So you think your kid is different

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First of all, it will be ok. It has to be, because the kid is yours, no one else knows or loves her or him as much as you do. You want the best for them, remember this when you’re feeling guilty about ‘missing signs’ or ‘worried about other’s reactions’. None of us wake up on any given day and proclaim ‘ today I am going to be shit parent’. 

So I’m learning on the job here with this whole blogging thing. I think long blogs are a bit of a put off. But I’m still mustardy keen to get my message out there, so I am going to do this using bullet points. Autism advice in bullet points. That may well be the title of my first book...Not!

  • If your gut instinct is that your child is different you are probably right.
  • Be brave stick to your instinct even if your GP sends you away and tells you ‘not to worry’ (I have 4 documents which say ‘Mother worried’ at the bottom of the page) 
  • Do you what you have to, to get a referral. Survival of the fittest my friends, it may not be pretty.
  • The referral you are after if you suspect PDA is to the The Elizabeth Newson Centre. 
  • Remember - PDA is not currently officially recognised. If you are after an EHCP (Education Health and Care Plan) the document will state ASD (Autistic Spectrum Disorder) 
  • Don’t worry about that, as long as you are getting the correct psychological support for your child and treating her/him like they have PDA. What the document says is superfluous. 
  • Document everything and anything. Melt downs, what they eat, what they won’t eat…dates and times will help.
  • Communication from them or lack of it, this is essential. ‘They don’t respond when…’
  • Try not to compare to your other siblings when explaining to GP. The old ‘every child is different’ will be batted back in your face. Or if you do, make it a statement. ‘ I know my child is different because....’
  • When you go to your GP try not to be emotional
  • I know how this sounds, emotion and your children come hand in hand.
  • Be factual, gives them less opportunity to fob you off. PDA is, for the most part, not recognised, ( see above) if this is what you think your child has, the battle may be bigger than you thought. 
  • That’s ok - imagine they are already diagnosed with PDA and treat them as if they were (see below) it may take a while, but you could start to see positive differences. 
  • PDA can often be missed as these kids have such incredible life skills
  • They are smarter than you think
  • Anxiety is their ruler, no one is in control here except the ‘A’ dude. 
  • If you look closely at them when you think they are making eye contact with you, they are actually not. They are looking slightly passed you or in between your eyes. 
  • Are they mirroring you/the other children? This could be a PDA sign. Its a lack of verbal understanding, they are very visual.
  • They may speak brilliantly, but their receptive language (understanding) will be poor. So they will copy what you say.
  • If you are disciplining them, they may simply copy what you say. They are not being insolent. Don’t chide them for this. Its very typical of PDA kids.
  • Example; me telling Matilda not be rude aged 6 she shouted this back at me and I put her in her room for being rude. She will now barely still sleep in her room due to all the negative associations of being put there when she was ‘naughty’. 
  • Yes I feel guilty about this pretty much every day. I get that this is wasted energy. 
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Post referral

