Monday, 23 December 2013

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!

Sunday, 1 December 2013

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

Wednesday, 13 November 2013

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 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! :)

Monday, 28 October 2013

Blackpool Pleasure Beach - the pleasure was all ours....

Daddy and I took DS to Blackpool at the weekend. It was magical!

There was a special reason why it was magical and that reason is because this was the first ever trip that went smoothly, without a hitch/wobble/meltdown/anxiety attack. There were no issues, no issues at all which has never ever happened before!
We booked the usual premier inn for the night which DS loves! The fact that they are always the same wherever you go is a massive hit with DS as he knows what to expect.
So on Saturday we drove to Blackpool, Daddy sat in the back with DS,  fiddle toys within reach, drinks and snacks in plentiful supply - we were sorted for journey.
As we swung in the Premier Inn's car park, DS recognise the sign outside and started bouncing up and down on his seat in the car with excitement :)
We checked in and let DS get use to the room before we headed out again

Due to the crowds and noise at the pleasure beach, we decided to give that a miss and instead headed towards the tower for the Blackpool eye. However that wasn't running due to the strong winds so we headed to the sea as DS just loves water!
Actually, he loves water a little bit too much! He was adamant that he was going to run straight into the sea and it took all mine and Daddy's strength and energy to chase after him to prevent him from running in and being swept away - we both moved like smooth athletes! ;)
DS loved our reaction to this so kept trying to do it and it kind of became a bit of a game. We would take turns in chasing him (within safe distances to the water) the tickling him once we caught him-he loved it and giggled breathlessly when we caught him.

(Mental note to self: Ugg boots are not ideal for sprinting after very speedy and quick as a flash child - must re-valuate footwear for future use!!)

The plan was to grab some tea, go back to the room give DS a bath then come back out to see the illuminations. What exactly happened was that after DS's bath, he turned the TV off, light off said goodnight to us and got into bed. So that was that!
Once he was asleep, we quietly put X Factor on and made a cup of tea :)

The next day, we headed back to the seafront as DS had enjoyed it so much the day before. It was very very windy. As I got out of the car, the wind was literally blowing all my hair up, DS was smiling away at me so being the silly parent that I am I started pulling silly faces which he was finding hilarious!
*Daddy took this very flattering picture of me*

I cannot tell you how refreshing and so enjoyable it was to take DS on a trip that went without a hitch and one that he enjoyed so much - like I said its never ever happened before. I've been thinking why was it so successful, why did it work beautifully and why hasn't it before? This is what I came up with:

*It was planned weeks before with DS sensory issues considered

*I prepare DS the day before by showing him a pic of the room and telling him exactly how we were getting there, who was coming, when we would be going and how long we were staying

*Once we were there, the trip was totally child led. We followed his lead rather than us saying "right this is what we are going to do" DS decided what we were going to do and when we were going to do it.

*We took care to avoid sensory overload situations (ie avoiding the pleasure beach) and if it was impossible to avoid any we got him out as soon as possible

*Daddy and I enjoyed ourselves too which children pick up on. Happy parents=happy kids!

* We know DS well and know what he can tolerate and what he can't some being through trial and error of previous trips.

It would be great if this was the start of things to come but we'll see.
You know your a autism parent when a day out doesn't consist of your child lying on the floor, screaming whilst attacking you in the most public place ever *notice how they always choose the most public and exposed place possible??*
Even if we never have another day as good or as smooth as we did at the weekend again, I will always remember this one and for once, for the right reasons xx

Thursday, 17 October 2013

Unusual Trampoling Buddies....

Well I've had my first Makaton Signing lesson and absolutely loved it! I have a great tutor and a great rapport with him!
The time went so quickly but we did manage to cover quite a few signs as well as practice them too.
When the SALT (speech and language therapist) asked me if there were any particular signs I wanted to know.........well I'm sure you can guess what I asked for? Oh yes! the beloved washing machine! :)) if I learn nothing else then I must know this sign.

Now Makaton does not have a sign for washing machine (how could they leave this precious and important sign out I ask you?! hiss! boo!) so we are using the BSL sign for washing machine which I've had loooaaaaddss of practice at this week with DS! I'm looking forward to the next session already!

