Therapies and interventions.

I apologise in advance for the super-long blog post. My brain is like a tornado lately, sucking up any information related to autism and constantly spinning it around in my head. I need to write some of it down before I burst.

I've just finished reading a book called George and Sam, by Charlotte Moore. I read an article written by her in the Guardian a few months ago which touched me, and recently a friend recommended her book. It's affected me more than I thought it would- in a good way really. Charlotte has three sons, the eldest two-George and Sam- are severely autistic. I've read many,many books, blogs and articles that talk about the joy of autistic children, their amazing qualities, or their miraculous 'recoveries.' But what about the parents? What is day-to-day life like for them? Charlotte's book tells you. She doesn't soften it up, make it seem rosy. She's open and honest, which is what I like. According to the National Autistic Society, only 5-10% of children with autism will go on to live independent lives as adults. That's shockingly low.
River is only just two, so he may start talking next week, next year, when he's four. He may make fantastic progress in pre-school in September, go on to a mainstream school and be high-functioning. BUT- I can't pin my hopes on that. There's nothing to suggest he won't be high-functioning, but there's also nothing to suggest he won't be low-functioning. If I pin my hopes on him being very able and 'mild' then what will happen if he doesn't learn to speak, can't ever look after himself, needs 24/7 supervision for the rest of his life? I'd then be faced with that realisation a few years down the line, and will be heartbroken all over again.
So I think it's important to read about children who are severely autistic to prepare myself. There may be some people reading this thinking, "River isn't severely autistic. He looks so switched on & alert."

Charlotte's son George knew over 40 words by the age of 15 months, he'd clap, he'd wave. By 16 months, when Charlotte paused during a story, George could fill in the word. This was the same for over FIFTY books.By his second birthday, he knew the whole alphabet and could form a few words with fridge magnet letters.
Charlotte's son Sam, at 20 months: had very good speech, loved books, liked cuddly toys, loved to dance, fed himself with a spoon, could take his own t-shirt off, liked meeting other children, could point, knew some letters.
Yet they are both profoundly autistic.

Charlotte has tried many different therapies, as most ASD parents do. There are two, however, that she thinks had the biggest effect on her boys. These are ABA therapy, and the GFCF (gluten-free casein-free) diet.

GFCF diet.
I first heard about this diet ages ago, and to be honest I thought it was a load of rubbish. How could changing some things from River's diet change a neurological condition? Isn't it a bit daft to cut out two major  food groups, when ASD kids are notoriously fussy eaters as it is? Is it just clutching at straws? There is some  good information here and also here. I asked our paediatrician about it who said that unless River has bowel issues it's not worth doing. So I dismissed it.
However, two things have since changed my mind. Firstly, the more Tim & I thought about it, the more we've realised that perhaps River does have bowel issues- he often gets mildly constipated, which I didn't think was a big issue- but he eats so much fruit, and I think if he didn't eat all the fruit he'd be a lot worse.
Secondly, I have a friend with a little girl a few months older than River, who is currently awaiting diagnosis. She's non-verbal, and has no bowel issues at all. My friend decided to try her on the GFCF diet, mainly because there wasn't a reason not too. A week later, she said her first word. Within a month, she had 4 or 5 words, lots of lovely interaction, eye contact. Maybe it was a coincidence and it would've happened without the diet- just as River's pointing did. Or maybe, it was the diet.
So what do we have to lose? Yes it costs more, but we're not talking thousands. It's a lot of time & effort, but if it helps, why not try it? Just for a few months? If we didn't try it, we'd always wonder, "What if?"
Casein is a milk protein, which means no milk, butter, cheese, chocolate, or anything containing them. That includes some (but not all): mayonnaise, crisps, sausages, breaded chicken, ham, biscuits, cake.
Gluten is a protein found in wheat, oats, barley & rye. So that means no pasta, (he didn't eat that anyway) bread, cereal, breadsticks, ryvita, crackers, cake, biscuits, sausages, anything containing flour.

