Thursday, 20 December 2012

Autism: One Year On.

So today marks exactly one year since I first realised River was autistic and I wrote this journal entry:

Last Christmas was a very difficult time for us. I remember on Christmas Eve, Tim went out to midnight mass and I stayed home & watched the Westminster Abbey service. There were these angelic choir boys singing Christmas carols, & I just thought, "will River ever be able to stand amongst other people and sing? Will he ever be in a Nativity?" & it just tipped me over the edge. I just sobbed and sobbed, loudly, as if someone had died. I guess it felt like my hopes and dreams were dying to some extent.
Christmas Day was overshadowed by those feelings of despair. Tim & I sat down to a lovely Christmas Dinner whilst River napped, and I sobbed all the way through it.

But somehow, it gets easier. You learn to take one day at a time, because you have to. You can't keep fearing for the future or thinking what "could have been" if River wasn't autistic, because it would mean you miss out on precious moments. There are so many things about River that make my heart melt. Every time something on the TV scares him and he comes running to me for a cuddle, I could just cry. 6 months ago he wouldn't cuddle us for comfort, so we treasure every single one. I discovered the other day that River had scribbled on the kitchen walls with a crayon- and I was so proud! Two months ago, he couldn't hold a crayon. Now, his obsession is colouring. He gets through 10-20 sheets of paper each day (both sides) and I just want to keep them all!

That despair isn't completely gone. It still punches me in the face when we're having a bad day and I think, "Is this what our future looks like?" And it chokes me.
The other day, River's preschool workers needed to chat to me for 5 minutes when I picked him up so we went into a little side room. We took some paper & pencils for River, but after a minute or so he was dragging my hand to the door. By the time we left, he was hysterical. As far as River is concerned, when I turn up at nursery I put his coat on, get his bag & take him home. The change in routine for a few minutes was too much for him to handle. I managed to get him outside & he dropped to the floor crying, refusing to move. All attempts to get him to walk were futile. In the end, I had to carry him all the way home whilst he kicked and screamed, then eventually just sobbed into my neck.
Carrying him that far was really hard work, but just about possible. But what happens in a years' time? Or in five years? Or when he's fifteen?
Most parents will say their toddler has had a tantrum whilst out and refused to walk. The difference is: there is usually a logical reason why, you can usually say something that they understand to encourage them to walk, and most importantly- you know it won't last forever. Nobody can guarantee that for us.

River is getting worse around children too. I don't know how he is in nursery- I gather he's ok- but if we go somewhere unfamiliar, or if we have people round, he always wants to hurt the children. With babies, he can't stand their squeals and general baby noises so tries to grab & pull at their faces. With older children, he can't stand it if they make a noise or run past him- he wants to grab them and hurt them. Will this change?

We've now reached an acceptance that we just can't know the answers- nobody does. All we can do is put all our efforts into helping him reach specific goals and hope for the best. He has surprised us a lot over this past year, and that's what we have to focus on.

So this Christmas will be different. We'll be hoping that maybe next year River will be saying to us, "Merry Christmas!!" We will be celebrating how far River has come, and how far we have come as both parents and people. And we'll be thankful that we've been blessed with such a unique, special child when there are many people who struggle to have any. 

Friday, 7 December 2012

Leaps and bounds.

The past two or three weeks have been really lovely. River is making sooo much progress just lately, and it gives us so much hope. We've spent a long time thinking that River is really behind his peers in every skills area, but it turns out he's actually been absorbing so much information that he knows a lot more than we realised!
Here are a few good things from the last couple of weeks:
  • He knows his colours! River has always been very interested in colours, & will often pick up two or three objects that are the same but different colours (like two balls, two pieces of lego, or two building blocks) & put them in your hand & look at you to find out the name of the colour. Over & over again! So I find myself saying, "Red ball. Green ball. Red ball. Blue ball. Green ball" for ages. But he never conveyed that he understood which colour was which. Then recently, he was pointing at different coloured cars in a book for me to label the colour when I switched it round and asked him, "River- where's the blue car?" And he pointed to the blue car. Tim & I thought it was just a fluke. "Where's the red car?" He got it right again. He correctly pointed to blue, red, yellow, orange, pink, purple, white, green & black in turn, twice. We were gobsmacked! There are lots of children his age who don't know their colours, so the thought of River being ahead of some of his peers is amazing!! It just goes to show that just because they don't appear to understand your language, they're taking it all in and absorbing so much.
  • He knows shapes! He's always loved pointing at different shapes for me to label, but again I didn't realise he was taking it in as he would never point to something when requested. I only actually discovered that he knows shapes yesterday, when he got hold of one of Tim's Playstation controllers. He managed to correctly identify the circle, square, triangle and cross when asked!
  • He knows lots of animals! River's never paid much attention to animals. But lately, whenever an animal comes on the TV he looks at me & wants to know what it is. We were looking at a book about animals & he pointed at loads of animals when I asked him to.
  • He understands that similar objects can mean the same thing. It's a bit difficult to explain. With some autistic children, you could show them a photo of a labrador & teach them that it was a dog. But if you showed them a picture of a jack russell, they wouldn't know it was a dog. As far as they're concerned, unless it's exactly the same as the dog in the photograph, it's not a dog. River thankfully doesn't have this. If he saw any photograph of a dog, or drawing, or toy- he knows it's a dog. This is a relief!
  • He scribbles! River has always refused to use crayons, pencils, pens etc. If you tried to show him how to scribble, he would just flick them across the floor or spin them. But something has clicked- I think preschool have helped with this- and now he can't stop scribbling! He rarely goes 10 minutes without having a scribble with a crayon. It's such a milestone for him.
  • He's understanding us more. His comprehension is still very delayed, but it's improved so much lately. He understands things that aren't just one-word nouns. If I say, "come sit down" or "scribble on the paper" (when he's using the floor!) he understands exactly what I'm saying.
  • He's responding to praise. He's always been quite sensitive to praise- or the noise that usually goes with it- and would get very upset if we clapped or said, "Good boy!!" But lately, he loves it! He breaks out into a massive grin & a chuckle every time you praise him. He also looks to other people in the room for their praise too, which is amazing.
  • He loves cuddles! It used to sadden me so much that River wouldn't cuddle me. Every parent wants to comfort & cuddle their child, and having your child not respond to this is awful. I wondered if River would ever want to be cuddled. These days, he loves them! If I'm sitting down, he'll often climb onto my lap for a cuddle. If I'm in the kitchen, he'll often come up to me with his muslins and try to snuggle into my legs until I crouch down for a cuddle. And the cuddles I get when I pick him up from preschool are just lovely.
So as you can see, River's making lots of progress! For quite a while now, various therapists have said that they think River is really high-functioning, but it was hard to imagine it when he showed such a lack of understanding. We still don't like to get our hopes up too much as no one can guarantee how much River will develop over the next couple of years, but we're much more hopeful than we were a few weeks ago.

