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

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