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!