Testing times.

I wish I could always write about good things. I wish we were always moving forwards, progressing, developing. Unfortunately that isn't the reality of autism, and despite knowing this, every time we take a step backwards or have bad days/nights/weeks a feeling of panic and grief sweeps over & knocks me off my feet.

River recently learned animal noises. It was such a massive, massive step for him- to finally be making intentional noises. He could do cat, dog, mouse, bird, lion, snake, monkey, sheep, duck and hippo (don't ask.) We were soooo proud of him! It was our first inkling that him developing speech is very likely. 

Most of those animal noises have now gone. He can't/won't do them any more. I'm sure he's still got those noises stored in his brain somewhere, but he probably doesn't see the point in using them any more. But what does this mean for his future language development? What's to say he won't develop speech then decide not to use it? People say there's nothing worse than having no hope- which isn't actually true. What's worse is having hope then feeling like it's been taken away from you. I met with a speech therapy expert at a special school recently (I'll come onto that in a minute) and I was telling her all about his amazing animal noises & how exciting it was, and she warned me that they may well disappear as it's very common for autistic children to gain skills then lose them again, then sometimes get them back again. But I didn't think it would happen with River. I shouldn't have been been so blasé about it.

He also found a toy radio recently that was once a favourite. It has a small dial on it that you twist to hear different songs. Except this time, he couldn't twist it. He just couldn't work out how to do it. "Twist it River" I kept saying. "You know how to do it." But he had no idea. I kept trying to mould his fingers round the dial but they stayed floppy & he didn't understand how to hold it tightly. I demonstrated a few times, then got him to try again. Still no clue. I started to panic, and could feel myself welling up. "Just turn it River! You do it. You know how to do this." But he didn't. Simple fine motor skills that are learnt at a much, much younger age- and something he could do effortlessly- were lost. You start wondering: Is he ever going to learn that again? How long will it take for him to learn it again? What other skills is he going to lose? Is it my fault for not making him practise it frequently enough? I knew I shouldn't have packed that toy away. What other skills should I make him practice regularly so he doesn't lose them?"

I needn't have worried- a couple of days practise & he'd mastered it again. 

People say that when you're looking for a school to send your child to, whether they have additional needs or not, you just 'know' when you find the right one. A bit like buying a new house- you just get a feeling.

Most specialists & therapists we've met have given the impression that they feel a mainstream school would be fine for River as long as the right support was in place. And despite not being convinced of this, I still thought that it would be our village primary school that would give me 'that' feeling. That I would think, "actually this would be perfect for our River." 

Tim's auntie works at a special school in the next town along & invited me to have a look round. The minute I walked in- even just in the reception area- I got 'that' feeling. I just knew River would love it instantly. So much thought had been put into the little things that make all the difference to many children with special needs- visual aids everywhere, stimulating/calming sensory equipment. We went into each class, and I just kept thinking, "River would love this. River would be absolutely fine here." 

It was a bittersweet feeling though. I was looking at all of the wonderful, happy children & the teachers & assistants that were so obviously passionate about them in this wonderful school and thinking, my goodness. My child has special needs. He's not like most children, he needs more care, more love, more understanding. This is the environment he belongs in. When you set out to have a baby, you never imagine yourself visiting special schools for them. It feels like another difficult milestone.

River can be such a loving child at times. When I pick him up from preschool I get the biggest smiles & usually the biggest hugs. Sometimes, when I'm in the kitchen washing up or making tea, River will wander up to me and just lean on me until I bend down and cuddle him. It's lovely.

But there's another very challenging side to River. If he wants something that he can't have, he will respond with aggression. He will slap me in the face, pinch me, pull me, push me, pull my hair, try to drag me into a different room by my clothes. He will scream and scream and scream. Some would say the answer is to discipline him. Put him on the naughty step. But River has such delayed understanding, he wouldn't understand the concept of something like that. How do you discipline a child with the understanding of a 12 month old baby but with the strength, aggression and frustration of a nearly 3 year old?

He's aggression isn't just when he can't get his own way. If he hurts himself, he won't be comforted but instead just wants to hurt me. Maybe he thinks I caused it? Sometimes, there is no obvious reason for the aggression. It's very difficult to keep your cool when you're being hurt. Especially when you're at home all day coping with it. I've been known to yell at him when he's hurt me, before I can stop myself. I'm not a shouty parent and I feel so, so guilty when I lose it at him.

