Aspergers and PDA

sunshineflamingo

Hi I am a single parent of a 6 year old with suspected Aspergers and PDA. 
We are going through the assessment process with our first appointment with the paediatrician in a few weeks after the doctor send an urgent letter. 
I struggle mostly with my sons violent meltdowns.
I am at a loss with how to actually keep myself from being hurt. I cannot leave him alone during a meltdown, I have tried shielding myself with a cushion, positioning myself side on. When he is in a meltdown there is obviously no calming or talking to him, it needs to run its course then he is absolutely shattered and has sweated through all of his clothes. 
The surge in adrenalin in this fight or flight mode makes his punches and kicks even worse. 

I am aware of his triggers and sometimes even that isnt enough to stop a meltdown as certain things are out of my control. He doesnt transition well between activities and is happiest in his bubble at home being in control to help his anxiety. 
He does not respond well to visual aids and actively destroys them. 
I am able to stay calm, I can see the meltdown is due to high anxiety and fear, its heartbreaking to see. Any advice on how best to support him during a violent meltdown would be great.
We have a calm down space in his room also. 
We now homeschool due to his awful depression and anxiety at school. 

chiarieds

Hi @sunshineflamingo - I just want to reach out & say I'm so pleased you have joined this community. I'm dreadfully sorry to say I don't have any answers but I will ask the Scope team to help tomorrow. This must be so difficult for you; you sound like an amazing Mum who's doing everything possible to help & support your son. You also need to be kept safe tho, as you realise.

sunshineflamingo

Thankyou for your response and support. It is a very tricky situation and not helped by the battle to even get a child seen and assessed for Autism. 

brilliantj

Hello sunshine, I am so sorry to hear what you are going through.  I don't know if you've heard about Non violent resistant parenting?  I teach it in Southampton and it is a vibrant community of parents who support each other, using non-violent resistant techniques.  Ask CAMHS for a referral (they should know someone who can help you).  You sound really switched on regarding his triggers, but always remember your own safety is paramount.  Can he throw soft pillows/soft furnishings?  I don't know if you have other children, but of course get them out of the way first.  I know this sounds hard, but remove yourself from the room.  Your presence is giving him something to aim at.  Things can be replaced and you can't!  When he has calmed down, sit in his space (yes amongst the chaos if need be) and if he lets you near, sit next to him.  Explain that you still love him and understand how he is feeling, but these are your things and it will cost you money to replace them. This means that there will be less money to spend on him and the things he likes. Then very gradually get him to help you clear up the mess.  Don't shout, blame, and even though you are fuming inside, be calm and do it together.  This will build your parental presence and will reduce him seeing you as a "target".  When things are calmer give him a strategy to use like "these are your pillows, soft toys, garden etc and that is where you go when you are feeling out of control.  If he can't read, make him a social story (with pictures) about trashing the place and hitting you.  Something like, "sometimes we feel very hot and we get really angry (picture), this means that our heart is racing really fast and we want to hit someone or break things (picture).  Everyone one feels like this occasionally, but it is our house rule that we do not hurt people or brake things (picture).  Mum/dad/brother/sister (etc) live in this house as well and we all need to look after each other.  I will be talking to (nan, grandad, friends, teacher - whoever) about things that you are doing which make us sad.  They all love you and will want to help.  (This is a technique that takes the problem outside of the house and thus removes the control of the child over the household).  This will probably strike a chord of horror in you as the parent, because my guess is at the moment you are trying to "keep the problem within the household".  If you get a diagnosis, things will not magically change and you will not get loads of help.  You might think that the school will provide him with extra support because he has a diagnosis, but you will have to fight tooth and nail and even then, it won't be much.  I do think non-violent resistance parenting will help you, but you might need the support of other parents going through the same thing.  The main thing to remember is, he is your lovely little boy and it's the condition that you are dealing with.  It's easy to target the child, but look through his behaviours and see him for the lovey boy he is.  This will help you deal with his behaviours and not beat yourself up about being a "bad parent" etc.  Remember, this is not bad parenting and you are not a failure.  You are dealing with a child whose brain works differently and sees the world differently.  Don't try to do this on your own (he won't always be six and when he's 10 it will be a very different story).  Wishing you the best of luck and big hugs xx

chiarieds

@Adrian_Scope please would you also advise this Mum, thank you

Adrian_Scope

Hi @sunshineflamingo. Thank you for posting here. It really sounds like you need some support. I've consulted some colleagues about your situation given what you've said and I think it might be worth you getting in touch with our Navigate service. You can read all about that here: https://www.scope.org.uk/family-services/navigate/ @Matt_Scope might be able to tell you more about this.

It also might be worth you taking a look at Autism support charities local to you in case they offer any services that might help. In addition, there's also the Child Autism Helpline who might be able to recommend some avenues of support. You can call them on 01344 882248.

I'm going to tag in @SparkleSheffieldAutismAdvisors too in case they're able to make any suggestions.

sunshineflamingo

Thankyou everyone. I will ring the autism helpline in the morning.
 
I cannot leave my son alone during a meltdown as he has hurt himself before during an episode. The violence isnt limited to home it can happen when we are out and about like near a busy road, or in a supermarket. 

I have tried discussing with him how he can use pillows to hit, he has a sensory den, we have discussed it with my dad around also saying it makes us sad when he hurts mummy. 

When he is out of the meltdown he is distraught he has hurt me. 
We have yet to see CAMHS our first appointment which I have had to fight for is with the child paediatrician.

I have signed up for the 6 week service with Scope but I couldn't get through today to confirm a start date. I will try again tomorrow. 

chiarieds

@sunshineflamingo - Hi, the Scope team are really good at finding great resources. You can ring the Navigate team between 9am & 5pm tomorrow.

Please know you can also talk here any time; there's usually someone about, & it will always be good to hear from you. All this is as upsetting for your son as it is for you. I've also been there, as have others here, fighting for what your child needs; but you're a determined Mum too, thank goodness.

sunshineflamingo

Thankyou. I find it more distressing seeing my son going through it and only now thinking ok I'm getting bruised here I need a plan. He isnt going to be 6 for ever. All I see is a scared little boy when he is having a meltdown.

chiarieds

As a Mum you put your child first, but you can't go on like this forever. He needs you, & as you say you need a plan; some form of support, so that you can continue to be there for him. Don't know what to say other than tomorrow is the beginning of some hope, & support for yourself, so that you can better help your son.

chiarieds

Hi @ sunshineflamingo - How have you got on today? Hope you've got somewhere with Scope's Navigate to get a start date, & the Child autism helpline.