Now DS has been up to some funny little tricks just recently. He has taken to dragging some strange things onto his trampoline with him and bouncing with them. It started with the clothes airer, this was dragged up the garden, into the trampoline and bounced with until it could take no more and folded itself up! DS found this hilarious! So would get me to open it up again for him to bounce with the thing bouncing up and down with him for it them to fold shut. I must admit the more he laughed then the more I laughed (I'm sure the neighbours have already written me off to be bonkers ;)
Once he got tired of that, he started to take other things in for a bounce such as the shoe rack and his garage...
Here is a queue of trampolining 'buddies' all waiting patiently for their turn!
A few chairs, a scooter and a cushion have also joined DS for a bounce.

I'm not too sure of the fascination behind this one but it brings him fun and is not harming anyone so he can carry on least the beds are safe from trampolining........for now!

Friday, 4 October 2013

The Beauty of Signs....

When DS was around 18 months old we were always on the go.
We were always trotting off to either a Mother and baby group, baby swimming lessons or a playbarn somewhere. It was fun and I loved taking my baby these places showing him off and seeing how much fun he was having. Life was very sweet indeed.

One day, whilst walking out of our regular SureStart Children Centre after another busy play session with DS already well on his way of flaking out in his pushchair I just happen to spot a 'Makaton' sign language course leaflet on the reception desk.

The course was to run over 6 weeks by a fully qualified Makaton tutor, the aim of the course was to teach parents some basic signs to help ease of the frustration of toddler tantrums. For example, it is believed that many toddlers react badly to the word 'no', the sound of the word makes them throw themselves on the floor so it was suggested that using the sign for 'no' is a possible alternative. This was before anyone was aware of DS autism but I thought it would be something useful to learn so I signed up.

I found the course interesting and picked up the signs well even if I do say so myself :)
 I definitely enjoyed it more than I thought I would and have used makaton ever since with DS. Immediately at the end of the course, I wanted to take it further and increase the signs that I knew which would mean enrolling on a college course for this and with running a home, baby and juggling work it just wasn't a option really.
When later it became apparent that DS had communication and speech problems, I was grateful that I knew Makaton at a reasonable level and used it pretty much constantly when communicating with DS.
Even today sometimes I find myself signing when talking especially if I'm in a noisy environment (such as the pub!!!!) I will sign as I'm talking and not even realise I'm doing it!

DS doesn't sign but DOES have a good understanding of Makaton. All staff in his school sign too. Unlike the British Sign Language, Makton is used along with speech to, if you like promote the spoken word.

Recently, I've been very lucky to receive a grant from a local charity. A lady from the charity asked me to come up with a 'wish list' for both DS and myself. I listed things that DS would just absolutely love and for myself I listed a extension of  'Makaton'. She seemed interested in this and within a day had arranged for a independent speech and language therapist to come into my home whilst DS is at school for 1:1 sessions in Makaton - I can't wait!

I've met the speech therapist and discussed with him what I want to gain from our sessions, we have already plotted our first lot of sessions.

I think this is a great skill to have and can't wait to get cracking with it!
I promised myself that I would use my time from work effectively and I think this is just another good example of this :)

Wednesday, 25 September 2013

Fun at the Fun Fair

When Daddy told me that the fun fair was in the town and suggested he takes DS, I looked at him as if he had just fell from the sky right before my eyes!
"Er........sorry say that again" I asked
I felt like sitting Daddy down and gently explain that fun fairs are:
1) Very Noisy
2) Contain lots of over-excited kids (see point 1)
3) Contain lots of squealing kids on rides (see point 1 again)
4) Have lots of people and crowds always produce lots of 'point1'
5) Have lots of flashy lights
6) Are you mad for even suggesting this??

However Daddy made a valid point. He said we are presuming that DS won't be able to tolerate it because of previous experiences but look at what he does tolerate because he enjoys it so much.

He was right.

DS loves swimming. A few times we have been happily swimming away in a nice quiet pool when all of a sudden lots and lots of families, groups etc have comes charging into the pool. They have been shouting and generally loud. I've thought "uh-ho" this is going to be too much for DS but surprisingly he has been okay about it. He still hasn't liked it by no means but because he has been doing a activity he thoroughly enjoys and loves he has been able to tolerate the noise for a period of time.

So I agreed to Daddy's suggestion on three conditions:
1) I have to come as this is going to be a two man job!
2) We have a back up plan if it all goes pear shaped and
3) We get out of there pronto as soon as we can see a hint of distress!

All were agreed and the back up plan was escaping to a quiet and pretty park a short walk from the fair which was familiar to DS.

