HELP I CAN’T COPE TODAY - ASD (Autistic Spectrum Disorder)
HELP I CAN’T COPE TODAY - ASD (Autistic Spectrum Disorder)
When I set Spikey Mama up last year, there were a few reasons for this. The most important one, was to try and educate on autism to others, because we are fearful of what we don’t know and we know so much more than we think and maybe just maybe along the way, I could help others on their journey with ASD.
I have always said and want to underline here that I am not an autistic specialist, in fact I am going to be honest with you. I think you could travel the planet and not find a human that knows everything there is to know about your child’s form of autism. The autistic spectrum is vast, its like a black hole of complex and in most cases, misunderstood needs. Not one diagnosed autistic human is the same.
Our commonality is that a person in our care has ASD (autistic spectrum disorder) That might be one foot on the spectrum, both feet firmly on it, fully immersed in it and all the highs and lows that brings. That one thing is that, on any given day, it can be the most stressful, anxiety ridden, heartbreaking, soul destroying and lonely place to be.
Some days, we need a panic button. A ‘I want off this ride now’ button. When for whatever reason, your tipping point has been reached and you quite simply cannot cope at that moment, on that day.
I have created this, in the hope, that it may help you swim your way back up to the surface. Give you enough time to take a breath, to enable you to realise, that ‘you’ve got this’. Because, you really have. Truly you do.
Your tipping point has been reached. You don’t think you can cope anymore.
Firstly, you are stronger than you think.
Secondly if you are absolutely at end of your tether and can see no wait out, STOP, please. There are people that you can talk to right now.
SAMARITANS 116 123
MIND 0300 123 3393
NATIONAL AUTISM HELP LINE 0808 800 4104
Or do nothing. Wait, sit it out. Do what you have to, to get you and the child in your care, safely though the next 30 mins- hour, day…. IT WILL PASS.
Remember ,control the controllable
See below a few pointers I’ve brain stormed that maybe able to help.
The meltdown/panic attack
I can’t stop these melt downs, I can’t cope….
Are you in a safe place? A commonality is that these take place whilst out. Do what you have to do, to get back to the car/home/place of familiarity.
No matter where you planned to be that day, it is likely that they will have to be changed or at least tweaked.
Help: is there someone that can help you?
Do you have an emergency list? If not when you able, write one. They’ll need to be humans you trust with your life.
Imagine for a moment that the child you are caring for is not yours, its so much easier when there is less emotion involved. If this helps, use it and get home/back to the car etc. I appreciate this is a big ask, but try and remove the emotion. To do that it helps if you imagine you are the carer not the parent of this child.
Depending how long you are in to your journey, this will be a bigger/smaller problem for you. It is out of your control. The only controlling factor you have over this is how you react to their judgement. Complete black out of it, is the best advice I can give.
Pretend they are not there.
Every single child’s behaviour is related to how they are feeling, they are communicating. It does not necessarily mean that you are doing anything wrong. But it is communication
3. post melt down
Don’t try and un pick the behaviour during these melt downs. Its pointless, it will make you angry and your child is quite simply unable to answer your questions.
Document these melt downs, especially if they are regular.
Keeping a diary is hard, so just get a piece of scrap paper and throw it into a box.
Write down where it happened. When it happened. What you think may have been the tipping point.
For the short term at least, lower your expectations of you child.If these tantrums are happening out and about, tweak where you are going. Re look at your plans. Can someone have them if there somewhere you need to be.
No one thing can make these episodes stop, but with the right help, they may get less frequent or you may find the panic trigger for your child.
4) No one will listen to me and I know theres something different about my kid
First stop your GP
If you have already been there they are likely to have told you to document everything.
If you haven’t then do this. Turn up with a 2-4 week diary of melt downs, differences, lack of communication, eye contact, not responding, not wanting to play/get involved.
Persevere, if you adamant that there is something different, be heard.
You will need a referral to be assessed by your local authority (county) this will be a long and difficult wai
5) I have a referral but they have said I have to wait 6-12 months and I’m struggling
How quickly you are seen is dependent on many factors, firstly and most obviously, when you were referred, secondly how worrying or severe your child’s behaviour and your circumstances. You should have been given a number to call, keep calling them, they will have to document this.
Should of is one thing, the list they have of children waiting for diagnosis is endless. For everyone of you reading this, trying to help your child, there are countless kids with parents who are barely able to care for themselves. It is an incredibly sad inditement of the times.
It took them 2 years to even see Matilda and as frustrating as that was, I can completely understand why.
6) what do I do in the mean time?
Treat your child as if they have been given the diagnosis and see if this helps change their behaviour.
There are other articles on this blog that document that may help.
Also I’ve done a separate books worth buying piece.
7) IF YOU DO NOT LOOK AFTER YOURSELF, YOU WILL BE UNABLE TO CARE FOR ANYONE ELSE
At some point that human that you are looking after will sleep/go to nursery/school/be watched
by someone else.
Take time for yourself. It might be a miniature amount of time, just sitting in silence. Reading a magazine. If your lucky a night out with your mates. Something that makes you remember what it feels like to be the human that you were, the human that you still are, before you made another one.
There is countless other bits of info that I feel I could add here, but I am very mindful that my blogs are not too long. This is already over a thousand words which is way longer than I had wanted it to be and even then I don’t think I’ve covered everything
Please remember, my expertise is my daughter. There is no magic bullet here. No one human can ‘fix’ this, but the more knowledge you gain, the better life will be for you and your child.
EDUCATE YOURSELF AND EDUCATE OTHERS
AUTISM IS NOT A LABEL, ITS A SIGN POST FOR EVERYONE ELSE