Reaching out

Yesterday we had a much-anticipated meeting with Autism Outreach. The meeting was at home, without B. This was something we had been very eagerly awaiting. Since getting the diagnosis, we have made a great deal of progress, both in terms of getting support for B, in helping him develop and in learning to accept the situation. But we have largely been groping along in the dark, learning as we went, with no real guiding light or focus or understanding. Emotionally we have struggled. I’m learning the limitations of being able to wear a brave face and my wife has teetered ‘on the brink’ for a while. She has described feeling ‘heart broken’ and feels she is grieving for the child she thought she was going to have and will never have. The situation with school has caused huge anxiety and the many nights filling in forms and writing accounts of his problems have taken their toll.

We have reached out for help but found it difficult to find, or rather, to be able to handle. I have thrown myself into reading books on autism. This helps a great deal but also increases your awareness of the enormity of B’s situation and the lifelong consequences. My wife cannot pick up these books but is well-informed about autism. She works with some children on the spectrum and has inevitably sat across from them wondering if she is looking at her future. The day after diagnosis I attended a meeting of our local autism support group. I found it harrowing. Too soon. Too much to take in. SEYS and SALT continue to work with B but are mostly rather remote and at times even unhelpful organisations. Actually, that’s unfair. They have without doubt helped B. What I guess I’m writing about is helping us, his parents, to learn how to help him. It doesn’t matter how many books you read. Understanding what to do next, how to help him, how to avoid making things worse for him, remains difficult. What we need is help. Someone to take us by the hand and tell us it will be okay; he will be okay. Someone to answer every question I have and solve these problems with school. Someone to stop my wife having an emotional breakdown.

Ahead of the meeting, we started to look towards Autism Outreach as being the answer. This, of course, is a ridiculous expectation. To expect them to somehow come along and ‘rescue’ us, to solve our problems, to make everything all right… This is not a realistic or fair demand of two people who have met my son twice. Nonetheless the meeting grew to carry great significance for us, as parents. Ahead of the meeting we both felt anxious. We had gone through our now familiar routine of typing a list of questions. Other question lists I’ve posted have been useful to readers. These are probably too specific to our situation but I thought I’d post them anyway:

  • Is mainstream school the right place for B?
  • What other options do we have? Outside the authority?
  • What do we do about the school wanting part-time?
  • Is support likely to cover break times and lunchtimes?
  • Should we write more for the statementing process?
  • What, realistically, can we expect from a statement?
  • What was the nature of the training AO gave to the school? Who attended?
  • What are AO’s observations on B’s abilities and needs?
  • What strategies and interventions can we do as parents over the summer?
  • Are there guidelines for writing social stories and in what contexts should they be used?
  • What are their opinions on ABA/VB therapy? Should we push for provision?
  • What are AO’s observations following their audit of the school environment?
  • How do we use the photo book?
  • How do we tell his brother?
  • What strategies can we implement for helping B develop skills in self management (dressing, washing, having belongings)?
  • What will be the nature of AO’s support from September?
  • How can we use visual timetables and work systems more effectively?
  • What events, programmes etc can we attend? Grandparents?
  • To what extent will AO work with the other agencies involved?

I suppose these are all fairly generic questions. The things we really wanted to say are not on the list. What we really wanted to say was, ‘Can you wave a magic wand and make it all okay? Can you help us to stop feeling like shit?’

And you know what? They did.

I’m not sure they will ever know how important the three hours they spent with us were. I needed so much for them to make me feel better about things, and they did. After all the time feeling lost and in the dark, to finally to have someone there for us was such a blessed relief. This is the first time I have felt like we have the support of someone who really knows what they are doing. Someone who is totally in our corner. Who understands. The magic wand does not solve a whole number of problems, but it does give us the strength to fight those problems. It has made us better and that is quite an achievement.

The minute details of the meeting have no place in this blog, but I will try to give a flavour of what was said. The two AO visitors have both met B and made observations on him in his nursery setting. It could not, therefore, be said that they know him particularly well based on these brief meetings. And yet I got a real sense that they did know him. More than anyone we’ve met, they just seemed to understand him. They understand the complexities of his language use, the things that motivate him and the things that distress him. Or rather, they know why these things occur. They have, it seems to me, been able to quickly get B, in a way that others have not. They also made it clear that they thought he was utterly adorable. If I was being cynical, I might say there is a certain level of professional skill in them saying nice things. It is their job to make us, his parents, feel good. But I think it went beyond this and I sensed a genuine warmth and affection for my son. They told me how bright he was, how sweet. After all the time spent focussing on his problems, it was fantastic to have someone sitting there telling us he’s great. Of course, we know he’s great already, but it’s nice to have someone telling us that too.