I recently found out about Carer's Assessments. Anyone who is a carer can ask for a social worker to assess their needs and see if any extra support can be put in place for them. To do this, you have to create a record with Social Services. Which feels scary. In my mind, Social Services is there for vulnerable children, or children who are at risk. Of course this isn't true, but that's the stigma around Social Services. I felt like a failure when I called them. They asked me why I would like the assessment, what prompted me to call them. It's hard to ask for help & admit you're struggling, it makes you feel weak. I feel like I'm letting River down, like I should be able to handle this.

And that's the crucial part of it I think- I still think of myself as the same as any other parent of a 2 year old, & I still think of River as a 'normal' 2 year old. And that if all the other mums can cope with their toddlers without help, why can't I? But I need to accept that we are not the same. River has very different needs to most 2 year olds and asking for help isn't a reflection on my parenting abilities. I have no one who says, "Let me take River off your hands for the day" or "Take the afternoon off, I'll watch River." And it's intense. Really intense.

So my mantra for the next few weeks is: Do not feel guilty for accepting help. Whether I'm ready to fully accept it or not, River has very special needs. That help is available because families like ours need it, so make the most of it. 

Magic Moments.

I can't speak for all autism parents, but certainly for Tim & I and also other autism parents we speak to there are occasional moments in time that I like to call Magic Moments. They are usually a bolt from the blue, and are usually something that most families take completely for granted and you have come to accept won't ever happen with your child.
Last night we had a Magic Moment.
River woke at 1:45am screaming. He doesn't scream in the night often, but when he does it's impossible to resettle him. I left him for a few minutes to see if he'd settle before going in to him. I expected to go through the usual routine with him- giving him a cuddle whilst he carried on crying, then trying to put him back in his cot & leaving the room whilst he went berserk, then waiting another 5 or 10 minutes to see if he'd resettle only for him to become beside himself & get himself in a right state, then bring him into our room to watch a DVD quietly. After half an hour, we'd attempt to put him back in his cot which would usually end in a massive meltdown & being brought back into our bed. He'd eventually fall asleep after a couple of hours.

However, last night didn't play out like that.
I picked River up out of his cot & he clung to me like a koala bear. I sat on his rocking chair cradling him, tummy to tummy, his head on my shoulder. Then all of a sudden, he stopped crying. His breathing calmed and he cuddled into me. For the first time since he was a newborn, he was soothed and emotionally comforted by a cuddle. I thought he'd fallen asleep, but his eyes were wide open but he was just staring at the ceiling, or into space, or occasionally at me. We sat there for an age in the dark, with only River's calm breath breaking the silence.
After about an hour I told him it was time to go in his cot- and he howled. So I kept him on my lap instead, and he calmed again instantly. My heart felt like it could burst. I was tired, my back was killing me & I had a dead arm but I wanted to cradle him all night. Most parents get to take this emotional attachment for granted and at some stage will work on teaching their baby or toddler to self-settle. With River, it's the opposite- he has needed to be on his own to fall asleep for so long, and having this level of attachment is such a major step for him.
At 3am, I called to Tim through the monitor to bring the sofa bed in. Again, River will never normally fall asleep next to me unless he's been up half the night & is watching a dvd in my bed. But after about half an hour of flapping around his room, he laid down with me and fell asleep. He woke around every hour & cried out, but was instantly comforted by me pulling him in close to me & having my arm over his chest.
I'm knackered today, but it was magical.
THAT'S what I like to call a Magic Moment.

The ups & downs of having an autistic toddler.

