support and be understanding but with no movement I can’t continue to do this. I’m not helping at all and I’m so tired of going over and over the same ground. I’m done. 😞

Xx

Finding time for everyone.

Having 3 children at home with different abilities and needs and no sleep is difficult to juggle.  I’ve made some choices over the years that people haven’t agreed with but they don’t live my life.  When Max was little he stopped sleeping.  2 hours a night was his maximum.  We moved house so Emily would have her own room and not be disturbed by Max.  Once he was diagnosed, we got assigned a social worker (they don’t do that round here now) who talked about various respite possibilities if that was something we wanted to look at.  I thought about it a lot.  Emily had been put in second place while all the diagnostics were taking place and it didn’t seem fair to her.  She needed to know she was important too.  So we chose a “Home from Home” scheme where he would stay with another family and we got 28 days a year which we took as weekends.  Fortunately we got an amazing family. Mr and Mrs F had 6 children (one still at home), lots of grandchildren and had been doing this for 15 years.  Max did whatever they were doing whether it be a family party, trip to the beach or just lounging around the house.  One of their grandchildren was a similar age and they were close for a good few years until he outgrew Max but by then Mrs. F’s youngest had a daughter and Max transferred his friendship to her.

Making the decision was not easy.  I should be able to look after my own kids.  What would people think? Would social services look at me as an unfit parent? But if he had grandparents who could have had him the odd weekend we wouldn’t have had to go down this route.  So Emily got some designated time to do whatever she wanted.  We could go shopping, she could have a sleepover, we got some sleep, we could do stuff that we couldn’t do with Max.  I tried to always keep him involved and we went out a lot but he had a habit of being in clothes shops and stripping off which didn’t make shopping fun for her.  Max still goes to his respite, he got a personalised budget at 18 so he could employ his own people and he’s been going there almost 20 years so why change something that’s not broken?

Obviously Emily got to an age where she wanted to start hanging with her mates so I had some me time finally.  Weird feeling when you’ve never really had it, but I got back into reading and found friends on line and discovered the game Runescape so I filled my time.  We took her on one holiday without her brother too, just so we could reconnect and she could choose, you know not everyone wants to ride camels, Max!

Now I have 2 young kids and Max still at home and juggling time is so tricky.  They all have homework to be done, the boys have speech therapy, I have to cook and do housework and have very little sleep.  We went to Butlins, which turned out not to be a family holiday as such but we still got to spend time with each of the kids.  I was a single parent when Max and Em were growing up which made it tricky.  Max hasn’t had a holiday for a couple of years (I’ve written about his troubles before) but this year it felt like he was ready to maybe try something new again.  Instead of spending our anniversary weekend just me and the hubs, we decided to take Max for a weekend away.  Cadbury land and a theme park, 2 nights in a hotel, the hotel did food, and accommodated 3 adults in one room.  He did really well.  There was a couple of squeaky children at breakfast the first morning, so the next morning we were breakfasting as soon as it opened (very early) so he could relax a bit more.  He chose his own food from the menu, they catered to his separation of peas from his fish with no bother and he got free chocolate at Cadbury land.  It was a success.  But that was our anniversary weekend.

Hubs took off the week after Max’s holiday.  He did the school run for me while I dropped Max off and we spent the week together.  Some of it was shopping and Christmas shopping but we had time to sit together and talk and read and have hot drinks and I  got to garden and he got to do his records thing with no one going “mummy, I need a drink” “Carry me” or stopping squabbles.  It was only a few hours a day but it was nice having some us time. Time that we don’t get in an evening because of aforementioned children “NO BEDTIME!” “mummy I need some water” “poo poo mummy” “I’m not tired” etc etc. I counted how many times we have shared the same bed and in the last 2 years we have shared it 3 nights.  2 of those were on Max’s weekend away and once at home.  Well one and a half as Oliver woke up at 3 and had a meltdown because he was alone, we’d fallen asleep watching a film- won’t make that mistake again.