So off we went. Pulling up in the carpark the music was very loud which DS wasn't happy about but still we got out of the car and proceed to the fair to give it a go.

We both held a hand of DS and slowly and gently guided him around the fair. He was smiling so we decided to try him on a gentle ride which he was okay to go on

He sat beautifully and after getting use to the motion of the ride he started to enjoy it.
As that went smoothly we tried another ride, the mini waltzer
Again enjoyed and was taken by the lights on this ride.
This turned out to be a lovely family experience as DS has never been able to tolerate anything like this before.

Not wanting to push it any further as we seemed to have done well, I suggested that we now went to the quiet sanctuary of the park.
DS played happily on the slides and swing before heading back home whilst Daddy and I talked about how amazing DS is which we always seem to do.

Nothing should surprise me again with this little boy!

Tuesday, 17 September 2013

Giving a little something back....

As I'm sure most of you that read this will know that parenting a toddler has its tough times. There's the fact that your toddler is very mobile therefore is into everything and zooming around the place like Billy Zoom!
From poking their tiny fingers up the dogs nose to trying to get behind the telly to play with the wires......I understand where the saying 'eyes in the back of your head' came from!

So yep its agreed, toddlers are hard work! Having a toddler with additional needs is extra hard work!

I won't lie to you my friends but daily life with toddler DS was tough with a capital 'T'. I had all the usual toddler stuff as mentioned but I also had behaviours that I was unable to identify. This was pre-diagnosis. His 'odd' behaviour was a bit baffling to me. I quickly learnt that things like hoovering, mowing the lawn or putting the food processor on caused DS to cry, scream hysterically and attempt to trash the house!
The tantrums he would have when we walked into a busy supermarket were unbearable, they would be that bad that I thought he was going to burst out of the straps of his pushchair!

Of course, I can now easily identify the reasons for these things but at the time when I knew nothing of autism or sensory overloads I thought that DS was 'playing up' for me.
I don't think I will ever forgive myself for thinking this of him and mostly for not understanding him during this short time.

My confidence as a parent was seriously dented - I must not be doing a good enough job if my child is constantly throwing tantrums, I became more isolated in the house, I could go on and one seemed to understand or have experienced any of this with their children.

The day DS was diagnosed, Daddy and I walked out of the paediatrician's office and we made a pact together there and then, that priority number 1 would be to ensure that DS would be happy. He would receive encouragement to do a task or activity but no pressure. Happiness would be the key and together we agreed that we would do whatever it took to ensure that.
Three years on from that day I think Daddy and I have successfully kept a smile on our little boy's face as people always comment to us how happy he is.

So on the back of this I have volunteered with my local Carers Centre for a pilot scheme called 'Circle of Friends'.
Circle of Friends sounds fantastic, carers are identified that may need some support so maybe their confidence has taken a little bit of a knock, they have become isolated at home, maybe lack friend or family emotional support. They are buddied up with a volunteer who have some things in common to take them out for a coffee, lunch, accompany them to appointments or support groups etc. My only request was to be buddied up with a carer of autism as obviously I have the most experience and knowledge on this. I expect that I will be able to identify with most of her/his emotions as I would of experienced them myself firsthand, therefore I'm hoping that I will be a good support even if that they have to tell me to shut up and stop talking every so often! *P.S ooops...Im such a chatterbox*
*p.p.s..Im sure you hadn't already noticed that, had you? ;)*

I'm just waiting to hear the date for my induction for this but if I can help another struggling parent just like me then I imagine that job satisfaction does not come much better than that xx

Friday, 6 September 2013

Normal Routine Resumed....

Look at these smiling happy faces

Have you guessed it yet?
Yes that's right, we are both Mums and smiling as our kids have gone back to school! *only kidding!......kind of*

DS is very typically autism, he doesn't like change and can struggle to adapt to it so after getting use to being off school for 7 weeks I was very thoughtful about how I was going to approach the fact that the school holidays were coming to the end.

