by Jenna Schade January 20, 2021 3 Comments
Tonight was it.
I decided it was the last fight I would have with my ASD, PDA, ADHD, SPD daughter Chloe about the two main topics of brushing teeth and having a bath or shower. She will be 9 in a few months. She is capable of these tasks but finds them much trickier to do, and much more physically uncomfortable than approximately 99% of her peers. Yes she is the 1% that somehow hasn't progressed or improved with her aversion to these tasks in the 8 years we have been going through the same routine and polite requests every single day. Let that sink in for a moment. I'm talking almost 3,000 times where I have said to her "it's time for your bath" and many more thousand times I have said "let's brush your teeth". Yet still, almost every day, our relationship gets to experience a disagreement about these basic tasks.
I know the easiest way for us to get through them... and she knows it too. When her brain is completely zoned-in to watching one of her favourite gaming you-tubers... and I ALSO ask her about that youtube video whilst I brush her teeth or sneakily wet her very short hair and add shampoo... then she excitedly tells me the crazy challenge "Unspeakable" or "Preston" are doing in minecraft. This doesn't always work... depending on how her nervous system (and mine) is doing in that moment. But when it works we get to avoid the running away, pushing, kicking, dropping to the floor or yelling. Of course I make sure I know the name of the YouTuber, many things about them, the game they're playing, and whether we have seen that type of challenge or even that exact video before. You see Chloe gets EXTREME joy from me joining her in her special interest world. She will never say as much to me, but I know in those moments when she let's me wash her hair etc. that there is a deep level of trust and connection... helped by sharing her special interest... and I hold that sacred and rarely feel resentment for the extra work.
Tonight however, I cried from a deep pain that came from that feeling of being taken for granted and having my energy, emotion, time and love disregarded and disrespected. I saw in front of me a child that is mostly capable of the task and these days even capable of pushing past the feeling of 'not wanting to' or 'it's uncomfortable for me' or 'I'm tired'. I saw a child that clearly made a choice to run away at the mention of the final step tonight... of brushing her teeth. I had just finished giving her a sponge bath, on HER terms, as a real bath (sitting there ready for her) was too overwhelming, and so was the bathroom itself... so after begging and pleading and insisting for 10 minutes, I had her at the doorway, just outside the bathroom. Finally I had finished washing, drying and dressing my almost 9 year old in her PJs. When I held the toothbrush out to her she simply ran away and said 'no'.
I don't know what came over me. I just stood in that spot alone and cried. Every person has their limits and this was mine.
Once I calmed down, packed up everything, and took some time (and more tears) in the laundry to think... time to look within and ask why my heart was hurting... I was able to hear the words coming from my heart very clearly. I then went and found Chloe, distracted her with crystals and her rainbow light water bubble lamp, and lovingly spoke to her openly:
"Chloe, do you know why I feel sad when you fight with me about the two topics of bath and teeth almost every day? Because I know that you are capable, and I know you CAN push past your dislike for doing them when someone else asks you."
She wouldn't look at me but I knew she heard me. I continued... "so it hurts my feelings because you choose to say no and have a fight with ME. You know that regardless, these things simply have to happen every day, but you still choose to say 'no' when I actually don't think it's necessary to say no any more, and I don't think I deserve that". Then I asked her why she does these tasks for grandparents and others but not for me... and she answered "because I'm scared of them because they're strict and scary". Hmmmmm.
So I said "We have two choices from this point on. I am done with fighting with you every day, and it's my job to help you learn to look after your own body, so that by the time you're a young adult you're all set to do it yourself. So the only thing you can do now is make a choice: the path to the right where Mummy will have to be strict too, and you'll have to be scared of Mummy too, so that you do these daily tasks when it's time to... OR the path to the left where you decide to look after yourself with my support, and push through (on just these two topics)... and don't argue when asked, EVEN if you really don't feel like it.
I had to repeat parts of the chat as she admitted she zoned out. I had to let her play with crystals and pretend she wasnt listening to the hard bits. I waited for her to take my hands, look at my face, and make a commitment to me... from this point onwards. I made a space for us to speak and be heard by each other. I spoke slowly, quietly and with respect. She hugged me out of nowhere. She told me she wants the left path. I took that moment to tell her how important this is to me. I explained that there are many other topics less important, that are not path chosing deal breakers, that I will continue to support her on... like sitting with the family during Christmas lunch. I told her that I advocate for her more than she knows. That I say to family and friends "let her go and play, she will eat when she can, this is overwhelming for her". That I no longer need to say those things anymore and everyone now knows to let Chloe be free and her beautiful self, thanks to all the times in the past I alreadu had her back and shared knowledge and understanding to the adults in her life. I asked her to think back to Christmas brunch last month. I saw realisation dawn on her face. Nobody had asked her to try and sit at the big table with all the people and smelly food. We all saw her stimming and leaving the room quickly and said nothing. She looked in my eyes and I saw that she got it. Mum has my back. Mum speaks my truth.