Friday, 16 November 2012

Out & about

I was so very proud of River today. We had a really hectic day, full of situations that I thought River would struggle with- and he managed brilliantly with every single one. I think he actually found our day less stressful than I did!

Our day started with a carpet fitter arriving, to lay the carpet on our two flights of stairs. Usually, River gets very anxious when people come round, but he was totally relaxed at this strange man coming into our house! I think it was probably for a couple of reasons: River seems to really like men, and will stare at them and want to look at them! Also, the carpet fitter pretty much ignored River, whereas most people that come round want to talk to him & interact with him. So River just ran up & down the room, making noises, and occasionally glancing at the fitter.
Soon after he arrived, the fitter started hammering and bashing things- really, really loudly. River was fine! He got quite excited, running up & down, but not distressed at all.
I had a doctor's appointment, so we had to get the bus into town. I haven't taken River on a bus for about a year- the idea of being trapped in a moving vehicle with a screaming autistic toddler whilst being stared at by 20 strangers really doesn't appeal to me! But River really surprised me. To start with, the bus was 30 minutes late. River didn't understand why we were stationary & got a bit upset, but luckily I'd packed lots of breadsticks & rice cakes to see us through. When we finally got on the bus, he was as good as gold! He stayed very quiet & gazed out of the window.
We then arrived at the doctors & got called straight in. Again, he just sat in his pushchair and munched on some apple!
We had a while to wait for our bus home & we were running low on snacks, so I made the brave decision to venture into the nearby supermarket. River + supermarkets = disaster. Every time. But I thought we could nip in & out super-quickly. But the strangest thing happened; River was really relaxed! So relaxed in fact that I was able to browse a couple of aisles and get a few bits & bobs. Even queuing at the checkout didn't phase him!
I'm not sure if it was because we'd just walked along a busy road so he was a bit desensitised to the noise, or whether it was because he was in his buggy and therefore felt safe in his cocoon, instead of being in the trolley & at eye-level to the other shoppers. Or it may have been because it was in the afternoon & he may have been a bit sleepy. Whatever it was, it was lovely!!
We then got a very packed bus home. River's pushchair had to be parked right next to a newborn baby who was having a scream. River detests babies, mainly the noise of them. He glanced at me a couple of times but didn't seem particularly distressed by it. He quite liked holding onto my finger for the journey- I like to think that he was getting some comfort from it.

So yes, a very successful day. So many things that would've caused a meltdown a short while ago- a stranger coming round, loud hammering, having to wait for a bus, having to go on a bus, going to the doctors, going to the supermarket, being near a screaming newborn....but he did so very well. And I'm so very proud of him! Xx

Thursday, 8 November 2012

More progress- caught on video!

Just thought I'd share our joy about the progress River is making!

We've been working hard on teaching River to exchange photo cards in order to communicate what he wants. This is the foundation if learning PECS (Picture Exchange Communication System.) I managed to get a wee video of him exchanging a photo of some raisins in exchange for raisins. It's really important when doing this that you aren't replacing sppech with pictures, but using them alongside one another, so you'll notice that every time he gives me the card I say either, "More raisins" or "I want raisins" so that I'm modelling the correct speech.
He was lying on the floor watching tv, still in his Grobag, so his concentration obviously isn't great!

Next up- River got hold of my toffee-flavoured yoghurt pot today & after some initial trepidation was eventually brave enough to dip his fingers in & dab a bit on his lips. After a while, he not only ate some yoghurt directly off the spoon instead of using his fingers (which is very rare!) but he also held the spoon by the handle and ate the yoghurt off it- all by himself!! He has never fed himself with a spoon before, so I grabbed my phone & made sure I got it on video (sorry it's not very good, it was hard to load spoons of yoghurt whilst filming! He'd just woken up from a nap so looks a bit tired.)

Wednesday, 31 October 2012

GUEST BLOG: A Daddy's Perspective

So Tim asked me today if he could write a piece on the blog, to give a Daddy's take on things.

So here it is.