Knowing that DS was not just only going to return to school, he was going to return to a new classroom including a brand new teacher and some children in his class he probably didn't really know so this was huuggeee! Therefore it was really important that I prepared him, kept his anxiety as low level as I could and most of all I had to get this right for his sake! *pressure! pressure!*

I think its very fair to say that I know DS better than anyone including any professional in the land! I've always trusted what I call my 'motherly gut instinct' with him and have spoken up and disagreed with professionals if I've thought what they were proposing wasn't right for him. So many parents feel they can't or shouldn't do that with someone who is a 'expert' in a particular field but I feel that as you are the parent you are your child's 'expert' in them! You spend 24/7 with them, you play with them, you communicate with him (verbal or not) you know them inside out, you are their voice and the best advocate they will ever have so if you don't agree with something relating to them then its your job to speak up and say what you think is best for them as all children are different and what may be right for one will not necessarily be right for another but hey that's another post altogether!

So yes as I know DS extremely well shall we say! I knew that its best not to start talking about school too soon, maybe a day or two before would be good.

I did attempt to get a picture of his new classroom and teacher but that didn't quite come off *shucks* so instead I very casually and happily mentioned that it was time for school in two more sleeps, DS took this in and concentrated on processing this information.
The next day I mentioned it again in the morning, gave him some time to process it and in the afternoon I started talking about school in more detail. I talked about what to expect, his teacher's name etc - it all seem to be going well.

The night before school, I reminded him again that in the morning was school. I then laid out his uniform for him to see as a more visual sign.

The next morning I got him dressed for school which he let me *hurdle No 1* and happily jumped into his school transport *hurdle No2* and went off which was fab! My prep for him seemed to be spot on! *punches the air with glee*

To be honest I expected a meltdown from him that evening and not any normal run of the mill meltdown, I expected a major house shaking meltdown where the cat runs for her life (I would sometimes go with her if I could!) because he would have endured so much change in one big whammy and possibly too much of a overload for him but to my surprise no. There was no meltdown at all just a very tired little boy.

Thursday, 22 August 2013

My own little Holland....

Remember me telling you just before the Summer holidays how my Mum has been encouraging me to take some time out for a few days? and I relented and booked Spain?
Well, now I know that DS was fine and after having a taste of relaxation I also went to Amsterdam earlier this week too!
It was lovely, I wandered around the streets, sat chilling by the canals, sat in cosy little street cafes just watching the world go by, it was so lovely especially with the good weather we had there too!

I just couldn't leave Holland without visiting the Anne Frank Huis although it was very very sad.

It brought home to me how very lucky we are today, I can't imagine what the Frank family went through, the fear they lived in, their lives in the horrendous death camps and Otto Frank surviving Auschwitz to come home to learn that all his family were all dead. Its a very sobering story and one you can't help but feel its presence walking around the secret annexe.

Being in Holland makes me think of the beautiful poem that was written by a parent when she was asked to describe what it was like to be a parent to a child with additional needs.
The first time I read this I was sobbing before I got the end..

Its beautiful and describes it perfectly!
A few years ago, I was on a Hanen course with several other groups of parents. Their children were on the pathway to be diagnosed with ASC, I was the only parent who child had already received their diagnosis and I took this poem in and read it out.
I also handed each a copy to keep for the 'challenging' days to read as I think its very inspirational.

So yes I loved my visit to Amsterdam but much much more so I loved coming back home to my very own little 'Holland' xx

Friday, 16 August 2013

Fun, Fun, a few meltdowns, a unexpected call of Nature and more fun....

We're over half way of the Summer break and things have been going okay with a few bumpy periods.
DS is coping with it all well although we have had some meltdowns and a few wobbles but all to expected.

Although I'm purposely avoiding taking him to crowded and noisy places we have still managed to get about and do a fair bit.
Our recent adventure was a trip to London!

The reason behind this trip was to visit the British Science Museum in Kensington to see...........washing machines!
Oh yes! This little Aladdin's cave had several of these beauties displaying the first models of the front loader - DS was very impressed!
On the way out DS started pulling at Daddy's arm, we couldn't work out what he wanted then we spotted it! DS has noticed a washing machine hanging from the ceiling and wanted lifting up to it! *the boy does not miss anything*
We then moved on to the water play bit...*which he also bent down and had a drink from the water*

As you can imagine, the museum was heaving with people so we made our way out. We decided to head to the Thames and find a quiet spot to sit and have a ice cream
DS was doing really well but I could see that he at the point where he wouldn't be able to take much more so we started to make our way back to the room. We had almost made it when DS had a major meltdown in Euston tube station!
I would imagine that we got many stares but I wouldn't know as all my attention is on him and trying to calm him down. We eventually made it back to the room which is DS fave part of going away anywhere.

Other things we have been up to are:
Country Walks....well running and Mummy chasing DS!

