Thursday, 21 March 2013

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. 


  1. So so much of this feels so similar to what I am going through right now especially this '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.'
    You are so so brave to admit you are struggling. You are right that you shoud get the help you need for you. I think we easilly become so wrapped up in trying to work out what our children need and fighting for the help for them that we forget what this is doing to us. Dealing with your needs is just as important. Although it often feels that you are, you not alone.

    PS. What noise does a hippo make?

  2. Hi, I dont usually comment on blogs but reading this I just had to say to you, well done for asking for help. If it is out there to be had then take it. Having dealt with social services I know that they are there to help you and you might be surprised at what help you can get.

    I also understand the fears of dealing with social services and even though it's a different issue with me, I have found them to be incredibly helpful to the point of changing my life for the better.

    It also takes courage to ask for help, we always want to work things out for ourselves.Again Well done for taking this step.

    Mandy. xxxxx

  3. Hi Gem,

    Once again your blog has reached right into my heart and I stand in absolute awe of you and Tim.

    Your honesty about the whole package of parenting River, good and not so good, your strengths and your weaknesses, is something that I feel so much respect for.

    Asking Social Services for support is so positive and to my mind a sign of your strength and commitment to being the best parent/s you can rather than a weakness. I hope Social Services are able to give you some useful support, you all really deserve it. Incidentally, many mothers of "normal" two year olds do not cope as well as you think they do. It shames me to own up to the fact that when exhausted and frustrated, I used to lose it sometimes with mine when they were little and then feel horribly guilty. In fact I still do feel guilty. Whether our children are 'normal' or have 'additional needs', parents are all human and just doing the best they can at any given time. Even with your normal human frailties you and Tim are doing a bloody god job!

    Lots of love to you all

    Penny xx

  4. There's no such thing as a perfect parent, or perfect child for that matter. We all do our best and sometimes we fail, or feel that we fail as we don't 'do' what we think is the right thing ... but generally there is no right way .. we simply 'do our best'. Your blog serves as an inspiration for me as a parent because it shows me that I'm not alone in feeling vulnerable and unable to cope sometimes. Be easy on yourselves - trust me - you are doing a fantastic job. Huge hugs, love and virtual snogs. Martyn

  5. Hi,

    My name is John and I have a quick question about your blog! Could you please email me?

    Thank you,