ABA therapy.
It's funny that two interventions that I thought were daft are now the two I'm interested in. ABA therapy has been successfully used with autistic children a lot, especially in America. I read about it and watched clips on youtube, and took an instant dislike to it for a couple of reasons.
1. It's suggested that it's done for 30-40 hours a week. That's like a full-time job. For a TODDLER. That struck me as wrong. Children twice his age are only just beginning to do 25-30 hours at school. I didn't want to impose such intensive work on him so young.
2. So I watched the videos on youtube and quickly realised that the toddler/child was always sat at a toddler table facing the ABA tutor. I read up about it, and it seems it's the norm. This made me LOL. River, sit at a little table? Actually sit, on a seat? For more than 2 seconds? Good luck with that.
3. I've heard several people- including it's fans- liken it to dog training. It's all about short, bitesize instructions and big rewards for every completed task. River isn't a dog, he's a beautiful little person.
So why have I changed my mind?
1. Charlotte Moore's book (told you it had a big impact.) Some things she says about it: "If- Heaven forbid- I should find myself with an autistic two-year-old all over again, I would embark on an intensive ABA programme in place of nursery school. I do believe it to be the best way of maximising the autistic child's capacity for learning." "Speaking entirely from my own experience, if I had my time with the boys again, I would put them on the GFCF diet, and start an ABA programme as early as possible."
2. I came across this ABA-based website, and watched these. I don't think ABA is as strict as I'd imagined.
3. The whole dog training thing- River responds best to one or two word sentences- like "River, eat? Eat? Good boy!" Many people would say this is talking to him like a dog- but that's just the way he learns. As they say, if they can learn the way you teach, then teach the way they learn.

So the biggest issue of all: Money. My word, it's expensive. In America, ABA therapy is so common for autistic children that it's covered by insurance. Unfortunately, there is no free or cheap ABA available. It costs at least £10,000 a year to run an ABA programme for your child. Most ABA tutors earn £8 an hour, the team leaders £10-£15 an hour and supervisors £15-£25 an hour. According to PEACH (Parents for the Early intervention of Autism in CHildren): "Currently, more than 100 Local Authorities in England & Wales are funding ABA programmes. Many have not chosen to fund the programmes, but do so because parents have fought successfully for ABA at Special Educational Needs Tribunal."
So there are two ways to ease the cost of ABA. The first is to apply to the Local Authority, and more than likely ended up going to tribunal. The second is to appeal to kind relatives, friends, the local community, maybe psychology students, to be tutors. He would need maybe three or four, who would need to commit to  a couple of mornings/afternoons a week, every week, for months. PEACH (who are the leading provider of ABA) offer mainly workshops & training events for parents & their volunteer tutors to go to, plus there are the supervisors who would teach us and them.

But it's a massive deal. It would involve interviewing people, letting them into our home, allowing them to build up a rapport with our precious boy. And it would be 5 or more days a week! Constantly preparing teaching materials, reading session reviews.

So is it even the right thing to do? Is it making a big deal that's actually unnecessary? Why not stick with what the NHS offer? Well, the therapists we've seen are great, but it's hardly frequent. We haven't seen the speech therapist for 3 months, the occupational therapist has met River twice and worked with me 2 or 3 more times in about 4 months. Portage (educational play therapy) will be for an hour a week starting September. Doesn't really compare to the 30 hours a week intensive ABA does it?

Maybe I'm clutching at straws. I read this the other day, and wondered if I have the same desperation. But River is so young, these early years are so important, and these decisions have to be made.

Success!

So quite a few of my recent blog posts have been quite negative (understandably I think) so I thought it was about time I wrote something positive!

It's very easy to get caught up in River's problem areas, the things he can't do, the areas he's delayed in and the worries that he may never learn to do these things. But when you take a step back and look at where he was 6 months ago, it suddenly becomes apparent that he is making lots of progress-just usually very subtly. And occasionally, he will hit a milestone that is very significant-and that progress is very obvious. It's a fabulous feeling! So I'm going to list a few of his successes that seemed so out of reach just a few months ago.

• Books. River spent a long time chewing, throwing or spinning books whilst all his peers were enjoying stories. He has so many lovely books, and there was a time when I wondered if he'd ever look at them. But now, he's really into books. He doesn't have enough receptive language skills for a story, but he likes turning the pages and looking up at me to tell him what the pictures are.

• Eye contact. River has always been pretty good with eye contact, but it was fleeting and was never because he was interested in my reactions or my words. Yet now, River will look at a book or see something on the TV and stare at me expectantly, wanting me to tell him what the word is that matches what he's seeing.