Hide and Seek:
Fun Days:
Train Rides:
The Fun Day one is a bit of a sore point. At this particular fun day there was a giant inflatable football arena which the children are strapped into. This means when playing football each child can only move so far before being sprung back into their place by a huge elastic band tied around their waist. DS was desperately trying to get into this inflatable which I was stopping him as the game was in full play. DS being the wriggly worm that he is, got free from my grip ran towards the football game, jumped over, pulled down his shorts and had a very long wee in the middle of the game! The children were all shouting "ewww" *very red faced*
I wanted to shout "whos is this little boy"? and then escape back to the car as I saw the children evacuate from the inflatable and the thing being er.....deflated. Instead I took him hand and we left *sad face*
I think we are going to keep a very low profile at the next few fun days!

A lot of things are trial and error with DS, he is my main teacher.
I take my cues from him, some are very subtle, invisible to the 'untrained' eye but I can always spot them and he knows this, he know that Mummy can never miss any of his cues that he gives off.
I'm learning from DS all the time, I have never been given a 'instruction manual' for him as children with autism are all different and unique so I would imagine it would be very difficult to write one anyway.

I think its fair to say that I'm knowledgeable about autism and I'm a expert in DS but that doesn't to say I know everything. Someone once told me:

 "You'll be learning from your child for the rest of your life, you will never get to a point where you know absolutely everything and cannot be taught anything new. It's impossible"

I agree with this.
Raising a child with autism is a journey that I did not plan or forsee when I was planning on starting a family but it is one that I've completely accepted, embraced and will always give my absolute all to.

Saturday, 10 August 2013

Fishy Business....

Following on from my last post about DS eating more of a varied diet, I decided (at risk of pushing it too far with him) that I would go a step further and try him with McDonald's Fish Fingers!

Now back in the day when DS ate more than a bit of mid-morning sand and grass snack he would quite happily chomp on these delightful little trio *Mummy thinks happy omega 3 thoughts*

I remember my boyfriend and I taking DS to Disneyland for his 4th birthday and DS refusing to eat a single thing there, he just drank fresh orange juice, I was worried sick he was going to starve as we were there for 5 days!
My boyfriend went off to do a bit of investigating and came back to happily inform me that he had spotted a McDonalds not far from our hotel *yay!* so off we all trotted very excited that DS was going to eat something that I know he would like as this was day 2 of fasting.

I should of known that it was too good to be true, this particular McDonalds served everything but fish fingers, I think I sat and sobbed whilst other diners stared on at me and my boyfiend trying to console me. To be honest how he didn't run a mile from me at that moment  never to contact me again I really don't know *as I blow my nose on his tee-shirt and dry my wet face looking up at him asking is there really no fish fingers here??*

So back at the hotel my boyfriend sat me down with a large wine whilst we thought of a plan! The best one we could come up with was chocolate brownie! Yes we could buy them everywhere, DS liked them so he lived on chocolate brownies for 4 days! *sighs of relief.......well sort of*

Anyway back to what I was saying, yesterday I swung my car through our local drive-thru, ordered fish finger happy meal, popped it next to DS not uttering a word and drove home watching him closely.
DS peered into the box, took out a fish finger, examined it closely, licked it, had a little think then took a bite! I was ecstatic! I was grinning ear to ear and even punched the air *strange looks from people in car next to me whilst queuing at traffic lights*

Im so pleased that DS is eating another food!

Who needs to win the lottery when your child eats fish fingers...........

Friday, 2 August 2013

Food, Glorious Food....or is it?

Many child with autism have what is referred to as sensory integration difficulties.

DS is one of these children.

This is when someone has difficulty in processing sensory information such as sound, noise etc. DS's biggest sensory issue is noise which I often talk about - its is a huge for one for him but he also has others with taste being a close second.

DS has a very limited diet as he can only tolerate around 5 different foods so he practically eats the same thing every day, day in and day out. He is very happy with this whilst Mummy is researching if this is enough for him to gain all his essential vitamins and to keep healthy *slightly worried face whilst frantically searching on laptop*

Trying to encourage him to try something new, he simply pushes it away clearly demonstrating his desire not to do so.

Some children with autism will only eat a certain colour food and will not eating anything any other colour or they can not tolerate their food touching on the plate, everything has to be separate.

DS is typically autism when it comes to this, his 5 foods have to be the same brand, if I was to try him with a different brand he would know instantly and refuse to eat!

