Moving on from the ASD diagnosis

The title was the most appropriate that I could think of, you don't move on from a diagnosis of a disability in the sense of closing that door and moving in a different direction, but everyone in the family has to learn to live with it. Most of all, my husband and I, we have had to do reading and reach out to learn more about ASD so that we can be the best parents we are able to be. We are in training as such, but with the best will in the world, you can read every book, article, journal or research paper, but in all honesty there is only one person in the world that can teach you all that you need to know, and that is your child. Your child's autism is specific to them and although they will display similiar behaviours to another child with the same diagnosis, no two children with autism are the same. 



It has been a roller coaster since Noah was diagnosed in December 2015 and a learning curve for all those that are involved in his life, making adjustments to our routines so that he can have less frustration and confusion in his life. After being diagnosed in December, we enrolled Noah in Nursery in January 2016. We started him on a reduced timetable to support his transition and only in April, did he progress to 5 mornings of 2.5 hours per week. As Noah is one of the youngest children in the academic year, he will be at preschool age in September this year, we have a choice of whether to keep him in his current setting, or look and apply for a school nursery for him to spend the next academic year. We had many discussions about this, with each other, the nursery, KB and we have decided to keep him in his current nursery for another year which will be until he starts reception class in September 2017 (what the hell, as if my baby is nearly school age!!) It was a tough decision but the way we look at it, is he has taken since January to build a good, trusting relationship with his key worker who is absolutely amazing, and realistically I feel we would be doing more harm than good moving him to a new setting, which will likely have more structure with it being a school nursery. He is just not ready yet. 

The thought of having to make the decision between special school and mainstream by ourselves, terrifies us, the general attitude is to start children off in mainstream and then move them to a special school if the child doesn't thrive in mainstream. I have a couple of issues with this, I know that my child would be bullied in a mainstream primary school, he is non verbal, has significant social delays and prefers his own company, he has no interest in other children at all and I have an image in my mind (as possibly most parents do) of him stood in the corner of the playground on his own. We have so little information from anyone, how long would we be expected to leave him in mainstream before we make a choice to move him to a specialist school. Speaking to the few people that we are able to within the education system locally, they have all said that it is far easier to move to a special school than it is to move to mainstream from a special school, which I can appreciate but I have to wonder whether the reality is that if you send your child to mainstream school it saves the local authority quite a few pennies. As is much the same across services all over the UK, it does unfortunately all come down to funding, which there is not enough of for disabled children. 



The paediatrician has given us a 12 month open appointment which we can choose to use or not, and then Noah will be discharged and we would have to be re-referred through the GP if we wished to access the paediatric services again. Some may say that this is a good thing but after diagnosis, the doors to support services have not opened. Nobody has signposted us to services or offered advice at all. He was diagnosed and then treated as a closed case. I have read posts from other bloggers whose children have been diagnosed with autism and they all read the same, no support services, no after care and no advice. I think as parents generally we tend to wing it and find our own way, and most cope just fine. But, when your child has additional needs, being left to your own devices sometimes feels like time wasted. An example of this is the state of speech and language services in the UK, which I have moaned about before. Noah was referred in April 2015, and here we are in June 2016 without a word from them and after calling them I discovered that it is unlikely Noah will be offered an appointment in the next 3 months, that was in May. I regularly say that if he was provided with the service when it was assessed as necessary, we could potentially have made some progress by now.

It is a lonely and frustrating time, pushing (and waiting) for services and support, but at the moment our boy is leading the way and we are making changes and adjustments as we go. The progress is slow but it is PROGRESS, and we are happy in the least that we are moving in the right direction and he is achieving milestones, not ones for his age but milestones none the less. 


