So What Happens Now?

My son was diagnosed with mild to moderate Autism Spectrum Disorder , as well as ADHD, around 6 weeks ago.

So far,  I have written about receiving his diagnosis (The Diagnosis), and how ASD presents itself in my sons case (What does ASD look like, to you?). I’ve written about how my overriding emotion on receiving his diagnosis was relief: relief that it wasn’t something we were doing wrong as parents, relief that now we had a name we could find the right support, to try and make things better.

so what happens now jake view

In the time since the diagnosis, I’ve done quite a lot of reading as you would expect. Some medical texts, some blogs. I have come to a better understanding of some of my son’s behaviour, or if not to understand it, then at least to be able to reference it against his diagnosis. He misbehaves on holiday because he is out of his usual environment and finds transitions hard; he gets angry and lashes out when he is tired because it causes his senses to overload. I am piecing together a jigsaw, connecting the dots.

So, we have had relief, understanding – then came optimism. Shortly after the diagnosis we went away as a family for a weekend, and had a really enjoyable and relaxed time. A real rarity; so rare, I even blogged about it in the optimistically titled The First Good Weekend.

Of course, it was never going to be that easy.

For now comes the heartbreak, the despondency. The reality setting in. The realisation that this, even with support and understanding, is going to be hard. There is no turning away from this, pretending it’s not happening. We can’t coast our way through this, or take our eye off the road for even a second. Yesterday was a bad day. From the minute he was picked up from his School summer camp, he was moody, aggressive, uncooperative. Even though we now understand that this is, probably, because he is tired and struggling with the change in routine after the end of term, it doesn’t really make it easier to manage. And I am so tired. So tired of having to try so hard. I want it to be easier than this. I want to pick him up from camp and hear all about the amazing things he did, and the friends he played with, and for him to be excited to go back the next day. I don’t know what to do – how to make it easier for him, how to bring him out of the bad mood.

I don’t know how to make him happy – my son.

so what happens now

So what happens now ? Because we received our diagnosis pretty much at the end of the school term , it seems that everything in terms of formal support has closed down for the summer. Which is ironic really because this is when we are going to need the help more than ever, as we spend more time together as a family unit. Parenting classes will start in September, as well as some play based therapy for him. The School have done the necessary form filling to request Special Needs support for the next academic year. Two caveats here though; it definitely won’t be from September because we missed the deadline for that. In addition, it is by no means a given that he will get the extra support as the letter we received from the CAMHS clinic did not specifically refer to ‘SNA’ support, rather recommended he receive the ‘maximum support available to him’. Make of that what you will; we live in hope for now.

There are financial supports available; tax credits, allowances. I feel a fraud applying for these. If you met my son, you would think he was fine; well, maybe a bit grumpy if you got him on a bad day, but essentially fine. Surely these allowances are for children with physical disabilities, or more severe cases of ASD than my son. We don’t deserve them. And yet, do I think are daily lives are impacted by his behaviour as a result ASD/ADHD? Yes, I do. Do I think it’s more stressful than raising a child with no additional needs? Based on my experience with his sibling, yes I do. Would we do things differently if we had a little more money to play with? Yes, certainly. So we will fill out the forms, with guilt, that we don’t deserve it, and trepidation, that it will be refused.

We will carry on down this road, eyes fixed firmly ahead.

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20 comments

  1. You can also apply for DLA and Carers Allowance. Don’t feel bad about this. You need all the help you can get when raising an autistic child. For a start, they require ‘aids’ which are expensive but invaluable in keeping them calm and if you want to take your child on an autism friendly holiday, it costs a lot more than it would normally. They have needs and requirements which neurotypical children don’t. You are on a journey but you’re not alone. It’s a rollercoaster but we’re all in it together to support each other. Really nice to meet you. X

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  2. I can totally relate to these feelings and you voiced them really well! It is harder emotionally and physically to parent a child with additional needs. Such a shame all help has shut down over the summer as you are right the lack of structure can be a real challenge! Good luck you have a whole community of fellow SEN bloggers behind you!

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    1. Thank you Catie – yes lack of structure is a real struggle ..we will be the only family counting down days till September !