We try to take the kids so one of us can have some down time.  I ran a bath and sneaked upstairs and was just about to sink into the bubbles when Oliver was stripped and in the bath like lightening.  Hubs got a book out when I set up craft time but funnily enough as soon as they saw him sat there they wanted him and no one else would do.  So now we have kind of accepted that our time together will be him taking days off work so we have the days (all 5 hours) together.  Me time- well I think that’s for other people really.  Not that we will stop trying to give each other some breathing space and recharge time but the children are formidable opponents 🙂

I think that having 2 of us makes things easier in a way, no one is left like Emily was when she was younger, so we don’t have to look at respite for Olly.  His grandparents have no kids at home now like they did when Em was little so we can always book them in for a day to do something special for one of them, and Em helps out too.  Our needs have to be put on the back burner in some ways, but that’s the same for any parent isn’t it? It just means we have to find new and more interesting ways to keep our relationship going.  On the plus side, I don’t think we will ever get complacent with each other, we don’t get enough time together to take each other for granted.  It’s funny how what people see as odd becomes just part of life to you, something you don’t think about until you come to tell someone and see their face change.

I think as soon as you become a parent you get an extra guilt gene.  It doesn’t matter what you do you always have a twinge of guilt- are you doing the right thing? Are you being selfish? At the end of the day, it’s what works for the family.  I felt so guilty sending Max to respite but Emily needed a mum who wasn’t permanently exhausted, who did things with her and made memories and put her first.  I would have had guilt either way.  I swear it’s the extra guilt gene.  Obviously what worked for me and what works for us doesn’t work for everyone, but I carry enough and I am not going to let anyone else make me feel guilty.  I may not always get it right but I’m always trying to make it fair for all the children and I’m sure they will be the first to tell me when I get it so wrong, and then I’ll try again.  It won’t be like this forever, but while it is we just work around it and make the best home life we can…..for everyone.

 

xx

“I don’t want to be your wife anymore”

Those were the words I finally had to speak to my husband a few weeks ago.  They were not said in anger, they were not the result of a row.  Since being married I feel he has become more secure, which is great, but I have felt less secure.  We stopped talking, he’d play on his phone of an evening when we were supposed to be watching a film, he’d come in from work and be on his phone, and yet when it came to him wanting to do something, we were all supposed to just be in good moods and grateful he wanted to spend time with us.  As you can imagine, feeling like a piece of furniture is not conducive to a great relationship so we did have a row about his phone and lack of interest and he said he’d try harder, especially with the kids, and he has.

I still didn’t feel right.  Instead of looking forward to him coming home, I dreaded it.  I hoped he’d have to go away for work more than I usually did and I decided that I needed to figure out what was going on in my head.  I don’t like doing that.  I usually bob along, making sure everyone is happy and that’s enough, except it’s not is it? Not really.  I file things away in my brain and don’t deal with them.  I’m not good about talking about my feelings either, it’s hard enough figuring out what I’m feeling, never mind explain it to someone else.  I was really unhappy.   He knew I was unhappy.  I kept talking about how I didn’t understand the world, how I never have understood it.  I don’t “get” people and their games, and why they lie, and why they don’t just say what they mean and I feel like I don’t belong to anything and never have done.  Except for my kids.  I fit with them.  They don’t have expectations of me in the same way.  They expect me to be there and look after them, obviously, but they don’t expect sparkling conversation or little amusing bon mots, I’m just there to be mum which I have done for, like, ever- so it’s something I know I can do.  Kids are easily amused, you just act daft and tell poo jokes.

