So now we have moved

I’ve been off the blogging radar for a while. I haven’t written a word, I have barely read a thing, and I’ve been itching to go back to it. But, sometimes, life happens. In our case, we have moved house.

Moving is a big thing for anybody, especially if there’s more than one of you. We are four in our family. Four very different people who all handle it differently. My other half has enjoyed the chaos and the planning. He described it as having all these puzzle pieces that he now had to put back together, and his ADHD brain enjoyed and thrived with that challenge. I, on the other hand, hate living in a mess. For a month or so it’s been chaotic and messy. An endless task of boxes to go through or pack. What to keep, what to throw? Endless trips to the skip. Then redecorating and furniture building in our new house. Not to mention that our usual life still took place parallel to all this, with appointments, parents evening, school, and homework to get through. To say that I’ve been stressed is an understatement! Everything that could wait had to, like training and writing. I’ve missed it, but it was only for a short time while everything was crazy around us.

It’s been stressful for the boys. The move in it self was stressful and took some getting used to, and not only do we now live in a new home but we’ve had to find a new routine since Harry no longer is eligible for transport to school, which means I have to do the school run with both boys. Harry has struggled a bit with this, he misses his taxi and the friends he made on it.

Harry made it very clear to us that he didn’t want to move. Slowly we’ve been working on him, and by working, I mean bribing, haha! We told him we’d let him have the Wii in his new room. His new room is much bigger than his old one and plenty of space for the Wii. He was keen on the idea and loves playing on it now that it’s in his room,  but at the same time he also now miss the old house, his old room and the familiarity. I guess it will take a while for him to adjust.

I’m from Sweden, a country where moving house, (and selling and buying) is a fairly straight forward and quick process. I, of course, did not realise this until I moved here to the UK where its a whole other ballgame! It’s a process that takes time and effort and is very, very complicated. I won’t go in to details, because that would be far to boring, but I am very thankful that my husband did most of the hard work involved.

We bought this house, or should I say, had our offer excepted in the beginning of August. We moved in the beginning of January. And we only just found out our moving day a couple of days before christmas! Needless to say, our christmas wasn’t as relaxed as it usually is.

Our boys knew about us moving for a long time. In fact, they saw the house a few times in the early days after we had put in the offer, but this has been such a long process I believe they started to doubt whether or not it would actually happen at all. I too started to wonder the same thing. It felt like a myth. Something we heard about but never really knew if it was real or not.

Fast forward to December and all what that month entails, and it became very real. In fact, I sat on Christmas Eve ordering our new kitchen appliances. Not the most relaxing christmas.

Its been a stressful time, but now I’m starting to see the light at the end of the tunnel. We’re all moved in, and there might be a few more things to do, pictures to put up, a shelf here and there, but we’ve settled in and are very happy in our new home. I feel like I can finally take a deep breath and relax.

xx

 

 

The first thing I did when my husband came home…

…Was to leave.

Don’t worry, it’s not as dramatic as it sounds.

My husband travels sometimes for work. Not all that often, I can’t complain, but a few times a year he goes away, both within Europe and the U.S. Usually no more than a week. This time he was away in America for 11 days.
And one week was during half term holiday, which means both our boys were home with me.
Both Joshua and Harry had a few activities going on during the week, but none of them at the same time, which meant I always had at least one of my boys with me, all day, every day.
It was fine though, it gave them some much needed space from each other, and I got some quality time with each of them, which was lovely. But it also meant I had NO time to myself.

I have to say, hats of to all you single parents out there, I do not know how you do it!
I was fine, I knew this was only for a week, and then would not only my husband be back, but the boys would go back to school. So I was fine with one intensive week. But to never get a break?! I don’t think I’d cope!
I don’t think of myself as an introvert, but I do need time alone to recharge my batteries.