We've had a lovely weekend, and River has achieved so much! There have certainly been lots of highs. Here are some:
-River ate jelly with his hands!!! This is a massive deal. River is tactile defensive, meaning that he won't touch any food or play that is remotely sticky, slimy, soft or wet. He likes everything to be dry. So we try to expose him to as much sensory input as possible so that he will hopefully become a bit desensitised to it. Some days it will be giving him a yoghurt or mousse (which used to take a good few hours before he'd even dip his finger in it, but he's much more brave now!) and other times it will be through play-doh (which he still won't often touch) or moon dough, sand, shaving foam, multicoloured spaghetti, washing up bubbles- the list is endless!
So anyway, on Saturday I decided to be a bit radical and attempt jelly. I put it in his messy play table alongside some moon dough (a 'safer' option in River's mind!) and sprinkled raisins on the top as an incentive for him (he loves raisins!) However, not even raisins were going to persuade him to him to touch THAT disgusting stuff. He got quite cross when he tried to use my hand to retrieve the raisins for him and I wouldn't, as this video shows:

I left it for a few hours, then decided drastic measures were needed- chocolate buttons. I sprinkled buttons on the jelly, poking some half in and others completely covered in jelly, then gave one to River to remind him how yummy they are. I could tell see the predicament in his face, but eventually- four hours after initially showing him the jelly-he tentatively reached in and pulled out a button! Half an hour or so later, he'd discovered that jelly was pretty scrummy and was eating it by the handfuls! He also ate some off a spoon (another challenge)

-We went to a public place without the buggy- River walked! We visited a garden centre this morning- it has a pet shop inside & River quite likes the guinea pigs, so the goal was for River to walk from the car to the pet shop & back without getting overwhelmed and panicking. It went better than expected- after the pet store we went to see the fish, then he happily walked around outside whilst holding my hand the whole time. We then thought we'd see if he'd step into the cafe- didn't have much optimism- and he walked in happily, then sat on a grown-up chair and ate his pot of raisins very happily whilst Tim & I had a coffee!!
It felt so 'normal' and relaxed. It was very noisy and busy but he wasn't at all fazed. He then walked back through the shop (we soon realised he's fine as long as he keeps moving, he doesn't understand the need to stand still to look at something!) and all the way back to the car. FAB!!!

-He walked to the shop!! River has been so brilliant at walking to and from nursery (most of the time) but to get anywhere else in the village (the shop, park etc) you have to walk past nursery. I've been really nervous about walking anywhere other than nursery with him in case he associates walking with nursery and has a meltdown when we attempt to walk past it, as it's not his usual routine! However, today, he walked past it to go to the shop and it was fine. Such a relief!

This is the stuff we have to focus on. This is the stuff that fills us with hope and makes us LOVE our little family and our family weekends. But for all the ups, there are lots of downs too. The simplest of tasks can be so difficult with a child like River in tow.

One morning this week, we left the house to walk to preschool. He had his shoes & coat on and I'd shown him his preschool PECS card, so he knew what we were doing. But as soon as we left, he spotted the neighbour's car. I think he must have thought it was our car, and wanted to go somewhere in it. To the average toddler, you'd tell them that it wasn't our car, and we had to walk to nursery. But River doesn't have enough understanding for this. He just completely melted down. He screamed & screamed and refused to move. Luckily, the neighbour then came out and went to work in his car, so I could say to River "car gone" and he could see it wasn't an option any more. It took about 20 minutes to calm him down. Another neighbour was leaving his house and said, "Don't worry, that phase only last a few months!" I smiled politely but wanted to say, "Actually no, it may not. It may last for years. You may see us doing this when he's fifteen. I can't just think 'It's only a phase' like most parents, because it may not be." Eventually I persuaded him to look at the birds on the field with me. He then cuddled into me for ages and didn't want me to move, which was a really emotional moment for me as River feeling comforted from our cuddles isn't something we take for granted.
Then there's his reaction to other children. He cannot stand them. Whether it's a newborn baby or a six year old, whether it's at our house or at the park or at a pub lunch, he just wants to hurt them. It all boils down to fear and anxiety- he can't control their noises and movements, which he sees as unpredictable, so he wants to stop them. He tried to get to a newborn baby in a pram the other day, and the mother looked at my like I was the worst parent- although I'm getting a little more thick-skinned when things like that happen now. Preschool tell me he's fine with the children there- I guess he's had a long time to get used to them and their noise and is good at shutting them out. But at home and everywhere else, it's getting worse. It leaves you feeling very torn- I know I need to just keep inviting friends with children round to try & build up his tolerance to it and build up his social skills, but it's very easy for 'autism mums' to become isolated- not wanting to invite friends round because a) you hate to see your child in such a highly anxious state, especially when they are becoming so lovely & affectionate towards you the rest of the time, b) you hate to see other children being scared of your child and thinking badly of them, c) you worry you won't be able to grab hold of him in time & he'll hurt the child badly and d) you worry that your friends will think you're not doing a good job, are dealing with it the wrong way.