A Daddy’s perspective
It’s an interesting place to be in, to be reading a blog about your own Son.  The last year has been such a rollercoaster ride for this little family and to have the trip available to muse over in a blog has been invaluable to me personally. It is easy to forget how far we’ve come and miss the small stuff. But having the blog gives me time to reflect on the journey we have begun. A time to stop and smell the flowers if you like.
I wish I could paint a picture with words the way that Gem does. Gems blog has the ability to transport you right into the heart of our family, quite often I have been moved to tears or laughed out loud at something funny River has done and Gem has recaptured here for everyone to share with us. I think my blog entry will be clumsy and not as well put together as my gorgeous fiancĂ©e. So please forgive me if this entry isn’t up to the usual standard!
I came across this article this morning and it moved me more than I imagined it could.

I can just imagine River in this situation or others similar, wanting all the sweets because he would need to separate them into piles and want to know the different colours.  To others he would seem greedy, slow, backward or selfish, but we all know different because we all have taken the time to know River. To be honest this breaks my heart, I hate the thought of River being misunderstood at a first glance. I want everyone to see and appreciate how amazing he really is and to tell him so. Through knowing him I can tell that he is going to be such a sensitive soul. Gem and I will be standing with him for as long as we can but it is a worry that we might not always be there, and then who will? Who will be able to tell the world what an outstanding individual he is if we aren’t able to? Who will be able to take the time to get to know him when the world is so fast paced and busy and people all too frequently need to fit into slots that others dictate?
I work office hours during the week, River sleeps well so I don’t get to see him in the morning although he is often chatting and giggling to himself by the time I set off. (I would love to know what he’s thinking about at these times). By the time I get home in the evening, River is usually motoring up and down the living room at 100mph, there will be balloons, balls, picture cards and books scattered everywhere, different piles of similar toys will be stored under cushions. Normally in one of the chairs will be a family of ducks, in another will be a pile of spoons, another favourite at the moment is disposable cameras. Once River has found one of his toys he will set himself a personal mission to find the rest of the set. River will notice my arrival at some point and if I’m lucky he might be able to pause for a second to acknowledge me being there before whizzing off again with a shout and a puff of smoke. Gem and I were comparing him to the Tasmanian Devil cartoon character the other day, I’m sure you can see why.
The weekends are our time to play together as a family. It mainly used to involve considerable amounts of time at the motorway bridge watching the traffic go by; another favourite would be simply watching cars parking in a car park. But as time passes River is noticing more of the world around him. Earlier this week we took him to a garden centre to look at the brightly coloured fish. What captured his attention more than anything this visit was a guinea pig. It doesn’t sound much but trust me this is massive, a few months ago he wouldn’t even have noticed an animal if you put him nose to nose with one.
 To me this is what it’s all about; it’s savouring every small step on the journey, remembering and recording it in a blog for ourselves and for our friends and family to share. The path we’re walking on might have a different destination but that doesn’t mean it has to be any less pretty. We share this blog because we want to share River with you. We want the world to learn how blessed we are that we’re his parents and how much richer our world is when we get to amble it at an albeit slower pace with a boy named River.

Monday, 8 October 2012

Lots of good and a little bit of bad.

So today was River's first ever full session at preschool without me! It went brilliantly. I snuck out when he wasn't looking and was free! Such an amazing feeling. I think people expect you to be a bit sad when leaving your child in preschool for the first time, but I was super happy! I have complete trust and faith in River's 1:1 support and in his preschool, and having some time off has been a long time coming!

I was able to do some many simple things with ease that I normally can't do- like hanging the washing out upstairs. I can't do that during River's waking hours as I can't leave him unattended for a second, and I can't take him with me as he assocaites the top floor with going to bed so would go berserk. Plus, I can't carry him and a washing basket up the stairs! And I made some chicken burgers without having to wash raw chicken off my hands every two seconds to get River a snack, turn the tv over, read his book etc.


He seemed very happy when I picked him up and had had a brilliant morning. So all in all, a great success.

Although I'm currently feeling a bit stressed. One of the reasons for wanting an early diagnosis was to get a place on the EarlyBird course. The EarlyBird course is a course ran by the National Autistic Society all over the country for parents whose child has received a confirmed Autism diagnosis before the age of 4. There are 6 families on each programme, so it's a brilliant way of meeting other parents in your position. It's once a week for 3 months, sometimes in a training centre & sometimes as a home visit.

Since getting our diagnosis, I've been asking for a place on this course. Our paediatrician said we should definitely go on it & told us to speak to the Autism Outreach Team (SAOT) who organise it. So I spoke to them today, who've said there won't be any EarlyBird courses running in the area for the foreseeable future, as there aren't enough families getting a diagnosis before 4. They've said we basically have to wait until River turns 4 and then go on the EarlyBird Plus course (for ages 4+.)
So I called up the National Autistic Society and asked them where the nearest course was to us. They said Weston-Super-Mare. So I called the WSM branch- who said we couldn't go on their course because we weren't under their catchment! I asked whether getting a letter from our paediatrician would allow us to go on it and they said, "Well you can try, but you're not even close to our area so I doubt it."

It makes me sooooo, sooooo cross that we pushed and pushed to get an early diagnosis, because early intervention is so important, and yet we're then told to wait another 2 years! We are very fortunate to be getting weekly Portage sessions and have seen other therapists, but we really wanted to go on the EarlyBird course.
It annoys me that we are missing out on help & support because children aren't being diagnosed before 4. And the reason they aren't being diagnosed is because health visitors, doctors and other healthcare professionals are wanting to "wait and see" and not "label" a child too young. In my opinion, there is no reason to delay diagnosing if all the signs are there.

