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.