• Sharing interests. A few months ago, my friends would come round with children the same age as River and the children would be constantly bringing me toys as if to say, "What's this?" or "Show me how to play with this toy" or "Look what I've got!" They had this inbuilt desire to learn, communicate & socialise. River never did this. It was one of the first signs of autism- he never brought me anything, never wanted to share his interests with me. Now, he'll bring me things. Not to show me yet, but because he wants to learn. He'll bring me a yellow ball then stare at me until I say, "Yellow." Then give me a different coloured ball & do the same. He brings me books and points things out, then looks at me until I tell him what it is. He has that desire to want to learn. That's massive.

• Kisses. Every bedtime River insists on Tim taking him to bed, which is very sweet. However, he always kisses me goodnight 3 or 4 times first. I say, "Mummy kiss?" And he looks at me then kisses me on the lips. This is the only time he ever kisses me, so it's very very special.

• Dragging me around the house. Now to most people, this would probably be quite irritating. A toddler constantly taking your hand and dragging you to whatever they want. All the time. Usually to the highchair or snacks cupboard. But for us, this is amazing. A few months ago, he would stand still and scream. There was no way of knowing what he wanted. We knew this had to change, so when I knew he wanted to go in the ball pit, I'd pick him up and touch it with his hand before putting him in. After a couple of weeks, I'd stand a foot away from it, take him by the hand, and make him walk a couple of steps to it before touching it with his hand and putting him in. Another couple of weeks, and he would stand next to it, grab my hand and put our hands on it. This progressed until eventually he would find me in the kitchen, take my hand and lead me to the ball pit/highchair/front door. Finally, a way of letting us know what he wants! Massive achievement.

• Pointing. This is the biggest one of all. I've been desperate for him to learn to point. So when looking at books, I used to point to a picture and say what it was. After some time, River would move my finger onto the picture he was interested in. I'd then wait until he made eye contact before telling him what it was. Eventually, I took my hand away and he learnt to use his whole hand to select a picture. Once he learnt that this got results, I started moulding his hand into a point each time. Then, he would grab my hand (think he needed it as a prop) and I would hold his wrist as he pointed. He'd often point with his middle finger, so I'd mould it into a proper point & continue. We also used lots of musical books with buttons to practice pointing. Eventually, he got it! And he can now point to things in books with no prompting from me! Such a massive milestone. Here he is in action, pointing at shapes & colours and then making eye contact for me to tell him what it is Xx

I selected this post to be featured on my blog’s page at Autism Blogs.

Guilt.

Lately I've been feeling really guilty.
I feel like there are so many things I should be doing to help River at this most crucial time in his development, and yet I still haven't done them. It sounds like such a rubbish excuse, but it's so hard to find the time- River needs attention pretty much all the time, and when he's napping or asleep for the night there's the neverending housework, meals to cook, cake orders. I also need to put my feet up occasionally!
The things that I'm currently feeling guilty about:

1. Sensory table. River has a sand & water table in the garden. I need to clean it all out, assemble indoors and fill it with dry rice & dry pasta. This is so I can hide River's toys in it & he can plunge his hands in it to retrieve the toys. After he's comfortable with that, I can replace the rice & pasta with something like wotsits, that leave a residue on your hands but aren't too messy or sticky. We can then build up to playdoh, sand & eventually paint & gloop. This is because River is tactile defensive, so he has a real aversion to different textures including any food that isn't dry. But the sand & water table is still in the garden. I need to get on & do this!
2. Photo cards. I need to print photos of everyday objects- like his highchair, his favourite foods, his beaker, his shoes- & laminate them. I can then show him the corresponding photo card whenever I give him, for example, a drink. The idea is that he'll eventually learn to communicate his needs through exchanging the cards. I've found all the pictures, saved them on the laptop, bought a laminator...I just need to get on & print them!
3. Books. I was lent a great book called, "The Out of Sync Child Has Fun" by our Portage worker. It has lots of games & activities for children with sensory issues. I've only read a couple of chapters. I have another book called "Playing, Laughing & Learning with Children on the Autism Spectrum." I've read less than half of it. I recently bought a book all about the Son-Rise autism programme, which has a CD-Rom with it too. I haven't opened the book or watched the CD-Rom. I also bought two e-books last week all about sensory processing issues, haven't read them. I really need to read these books!
4. Websites. There are a couple of websites that friends have recommended, all about various techniques that may help ASD children. I haven't looked at them yet.
5. Toy storage/organisation. River has an open toy storage unit. It has lots of different compartments, but the toys & books are all on display. It means they're easy to access, but I think it's overwhelming for River. A big jumble of shapes, colours, details. No wonder he doesn't play with any of it. The has no purposeful play. Whereas if all his toys were in tubs or something closed & out of sight, he'd be able to relax more & play with one thing at a time in the correct way. But I still haven't decided what/how. Must do this soon!
6. Sensory retreat. I've been reading a lot about how children with ASD/sensory issues need a sensory retreat- somewhere they can easily go to when they need to block out the world, block out excess sensory stimulation etc. We've seen a blackout sensory tent that we like, but haven't bought it yet. River would benefit so much from one of these- he's constantly burying his head into my lap, into the corner of the sofa, trying to block everything out. But they're big, we don't have much room. We should just buy one though!
7. Proprioceptive/vestibular stuff. In order to regulate River and stop him constantly running up & down & crashing into the sofa, he needs to do things like swing in a hammock chair, bounce on a toddler trampoline, have a pillow cave to jump on. These things cost money & most importantly take up a lot of room. But really, River's development is loads more important so I need to just buy them!

