Bring Josh Home....

I don't normally post anything about other families living with autism, I solely blog about my own and DS's but reading this story I just had to make a exception.

Josh is 13 year old with severe autism, he has to fight against the urge to self-injure himself. Quite often the injuries are potentially life threatening.

Josh was transferred to a assessment and treatment unit in Birmingham for a period of 6 months (his family live 260 miles away in Cornwall) nearly two years later Josh is still in the unit.

Josh's family are fighting to get the right care and support for him nearer to home but as us parents of autism know all too well, fighting the system and fighting for services for our children is a very hard and drawn out slog!

Dad Phill has set up a petition for support and services to be put in place not only for Josh but for other children too and so they bring him home.

Please read his story and watch the video of the gorgeous Josh

https://www.change.org/en-GB/petitions/kernow-ccg-please-bring-my-son-back-home-bringjoshhome-3?recruiter=87154092&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

This story is heartbreaking, I cried my eyes out when I read it as this could be anyone of us and any one of our special children.

No child should *unnecessarily be away from home and their family and no child should be without a hug and cuddle when they need it.

Please sign this petition and together lets help this family get their beautiful boy back.

*(please note that I am in no way saying that children/adults with ASD should be not live away from home, I'm am saying unnecessarily as I acknowledge there are plenty of reasons why children/young adults are unable to live with their family and for a variety of practical, health and safety reasons. The point I am making that in this particular case, it is unneccessarily, I am not generalising  all autism scenarios - just to be clear)

Can we fix it?.....Er no love, not a chance....

"They don't make them like they use to" is a phrase I often hear from some of my (older!) family members.

Maybe they have a point!

I have literally lost count of things/stuff/furniture that DS has broken over the years.
When I say broken, I mean several things here such as yes broken during horrific meltdowns so by stuff being thrashed about against walls, floors, my head.....

Some stuff has been broken when he has just got a bit frustrated because a toy hasn't done something he expected it to do or it hasn't played a tune he likes quick enough!
Some stuff has broken because DS was happily playing, maybe a little too rough....or maybe its broken because its not a toy and DS was using it in a way that it shouldn't be supposed to be used such as crawling along a shelf!!

As you can imagine at nearly 7 years old his weight was a bit much for this poor shelf with DS ending up in the sink! (Please note the red splatters in the pic is not blood!!)

Lesson learnt here: Remove all shelving from house to avoid future climbing and crawling expeditions!

This one happened today!...

Just a innocent game of hide and seek resulting in this wardrobe being trashed! I wasn't actually in the room when this happened as I was the one 'seeking' DS so can't say for sure how the door came to be in three pieces and lying on the floor with DS sitting inside.....(but DS assures me with a look of pure innocence that it did just literally fall off!)

Lesson learnt here: Wardrobes are rubbish places to hide if the doors are going to 'fall off' resulting in the 'hiding' person being exposed and losing the game! Wardbrobe manufacturers needs to take these games into consideration when designing and building their furniture.....;)

And lastly, flooding the bathroom seems to be our daily fun...

Bath water (and the bubbles) are thrown out of the bath onto the floor with the water seeping through the ceiling to the floor below! DS seems to get some fantastic (but very un-fantastic for me and poor overworked mop!) sensory feedback from this.
This is a hard one as I can't seem to get round this one. As its sensory related and with DS being a very sensory boy its certainly a toughy!

Lesson learnt here: Haven't a clue....erm.....move into a bungalow....?

Who else has had to 'autism proof' their home? As DS is getting older and taller I'm finding that I am having to up the 'proofing' around the place.....I can see.in another five years, we will be living in just a shell of a house!............. ;)

Have a good weekend x

Us against the World....

So far today, there has been at least two occasions that I could of cried my little eyes out, squawked like a hungry baby, threw myself on the floor kicking and screaming like a toddler and slammed doors before screaming some random obscenity like a teenager!

I'm glad to report that I didn't actually do any of these things by the way :)




Please understand that I'm not a crying person, oh no, I'm very English that way.




