The Boo Diaries volume 2- my journey with PDA

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Matilda Florence Rose Greenwood, with all her isms, is one of the main reasons that Spikey Mama exists. 

For those of you who are new (thanks for reading btw) Matilda has a plethora of issues, the main one being PDA (pathological demand avoidance)

Please remember this is my journey, one family, one little girl. NONE of it is judgement. My take, my feelings. Never EVER judgement. 

Matilda has started seniors. 

First week went well as it consisted of a grand total of 2 days! Matilda's school uses the first few days of a new year to get the girls used to their surroundings. A change of year is a big deal, the change from juniors to seniors is massive, multiply that by masses for Boo. 

What helped hugely was her ‘Crib Sheet’. I couldn’t recommend one of these enough. Whether or not your child has additional needs is entirely superfluous, there is no negative to a new teacher with a new pupil getting the low down of that human from the person that knows them the best. I wrote a blog on this if you’re interested! 

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The biggest change I think from juniors to seniors is the actual physical movement. Gone are the days of arriving in class at the beginning of your day at your desk where you will sit pretty much, for the entire day, taught by the same teacher. This though has turned out great for a kid with ADD on her ‘this is what I’ve got’ list. If your brain is telling you to permanently move, actually being able to do that, is hugely helpful. 

As Matilda has a statement (now EHCP) she is actually entitled to movement breaks. But weirdly, since she has known she is actually allowed to take these, she hasn’t always needed to. The brain is such a weird thing, if you feel trapped you fight to get out, if you’re given an option, you feel more in control and therefore don’t always need to rage against the demands.

If you’ve a child with similar issues, beg/fight/do whatever it takes to get them a movement break written into their daily needs. If your brain is permanently on ‘I need to move’ alert, then how do we expect them to learn anything without being able to at least have the option to keep mobile? In the past we've used a lot of ‘fidget aids’, but she actually found them more distracting than helpful. 

So, we've established the moving of classrooms works! 

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Every child will have days where they have subjects they like less than others, Matilda is like everyone else in this respect. Take Monday for example. Monday starts with double swimming. Now for most of us, at school, this wasn’t an issue (unless you born in the 70’s and when you forgot your swimmers you were expected to swim or got thrown in, wearing nothing but your massive floral m&s pants). Swimming basically meant, no maths/science/any actual real work.

But for Matilda this means, wet skin next to dry clothes. Having to undo then re do all her buttons and part of her seniors new uniform is a kilt, a rather lovely one actually! But a kilt all the same. So more buttons and a buckle, challenging for little fingers with fine and gross motor delay. She can’t do it quickly and no matter how much the staff underline its ok for her to take the time she needs, she doesn’t want to be the last girl in the changing room. 

This led to her refusing school every Monday. We are not new to school refusal, this has been one of the main issues from her PDA. It's a commonality for those with this diagnosis. They are quite simply wanting to avoid demand, or what they perceive as a demand. At one stage we were lucky when Matilda went in 2-3 days per week. Getting the right TA changed that for us, when I say this human being is more important to us than just about anyone else alive, I am not exaggerating! 

So when we figured out the reason for her Monday stickiness, the school straight away put themselves to work, trying to figure out the best way to get around this. So her TA and her tutor came up with a genius plan. Matilda now goes in on a Monday with her swimmers underneath her uniform, simple right? She is the first in the pool and seems pretty cool with it, for now. As for the post pool stuff, she appears to have a handle on it for the moment. Maybe because the getting into the pool part is so much easier. 

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The school refusal is still there. We've had a few late mornings. But where I am very clear with Matilda is that the physicality of going into school is a non negotiable movement. What she does once she is there is entirely her choice. She is in control. Because that’s the most important thing for those with PDA, the control or at least giving them the idea that they are. When she does refuse to go into school I don’t make home a fun place for her, nor do I make her feel guilty or chide her. I express my disappointment with her choice and inform he that there’s no play time and no screen time. During school hours, home is not ‘home’. Period. 

A great many who have knowledge of PDA disagree with this stance. But here’s my view on this. PDA is an anxiety based issue. Everything is anxiety, whilst the rest of us plough on through life trying to avoid what makes us anxious, those with PDA go thorough life trying to find pockets where they are not. If we are to give them a chance to exist in as much of the ‘real world’ as possible. Then we have to introduce them to ‘life expectancies' in the gentlest possible way. 

When these kids are adults, they will be required at some point to, leave the house, hold down a job, maintain friendships. So the very act of getting up, showering, brushing teeth and hair and leaving the house is something that I would like Matilda to get used to doing. I appreciate that we have the school and TA of dreams and this is quite simply not possible for all children. That’s ok, there’s home school, other options, none of them easy, but options all the same. But to say to your child ‘ok, lets just bake all day and play with your Barbie’s’.  I don’t believe this is the answer. You’ve taken away their anxiety for now, but unless you are prepared to do this for the rest of your life, then are you not delaying the inevitable? Is it possible that if we do this, we are leaving them entirely unprepared and delaying an even larger mountain of anxiety, when any resemblance of the real world hits them like a train? 

I am not suggesting in anyway shape or form you discipline them for something that is not a choice for them. But by giving way to the avoidance of demand in this way, I am not at all convinced that this is the solution. 

In short. Matilda is nailing her first month at school. We are not complacent, no no nooooo. We know that this could change in a heartbeat and she's still incredibly anxious. She questions EVERYTHING and I mean everything. 

‘I don’t have to step out the door with my right foot do I Mummy, its my choice’

‘I don’t have to breath the way I just did do I Mummy, it’s my choice.’

‘I don’t have to get in the car through this door do I Mummy, it’s my choice.’

You get the picture. Matilda asks north of 40 questions akin to the above, on an average day. As an aside, its EXACTLY the same on a weekend. i.e,  no school makes no difference.  She is also twitching more with her left leg, scratching at her scalp, biting her nails. There several signs of anxiety, so we continue to do what we can. She has regular therapy. I use everything that I’ve read and all I have listened to, to help her. A lot of what I do is now self taught with tweaks. We chat in the bath, her favourite thing to do. I use oils, massage, vitamins, bath salts. It's like 'Zen Den'!

To conclude, her anxiety reigns supreme. It is unlikely to ever go away and I will never make my peace with that. However,  I have come to the conclusion that looking too far into the future for all of my children actually, is pointless. I have to be the best Mother I can be now, to deal with their life choices now. Living and dealing with the present will hopefully give them the skills they need for their future. So for time being,  I am going to do everything I can to support her navigate the unchartered waters of her 11th to 12th year. That's just parenting right?! 

Over and out for now 

 

Caro x

caro@spikeymama.com

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