What this has made me realise is that just because a service is "meant" to be available, doesn't mean it will be. And just because we're told certain help will be available for River, it doesn't mean it will be. And this is why we want him to have a statement. He's currently getting a lot of support- weekly Portage, 2yr old funding for nursery, 1:1 support- but if for some reason the Local Authority were making cuts and wanted to stop it all, there's nothing we could do. Whereas if he has a statement, it is a legal document and the Local Authority is obliged by law to stick to it.
So I guess that's the next battle really. I'm going to attempt to approach this slightly more relaxed than previous battles though. I'm going to *try* and not let it overshadow everything else in life. And rather than try to do it all on our own, I'm going to let people help us a bit more too- there are a couple of good organisations that are there specifically for this sort of thing- Parent Partnership (information advice and support to parents and carers of children and young people with special educational needs) and also IPSEA (a national charity providing free legally based advice to families who have children with special educational needs.)

So overall, I'm feeling good- sooo pleased River is settled at preschool and I get a break! Massive milestone for us. Also a bit grumpy that the support isn't there for us when it should be and that we have another struggle on our hands- BUT feeling like we're not doing it on our own now, that there are people whose job it is to help us which is comforting.

Thursday, 4 October 2012

Feeling good!

Well River has been at preschool for four weeks now, so it seems like a good time to write a new blog entry.

Things are going very well! River is managing the full three-hour session, which has surprised everybody as we all thought he would need a much more gradual introductory period and would maybe manage half an hour for a couple of weeks, then build up to an hour etc- but almost from the very beginning he has lasted the whole time. He has also bonded really well with his 1:1 support, who is really lovely & definitely the best person for River. He's managing to sit at the table with the other kids for snack time, and hasn't felt the need to grab any other kid's faces for a while!
There are definitely things that have been crucial in this happening.
Firstly, I have been by his side for the first 5 or 6 sessions. During the completely alien experience of being a preschool, he always knew he was safe because I was right there. This is soooo massively important to children like River. This has meant that he has managed to get to know his 1:1 support whilst still having me in the background. Getting to know new grown-ups is a big deal for River; most children will recognise a friendly face, someone smiling at them, saying nice things to them and speaking in a calm & caring tone. Whereas River doesn't understand facial expressions, he doesn't understand much language and he doesn't understand tone of voice- which makes new people quite scary for him. So having me there has helped tremendously with this process.
Secondly, the fact that he has 1:1 support is vital. All these crazy kids being noisy and running around, and yet in the midst of it is one person who is always by his side, always encouraging him to interact, and who has now learnt his likes & dislikes, his limits, & how to prevent certain situations occuring. I dread to think what would happen if he didn't have that support.
At snack time, the children would normally pass a plate of fruit round & take one piece at a time. Whereas the only way River will sit at the table is if he has a plate of fruit in front of him to focus on. So that's what he has. Just adapting such a simple thing can make all the difference.
When we first started, we arrived 15 mins late and came in through the side door which is in the playground, so River could spend time in the playground and come in when he felt ready. Now, we're managing to come in through the main entrance. We still come in later than everyone else so that all the parents have gone and the kids are settled (in fact, today we were really early & arrived t the same time as everyone else & River had a minor freak-out) but we're doing well.
I then spent a session sitting in the corner of the hall, so that I was accessible if River needed me but it meant that he was more likely to interact with is 1:1 and work on his rapport with her instead of always looking to me. Then I spent a couple of sessions sitting in the kitchen out of sight, and even popped out to the shop- and he didn't even notice I was gone!
As from next week, I'm going to be leaving him for the whole session. I feel completely confident that he will be absolutely fine, and I am so very excited to finally have some time to myself!!

In other news, we've started our weekly Portage sessions. Our Portage worker is worth her weight in gold, really lovely and knows exactly what she's doing, very positive and knows how to push River's boundaries without pushing him too far. She also gives me lots of new ideas for games and activities.

We're also thinking of stopping the gluten free & dairy free diet. River has definitely made some progress since being on the diet, but not anywhere near the same level that others have found. The progress may be down to the diet, or it may be because he's just naturally developing, plus he's now having Portage & preschool and I spend a lot of time playing with him. I think the only way of knowing is to reintroduce these foods and see if he stops progressing or regresses. So now I just need to decide whether to stick it out a bit longer, reintroduce just dairy, just gluten, or both.

So overall, things are going very well! I'm making a really concious to not dwell on the future and the "what-ifs" and focus on the here & now, celebrating the achievements each day.

Tuesday, 11 September 2012

Everyday stresses.