I bottle all emotions up and keep a very stiff upper lip. Maybe that's a bit of a problem for me - I don't know.






Today was a meeting day, them type of days whereas you having a meeting after a meeting, throw in a appointment or two and that's the day gone.




This morning was DS's review, it was held at school with most of the relevant professionals there.






A member of staff brought up the fact that DS often arrives to school with a dummy and that it was a problem because it's not age appropriate.


DS does have a dummy and no its no ideal by any means but neither is the alternative.


He has a dummy to sleep and as a stand by for when we're in the car.

Although I'm aware of his age with a dummy, the alternative of removing altogether is not a attractive one :(




SLEEP - Sleep is important to us. If DS was to be without his dummy then he probably wouldn't fall asleep until the early hours of the morning. Prior to that he would be very distressed, screaming, having meltdowns, self harming, breaking things and attacking me all of which would last several hours.




TRAVELLING - DS isn't a great traveller in the car. He will often unclick his seat belt to attack me whilst I'm driving. He will kick my seat and pull my hair. I find if I let him have his dummy (only if he is starting to get anxious whilst travelling) then he is calm and we get from A to B safely (and alive!)




I was only recently discussing impacts of his dummy to both his dentist and speech therapist. The dentist said that we have some time yet to gradually remove it before it starts to affect his secondary teeth and that the fact that he tends to have it whilst sleeping and in the car isn't as big issue as it could be.




I do intend to remove it but it will have to be a very gradual and thought out process. I suppose the reason why today was a bit upsetting that coming from a special school I would of expected staff to be a bit more understanding about this, its not like he has it during the school day and it wounded me a bit for them to presume that I hadn't thought of it and had a plan to remove it :(




The next meeting of the day was with a disabilities holiday club team. They are part of social care and what they do and how they do it sounds great.


I talked about DS, about his likes and his challenges. His challenges seem to go on forever a bit and I sounded like I was trying to talk them out of having him but I wanted to very honest about his needs.


It didn't matter as both of them didn't flinch and as they have both worked with children with disabilities for a very long time, there wasn't anything that they hadn't come across before.




I suppose what upset here is I realised just how severe DS is. I mean I've always known it but its like today it hit me, really hit me.


I started to think  of the dummy conversation I had with the school staff member earlier in the day as well as DS difficulties that I seemed to be continuously listing now.




I felt like grabbing DS and running off somewhere so we can't 'offend' anyone else with his behaviour or 'dummy'.


I would homeschool him and it would just be me and him.




Sometimes I feel like the only person in the world with a child with autism. It was exactly this reason why I started this blog because if there are other parents out there that feel like me then reading this blog will make them see that no they are not the only one to sometimes feel deflated.




Me and him against the world has never felt more true .....

Ready to Paaarrty! Thanks but no thanks....

Recently it was my birthday.

My boyfriend asked me what would I like to do to celebrate it - have a night out on the tiles maybe? Go out for a meal then onto a bar or something? 

The thought was nice but I didn't want to do any of these things. The reason I didn't want to do any of them because they all required.......erm...well effort...as well as the ability to be able to keep my eyes open past 9pm!

Now pre-DS well that would have been a different matter!

 Before my boyfriend would have finished one of them sentences I would have already mentally pinpointed a shopping day to buy a new dress and shoes for it and maybe some jewellery....and oh a clutch if I spotted a particularly gorgeous one......

Now, with constantly chasing DS around, trying to get him to put some pants on or stopping him urinating in something that isn't the toilet! the only thing I wanted to do was chill, relax have some quiet time and sleep.

So we booked ourselves for a spa treatment into a gorgeous hotel for the night......it was heavenly!

Here I am soaking away in complete silence with a brew! It doesn't get any better than this folks! :)

The treatments I had were so relaxing but honestly just a bath alone is a deluxe spa treatment for me!

It certainly did re-charge the ol' batteries and although I do feel a tinge guilty for being away from DS for the night it certainly gave me more energy to chase.. er I mean care for him when I went home the next day.