I also feel guilty for not being brimming with optimism every time River makes progress. I feel like I'm going to burst with pride every time he achieves something and want to scream about it from the rooftops, but there are professionals that seem to see it as a sign that he is going to be fine as he gets older- that he'll definitely be able to cope with mainstream schools, that he has a bright future. I feel guilty that I don't have the same level of positivity. Surely as his mum, I should be able to see what they see? Or maybe it's actually that it's my job to make them see what I see?
The thing is, even if River is a very bright child and very intelligent, he will always be autistic. He will always struggle with social and communication skills, as that is what autism is. As far as mainstream schools go, it doesn't matter how clever or not you are, how intelligent or not you are- as long as you have social and communication skills, you'll get on ok. So where does that leave River?
Which is the right option- do we send him to a mainstream school, and run the risk of him struggling with anxiety every day, having an unhappy child, having teachers that don't understand him & his needs, but he gets used to being around people, learns to communicate and socialise and goes on to lead a perfectly 'normal' life?
Or do we send him to a special school that has teachers who are passionate about children with special needs, getting specialist help, he'd be in a smaller class, he could learn at his own pace, have access to so many special needs resources, sensory rooms/toys, but run the risk of him always seeing himself as 'different' and always seeing himself as separate from mainstream society, and not knowing how to get back into it?
He's currently in a mainstream preschool for 3 mornings a week- should I be pushing for him to be allowed to attend a special needs preschool for 1 or 2 half days a week? I think they'd probably say he's progressing just fine where he is so they wouldn't want to give him funding for the special preschool.

And as I said to Tim earlier- he certainly is progressing so much lately, it's absolutely fabulous and we're so happy- BUT it's still a million miles away from his peers. He has just started making a "chg-chg-chg" noise when we ask him what trains do, which we're ecstatic about. But he's 2.5- he's about 12-18 months behind on that. Yes, he's finally started scribbling- and now won't stop!- but he's about 12 months behind on that too.
I don't normally ever compare him to his peers- it's pointless really- but when people imply he should go to a mainstream school, with his peers, it does draw a direct comparison. And I just can't picture it just now.

So that's the latest from us- lots of really positive things, lots of progress, but when parenting an autistic toddler you can't ever really sit back and relax, because for every up, there's also a down.

Our little artist!

Here is River, taking his art very seriously. He spends around 90% of his day creating art, and is always very focused and serious.
I'm pretty sure he tries to say, "brown" at the very start of the clip, but it may be coincidence as he makes that noise a lot. Also, he's very good at picking the correct colours of crayons when asked in the second half of the clip.

We need your help!!

A few weeks ago, I found out about a fantastic charity called Hearts and Minds, who help support families touched by autism in the UK & Ireland. They are currently running an amazing "iPad Scheme" that we have joined.

Basically, if we can collect 165 old mobile phones for them they will give River an iPad. How amazing is that?

The benefits of iPads for autistic children have been widely reported. There are apps with recorded words & messages than enable non-verbal children to have a voice. The tapping and sliding of the screen can be an easy concept to grasp for children that can't write and can improve fine motor skills. There are apps to help with academic learning such as letters, phonics, colours, shapes and numbers as well as apps to help with social skills and emotions.

So this is where we need YOUR help- do you have any old phones hanging around? They don't have to be working and they don't need a sim card, but they do need a battery. We would be so, so grateful if you could either give them to us in person or post them to us (they don't need to be boxed, just wrapped in bubble wrap and brown paper would be fine.)

An iPad would be such an amazing educational tool for River, but at £400 it just isn't in our budget. If you have any old phones to donate, please either get in touch via Facebook or email me at gemeversden@googlemail.com

Thank you so much!!

Autism: One Year On.

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

http://aworldofspinning.blogspot.co.uk/2012/03/river-17-months.html

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. 

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.