Naturally, I've been really worried in the past that DS was losing out on lots of vitamins due to his very limited diet and I have taken him kicking and screaming to see nurses, doctors and dieticians who have reassured me that as he looks healthy, has lots of energy (oh lots and lots by the way!) and is the right weight for his height and age then there is no cause for concern.

So I decided to start chilling out about this a bit, keeping a eye on things but chilling out as DS picks up on my anxieties so I NEED to relax about this before I cause any further problems.

I've been doing well, even seeing DS scoffing sand and seaweed on the beach *immediately gets on laptop again researching the vitamin content of sand and seaweed with some hope* I remained calm and relaxed.

The National Autistic Society says:
Chemical receptors in the tongue tell us about different tastes - sweet, sour, spicy and so on. People with an ASD may experience the following differences.


  • Likes very spicy foods.
  • Eats everything - soil, grass, Play-dough. This is known as pica.


  • Finds some flavours and foods too strong and overpowering because of very sensitive taste buds. Has a restricted diet.
  • Certain textures cause discomfort; some children will only eat smooth foods like mashed potatoes or ice-cream.

About 12 months ago, DS dropped the only two meals he would eat. I was gutted so he lived on snacks, toast and cereal. From time to time I would try him again with these meals but no joy.

However, recently when cooking he would take a interest. He would wander into the kitchen and nosey into the pan to see what it was. I got the feeling he was looking for the 'dropped' meals so that very day, I bought the ingredients and made large batches of these to try him with them again.

I was right!
DS hardly let me dish the food up before pulling on the bowl! He ate 3 bowls of chicken curry before stopping and has been eating it every day!

I'm so glad that these foods are back in his diet *sigh of relief and happy face* and he is getting some more nutrition.

I always remember a staff nurse telling me about his grandson who has autism, he would only eat cake and nothing else! If it wasn't a cake then he didn't want to know. Again, he was healthy, well and had lots of energy.

I've always wondered if a person with autism absorbs the vitamins and minerals from food differently then a typical person as especially in DS's case just a few foods benefit him much more then it would say me........hmmmmm........*frantically gets on laptop to find out more about this*.......

Have a good weekend!

Monday, 29 July 2013

Something had to give....

A few weeks back I made a very important decision that I had been considering for a long time.

I decided to apply for a career break from my job.

Since the back end of last year, my caring role has become pretty intense.

DS is becoming increasingly challenging, major meltdowns were becoming much more frequent and to me his behaviour was coming close to danger point. Something had to give.

My working hours fit around the school day so after seeing him off to school I would drive to work and as soon as finished my shift DS would arrive home so it would be a case of work finished and straight into DS with no respite in between and I was struggling.

As a result of this building up, everything else seem to suffer - friendships, relationships to name a few but as us Mums do, we limp on and try to hold everything together the best we can.

I knew that I needed to work on DS behaviour by implementing strategies to encourage positive behaviour, I know this takes times and lots of energy and effort and I know I need support to help me to achieve this.

I also knew that deep down, work would have to go on the back burner for a while.

So eventually I applied for and was granted a 12 month career break whilst I took the rest of my holidays and I have to say that some behaviours DS was displaying have now disappeared! I see him to school and by the time he comes home I'm ready to tackle anything he throws at me!

I feel much more in control and I'm putting all that I have into working with him, it will be a long road but one I'm ready for. We will get there no matter how long it takes but I need to do this without any other distractions.

I've looked into a desensitization programme and am in the process of trying to get us booked on one as this would resolve a lot of his challenging behaviour. The programme would work on noises that DS is very sensitive to resulting in him lashing out. Its a 12 month programme and very expensive if paid privately, although some children's charities will subsidise this cost.

Since finishing work, I'm definitely less stressed which he seems to be picking up on as happy Mums means happy kids and that's exactly what I want the little superstar to be!

It goes without saying that DS is and will always be my absolute number one priority, his happiness and wellbeing means everything to me and I'm prepared to sacrifice practically anything for him so if that's means not having as much spare cash around then so be it because some things are much more important to me than financial gain.

Saturday, 27 July 2013

Schools Out....

Its come around again and this one is the biggy!