Being a morning person, I always make sure I’m up early enough to fit in my essentials; (meditation, 5-10min yoga and journaling.) Without these, I can not start my day. If I’m up really early, I also fit in writing or a workout, especially if I have a busy day and know I can’t fit these things in later on in the day. Usually, during holidays when boys are home, I do all this in in the morning, before Richard goes to work, so that:

A. He can be there for the boys in the morning while I get my ‘me-time’
and
B. I’m free to spend the rest of the day with the boys.

Things were a bit different without Richard around last week.

Harry usually ends up in our bed in the early hours of the morning. It’s one of those things we need to work on, but I’m kind of expecting him to grow out of it. Joshua used to be the same a few years ago, but eventually stopped.
Harry always goes to sleep in his own bed, but sometime during the night, don’t ask me when because I’m sleeping, he creeps in to our bed. It’s quite cosy, if not a bit crowded. So in the morning, I sneak out of bed, while Richard and Harry stay and sleep or have a little cuddle.

If Harry wakes up, and no one is in the bed, he will scream the house down. That boy is quite content on his own a lot of the time, but first thing in the morning, he needs a lot of contact.
So rather than having Harry screaming and waking up upset and then spend the next half hour trying to calm him down, I opted to stay in bed with him in the mornings. Plus, it was really cosy.
Not that we stayed in bed late, we’re talking about 7-ish here, then I made sure that he was settled with something for 10-15min so I could do my essentials, but it left no room for anything else.

As I’ve written about before, our boys don’t really socialise much with other kids, not like most kids their age anyway. They don’t go out to see friends or have friends over. Not often and not without my supervision at least. They are with me all day, every day. So between them and housework, I had no alone time. Apart from in the evening when they had gone to bed. But, being a lark, I was exhausted by the end of the day and had no energy to do anything productive. I was dating Netflix for a week.

Like I said, it was for a limited time and I’m not complaining. I love my boys and spending time with them.
But I also longed for time to myself.

So when my husband came home on the Friday afternoon, I left.
Just for an hour walk.
Of course I said Hello to him, and yes of course I’d missed him, but as soon as he was in the door I was out.
I so craved to be alone with my thoughts.

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Me, myself and nature

Then I came home recharged and we all spent the rest of the weekend together.
For me it was a necessity. Everyone needs time to them selves.
I love my family, and I love spending time with them. But to be able to be the best version of myself, I also need some time alone.

So me, nature and a good podcast in my ears was what I’d longed for.

xx

Summer Bucket List update

Since summer is officially over now, and the boys go back to school next week, I thought I’d update you about how our summer went. As I wrote about here I’m not a big fan of unplanned days or big open spaces of  time, so I decided to set up a Bucket List Summer 2016 so I had some ideas of what do this summer with the boys.

I have to say, this summer went a lot smoother than I’d expected. I do think my routines and goals helped me a lot.

A lot of the stuff got ticked off while we were in Netherlands and stayed at Centre Parcs. I’d never been to Centre Parcs before but I highly recommend it, the boys loved it! Especially all the water slides.

So, here’s what we managed to do (or not do) this summer:

 

❏ Get Harry to learn how to ride without stabilisers (or at least practice)

✔︎ Go to the beach

❏ Sleep in a tent

✔︎ Visit a farm (I’m counting the small one at Centre Parcs)

✔︎ Have a family game night (Lots of Wii bowling)

❏ Have a family Singstar night

❏ Go to a theme park

✔︎ Go to the cinema (We saw BFG)

✔︎ Visit national trust place

✔︎ Visit a big city (Amsterdam and London)

✔︎ Make a summer scrapbook (I’m working on it)

❏ Play on the trampoline

✔︎ Visit a museum (The NEMO Science Museum in Amsterdam)

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On the roof top of the Science Museum

✔︎ Eat ice-cream

✔︎ Go swimming (we did A LOT of swimming at Centre Parcs)

✔︎ Have a playdate

✔︎ Visit Nannie Diane. (Everyone but Harry got to see her)

✔︎Visit Granddad (and Great-Gran!)

