Today I'm writting about removing the guilt and of not conforming to the neuronormative parental tool kit.
When I'm out and about I cant help myself but observe other people.
Sometimes this can be to the frustration of both children as they beg me not to get involved.
I can often tune in to other childrens neurodivergence. In not a choice. Its something that just happens.
I can imagine some Educational Phycologists and Clinical phycologists rolling their eyes at me probably saying what an irresponsible assumption and statement to make.
I suppose reading it on the page as it is, It probably does come across like that.
I ask you to consider though, would you come to the same conclusion if you were neurodivergent and if you are neurodivergent can you understand where I'm coming from?
I guess thats another opportunity for proffessional discussion another time.
How can I put the next sentence sensitively?
Sometimes this can be, Notice I have used the word "sometimes" when parents/guardian may not be aware that their child could be neurodivergent and are trying to persuade the child to behave in a neurotypical way
This can be quite up setting to observe as the parents and child become very upset with each other whilst both being at logger heads trying to gain autonomy with what the other person wants.
I especially notice when parents look extremely embarrassed as they try to "control" what is happening as they desperately try to gain the "control back"
I have used the word "control" as I have seen it written in a few articles lately about trying to "gain control back as a parent." I'm not going to share the article as I cant condone the message but for us its not about "control" and tbh it should never be about control. This is setting up a really unhealthy relationship between adults and children.
Now the last thing the parent will appreciate is me approaching them and giving them a run down on the neurodiversity paradigm as an alternative to the pathology paradigm, so writting our blogs is a healthy alternative for both me and them!!
Hopefully they'll come across them and see the light!!
I recognise the look on the parents face, I feel her frustration and I feel embarrassed to say that I've been there myself in a way. But not how you think.
My frustration came from people staring and judging me. I felt pressure to "nip it in the bud and show him who's boss"
I wanted to scream at them and say "for goodness sake have you never seen a child deregulated before"? Give us some space!!
And then I stopped caring what other people thought, I stopped measuring our family life against other peoples and I started re connecting with my Son and myself.
My eldest son was diagnosed with Tourette's a few years back and boy could I share a tales about peoples judgment but I wont as hes asked me not to and its his story to tell, not mine.
Joe, by the way has given me full permission and this is a joint venture.
The difference in Mine and Joes mental health when were meeting our own needs instead of meeting everyone else's is priceless.
Ill give you a few examples of us rocking it as a neurodivergent family.
Oh and also making mahoosive mistakes!!!
-Neurotypical Traditional family stuff
Do we sit at the table and have a traditional family meals for example.
Not if we can absolutely help it.
To be able to sit at the table it would mean Joe would need his phone , note pad, tele on in the background and anything else needed to get through the meal. On top of trying to get in a comfy position. Frankly its not neurodivergent affirming from beginning to end. All the rules around what a conversation should look like and why its importance to eat together at meal times and the processing needed to participate is counter productive. Its exhausting.
We dont eat out very often for this reason. If we do its planned very carefully and Joe needs to agree to go. When the place we are visiting is truly inclusive it works well.
Enable, enable ,enable.
Here is a previous blog explaining what that looks like for us including a review at The Globe Cleethorpes - Posts | Facebook
There are always other ways to share moments together.
Organic, authentic moments have more meaning than forced compliance 7 days a week.
I am not in charge of Joseph. We are getting through life together.
Do I need to guide him? Of course
But I dont assume I know more than what he does about himself.
I just give him the neurodivergent affirming language he needs to tell me when I'm getting it wrong or getting it right.
He needs to practice on me so he can then educate others outside of his safe home
I wrote a little bit more on this subject here
Its ok to make your own rules....
Remove the guilt
If it works for your family and you are all in agreement, then go for it but I'm a massive believer and advocate for giving children autonomy. This is a massive life skill and should be introduced from early years at every opportunity.
I have often been told by other proffessionals that is not realistic to "let him have his own way all the time" and "your setting him up for failure. "Life's just not like that"
Id like to address this If I may?