So that's it really. Lots of things I should have done but haven't yet. It's not that I'm not doing things- we've taught River to lead us to things he wants, we do all the things to encourage speech, we use deep pressure touch, we research daily on loads of things. 

But it's never enough. Will it ever be enough? Maybe all mums in this position feel the same. Maybe I should give myself a break- or maybe I should give myself a kick up the bum and get on with all these things!!

We are NOT OK.

Yesterday, Tim & I expressed our sadness to some friends that many people close to us haven't been in touch about River's diagnosis. Quite a few friends have sent us virtual messages of support or virtual hugs, but there are many more who have kept very quiet. In fact, many people haven't been in touch at all since we began this emotional journey. 

One of our friends made a really valid point that I hadn't considered: I often write about the different techniques we use with River, the constant battling to get appointments, what happens at various appointments and lots of proactive, practical stuff. He said the blog gives the impression that we're focussed, driven, and generally sorted. Like we're coping just fine. He also said that people can feel awkward about these things, and not know what to say.

So maybe you're reading this blog because you're a friend or relative of ours. Or maybe you know the parents of an autistic child. Or maybe you're a teacher or therapist of an autistic child. Regardless, I just want to open up about a few things that perhaps I haven't expressed very well in my other posts.

1. We are NOT OK. Two days ago, we were told that our baby has a lifelong neurological condition. There is nothing OK about that. Yes, we understand we need to think positively. Yes, we're hopeful that River will be high-functioning, learn to talk, go to the village primary school- but nobody can tell us whether that'll happen. There is a fair chance that River may never speak, or speak very poorly. He may have to go to a special needs school. Right now, and probably for the next few years, we will be in limbo. We'll try to focus on each day, but ultimately we will worry every day what the future holds for us and our baby. It has only been 6 months since we initially realised something was wrong. We haven't got our heads round it, we are still grieving.

2. We feel lonely. We feel caught between two worlds. There seems to be an ever-widening gap between River & his peers, & it's scary. We're worried that our friends will ditch us as River isn't very good company for other children. Various professionals have recommended special needs groups to us, but we don't feel we fit in there either as River is very physically able & looks 'normal.' We've discovered a lovely autism group, but the children are much older than River. So therefore, we feel lonely.

3.We need a hug. I'm not talking physical affection, I mean a metaphorical hug. If people feel awkward & don't know what to say to us- it doesn't matter. "Thinking of you." "Sending you hugs." "Xxx" We don't need a big speech from people. We just need to know that you care and are here for us.

4. We feel guilty. So River has Autism. He's not sick. There's no threat to his health. There are so many people in a worse position than us. We have a beautiful child, a nice home, Tim has a job, we're all healthy. There are families out there without a roof over their heads, in hospital with a sick child, who can't afford to feed their children-what right do we have to feel so self-pitying just because River's autistic? This fills me with guilt.

The last two days have been spent either crying, fighting back tears, or pouring all our energy into research research research. It occured to me earlier- who knows? Who knows how devastated & crushed we are? Is it their fault for not asking how we are, or our fault for not reaching out & asking for help? I don't know. 

But there it is. We're not fine, we not doing an amazing job of coping, we're struggling. Struggling with our sadness & fear.

"It is definite that your son has autism."

It's ironic how you can be desperate for a doctor to finally say those words to you, and when they do, you want them to take it back immediately. You want to pretend they never said it, and go back to the way things were- desperately seeking a diagnosis to confirm what you already know in your heart, but still having a smidge of hope that maybe, just maybe, you're being overdramatic. Maybe he's just a bit delayed.
But it's too late. You've asked the question, and you got a pretty solid answer.
"Do you think he's likely to be on the autistic spectrum?"
"I'm pretty sure of it."
"How sure are you, because I'm 99.9% sure but I'm no expert, I'm just his mum."
"I'd say it is definite that your son has autism."