❏ Have a water fight

✔︎ Pick blackberries (mainly  me, but still…)

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Harry helping me pick blackberries

✔︎ Have a picnic (on the beach)

✔︎ Go bowling

❏ Go to Brighton

✔︎ Climb a tree

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Lots and lots of tree climbing!

✔︎ Get a family photo done

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Now, as you can see we didn’t complete all of the things on the bucket list. Some of it was down to the boys not wanting to. I could not once convince Harry to go out and practice on his bike! We also never slept in a tent, or jumped on our trampoline, even though it’s right there in our garden!

Harry actually did go to a theme park, just not with us. He went to Chessington World of Adventures with Springboard Project, which is an activity group for children with disabilities. But I felt like it would be cheating to tick that of our list so I didn’t.

Richard and I also had a Weekend in London which was absolutely fantastic! Loved every second.

All in all, its been a good summer! I will definitely make another Bucket List next year, and maybe even tick all the boxes?

xx

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Hubby and I in London

Bucket List Summer 2016

This is the last week of school for the boys and then summer begins! I usually kind of dread this time of year, as I wrote about here. I love my boys and I love spending time with them, but it’s hard work so ‘holiday’ is hardly holiday for me.

To organise myself a bit more this year I decided to make a bucket list. A list with things we can do so on the days we don’t already have plans, and hopefully we have ticked all of them off by the end of summer. I asked the boys what they would like to do and I also looked at lists others have done, but I’ve tried to make sure only to include things I know our boys would actually enjoy.

I’ve put numbers next to them, but really there’s no order here.

❏ 1. Get Harry to learn (or practice) how to ride without stabilisers
❏ 2. Go to the beach
❏ 3. Sleep in a tent
❏ 4. Visit a farm
❏ 5. Have a family game night
❏ 6. Have a family Singstar night
❏ 7. Go to a theme park
❏ 8. Go to the cinema
❏ 9. Visit national trust place
❏ 10. Visit a big city
❏ 11. Make a summer scrapbook
❏ 12. Play on the trampoline
❏ 13. Visit a museum
❏ 14. Eat ice-cream
❏ 15. Go swimming
❏ 16. Have a playdate
❏ 17. Visit Nannie Diane
❏ 18. Visit granddad
❏ 19. Have a water fight
❏ 20. Pick blackberries
❏ 21. Have a picnic
❏ 22. Go bowling
❏ 23. Go to Brighton
❏ 24. Climb a tree
❏ 25. Get a family photo done

 

That’s it! I will let you know how we got on with our Bucket list after the summer holidays.

xx

Stress for our autism family

I haven’t put up a new post in a while, because I haven’t been able to write as much as I would have liked. The last few weeks have been very busy and last week was a particularly  difficult one for us as a family.

Every day was a very busy day for all of us. And with Joshua having things going on every evening, and with Richard having an extremely busy week at work with late nights, we had to plan with military precision to make it work. Thank goodness for my sister-in-law, who was able to help out.

Joshua is starting High School in September, and for any kid that’s a big step. But for a child with autism it is extra hard. I’ve been to more meetings than I can count with both his current school, his new school and with the Social Communications team from county who are helping us with the transition. Josh has had several visits to his new school, with me and with school. Just this half term he’s having seven visits!

Two evenings last week his year group had a show put on for us parents, there was a visit to his new school one of the evenings and there was scouts.

I know that a lot of families have things going on every evening with their kids activities, but evenings are usually not a great time for our boys, one or two perhaps, but not every night.

Josh is not great in the evenings, especially not on school nights. In the morning he takes medication for his ADHD which helps him to stay focused at school. But in the evening this has worn off and it is so much harder for him to concentrate and absorb any information. It’s hard for him. After having spent a whole day at school, keeping it together, once he’s home he just wants his own space and to do his own thing. So having things going on every evening took its toll. Especially since we all had things going on in the daytime as well.

I won’t go in to details, lets just say it was stressful.
The culmination was on Friday morning when he threw up all over his bedroom floor. He wasn’t sick it’s just that he tends to throw up when he’s over stressed. Poor boy, he hates throwing up more than anything. Apart from balloons.