They were also fantastic on a more practical level. How will B cope in his first weeks at primary school? By having them there with him, all day every day for two weeks. How will the staff cope with him or come to accept his needs? By having training days with Autism Outreach, one of which has already happened. How will B cope with the transition from nursery to school? By using the social stories and photo books of the school they have already produced.

Amongst the things they told us was that, emphatically, he should go to a mainstream school. He will have many difficulties, but it is the right place for him (full-time). In fact, they felt his advanced ability in reading and general brightness would make him a challenging child to keep from getting bored. The teacher will need extension activities, they said. I know he’s bright but still this was a surprise to hear. Academically, they said, he is ahead.

Of course, in many other areas he is behind. Autism Outreach stressed the absolute necessity for him to have full one to one support. He will need it. Whether it be getting dressed for P.E., washing, toileting, managing his belongings, he will need it. At playtime and lunchtime, he will need it. These are not problems that AO can solve, but they are there to support when needed.

There were many other things discussed. All of the questions were addressed one way or another. I’m not saying Autism Outreach had all the answers but they made me (us) feel so much better. This was a lot to expect, but I feel more positive than I have in a while. Knowing they are there is a great comfort. Not the answer to all B’s problems, but probably the most significant help he will get in this whole process. We’re very lucky to have them on board.

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8 Responses to Reaching out

  1. kwhiting644 says:

    I’m happy for you. It sounds like you have a great support system there.

  2. V says:

    We are facing something similar. Right now my son is in a special needs preschool and doing great. We are also going to more than likely be mainstreaming him in kindergarten when the time comes up. Its great that you have such a good support system in place!

  3. Your autism outreach team sound absolutely brilliant – I wish we had had that support all those years ago. We’ve had to wait a long time to get our son the support he needs but now that he is in a specialist ASD school I identify with many of the things you say. The warmth of the people involved in our son’s education and care, their understanding of ASD and how it presents, their willingness to listen and respect us as parents. It has been brilliant.

  4. ben says:

    Hi there, my son (was 2 in March) has been diagnosed with ASD. Somehow, he also already seems to have a SEN based on a paed and SALT meeting in May, although I’ve not looked much into statementing. I was interested in your experience with Autism Outreach. Is this an organisation anybody can get in contact with? And if so, could you post details? Have read quite a lot of your blog today. Very helpful. Many thanks, Ben

  5. RH says:

    Hi – sounds like we are in a very similar situation to you and your wife after our son was recently diagnosed. Who are Autism Outreach? Is this is a service provided by your LA? We have many of the same questions that you have (especially regarding ABA) but we are reliant on advice from a local charity/autism trust.

  6. B's dad says:

    Wow, I assumed every borough had some sort of Autism support department. A quick google came up with several boroughs that have similar services but it doesn’t seem to be a nationwide service. Surely each borough must have some sort of department that supports asd? I feel even more lucky now to have that support.

    Ben- although your son is very young, I would not hesitate in starting to push for a statement. It is a slow process. If only we could have been six months quicker we would be in a much better position now.

    RH- I’ve read lots on ABA recently. It has strong support in the States. Autism Outreach were not advocates of it.

    • RH says:

      Thanks. The sad truth is that our London Borough provides very little in the way of post-diagnosis support and therapy. Our son receives SALT, but less than one hour every couple of months and a fortnightly portage visit. We have very recently secured six hours per week of SEYS starting in September. That is it as far as the Borough is concerned (and we are told that our Borough is one of the very best in London for ASD support). Terrible. We do however have a wonderful autism charity based close by who deliver a series of training courses for parents, grandparents and carers, as well as organising conferences and events for the children. Despite the efforts of the charity, the total provision simply isn’t enough, nowhere near enough, which is why we have invested so much time researching other therapies. ABA looks to be the one best suited to my son’s needs for a number of reasons. There’s bags of evidence that it works in many ASD kids. It’s a mainstream therapy in the US, but over here the healthcare professionals are sceptical; and you only have to skim through the SEN pages on mumsnet to see ABA has many detractors. I still don’t fully understand why when all the published / peer reviewed evidence shows it works for many ASD kids. The only conclusion I have drawn is that it must come down to money given the different approaches to healthcare in the US and the UK. My view is that LA and Health Trust officials won’t support ABA because it is expensive to deliver and a fear they will be quoted by parents trying to secure LA funding through statementing etc.

  7. Louise says:

    Thank you for this post, its really informative, we live in Bristol, we have two little boys too, our youngest boy is 3.5 and has speech and language difficulties and is having the CAP (Cognitive Assessment Programme) in January to get the diagnosis, likely to be ASD. I feel a little better after reading this as we have been told we will also get access to Outreach if he gets the diagnosis.
    Would just like you to know that your blog is really helpful and I can relate to so many of your posts. Good luck with the statementing process I will keep reading to see how you get on.

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