I haven't written a blog for a while. I think I was waiting for some positive to happen so I wouldn't have to write something negative. But I guess that's missing the point of the blog- writing an account of our autism journey- if I leave out the bad bits.
The thing with autism is that nothing particularly bad needs to happen to make you feel sick with dread, worry & anxiety. There are constantly a million worries simmering away in the background, and no matter how many times people tell you- and you tell yourself- that there's no point worrying about the unknown, you    can't switch it off.
Because when you have children, there are certain things that you think are a given. And when they aren't a given any more, you worry. A lot.
River started preschool last week. I'm going to be with him for several weeks/months, he has a 1:1 preschool worker, and there are lots of allowances made for him. He did much better than I thought he would, which was great. But he's still a million miles away from all the other children.
We arrive 15 minutes later than everyone else so he isn't upset by the disruption. We don't use the main entrance, we use the side entrance which is through the playground so that River can spend time in the playground first and come indoors when he feels ready. He's allowed to graze on carrots & rice cakes whenever he likes as food is a comfort to him. He doesn't have to join in with Circle Time- he doesn't even seem aware that it's happening. He doesn't have Snack Time with everyone else. He has a side room that's just for him, that he can go to if it gets too much. He runs up & down the hall flapping, in his own little world. If he's outside & the other children come outside, he gets upset so comes back in. And when he's had enough, he can lead me to the pushchair and go home.
He needs supervision constantly. He's had two sessions at preschool, and has so far: tried to eat a stone, tried to eat some playdough that he found outdoors, tried to casually step off the climbing frame (a two or three foot drop,) pushed two children that weren't even in his personal space- he just didn't want them to be there- and scratched a child's face making her cry (I don't think he wanted to hurt her at all, I think he just wanted to grab both sides of her face and squeeze to see what it felt like- I think it was a sensory thing. He also had a big meltdown, throwing himself about, screaming, and staring into my eyes as if to say, "I don't understand what's happening mummy, make me feel calm & safe again."
It's bound to take time for him to settle. Going to preschool is massive for any child, so some of these things will probably get better. But- what if they don't? These allowances won't be made for him at primary school. People have said that watching other 'normal' children may encourage him to socialise & communicate better, like it will 'rub off' on him. Somebody described this wonderfully on a special needs forum recently, saying, "forcing an ASD child to socialise is somewhat like saying to someone who cannot walk easily 'go on, you CAN walk really....' " which sums it up pretty well.
So naturally, I worry about schooling. I say I, and not we, because Tim is so much better on concentrating on the present & not the future than I am. I worry whether or not he'll tolerate the mainstream village primary school- or indeed any mainstream school. I feel like I'm meant to say that I'm hopeful he'll be fine in mainstream, that I think he will, that that is what I am planning for. But it isn't. Hand on my heart, I do not think full time mainstream education is going to be right for him. The choice may be very obvious in a couple of years anyway- he may not develop speech & may remain developmentally delayed & therefore need a special needs school. But even if he develops normal speech, is developmentally on par with his peers or even especially bright, he is still lacking the fundamentals of mainstream school- the ability to understand and communicate with other people. It's the whole square peg in a round hole- you're just going to damage the peg. I'm not completely writing off mainstream schooling- River's only two, who knows what the future holds- but I really think that he won't cope with full-time mainstream school.
So what are the other options? A special needs school is the first thing that comes to mind. Tim has a lovely auntie who is a special needs teacher for a local special school, and from what she tells me it sounds wonderful. Then there's the option of a mainstream school with an autism unit attached to it- sounds perfect on paper. But I've been told they're not as great as they sound- it would basically be all the bad things about mainstream school without the specialist support from experienced teachers. Then there's homeschooling- now I love River dearly, but after 2 years of being with him every day apart from maybe 3 or 4, I need a break! But if none of the other options were working then I'd consider it.
The other option I've read about on forums is 'flexischooling.' It's a cross between homeschooling & mainstream school- a popular option for children that can't manage full-time mainstream, so they may do 3 or 4 days at school & a day or two being educated at home, or if they can't handle a whole day at school then maybe mornings at school & afternoons home educated. Of course, I'd encourage socialising but in a non-pressurized sort of way ie things that River was interesting in, such as chess club, bowling or whatever.

So yes, that's a big worry & a big stress. And it's on my mind all the time.

Next stress: talking. I JUST WANT RIVER TO TALK. If I had a pound for every time someone said to me, "he'll talk when he's ready" or "my nephew/cousin/neighbour/Einstein didn't talk until they were five, he'll get there" I'd be pretty rich. HE MAY NOT GET THERE. Not all autistic people can talk. That's the difference between River and someone's nephew/cousin etc- a late talker is very different to someone on the spectrum. I want him to talk. He has so much going on in his head, you can almost see the cogs turning- and I wish he could express his thoughts. I recently bought him a speech & language DVD that he loves. I recommended it to the mums on an autism forum I'm on, and several of the kids have started saying a few words or mimicking the pretend play that's on the DVD- River hasn't. It's so frustrating.

Massive, massive stress.

Then there are all the millions of little developmental things that he can't do. He can't feed himself with a spoon or fork, can't make marks on paper with crayons, doesn't clap, doesn't wave, doesn't point to share interest, no pretend play etc. etc. etc.

I just want to help him. I want to TEACH him. We've worked really hard at building a relationship with him, and it's lovely to see. There are several games that he likes playing with us, his eye contact is great, he likes to climb on us for cuddles, and his interaction with us is just lovely.
But how do we teach him to interact with others? He hates people coming into our house. He dislikes other children. What can we do to help this?

Of course, it isn't the only stress in our lives. We have other big worries & stresses to deal with, we have the usual things like bills & housework to keep on top of. The world just seems awfully unfair sometimes and can make you question why you deserve the hardships. But then again, everyone has hardships. No one deserves them. Some people's hardships are much worse than ours.

Sigh. Will try to make the next blog a happier one!

Saturday, 11 August 2012

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.

ASD research

Tuesday, 31 July 2012


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.

Thursday, 12 July 2012


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!!

Thursday, 21 June 2012

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.

Tuesday, 19 June 2012

"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

Saturday, 9 June 2012

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

Saturday, 2 June 2012

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.

Friday, 18 May 2012

YouTube video

I just wanted to share this very powerful & moving YouTube video that has really touched Tim & I. Please watch, and even share on Facebook if you're feeling extra lovely to help raise awareness. Thank you x

Tuesday, 15 May 2012

Timeline of appointments

This is for our benefit more than anyone else's, but I'm always getting muddled about when I first enquired about this, or when our first appointment was for that, so I just need to write a list of when things have happened.