Anyway.

End of summer term is always a busy time, but this year was particularly stressful. All changes and events going on takes planning and is probably stressful for all parents, but again, when you have a child with special needs it takes it to a whole other level.

It’s not just about the event itself (wether its an evening show at school, sports day, parents consultation or anything else) and trying to fit it in the calendar.

It’s also the preparation of the child, or in our case; children, for this upcoming event.

How will he cope?

Who will help him?

How will he react to the noise, busyness, stress, new people etc.

Is he to tired?

Can I bring Harry?

How will he cope?

Will I just run around after him the whole time?
Honestly, I can not even bring Harry with me when I drop Joshua off at scouts. I’ve tried. It never ends well. Because Harry is Our 10 year old toddler

By Thursday, I was so stressed I had a constant headache and I had barely seen Richard all week because he had been working crazy hours.

But I had noticed something else about me as well.
I had completely lost my oomph.
I didn’t have any drive to do anything.
Usually, getting up at 5am, doing my meditation and writing sets me up for the day. Helps me have a good day and centers me.

I had none of that drive.
I didn’t ‘feel like’ meditating and even less; writing *gasp*

I love my morning routine! What happened?
I knew that if I could keep my routine up, I would be able to handle the stress better, so I reluctantly tried anyway, but still the stress got the better of me.

Having suffered from depression in the past, I am terrified of ending up there again, and I try to be aware of any signs, so I caught Richard one morning before he headed out the door and told him about my lack of drive. I wanted him to be aware.
I told him how disappointed I was in myself for not handling stress better than this.

He laughed and told me that I do handle stress well. It’s just that our stress is constant, so when extra stuff piles on top it just tips us over.

This makes sense, I just hadn’t thought of it that way. When you live it you don’t always see it.

Stress in autism parents (and particularly mums) are well documented. One study found that the stress autism mums experienced could be compared the stress of a combat solider! That’s quite telling, don’t ya think?

autism mum stress
So if my stress levels are already on a constant high, it won’t take a lot for me to feel overwhelmed. I’m only human after all.

So

I’m not writing all this out of self pity; poor me.

Not at all.

No, I’m writing this because I can!

Guess what?
I woke up the following morning feeling a million times better. I bounced out of bed at 5am and couldn’t wait to have my cup of tea, meditate and then to sit down with my laptop and write.

Just the knowledge that I didn’t have to beat myself up for feeling overwhelmed ironically made me feel better!
So I needed to remind myself to not to be so hard on myself. It’s as simple as that. It’s not the first time I’m telling myself this and it probably won’t be the last.

But I have to accept that sometimes life is more stressful, and that is ok. It’s ok to feel overwhelmed.

I will bounce back.

Yes, I’m scared that life might get the better of me and that I end up in depression again. But I think, and hope, that I’ve learned enough about myself and now have enough strategies to not let it get that far.
Life ebbs and flows, I just have to accept the waves and ride with them.

xx

Our 10 year old toddler

Every time I think I might start moving my blog more towards health, fitness and mindset, which I love writing about, I get drastically dragged back in to our reality. To our autism reality to be precise. There’s just to much going on in an autism household not to write about it, ha!

So here’s what happened:

Harry peed on our carpet. Yep, you read that right; Our almost 10 year old peed. on. our. carpet. In our bathroom which already slightly smells of old pee might I add, from old toilet bowl misses by him and his older brother. But this was no miss, this was deliberate. (and yes, I clean and clean and it still smells)

As well as autism, Harry has speech and language delay which makes it very difficult to get him to explain why he does something. We’ve always struggled with this.
“Why did you wee on the floor, Harry?”
“I did a wee on the floor” is the answer
“Yes, Harry, We can see that, but why?”
“It was my potty”
Harry doesn’t use the ‘potty’. Harry has been using a toilet since he was 3.
I have no idea.