We fought hard to get this appointment with the paediatric autism specialist. She is the best, and I wanted her to meet River as early on as possible. However, the appointment was scheduled for 3 weeks before his 2nd birthday. "You won't get a diagnosis on the first appointment," people said. "Definitely not before two. That's far too young to diagnose." Online autism forums are full of stories of people battling for a diagnosis for years and not getting one, stories of children being observed at Child Development Centres for weeks. I had emailed some information to the specialist a couple of months ago, and she explained that as River is so young they might have to give him a provisional diagnosis and not formally diagnose him until he's older.

The specialist started off by asking us when we first had concerns for River. She then asked what other professionals were involved and what River's current development level is. Can he hold a crayon? No. Does he recognise photos of you? No. Does he understand the word 'bath?' No. Does he say any words? No. Will he stack blocks? No.
River spent the whole time eating, and we pointed out that if he wasn't eating then he wouldn't have coped with being in the room at all. He briefly looked at her, but not for long- and when she rolled a ball to him, he just cried. He also walked around the room a lot, often on tiptoes, in his own little bubble, occasionally breaking out into a big grin or chuckling to himself.
She asked about the pregnancy, birth, how well I bonded with him as a newborn, his overall health, checked his head circumference, and asked about his diet.

She then said that he'll need to have a blood test done on a separate date just to check that River doesn't have Fragile X or any other chromosome abnormalities, as there are some that are very rare but serious, and present themselves with symptoms like autism.

I think that was when I asked her opinion. She didn't mention a provisional diagnosis at all, so I don't think there is any doubt in her mind. I asked if she thought he was high-functioning, and she said that they can't assess where on the spectrum a child lies until they are school age but said he does seem severe in some aspects. She said not to focus on that for now, and that some children who seem severe make a lot of progress in a short space of time.
She asked how we were feeling & both Tim & I got a bit teary. She said that even though we were sure of River's autism, having it confirmed is still a shock and we should allow ourselves to grieve as we'll be following a different path to what we'd envisaged.

I don't know what else to say about it just now, but I read a fantastic poem in the Cerebra newsletter yesterday that I'd like to share.

The Journey


When I looked into your eyes
You didn't hold my gaze
I knew that you were different
In those early days


You didn't crave my cuddles
You wouldn't sleep at night
I knew deep down inside
That something wasn't right


You did not respond to me
When I called your name
I felt like a failure
And that I was to blame


I longed to hear your voice
But all you did was cry
I started to believe
There must be a reason why


When you got the diagnosis
I didn't know what to do
They told me you had Autism
And it would always be part of you


We started a new journey
It had only just begun
I was still your mother
And you were still my son


Although you couldn't say the words
I knew you understood
That I would do my best for you
As every mother should


The road ahead was twisty
With many a sharp bend to turn
The path ahead seemed daunting
With so much about you to learn


Although I wasn't certain
Of exactly what to do
I soon began to realise
I would have to fight for you


Our journey would continue
We would stay on this road together
I would be right by your side
Always and forever.


By Donna Woods

Welcome to Holland

Around Christmas-time last year, when our Autism journey first started, somebody recommended this poem to me. It is the perfect way of describing how it feels to raise a child with special needs. I still can't read it without feeling upset, but it's improving!!

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


c1987 by Emily Perl Kingsley. All rights reserved

Pre-School Entry Plan and our family holiday

On Monday we had a meeting with the pre-school that River will be starting in September. Present were the pre-school's SENco (Special Educational Needs Co-ordinator), the lovely educational psychologist, and the Area SENco. We were in a little side room, and immediately River got upset. I'd brought a couple of cake boards with me for him to spin, but he was really anxious and kept standing on me, climbing up me, pulling my hair, crying. So Tim took him outside to play on the grass.
We discussed what River main interests are, his passions, and then moved onto River's main issues are, what I think he's going to struggle with, and finally a list of actions to be put in place by September so that River can settle into pre-school as comfortably as possible.