Dec 2011- Asked GP for referral to Paediatrics
Jan 2012- Letter from hospital explaining the waiting list is around 11 weeks
Jan - Told by Heath Visitor that speech therapy was unlikely at such a young age
20 Jan - Self-referred for speech therapy & occupational therapy
3 Feb - Health Visitor did SOGS test confirming River is developmentally delayed, agreed to refer for hearing test
24 Feb - Applied for Disability Living Allowance with help from Cerebra
27 Feb- Appointment for a speech therapy is offered
9 March- chased hearing test with hospital, they'd never received a referral! Called Health Visitor & asked her to please refer him.
12 March-Speech Therapy assessment
14 March- Portage home visit by Educational Psychologist
19 March- received Speech Therapy report
23 March- still no news on hearing test so chased again & was offered an appointment
26 March- received Ed Psych report
23 March- letter from DLA explaining they've requested a report from our GP
30 March- Paediatric assessment at hospital- although when we arrived, we were only seen by a registrar. He didn't have a copy of the Ed Psych report. He agreed to refer us to the autism specialist.
4 April- Health Visitor repeated his SOGS test at home
6 April- received paediatric appointment through as the registrar had promised- but instead of being with the autism specialist, it was with another registrar for September.
11 April- Appointment with GP, expressed unhappiness at being fobbed off with another registrar appointment. She agreed to refer us & ask for either the autism specialist or another Dr experienced in autism, NOT a registrar
25 April- Call from DLA requesting the Ed Psych report. Emailed it to them.
27 April- received Paediatric report
May- still not heard about paediatric assessment so called hospital & was offered an appointment with another doctor very experienced in autism for July
2 May- letter from DLA apologising for delay
8 May- received an appointment for the main autism specialist in June
8 May- Family Support Worker round to apply for 2yr old pre-school funding for River
9 May- Senior Portage Worker visit
14 May- received letter confirming our application for DLA was successful.
14 May- Family Support Worker called, application for 2yr old pre-school funding was successful.
14 May- Speech Therapy & Occupational Therapy home visits
16 May (tomorrow)- Hearing test at hospital
16 May- Nursery nurse from Health Visiting team home visit
17 May- Occupational Therapy home visit
19 June- Paediatric assessment with autism specialist
13 July- Paediatric assessment with Dr experienced in autism

Thursday, 10 May 2012

Exploding head.

Well as the title suggests, my head is literally about to explode.

There is just so much to think about constantly, which is so unbelievably draining. Constantly things to help with River's sensory issues, to help him understand the world, and to help him communicate.

I no longer talk in proper sentences. "River, look! Look! Car. Ooooo, car. Car goes brum brum! Car goes brum brum! River, eat breadstick? Breadstick? River, eat? Ta. Ta. River, clean hands? Clean hands? 1,2,3...clean clean clean! More? More? 1,2,3...clean clean clean!!"

For god's sake, I'm driving myself barmy. You see, children with ASD don't do well with big sentences. They don't know which words to focus on- so if I said, "River, would you like a breadstick to eat?" he would switch off & not pay attention as it's too muddling. So sentences are shortened to one or two words. And they are repeated two or three times to try to imprint the word in his brain. Then there is signing. As River doesn't speak & doesn't understand much speech, we do Makaton signing to give him a visual cue. So instead of just giving him another breadstick, I will say & sign, "More?" a couple of times, then get his hands & attempt to make him sign it before giving him the breadstick.

Then there is the constant preparation for what's about to happen next. Children with ASD struggle to transition from one thing to another, so getting in the car & going to the supermarket or a friends' house might not be a big deal to most children but for children like River, it's a major cause for anxiety. Suddenly they are plucked from the world that they are comfortable in- lots of things to spin, no noise etc- and plunged into a new scenario with bright lights, noises, unfamiliar people, nothing to spin- and nothing makes sense to them any more! Sooooo- we help this by trying to prepare River as much as we can. For instance, the past few weeks have been horrendous at bathtime. River will happily stand in the bath but refuses to sit down. He will flick the surface of the water but refuse to pick up a toy from the bottom of the bath & scream with frustration. As soon as his body gets wet, he screams. God forbid if you try to wash his hair. He uses my hair as rope and attempts to climb out of the bath by hanging off it. Ouch.
So we tried a new tactic this week. The bath was much shallower to start. Instead of pouring water over him, I used a sponge. I said, "Wash arm? Wash arm? 1,2,3...wash wash wash!!" and timed washing his arm with my speech. He actually smiled! After washing him I said, "River, sit down? Sit down? 1,2,3-" & scooped up his legs- "Down!! Yeah!!" He stayed seated for about 10 seconds then jumped up again. But no tears! Vast improvement!
We will also (when River's a little older) use photos in prepare River- photos of pre-school before he goes, photos of the supermarket before we go, photos of friends before they come round.
We are in the middle of making a photo book. This will basically be a simple photo album with photos of familiar things- cot, mummy, daddy, beaker, raisins. The plan is that River will get used to these words & what they mean, & I will then use the photos alongside the real object- so when he wants a drink I will show him the photo of the drink. Then eventually, he will learn to bring me the photo of the beaker when he wants a drink.
There's also objects of reference. This is when an object is used to request something. River is picking this up well which is great. For instance, if he wants the tv turned over he will bring me the remote. If he wants bubbles, he will bring me a pot of bubbles. And even if we're right in the middle of something, we act on his request, as it's so vitally important that he understands that if he communicates with us, his needs will be met.
Then there are his sensory issues. River has real sensory aversion to certain textures- he won't touch pasta, jelly, finger paints or many types of messy play. So we try to do as much messy/sensory play as possible. Things like sand, shaving foam, finger paints, liquid starch & glue, cornflour & water, cotton wool. He also walks on tiptoes a lot so we try to get him to walk on different textures.
We try to make homemade sensory stuff as sensory toys from specialist companies cost an absolute bomb. So yesterday I got some balloons & filled them with various things like rice, flour, cous cous, hair gel, dry pasta etc to give sensory input. Also, River doesn't have very good fine motor skills & so struggles to turn the pages of board books, so we've adapted them by putting small rubber kitchen drawer stoppers on the corners so that he can turn them easier.