Harry is like a big toddler at times.
He’s very clever at certain things and ticking along well academically at school, well behind his peers in mainstream, but still, he’s progressing.

But he’s speech and language delay makes it very difficult to know exactly how much he understands about the world around him. Our biggest worry is that he doesn’t understand the difference between fiction and reality.
He saw Homer Simpson get his finger cut of; he laughed really hard and then went to the kitchen to get a knife to cut Joshua’s finger off!

There’s no consequential thinking: If I do This, then That will happen. If I cut Joshua’s finger off then it will be funny, just like on the Simpsons and I will laugh. Not: If I cut Joshua’s finger he will be in a lot of pain and we will have to go to hospital.
We are obviously trying to teach him consequences. But it is really hard to know how much he understands. And he will have a lot of trouble in his adult life if he doesn’t understand consequences.

Harry still hits other children. When he’s overwhelmed, confused, upset, angry. To be honest, we rarely know why he does it. It’s not all that often anymore, but I still can’t trust him around other children. I’m watching him like a hawk.

Harry is still ‘on’ everything. He needs to touch things. It’s a sensory thing, I understand that, but its frustrating that I can not just ‘let him be’. I need to know what he’s doing otherwise he might be doing something less desirable, like breaking things or drawing on the wall. Not long ago when he was upset he wrote swear words on the wall outside his bedroom. Yep, I had to re-paint that wall. The reason he wrote them was because we’d told him not to say them. Clever!  So he probably figured that that we hadn’t told him not to write on the wall, just “don’t draw on the wall”. This way he got to express his naughty words without actually saying them. He’s clever and can work things out, and we have to try to be two steps ahead all the time.

So sometimes he seems to understand perfectly well what he can and can not do and work a way around it. Other times he doesn’t seem to understand right from wrong at all. He might do/not do what we ask, but that’s because he doesn’t want the consequences we give him, not that he necessarily understand the outcome of an action. Just like a toddler.

His speech and language delay makes it very frustrating for him as he can not express himself as well as he’d like or we’d like. Sometimes this frustration comes out in violence or swear words, because in the heat of the moment he can not find another way to express himself. I feel so bad for him. I wish I could help him. And obviously we are, the best we can, but he will never ‘grow out of’ this disability. He will probably never speak without hindrance.

Harry also doesn’t understand the dangers around him. Without this logic that actions have consequences we have to try to explain to him in every scenario what might happen, and hope that he understands. Mostly I get the feeling that he doesn’t.
“Harry if you run out in to the road, a car might hit you and that will hurt”
Nope, we still can’t trust him.

He’s run off more times than I can count.
He has escaped our house on a few occasions.

One time when I was alone with the boys, I had locked every door in the house and thought it was safe for me to take a shower. I came out of the shower and find that he’s gone.
The clever escape artist managed to unlock the door from the kitchen to the garage, then unlock the door from the garage to our garden, make it over to the back gate, stand on an overturned plant pot, unbolt the gate and run off.

He’s like a very clever toddler. But a toddler none the less.
Even though he’s almost 10.
I love him to bits, but honestly, it can be exhausting!

xx

11 Things NOT to say to a parent of an autistic child

We have two boys with autism and as a ‘Special Needs Parent’ we hear a lot of things and there are some things we simply do not want to hear. I know there are lots of lists like this out there, but I thought I’d share what I’ve actually heard myself and why I don’t want to hear it.

1. “He/she doesn’t look autistic.”
Really? What is he/she supposed to look like? Autism doesn’t have a “look”. He might look “normal” to you but it doesn’t mean it’s not there.

2. “It could have been worse.”
Yes, it can always be worse. I have a lot of things to be grateful for in life, as do you, but autism is hard for everyone living with it and that statement is really patronising.