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Sons, Sand & Sauvignon
Sons, Sand & Sauvignon

Comments

  1. A truly inspiring post. I'm a secondary school English teacher so, with older children at least, I can certainly relate to many of the issues you describe here. I would agree with the argument about being easier to move to a specialist school from a mainstream one, rather than the other way round. I think you just have to get local recommendations on the schooling available. Some mainstream schools are far better equipped to deal with ASD than others as they often have a higher number of qualified learning assistants who have undergone specific ASD training, some have none. This can obviously make a big difference. What I would say, is that those who I see day in day out in the secondary sector often thrive in mainstream education and leave school happy. I hope this helps.
    Potty Adventures
    #bigpinklink

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    1. Thank you! It is such a difficult thing to make these decisions when we feel so unprepared! I will definitely take your advice on asking local mainstreams what resources they have to decide their suitability. Thanks again x

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  2. My son has just been diagnosed. And its so true what you say about the reading. I have done a lot of reading now, and whilst it has made sense of some of his behaviour, its obvious that we need to watch him and be guided by him - as you say all thoe with a diagnosis are different.

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    Replies
    1. It is a difficult journey and I wish you all the best - may our children lead the way x

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  3. Brilliant post and very honest. This I am sure will help someone in the same place as you. Thanks for linking up to #JustAnotherLinky xx

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  4. This is such an inspiring and emotional post. Thank you for sharing a bit of your journey. I don't know much but this has definitely opened my eyes a little. You have said it well - "there is only one person in the world that can teach you all that you need to know, and that is your child". Thanks for sharing with #bigpinklink

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  5. I totally understand. It's such a difficult decision. When my little boy was 2 1/2 he was non-verbal, had not reached many of his milestones and had only just started to walk. I was asked if I'd like a place for him in a pre-school two days a week. At first I though this was in a special school, but it wasn't, it was just a normal pre-school place and the health visitor thought it would help him. It did, he thrived and by the end of the year he was on par with his peers. I know it's natural to worry, but at young ages you don't really get bullying. You always get the nasty kids who find it difficult to interact kindly with others, but they don't discriminate like older kids. Mixing with others can be beneficial at a young age. My boy learnt so much. Unfortunately, it does appear that he is having problems now that he is in year 1 and older, not with bullies, but with coping, but that's a whole other story.

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  6. Hi nat intresting read ...please think carefully about little mans schooling ...tyler went to secondary mainstream school even though i repeadly said he wouldnt cope ect ...i was told he would be fine ...wrong....he spent two years misserable ..unable to compete in things incase he was a danger to himself or others ..he never once participated in sports day had an authorised day off ...because he could be a danger to himself or others ...he is now 5 years academically behind and is at a hands on short stay school max 7 pupils until we can find an appropriate school ...on going ehcp battles ...when he should have been on one before now ....i hope u find a lovely school for ur little man xxx

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  7. Hi nat intresting read ...please think carefully about little mans schooling ...tyler went to secondary mainstream school even though i repeadly said he wouldnt cope ect ...i was told he would be fine ...wrong....he spent two years misserable ..unable to compete in things incase he was a danger to himself or others ..he never once participated in sports day had an authorised day off ...because he could be a danger to himself or others ...he is now 5 years academically behind and is at a hands on short stay school max 7 pupils until we can find an appropriate school ...on going ehcp battles ...when he should have been on one before now ....i hope u find a lovely school for ur little man xxx

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  8. I absolutely love this post Nat and feel very much the same. Hayden was diagnosed in November and whilst it was no surprise, the support I expected hasn't really shown itself in all its glory. I think you have made the right decision regarding his nursery setting. Obviously everyone is different but we were very much of the mindset of starting Hayden off in mainstream school. The children at that age are generally so accepting. Hayden has one or two little friends he will engage with on his terms but there has been no signs of negative behaviour from the other children. I class Hayden as pre-verbal now but when he started in September he was pretty much non verbal. When looking at schools look at their provisions for SEN children. Our school have a long list of high needs children so we felt they were going to do well with Hayden, however that hasn't been the case. It isn't how the other children have been towards Hayden but the school in general. Don't rush your decision, and look at all the options. But don't ever feel you made a mistake with a decision. We are all learning as we go. Thank you so much for linking up to #spectrumsunday. We are back at 5pm today and I really hope you can join us again. xx

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