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  3. Yuk I can indetify with the lack of structure during summer holiday. It is one of the toughest times I think for a majority of autisitic children. You need the money to help aid making your little stressful. You can look at your child but with autism you never know as it is constantly fluid on how the person is going behaviour. X

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  4. Oh, I know it must be such a winding and confusing road after receiving a diagnosis like that in one of your children. But please don’t feel guilty, because these funds would be going toward helping your entire family cope with a difficult diagnosis. It could help with different therapies, or things your son might need in the future. I wonder if there are groups for mothers of autistic children that could help you learn resources available to you all. Sending you love on this tough journey! ❤ #KCACOLS

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  5. I hope everything gets sorted for you soon, even with the summer close downs! And don’t feel guilty about applying for anything – that money is there to help all of you give your son the extra support he needs. (And if they turn you down first time, never be afraid to try, try, try again!). x #KCACOLS

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    1. Thanks Jess, all support gratefully received !

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  6. A really interesting read. I hope you and your little boy find the support he needs and please don’t feel bad about applying for the extra money. It is there to make his life better and yours a little easier 🙂 #KCACOLS

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  7. I am imagine it would be hard over the summer without the extra support and help. I don’t know anything about where you live but here in the US kids services are usually covered with insurance to get help at a community based center even in the summer. My toddler is terrible with any kind of transition in his day and it can be so exhausting. I hope everything works out with him getting help from his school! #KCACOLS

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  8. Don’t ever feel guilty be the you and your famild are fully entitled to every cent and minute of support available, I admire your courage and honesty as you all transition to this diagnosis. My heart and thoughts are with you, your strong your brave, you will manage #KCACOLS

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  9. How awful that support seems to disappear over the summer holidays. I really hope you get the support you need to help you #kcacols

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  10. It must be such a rollercoaster of feelings. Such a shame that the support is not available over the summer having been diagnosed at the end of the school year. That seems a bi of a gap, as it is obviously a time requiring more support with the disruption of routine. Hope you are able to get the support in place soon.

    Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday

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  11. I hope you get more support as time goes on. My son is being assessed at the moment and I can recognise some of the lashing out because of changes in routine etc. that you mention. I relate to where you say that you were worried you were doing something wrong as parents. I’m sure you are doing a great job and dealing with the ups and downs as best you can. #ablogginggoodtime

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  12. alisonlonghurst · · Reply

    I wish you the best of luck with getting the right support, including monetary (no guilt required). I really feel for you embarking on this journey. Parenting is hard enough, without added struggles and stresses. I’m going to share this, because I really feel others may want to reach out to you, either to give support, or gain support from someone going through a similar situation. Alison x #ablogginggoodtime

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    1. Thanks Alison, really appreciate that

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  13. Our family has had a similar experience. I would say that one of the most important things to do is fight complacency. There are always multiple ideas/methods to try and you never know when one will work like a charm. Good luck to you and your son. #ablogginggoodtime

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  14. I hope your son settles back into school well and gets support there soon. I have four children and my eldest son, Edward was diagnosed with autism aged 8. Life always got a bit easier if I could farm one of them off to grandparents for a few days during school holidays but life got loads easier if it was Edward’s turn to go. For us, life has got easier as Edward has got older and I hope this turns out to be the case for your family too. #ablogginggoodtime

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  15. This post was hard to read because I hate to think of you having to deal with such an overwhelming situation. As you say the diagnosis is a relief in one sense, but frightening in another. I have no experience of autism so I’m afraid I can’t offer any words of wisdom. Only to say please don’t think you can’t make your son happy. He may not always show it, but you’re his rock and his safe place. Really hope the school sorts out sufficient support. x #ablogginggoodtime

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    1. Thank you Kirsty. It’s ups and downs. He’s done quite well settling back in school this last couple of weeks so that’s a positive. Thanks for the support – I really appreciate it

      Liked by 1 person

  16. Keep looking ahead and dont forget to ask for help its always out there. Catie from An imperfect mum would be a good someone to talk to!
    Thanks for linking to #ablogginggoodtime

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