And that’s when I knew what the problem was.  It’s the expectations that fill me with anxiety and unhappiness and the fact that I know I can’t fulfil those expectations.  I am not like most people, I am a nervy, anxious person and according to my husband very black and white about certain things like lying.  I don’t understand lying.  It drives me insane.  Why bother telling lies- you will get found out then trust will be broken and I will think you were trying to make a fool of me.  Ok you don’t have to be blunt but there’s nothing wrong with being honest.  Anyway, I’m going off the point.  The point is I can’t be the wife he expects, society expects and that I think everyone expects.  I couldn’t be the daughter, the sister, the girlfriend that was expected and I’m tired of failing.  So I told him I didn’t want to be his wife.  I told him if he wanted to go and find someone more “normal” he was welcome to, and I wouldn’t hold it against him and we’d make it work with the kids.  As I said, I am not good at expressing myself and the conversation went on for quite a while, as he was checking if I wanted to leave (no), if I was looking for someone else (no), if I was having another breakdown (no).  I just wanted to have my friend back who used to laugh with me, support me, have fun with me, talk nonsense with me, and all the other things we used to do.  I told him being a mum of 4 with each child having such great needs, and the lack of sleep meant I couldn’t be “a wife” the way he wanted.

Then he asked what I needed from him.  I told him I needed no pressure and I needed to know what he wanted.  He wants to be with me.  He wants us to stay a family.  He wants me to deal with everything that’s happened over the last 40 years, however long that takes, and he wants me to be happy.   He told me he didn’t give a **** what society expected.  He told me he always knew I wasn’t like everyone else, then proceeded to list all the ways in which I was different.  The list was quite extensive!  But, he said, I made life more interesting and challenged his ideas on lots of things and came at things from a different perspective.   Him being distant didn’t help our relationship but me being unhappy and maybe pushing him away definitely didn’t help.  Catch 22 situation.  So we are together, in that we are sharing the house and the children, but also back as friends.  Since our chat I feel relieved that he is willing to stand by me while I sort through my head and that he doesn’t expect me to change with regards my “oddness”.  I have found someone I don’t have to pretend with, pretending is exhausting.  I might get a chance to be myself.

I know this may have been a really selfish action, it’s all about me kind of thing, but I didn’t want him to stay and get nothing from it.  He’s allowed a life too.  I’ve told him he doesn’t have to do everything with me.  I’m not keen on going out so if he wants a night out with mates he can do it guilt free.  It’s a work in progress though as I’m not the only one in this relationship with issues.  Just as he has helped and supported me, I will do the same for him, when he’s ready.  We are happier now.  I don’t know how long it will last, I suspect our relationship will always have problems but I think we both feel a bit more confident broaching things with each other now.  If I was going to be with anyone, it would be him, we just have to define what “wife” means to us.  For the first time in a long time I feel a little bit optimistic about the future.  Just a little bit.

 

xx

He’s not naughty! by Deborah Brownson

I’ve been trying to find some help on how to explain to a 3 year old the complex world of autism.  She has 2 brothers on the spectrum and asks questions which I do try to deal with “why does Max wear ear things?” because noises hurt his ears so this makes them softer so he can listen without it hurting.  The questions keep coming and the word Autistic has been mentioned which resulted in the conversation taking a weird turn “stick? like stick man?  Is he going to get stolen by a dog and get lost?  I don’t want my brother to go”.

Anyway I came across this book “He’s not naughty” when I was doing some research.  A lot of the books I came across had scathing reviews and many of them were about aspergers where my boys are further up (or down?) the spectrum.  This book also mentions aspergers but is not focussed on it exclusively.  It’s about the issues that people on the spectrum face, the senses are broken down, strangers, behaviour, bullying, feelings etc.  and the trauma it causes them.  It is also beautifully illustrated so although the text may be a bit too much for my 3 year old, the pictures are good for starting discussion.  It’s easy reading and explains things simply, so is useful for anyone starting out on an autism journey, be that a family member, friends or teachers.

It’s written by a mum who lives with autism daily, not by a clinician and it’s very matter of fact.  It doesn’t gloss over anything, it just explains things from Jake’s point of view as told by his friend.  I don’t think my review has done it justice, it’s a beautiful book and I see my sons in the illustrations.  It takes a complex disorder and turns it into manageable chunks.  It’s listed as a children’s guide to autism, but I think it’s an all age guide to autism.  It’s overwhelming, and you get used to speaking in jargon and doctor-ese, this book has put me back on the track to explaining to all ages that He’s not naughty!

 

xx

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

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

 

Summer Holidays- week 5 of 6

 

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.

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