1-society sets him up for failure by not accommodating him to be his authentic self
2- Weve been churning those sayings out for years when it comes to "behaviour" and it only further highlights how far we haven't come in terms of approach and knowledge and actually studying the relationship between children and adults and how little autonomy children have had historically. This can be really dangerous actually when children feel they have no choice over their own lives and can lead to dangerous situations, abuse, emotional and sexual, criminalisation. Children will gravitate to where they feel accepted and criminalised gangs are very skilled in spotting and grooming vunerable young people who feel isolated and voiceless within their own communities.
3-"Letting him have his own way" is actually listening to him and reacting in a meaningful way so he will use his voice again. I'm enabling...…
I'm doing so much more than "letting him have his own way".
-I'm meeting is needs in that movement.
-I'm supporting him with regulation" And lets not forget he is isolated by way of protecting him self from community perception. When he leaves the house he doesnt like to walk past NT children just in case they judge him.
So do I believe that I should give him every opportunity to have his own way?
-He is learning to understand his self as an autisitc person and if I ignore him or tell him to stop being silly, or chastise him all I'm doing is pushing his autisitc identity down to the pit of his stomach and causing further trauma.
He is learning he can trust me and other adults who truly listen to him. We are trusted guides or working partners.
He will keep turning to me and I will encourage it every minute of every day I am on this earth.
4- proffessional knowledge should evolve. As a proffessional myself, I am always questioning and looking for evolving knowledge and research. Correct me if m wrong. I welcome being educated and dont take offence by it.
A neurodivergent affirming Diet.
This is hard for me to write this as I want Joe to remain healthy both emotionally and physically and both are linked for obvious reasons. He has a phobia around the GP and any kind of NHS interaction. This is due to the lack of neurodivergent affirming language and of course all ideology comes from the pathology paradigm which we deeply reject.
Food is a source of nutrition and health benefits. We know this.
We know the benifits of a healthy diet.
However, joe needs certainty and consistency in food choices. Uncertainty creates chaos across all areas of his life. This is to do with both sensory preferences and comfort eating to meet regulation.
His preferences of food are very limited.
I have had people say....
-Your going to let him eat in his room?
-Your going to let him dictate what he eats?. In my day we were told what to eat and that was that!
-Your going to let him leave all that food?
-He doesnt eat breakfast?
-He doesnt need to use a knife and fork?
-Your still cutting up his food?
-He chooses what he eats?
You get the drift!
I get so frustrated that I have to constantly inform people.
This again highlights how little is known about autisitc culture. Especially across health and social care.
If you are an organisation or work across health and social care. I would be very happy to work with you. In fact I would be very happy to anyone that wants to do better.
Its ok to say that by the way
Its not a reflection.
It just means a better way hasn't been suggested or explored.
I understand how tied proffessionals are regarding decisions and leading change
What does make it frustrating is when a better way is suggested and its ignored, shut down and tossed aside.
Neurodivergent children have a lot to teach us.
Neurodivergent parents and Allies have a lot to teach us
Neurotypical parents will have a lot to teach us if they listen to the neurodivergent community and listen to their neurodivergent child
What I'm trying to say is....
-You are their guide.
-Dont feel pressured into conforming to what others think you should do.
-Dont feel guilty about confirming to neuronormative parental style
-Dont try and measure yourself against other people
-Dont feel guilty about doing things "the right way"
-If its working for your family and regulation is central to your family life then that.....
IS YOUR RIGHT WAY!!!!
-Do listen to your child
-Do look after yourself
-Do celebrate your ausome self and your ausome child
-Do Educate others
-You DO You
If we all recognise that #mentalhealth is a priority, this will mean unpicking why childrens mental health is at an all time low. Exploring a different ideology, a different set of principles, a different approach.
Or we can keep churning out the same old rhetoric.
We hope you have enjoyed our blog and it has helped you in some way.
Love Jenny and Joe