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 fiancée. 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.

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.

Bliss!

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.

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.

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!

Therapies and interventions.

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

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

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

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

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

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

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

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

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

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

Success!

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

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

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

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

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

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

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

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

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

Guilt.

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

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

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

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