  • You may be in for quite a wait now, unless you are being seen privately.
  • Whilst you wait you may want to try a few things, especially if you think its Pathological Demand Avoidance. 
  • Most importantly, you need to get the whole family on board, this will not work if you are living in a house with many people and you are the only one doing this. 
  • Dividing is most definitely not conquering where additional needs is concerned.
  • Change the way you see your child. This is not a choice for them.
  • Imagine that they are at least 2 years younger than they are. This will help
  • Children with PDA have a considerably lower maturity level
  • Try tweaking the way you speak to your child
  • Never EVER ‘ you have to’. ‘It’s time for you to…’, ‘Can you…’
  • Go with ‘ I wonder if we can…’, ‘Shall we see if…’. 3rd person, everything in 3rd person
  • Do you have a dog/cat? Talk to it! Use a toy they like? Another person in the house. We're talking indirect speech here - you talking to dog (or anything/anyone other than them) ‘I think XXX (child’s name) is tired, shall we give them some space?’ In one sentence you are taking away the need for them to tell you how they are feeling (i.e a demand) and inadvertently saying it’s ‘ok’ to need space.
  • Star chart, star chart - Every time they do a teeny tiny positive thing, give them the biggest, fattest, star ever on a chart. (age dependent, doesn’t work brilliantly on my 11 year old anymore)
  • Don’t chart the bad. A massive commonality with these kids is very low self esteem. Imagine everything you did wrong in writing on the wall for everyone to see. Humiliation is never the answer. 
  • If they are attaching themselves to you and struggling with relationships with other members of your clan, try and get those family members involved in this. 
  • Matilda struggled with her Daddy for a very long time, so he started to take her swimming regularly, this then became their ‘thing’. She now never asks me to take her swimming, only her Papa.  She's still my barnacle though!
  • The way you talk to your child with possible PDA is very age dependent. Like I said whatever the age, remembering that they are considerably less mature than their peers will help.
  • If you suspect PDA, any book written by Ruth Fidler and or Phil Christie is a great place to start. Knowledge is power, read and read then read some more.
  • Take and get help where you can. Don’t do this by yourself. You’ll burn out. This helps no one, most importantly your child. Trust me, this is exactly what I did. I came incredibly close to total burn out.
  • A child in full melt down (panic attack) cannot be reasoned with, additional needs or no.
  • It ‘happens’ to them it isn’t a choice. Its a panic attack really not a melt down. 
  • If they have gone into full code red, find a place where they can be alone and safe and leave them there whilst they calm down. 
  • During one of these episodes, AVOID EYE CONTACT - big advice. They feel so, so judged. If you have to chide or discipline ever, please avoid looking in the eye and don't ask them to do it. It's like me asking you to go hop into a snake pit. 
  • You'll get nothing from them if you do and possibly a lot more of what you want, if you don't. 
  • Grade the melt down/panic attack. We have a 5 point scale. 
  • Anything between 1-3 is a moveable feast, post 3 we have to let Armageddon take place then deal with it.
  • Reason with them post anxiety attack/melt down never during. Literally just stop speaking to them unless its to calm them down and sooth them. 
  • It's ok later on when they are calm to go over what happened. They won't like it. I tend to start with, 'I'm a bit worried I did something wrong, so I don't do anything wrong again perhaps we could work out what made you so upset earlier?' 
  • Its important to 'un pick' these attacks/meltdowns, some times much later in the day when they are totally calm. 
  • PDA is anxiety based - Matilda is on 50mg on sertraline every day. This is an anti depressant. 
  • Ultimately this is your decision as a parent. Which makes it all the more harder. 
  • The responsibility is very heavy. But the way I see it is this. If Matilda had a heart defect I would 100% give her a drug to help her live.
  • Her brain isn’t wired the same way as everyone else. This is not her fault. If I can give her a drug to help her survive, just to help a tiny bit, I am going to do this. 
  • I am not judging you at all if you choose not to. 

 

Judgement

  • I’ve given this it’s own little subtitle because you’re going to get masses of it
  • Judgement from strangers looking at you and your kid in melt down
  • Judgement from strangers even it they are not.
  • Judgement from family
  • Judgement from friends
  • Judgement of each other (if you are co parenting)
  • Judgement from yourself to yourself
  • So now we have to take the ‘Britishness’ out of it and not, or at least do our best to pretend, not to care what people think.
  • Even if your child had no additional needs you would be judged. Multiply that by a thousand for your child who is different.
  • It helps no one, but not caring about judgement will come with time. I appreciate this. 

 

If you have the financial means

  •  The doctor who diagnosed Matilda was brilliant, but has now emigrated. However...
  • I went to a PDA conference recently and I heard this woman speak, she was excellent
  • Dr Judy Eaton - consultant clinical psychologist, she is based in Norwich.
  • From her website I can see she does take referrals. Its worth contacting them just to get information. 
  • https://help4psychology.blogspot.co.uk
  • The blogspot above is really useful.
  • There is a place called The Key Clinic who believe in rewiring the brain and retuning the senses. No drugs, using neurodevelopmental movement, auditory therapy, cranial osteopathy and nutrient therapy. 
  • I can honestly say we did actually see a difference in Matilda two months after an intensive 10 day course. It is NOT cheap. I appreciate how incredibly lucky we are to be able to do this. 
  • http://www.thekeyclinic.co.uk/neurodevelopmental-movement/
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I truly hope this helps even just a small amount. 

There is no magic wand here. You need patience, time, more patience, more time and have the right support to enable you to create an environment where your child can thrive as best they can. 

Remember it is not a choice for them, no human being would ever choose to be engulfed every minute of their day with the burden of such extreme anxiety.

With the right support for you and your family the future is much brighter than you think.

So grieve the child you didn’t get to have, it's ok to feel that way. Once you are able to put that aside, be prepared to have your mind blown,  by the incredible child you have the privilege to call your daughter or son. 

Sending love and support. You are not alone.

Caro x

Caro@spikeymama.com