3. “But I’m sure you wouldn’t want him any other way!”
This is a tricky one.                                                                                                                                            I love that my eyes have opened up to a whole other world, that I get to raise autism awareness and that society is becoming increasingly more accepting of autism. Everyone is equal and should be treated as such, disability or not. But in the end, this is MY child and I want what is best for him just like any other parent.
Would you say this to a parent who had a child in a wheelchair? I love my children for all they are, but if I could take away their autism I would, in a heartbeat. If I could take away their struggles and pain, I would.

4. “Will it get better as he gets older?”
Better? Can he learn to adapt around our neurotypical society you mean? In some ways yes. But you have to understand that every step of the way is work, really hard work. For him and for us.

5. “I heard that autism can be cured by cutting out dairy and gluten. Maybe you should just cut those out?”
First of all, its not as simple as it sounds. Yes, I’ve heard about this too. Just because we’re not doing it doesn’t mean we don’t know about it. There is no proof that it works. Some studies showed that some autistic traits in some children can decrease by excluding dairy and gluten, but this is usually in children who already have digestive issues. Mine don’t. I’ve tried twice (within the space of a few years) to cut out dairy and gluten from my boys diets. It is really hard, time consuming, expensive and it didn’t work. Which leads me to no 6

6. “He’ll eat when he’s hungry”.
No, he won’t. My boys will not eat if they don’t like the food. When they lost weight and were risking malnourishment I pulled the breaks and decided that nutritious whole foods (as much as possible) were better than them living of gluten free toast with jam. Because that’s pretty much all they would eat. They didn’t like hardly any of the gluten/dairy free stuff, and No, it didn’t matter if I made it myself. They did not eat my gluten free bread, or meatballs, or fish fingers. Even if I did my best to make it look like the original. My boys are picky eaters on the best of days.

7. “My child used to do that…” (insert…)play with baby toys, recite whole movies, hit or kick strange children, not have friends, have a meltdown in a shop, not answering when spoken too…the list goes on and on.
Did they? Mine still do.

8.” Do you think it was the vaccines?
No, I don’t. The vaccine theory has been disproved over and over and still people refuse to accept that!

9. “What’s his special interest?”
Not all children on the spectrum have a special interest or obsession, just like a neurotypical child can also have a special interest.
Joshua does have an obsession with trains and lifts, but Harry has several interests that vary, but not one that he talks about 24/7 like Joshua can about his. Being autistic doesn’t have to mean you have one.

10. “I know all about autism. I have a … (insert appropriate; neighbour, cousin, student…) who is autistic”.
The first rule of Fight Club… I mean “Autism Club” is:                                                                                 If you’ve met one person with autism you’ve met ONE person with autism.
The second rule of “Autism Club” is:                                                                                                       If you’ve met one person with autism you’ve met ONE person with autism!

All joking a side, this is something we talk about a lot.

Every one is different, that includes people with autism. They are all individuals and none are the same. Yes, they obviously have some things in common but it’s called a “spectrum” for a reason. Two people with autism will not have the exact same traits or react in identical ways to input. Just look at my two. They are really different. They have autism in common but are still individuals.

11. “We are all on the autistic spectrum more or less.”
This really gets under my skin. No, we are NOT all on the spectrum. Like I said in no 10; we are all different, autistic or not, but autism is a neurodevelopmental disorder. It’s a whole other processing system.

Bonus!
I understand that you love talking about your (neurotypical) children, but sometimes you might not realise that some things kind of stings, because these are things I don’t get to experience with my own. I’m not saying you can’t talk about your kids, just be aware of this.

So here are
3 Things that sting when we hear.

1. “It so much work taking my kids to all their activities.”
I understand it’s hard work driving your kids around. But I would love for my children to have their own social life and hobbies.

2. “I never see my kids, they are always out playing with their friends.”
Your child is building his/her independence which is normal for a growing child. Again, I would love it if my boys had friends to hang out with. Independently.

3. Moaning when your kids want your attention or talking to much TO you.
I would give my right arm to have a proper conversation with my boys. One where I don’t have to fight for every word that comes out of them, or when the conversation is on mutual terms, not just being bombarded with facts about trains.

So there you have it. I welcome any comments or questions.

xx