So it's decided, I'm going to try and do this sort of thing a bit more often - it's worth it alone for the fact that it allows me to finish a cup of tea whilst it's still warm.......:)

So a big thank you to my boyfriend for spoiling me.

Dear Mum, Love DS....

Dear Mum,

I can sense that it's that funny time of year again where strange and odd things start to happen.
For example, a few weeks ago you got me ready for school as you normally do but when I came home later that day I was shocked to see some funny looking big green thing stood in our living room! It resembled one of them things we see when we go for a walk through the forest but Mum this one was different! It had the most annoying flashing lights and loads of glittery and sparkling round little balls hanging off it!
I don't get why all of a sudden it appeared in our house, it was too much, I just couldn't bear it so I pulled it down to show you that I didn't like it.



You wrestled with it and propped it up again then started talking with a excited voice saying something about 'Christmas' whatever that is so I pulled it down again then you seemed to know that I definitely didn't like it so removed it. At last!

Now it's not only the big green thing that I'm concerned about, what's with the books you keep showing me? They always have a funny looking man wearing a red suit and lots of white hair. The strange bit is the man's hair seems to be stuck on his chin and around his mouth! I've never seen anyone who looks like that before nor do I want to either!

Also what's with the day where everyone seems excited and my routine goes skeewiff, this is the day that I find most unnerving. You and Dad take me downstairs saying someone has been but I don't understand who. I don't like the thought of strange people coming into my house, this makes me anxious, confused and scared.
I see different shaped objects covered in what looks like patterned paper under the big green thing (is that still there, thought I made it very clear how I felt about that!) you pass me one of the objects and both look at me expectantly, smiling. I don't know what you want me to do with it, I'm confused and start to become more confused and anxious.
You rip a bit so I copy until I have taken all the patterned paper off. It's a toy but it's in a box so I can't get at it. You remove the box so I can play with it. The toy is good but what was with the box and patterned paper??  Why didn't you give me the toy as it is, I would have preferred that!

Why are there so many of these objects here under the big green thing? It's too overwhelming, my head hurts and I feel like something is bubbling away inside ready to erupt. I don't like all this strange and weird stuff and the flashing lights on the big green thing are too overwhelming, too much of a sensory overload.

Mum, if we have to experience this strange 'Christmas' thing can I make some suggestions?

• Can we have a smaller green thing with clear lights with fewer round things or can it go in another room that I don't use much - like a bedroom?
• Can I not have my toys wrapped in that patterned paper, I don't like the anxiety of not knowing what's inside.
• Can I receive my presents throughout the week rather than be given them in one day, it's just too overwhelming for me.
• Can you mark all these weird days on a calendar for me and what to expect on each day to make it easier for me to cope with?
• Can we try to stick as closely to my usual routine as possible and allowing me some quiet time maybe in my bedroom away from anything 'Christmassy'

Thanking you in advance, Mum.

Love, Your Superstar!
xxxxxxx

Away for the weekend.....leaving autism at home.

There are things about autism that I love. These things include innocence - DS is not into superheroes or bad guys, he is more than happy playing with his spinning toys, watching bubbles and listening to nursery rhymes. Also the way DS is not self -conscious - he doesn't give a hoot what anything thinks of him therefore other peoples opinion does not restrict him in anyway, if he wants to dance around the room making a 'odd' noise then he will if he is alone or if there is 10 people there! The way he sees things from a different angle - I often seeing him looking at things really close such as a running tap mesmerised by the changing patterns and glimmer of colour. We have often sat there watching it together, something I haven't noticed before until he showed me.

Then there are things about autism that I don't particularly favour :( DS watching children playing and wanting to join in but doesn't know how to, the way autism limits his speech which makes him frustrated and angry, how it makes his hearing too sensitive so noise is unbearable, how it makes him unaware of danger, how it restricts his walking/fine motor skills/understanding.
Its this groups that makes days out as well as daily life challenging, so with this in mind we decided to have a little weekend away to see the........

Ta..da! The Coca-Cola truck!