Oh yes its the School Summer Holiday! *eeek!*
And at 3.10pm, when you see this very sight... know that the holidays have begun!.....*gulp*

We find school holidays tough!
DS is out of his normal routine so he can get often get anxious causing bouts of him being angry, frustrated and upset.
Due to DS sensory issues, we are very limited as to where we can go during the holidays as places such as the Zoo, theme parks, beach etc gets very busy during these weeks so taking him anywhere is bound to cause sensory overload. Crowds and all the noise are just to much for DS to process and tolerate so this creates a massive meltdown, its tough for the little guy.

However, I had planned a few days in Spain with him. The part of Spain we were going is very quiet, away from the hustle and bustle of the tourist areas, a bit out in the sticks really with pretty much our own pool.

DS loved it! He dealt with the flight very well as he always does and enjoyed hearing his splashes in the pool as the only sound - he even said a new word "pool"! (if that doesn't deserve a new toy washing machine then there is no justice in this world!!)

The holiday in the sun was a huge success!

Then on day 2, something amazingly special happened!

Out of nowehere, DS put his face in the water and lifted it out again. I handed him a towel to dry his face which he did, then put his face in the water again, repeating this pattern.

Then on day 3, he was swimming under water! Chuffed to bits with his little self isn't the words! He did it all day which is great for him but scary for me! I was forever scooping him up out of the water because I felt he had been under for too long!
His behaviour was much better than anticpated although we did have several wobbly moments but overall a very good break.

This week Ive got our very first real camping trip planned so as usual, I will start preparing him for it a few days before showing pictures of camping and telling camping stories so he knows what to expect.

Only 6 more weeks to go! Ha!

Have a good weekend!

Sunday, 21 July 2013

Saturday night at the movies....

In 2011 a genius idea was piloted.

It was identified that although people with autism enjoyed going to the cinema, there tend to be some sensory issues that they experienced that probably does not fit in with the usual cinema rules. Several examples of this is that some people with autism find it hard to sit down for the length of a film and would need to stand up to walk around for a while before returning to their seat or squeal/scream and flap with excitement. I've known many times of parents and carers leaving as little as 15 minuites into the film due to tuts and general noises of dispproval from fellow cinema goers *sigh with sad face*
This sort of behaviour tends not to bode well with the majority of neuro-typical people in the cinema so on the back of this, Autism Friendly Screenings were born! Hooray!

Dimensions are the genius's behind this and currently 150 cinemas across the country participate in autism friendly screenings. *I salute them*

So the difference with the autism friendly are:

*the lights are on low
*the volume is turned down (great for noise sensitive people like DS)
*there are no trailers so we go straight onto the film - yay!
*We can take our own food and drink

and the beauty one is:

*you can move around as freely as you like!  - this is a important one for DS as he thoroughly enjoys the cinema experience , he cannot sit in the same seat for the duration of a film. After a while he will get up, walk around then sit on the floor of the aisle with his drink watching the film.

The autism friendlys are shown once a month - always a Sunday and the next one is today!

I'm packing our rucksack with spare clothes, drinks and snacks as we speak!

P.S I have signed up to Dimensions alerts so I always get a email reminding me of the next autism friendly screening at my local cinema, as lets face it - autism Mums have enough going on in our heads to remember absolutely everything!

Enjoy the rest of your weekend!

Wednesday, 10 July 2013

A Lovely after school surprise....

I would imagine that if you asked a neuro-typical child what is their favourite place, I would expect the answer to be something along the lines of Disneyworld, Lapland or Willy Wonka's Chocolate Factory (okay, okay that last one is my answer!).
If you asked DS that very same question, his answer would be a laundrette!

I had some dry cleaning to drop off at my local laundrette and as always I take DS with me because he loves the place so much.

Whenever there is laundrette scene on Eastenders, DS immediately stops what he is doing and stares at the TV - I don't think he even blinks!
Dot Branning is a icon in our house! I can just imagine a few years from now, whilst boys his age are putting girl bands posters on their bedroom walls, DS will be putting one up of Dot putting on a service wash!

Anyway after collecting DS from school we went straight to the laundrette. He was all excited when I told him where we were going.
We pulled up and in a flash DS had released his seat belt (I hated it when he recently discovered how to do this and more worryingly how pleased he looked about it) and was running into the laundrette.

The owners know us erm..pretty well now and are brilliant with DS.
He danced and jumped whilst looking into all the machines
He even his own little way
They say he is their future Saturday boy and what a fine looking Saturday boy he will be too!

This wouldn't look too bad on a bedroom wall...............would it??