I speak to so many parents of PDA kids who are in despair that their kids won’t or cannot accept help of any kind. When we are offering help with doing up buttons or homework, we can work around it, it’s not a threat to their health if they don’t accept help so we can accept their no in these areas where our natural instincts as parents is to teach and love through help. But what if they want help but the brain just can’t say yes? Inside says one thing, outside says another.
The difference with PDA is that refusal for help is not always a sign that the child or adult wants to be independent. We can step back and allow the child to naturally find their way if the child needs to feel in control. The refusal for help can also be a fear of help or a pathological response to the feeling of a demand within the fabric of help. Meaning that even though the PDA child or person knows that help will benefit them, they cannot accept offered help. The consequence of this is that children are suffering in illness.
This is why so many of us are in turmoil when our children refuse to do things or accept help that would we all know would make them more comfortable, heal from illness or protect them from harm.
Ours is the child who refuses to wear a seat belt or apply sun cream if they are asked or told. The child who won’t wear a plaster if they cut their finger. There is often a sensory aspect to this, being that sensory processing disorder often goes hand in hand with people on the spectrum. However, knowing my child and witnessing 16 years of refusal to offered help, I am confirming that the need to reject offered help is pathological and that help, even self help, is still a demand.
The child who won’t take meds. The child who won’t wash. The child who won’t agree to less screen time, the child who won’t go to a Doctor. The child who won’t read anything that might help them out of a situation they don’t want to be in. The child who won’t eat. With PDA, the firmness is extreme, it is constant, it is hard wired. I believe anxiety is experienced at not being able to do these things and being further pushed to accept help, but not the main cause than underpins the reaction to decline, refuse, say no.
This is why it is such a battle and such a heartbreak to see our beautiful, trapped children hurting, cold, too hot, stuck, living half lives in unhappiness and anxiety. As mothers, we are the ones who know. We are the ones who know our children and that they are not doing this from free will, they honestly cannot help themselves to say no. The more we say please take this help, the further away from the help they do need we get.
To outsiders, this seems impossible. Illogical. Then how is it so, that we are all sharing the same experiences and witnessing the same behaviors across many demographics, social climates and even countries across the world?
Together, the PDA community have and are continuously teaching and learning what we call strategies to work around the pathological responses such as refusal to accept help, refusal to comply, avoidance of every day things that most would not even think about when doing on automatic pilot. We have had to construct these ideas and share what works because living with PDA and parenting a child with PDA is so very hard in a world that does not see, accept or understand the intricate workings of people with this neuro type. Whether it’s official or not, researched or not, believed or not, curable or not, preventable or not, evolution or not, environmental or not, we have to keep on sharing and teaching because for us, for the Mum’s like me and the children like my daughter and the families that struggle and the schools that don’t know how to be with these children, we need to keep on keeping on. We need some quality of life.
If your child is unable to accept help, my best advice at this time is to accept help for yourself and to self help yourself. Don’t ever give up improving or role modeling what can be done to look after yourself. If you cut your finger, put on a plaster. If you are cold, wrap up warm, if you are in the sun, move to the shade and don’t be scared of verbalizing those solutions in a non confrontational way. I am cold therefore I am going to sit by the fire. It has taken years, but my daughter can now ask for lip balm if her lips are sore, but still if I say “Your lips look so sore would you like some lip balm?” She will, 100%, every time, guaranteed say no.
These are the little things that can add up to much more serious health conditions in the future if we don’t learn ways to work around them when they are little. Little things grow into big things. We can teach by showing what can help and refrain from offering help.
By the time we go to the Doctor with a child who won’t eat, a teenager with burnt skin or a condition which is irreversible, the gap we have to close is too wide, and the conditions we need to close the gap are misunderstood. We are then in much deeper trouble than if we had learned and implemented changes early on. We as non PDA, can adapt our values, language and expectations. Yes it is hard, yes it is hard to re wire our own selves to help those who, at this point in time, do not seem to be able to re wire. But it is what we must do to keep the wheels turning.
Thanks for reading today. I’ve got quite a few thoughts bubbling at the mo, so watch this space for more in the coming weeks and please join my followers or comment with your experiences. It all adds to the awareness of PDA. x