It's funny, I often find that when people first meet River & I, they expect me to be a bit clueless (Tim thinks it's because I look very young, & maybe it's because I'm a first time mum, or maybe I just look ditzy!!) so I really like it when I start talking about River & people acknowledge that actually I know him very, very well & have put a lot of time & effort into knowing him, his strengths & his weaknesses and we've put a lot in place to help overcome his obstacles.
The main outcomes of the meeting are that River will have one-to-one support,  a really gradual settling-in period, the nursery will get some extra funding for him, he is to have a quiet area set aside with objects to spin, and it will be reviewed in October.

This week we've been off on our hols to Cornwall. We've been sooo looking forward to having a break, switching off and enjoying some quality family time. River doesn't handle change very well, however, so we put a lot of things in place to help the transition. For two days prior to the holiday, we set up the travel cot in his room for him to sleep in at naps & night time so he could get used to it. We packed his favourite toys, books, DVDs and CDs, blackout blind and his favourite foods and planned the two hour drive to coincide with his nap.

When we arrived at the chalet, he was a bit clingy but I stuck his Thomas DVD on & he was soon happy to explore his new surroundings with something familiar in the background. Thankfully River slept very well for naps and overnight throughout the holiday. We stuck to his usual timings and he coped brilliantly.

We planned a few activities but knew we'd have to be flexible. We went to Crealy Adventure Park- lots of farmyard animals. River wasn't remotely interested in any animals- I picked him up and put his face a few inches from a couple of massive horses at one point, and he was looking from side to side as if they were invisible- it might as well have been a brick wall. What he really loved was running after the park maintenance van! He also had great fun just walking along holding hands, as there was music being played throughout the park- and he loves music! Overall, it was much more successful than anticipated!

That afternoon, we went to the beach. It was absolutely beautiful & the water was calm and shallow. I was hoping that River would enjoying playing in the sand, but after a couple of steps he was trying to climb up me and crying, clearly not liking the feel of it on his feet. We were really excited about taking River paddling, but it didn't really go as planned. He let the water run over his feet a couple of times, looking rather confused, before crying and putting his arms up to be picked up. He clung on really tightly as we made our way back to the soft sand, and cried some more when I attempted to stand him on it. The only thing that would stop him crying was sitting on my lap eating slices of apple. Once the apple was gone, he continued to cry until we reached the car. Poor wee thing. It was a really sad moment for Tim & I, as there were several other babies & young children all playing in the sand etc & we desperately wanted River to enjoy it too, but it just caused him real sensory overload.
The next day, we went swimming in the indoor pool. We took one of River's rubber ducks that he likes to chew. I was a bit worried that he'd scream the whole time but he coped really well! There were only about 5 other people which helped, and we had the separate toddler pool to ourselves. I wouldn't say he enjoyed it though- he 'tolerated' it. He didn't smile at all or make a sound, just clung onto us, chewed his rubber duck & stared into space. Totally zoned out. Was a shame it wasn't enjoyable but great that he was distressed by it!
The next day, we went to Newquay aquarium. We went last year, when he was 10 months, and he was in awe- he's so visually stimulated & all the pretty colours and fish darting about captivated him at the time. We were sure he'd feel the same about it this year so were a bit gutted when he didn't want to look at any of it, and just cried and wanted to leave. Think we managed about 20mins in all- and it wasn't cheap!
The aquarium is right by the beach, so we decided to have another go with River. Since he obviously didn't like the feeling of sand or sea on his feet, we decided to keep his shoes and socks on. He much preferred this! He was happy to hold my hand and walk across the beach. He then took an interest in the water and was even happy to paddle (with his shoes on!!) His shoes & socks obviously got soaked, but it meant that he got to experience the sea, and the feeling of having wet feet was more acceptable to him as his feet weren't in direct contact with the water. Fab!!

Something that we found quite draining was the repetitive noises that River was making. Whenever his Thomas DVD was on he would run up and down the room constantly, making this loud, deep, gutteral noise. Over, and over, and over again. I think it must have been linked to feeling anxious in a new environment though as he hasn't been doing it as much since we got home.

I have been trying to pick out River's favourite part of the holiday- trying to think of something 'normal'- and I honestly think his favourite part was chasing the maintenance van in the adventure park.

So overall, it was really lovely to have a break away, lovely to unwind a bit. BUT- everything is so much harder when you have a toddler with ASD. They just aren't interested in things other toddlers are. Things that you assume are universally enjoyed by kids- like the beach- can be a source of real distress. You can't plan 'nice activities'- as what is normally viewed as 'nice' isn't interesting. It is HARD WORK.