I feel very fortunate that we have so many people involved in helping River already. So far, we have: paediatrician, educational psychologist, speech & language therapist, occupational therapist, senior Portage worker, family support worker, and a nursery nurse from the health visiting team. And that's all before River is 2!! Sooo many people elsewhere in the country are struggling to see anyone other than their health visitor or GP.

Has this post made your head spin a bit? Maybe found it a bit boring? I am not surprised, as that's exactly how I feel about it every day. Of course I'm not bored of helping River, but I'm so bored of constantly thinking about everything I'm doing all of the time, wondering what else I should be doing, what other games I can think of that will help River progress.

Right, I'm off to take some headache tablets and get River up from his nap.

Thursday, 19 April 2012

Feeling blue

Tonight, there is a programme on BBC2 about autism. I think it's important for us to watch it (me in particular, I think Tim might find it upsetting) & I think it's great to raise awareness of autism. But I've just watched 3 clips of it on the BBC website & feel really sad.
Some of the teenagers featured have severe autism and are non-verbal. I am sooo sooo desperate for River to be able to talk. If someone told me River won't talk until he's 4, that's fine. I could cope with that. But not knowing if he'll ever talk is such a massive fear for me. I know there are so many parents whose autistic kids are non-verbal & cope brilliantly, but to me it just feels awful. The one bit of speech River did have- "baa baa baa" - he's now lost.
In every article I've read, when asked whether they'd change their child they always say no. "If someone told me they could take away my child's autism, I wouldn't want them to. It's part of who they are."

But I would. Don't get me wrong, I love River's quirks & personality and love him for who he is but I feel so sad that he is going to face certain struggles that others won't, & will be judged by people. I don't want him to be a social butterfly, but I don't want him to be scared of people & distressed by the mere presence of other people. And I don't expect him to enjoy every minute of life- who does?- but I don't want the world to be a confusing & scary place for him. Does that make me a bad mother? I feel so bad that I want to 'change' something about him.

Another thing that I feel terribly guilty about is when I look at him, I see autism. It's the first thing I see. And it's constant. Everyone says to me, "He's still your wonderful little boy" &  "Don't forgot to enjoy him just for being River." And I so desperately wish I could.
It starts as soon as I see him in the morning. I open his bedroom door & say, "Hello River! Hello!" whilst waving (in an attempt to teach him to wave!) & he just stares into space, as if he hasn't heard me or seen me. That's because he's autistic, I think. I pick him up, he still hasn't even looked at me or acknowledged me- that's because he's autistic, I think. I attempt to take him downstairs, but if I try to walk past my bedroom he screams. He HAS to sit on my bed & watch a Thomas DVD before he can face going downstairs. That's because he's autistic. Whilst watching the DVD, he cimbs off the bed & runs up & down our bedroom flapping his arms. That's because he's autistic. We eventually make it downstairs & I give him some toast on a plate. He upturns the plate & spins it. That's because he's autistic. He carries the toast, handful at a time, & places it in a pile on the Examining Chair (armchair.) That's because he's autistic. He then eventually eats the toast, whilst staring out the window out of the corner of his eye. That's because he's autistic.

And this is all before our day has started.

I desperately want to think, "That's because he's River. It's just what River does." But I can't. Autism is always there first. Will my mindset better over time? Will it get better once we've got a diagnosis & can move on? Or am I a bad mother & am always going to think like this?

Who bloody knows.

And it's raining today.

Wednesday, 18 April 2012

A magical moment

The most amazing thing happened yesterday. River kissed me for the first time.

I've waited 21 months to have those cute little lips lean in for a kiss and yesterday morning, when I asked "Mummy kiss?" he looked at my mouth and placed those lips on mine.

At risk of sounding melodramatic, it was honestly one of the best moments of my life.

Tuesday, 17 April 2012

Plodding along

So I don't have much to say, but fancied writing about the day-to-day stuff.
We've had a few small breakthroughs in the last couple of weeks- first off, River has been looking at books! I was starting to think he'd never want to look at books but then out of the blue he brought one over to me & wanted me to hold it whilst he turned the pages. He wasn't interested in me reading it, but it's still a big deal to us! He's also starting to remember/understand a few more words. This weekend, I said,"River-raspberry? Raspberry?" and he leaned into me for me to blow a raspberry on his neck! All the constant repetition is paying off. Also, when we sing & sign "The Wheels on the Bus" (we do this twice a day, before naptime & bedtime) and sing "the wipers on the bus go..." "the doors on the bus go...." etc, he will move our hands so that we do the correct signing, which is great!