When I heard that the Christmas Coca-Cola was coming to my area I knew we had to see it. I hoped DS would like it too with it being all lit up and would give him some nice sensory feedback. To make a bit of a weekend of it, we booked a room for the night as DS just so loves staying away.

As always, I started to prepare DS the day before about what we were going to do. As it was a school day for everyone else, we decided to take full advantage of places being quiet for DS such as going swimming at a local fun swimming centre, then see the big red truck then to the room (as we calls it)

I showed DS a picture of each of these from the relevant websites as a visual. He took it all in and then proceeded to dance and do his happy jumping around the room :)

DS was a absolute superstar! He tolerated so much, so well! I always watch him intently so I can spot any cues that he needs to get out or escape, the first clue came after about 70 mins into swimming that that the noise was getting too much. I thought he did amazingly well to last that long so we started to prepare him that swimming was nearly coming to a end.

Over the weekend, he coped with:

• The echo and general noise of swimming
• The drive from swimming to the hotel
• Checking into the hotel and getting to our room to realise that they only had a shower and not a bath as well as the drive to the transferred hotel (one with a bath)
• Sitting in stand still traffic
• Checking into a second hotel
• Seeing the Coca-Cola truck in freezing weather
• Sitting in a busy restaurant whilst having tea
• Eating breakfast whilst sat beautifully in a strange place with strange plates, forks, spoons etc than that at home.
• The drive home

Wow! wow! wow! I'm still in shock at all this. This is the second trip away that has been fabulous with no meltdown in sight.
Of course DS will have 'wobbles' and anxiety attacks which I'm finding with early intervention from me I tend to be able to bring him back to being calm - I've just to catch it early enough!

A magical and precious time with DS and autism seemed so far far away....

Have a good weekend xx

A Very Niave Expectant Mum and a Good Job Well Done....

When I think back to when I was expecting DS, I (very stupidly) remember thinking along the lines of "baby will glide easily into my daily routine. I will still be able to keep a nice clean tidy house, visit friends..blah..blah..blah..."
*feel free to laugh out loud now whilst banging fists on table in hysterics*

I actually chuckle to myself when I think of how niave I was! It was definitely more like "baby comes into the world with a loud bang, dominates and controls my days/weeks/months/years. I'm lucky if I manage to finish half a cup of tea"!

I pictured that home would mostly be like this..

 

When in fact, last week it actually resembled this...

Six years on and nothing much has changed. DS still dominates and controls my days, I work everything else around him.
Over several days last week, DS was in a mischievious and destruction mood. He sprinkled a nearly full bag of flour on the kitchen floor! As I was clearing that up, he decided to empty a vase of flowers out. Whilst I clearing the tipped out water he then turned the electricity off by the main switch! This went on and on, I just couldn't keep up with him.
So whilst he was safe (with only flour and flowers accessible to him) I skulked to my bedroom, shut the door and had a mini meltdown of my own!

I screamed into a pillow, composed myself and went back down to the chaos....er..i mean DS. Surprisingly, I felt much better, like I had gotten rid of alot of tension and frustration. I am human at the end of the day and DS did not witness or hear my 'Gggrrr' into the pillow therefore I felt like I had dealt the issue effectively.

I was talking to a parent recently who says that she feels like she fails her child during very difficult and challenging periods because she gets frustrated too. It was this parent that inspired this post and I wanted her and others to know that we all have had times when we have been pushed to our limits and boundaries have been broken. We need to remember that we are doing a very difficult, hugely rewarding at times but still a very difficult job. Our relationships are put under strain, our whole lives are turned upside down and our future plans changed.
Please understand, I am not in anyway complaining about the above in relation to my son,I'm just stating the facts. We also do this job free of charge.

I think as parents we need to be kinder to ourselves in general, we are doing a great job especially with everything considering. Autism awareness is still very limited within society and its only 50 years since the first autism diagnosis - not a long time at all!

To wrap up this post, my plea is to give yourself a hug and pat on the back for doing a fab job! :)