The things that aren't so good- the one sound that River had been making was, "baaa baaa baaa" during Old MacDonald. He had been doing this for about two weeks, but hasn't done it for maybe a month/six weeks now. Losing or regressing in speech is not a good sign. Also, whenever anyone comes into the house-whether it be a stranger or a familiar friend- River cries and runs to the conservatory door & takes ages to calm down. He also gets very, very upset if another toddler plays with certain toys or makes certain noises.
He's also showing more ritualistic behaviour- he likes to 'gather' similar objects, so he will unstack his stacking boxes and move them one by one onto the armchair, then throw them off again, then get three matching tupperware lids & spin them repeatedly, then 'gather' them onto the armchair. He still refuses to sit at the table or keep any food in a bowl/plate- if he's at the table, he goes crazy as he needs to 'examine' the food on his armchair. If I put a bowl/plate of food ie toast, raisins etc on the living room floor, the food is instantly emptied out, the bowl is spun on the floor, & food is scooped up and he runs with it to the armchair, where he gathers it into a pile & then eats it.

A bit about the armchair- we've nicknamed it River's Examining Chair, as everything- new toys, food, everything- gets taken to the armchair to be inspected and examined. We try to discourage people from sitting on this armchair, as a)it's River's safe space, and b)It's constantly covered in crushed breadsticks, toast crumbs, and the odd raisin. Gross.

I've also been researching the link between food & autism- there are lots of success stories online about the GF/CF Diet (Gluten Free & Casein Free.) Apparently people with autism are effected by these food groups, & there are many people who claim that after cutting out pasta, oats, bread, wheat cereal, milk, butter, cheese, whey, lactose etc- that suddenly their child could talk for the first time, stopped stimming (flapping arms) pointed, waved. So part of me thinks- if there's a chance of it helping River, shouldn't I give it a go??
But there are others who say it's had no effect. The NAS website says that research shows the most effective cases are the ones where the children have problems with their bowels (it's very common for children with autism to have regular constipation or diarrhoea) which isn't something River has ever suffered with badly.
That's about it for now.

Thursday, 5 April 2012

Just an update

Well after our paediatric appointment last week, I slept on it, & woke feeling much more positive. 

The way we started to look at it was that if River had seen the doc that we were down to see (who
 isn't an autism specialist but can still diagnose autism), he may well have sent us away for 3 or 6 months, yet kept us under his care- however, because we only saw a registrar, we are now being referred to the top dog, the main specialist who we probably wouldn't have ever met otherwise. Which is good!
I didn't want to get to the autism specialist's appointment in 3 or 4 months & risk her still not having the Ed Psych's report, so I discovered  her email address, scanned our copy of the report, & emailed her a copy. I also included a copy of River's autistic traits (I'd given a copy to the registrar last week but just in case it gets mislaid I thought it best to provide an electronic copy.) I thought at the very least, she will have all the necessary documents about River for our appointment & at the very best, she may read them, be very interested in seeing River as he's so young & try to fit us in sooner if she had any cancellations.

However, today I received an appointment letter: an appointment for yet another registrar (not even the autism specialists registrar.) For September. So instead of seeing the top dog in 3-4months like we were told, we are seeing another registrar who won't have any ability to diagnose, in 5.5months. Who will of course need to refer us to a doc who can actually diagnose, which will again probably take another few months.

It is just sooo bloody frustrating! 

We think River is on the spectrum, so does the Ed Psych, so why can't we get seen by a Paed that can actually do something?? So I called our Ed Psych (have I mentioned yet that she's lovely?) who said they are probably very nervous about putting a lifelong diagnosis on a child at such a young age, but said my best bet was to speak to my GP to try for a direct referral to the top dog.Which is a pain in itself, as our surgery have just assigned us to a new GP that's just joined so I have a telephone appointment with her next week & will have to tell her all about River from scratch so that hopefully she'll refer us. 

Nothing is ever simple!

We've also got an appointment through for River's hearing test in May, & a letter accepting him for Occupational Therapy so we'll hopefully get an appointment for that soon.

Whilst chatting to the Ed Psych I asked her about nursery- children with special needs can get free nursery hours from the age of 2 instead of 3 which means River could start at pre-school in September. So really, I need to decide- do I keep him at home until he's 3 as originally planned, OR do I send him when he's 2, so that it can be a very gradual process- maybe an hour a week at first, then 1 morning a week, gradually building up. River isn't good with change & adapting, so it will be a slower transition for him. But he's still so little- I know lots of kids are in a nursery from a very young age but I've always spent all day every day with River! Then we need to decide- do we try to get him into a special needs nursery with nursery workers who are experienced with his needs, OR do we send him to our village nursery who openly admitted they have zero experience of ASD? Thankfully the Ed Psych was thinking exactly the same as us-earlier nursery would be best as we can gradually get him used to it. Also, we're steering towards the village pre-school as he will be surrounded by 'mainstream' kids who will stimulate him more & encourage him to learn to turn-take, mix with kids, share etc, also it's a familiar setting as the nursery playground is open to the public so we use it lots, and the fact they don't have any experience is almost a bonus as they'll have no pre-conceived ideas about River, autism etc & will be open to getting training, plus we'll get funding for River to have one-to-one support.

We also had the health visitor repeat her assessment this week, last done at 18 months. River has made improves in two areas: Visual was 3 months, it's now 6 months. Speech & Language was 3 months, it's now 10 months. It's still way off 21 months but it's an improvement which is great :)

Yesterday, we started the Brainwave programme which is exciting. However, we've recently been told that the Ed Psych/Portage are starting a new home-based programme for young children with ASD/ social & communication difficulties. They would like to start this with River in June, but wouldn't want River to do that & Brainwave. So we'd need to choose. I feel soooo lucky that we have these things to choose from but it's a tough decision. So we're going to do the Brainwave programme for 6 weeks, and see how River reacts to it, then decide.

Also, called DLA about our application, they received the GP report on 29th & can take up to 12 weeks to make a decision. Great.

So that's what's happened this week.