Only time will tell if this is enough for her brain to be able to push through the desire to fight or run away during these hygiene tasks... but for the sake of my sanity, for her self esteem, and for our relationship... I had to try. I have now set that boundary for myself and every chance I get I will remind my inner child that I am listening to her... and remind Chloe that it's a boundary I will not waiver on. It will not be easy at first. I will get some push back. She will try and test my resolve because that's her job and change is hard. But it's time for change now.
Setting that boundary and not letting us stay in that pattern anymore IS love. I used to think love was doing the things for her, being her absolute ally, and showing her complete compassion, understanding and tolerance for her differences and difficulties. We have reached a point where she can slowly start to take responsibility for one thing at a time, then another... and it will no longer be solely my job to carry her, make exceptions for her, and heal her. Setting that boundary IS love. That moment of choice and of change is sacred between her and I... and different for everyone. For us it has come many, many years after her sister, her cousins and her friends... but removing the word 'should' has changed my mindset. Removing expectation and comparison has allowed us flow, beauty, trust and connection. This change new comes from a place of love... not of frustration or anger or 'must'. To Chloe I say "you've got this, you can do it, I love you".
Okay now the HOW. It's easy to say I've made a choice not to fight with her about these tasks. That's it. I'm done. But what does that mean?
What I will do is take the time to listen to what she has to say each time she has an aversion. Sometimes I will agree with her and sometimes I will disagree, but I will always give her a reason why. I will still show her empathy. I will still be able to see where her nervous system is at and adjust appropriatly. However I will stick to my boundary of expecting, with little to no defiance or arguement, her teeth brushed at least once a day (twice if her nervous system can handle it), and a bath, shower or a sponge down (if appropriate) every day. In the past I have not been as consistent. I remember doing anything to keep peace for myself, my husband and our other daughter... to keep things to a shorter timeframe so we could get somewhere on time (for once) or get to sleep before 11pm. I remember many many times threatening some random punishment in the moment, or just exploding in frustration.
This time I will set very clear expectations (in writing for us all to see, including my husband), with very clear consequences... known in advance... not blurted out as a threat in the moment.
I already praise her for her efforts when she does push through these hygiene tasks without fuss, but I will pay extra attention to this and remind her why this is important for her body, her goals and also for our relationship. Information is so powerful for the Autistic brain! I of all people should know this!
We will try a visual chart again (an app on my phone rather than her iPad) that she can tick off as she achieves self care tasks. We will make sure her sensory needs are being met and she's getting her 'brain care' each day. We will try and set natural consequences for the type of issue we're having (not that this strategy is always the best for the autistic / anxious / ADHD / PDA brain... as the consequences really need to be immediate, and in line with the privileges most important to them... otherwise their brain will say "yeah I don't really care about that consequence... bring it on... I will absolutely take that consequence over having to do that task... and I will not go down without a fight, no matter how long it takes". Where other kids would rationalise "hey, I've been through this exact fight 1,000 times before and I know Mum won't budge, and I don't want that consequence".
This is our family's experience... and from what I've heard, is reflected in most other families like ours).
I put this in writing because it felt important. It combines so many years of experience and connection... and formal learning... and listening to other parents.
I hope this helps someone, even just to hear you're not the only one going through something similar to our journey.
Let's all share our tips and ideas... and all try and be a step ahead when working with the specific brain right in front of us 💕
Wish me luck! 🤣
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by Jenna Schade March 28, 2021
by Jenna Schade February 08, 2020
In our family, self-regulation has not come naturally. From an early age we noticed that our Chloe needed a lot more help from us to manage her thoughts and feelings… especially at bedtime.
I remember the first time I noticed how other children her age were starting to control their impulses, manage their attention and organise their behaviour whereas she would struggle.
Despite giving Chloe the same co-regulation opportunities as her older sister, despite the responsive and warm interactions we had, despite giving her just the right amount of support, despite my coaching and modelling efforts, she just never seemed ready to self sooth or to truly trust the adults in her life.
by Jenna Schade January 13, 2020 1 Comment
I didn’t realise that socks were that important, or even an issue for our Chloe. She didn’t complain very often. She was just overloaded and crying by the end of most days, and she avoided socks and shoes in general.
Over the years I’ve heard from many Occupational Therapists that it's rarely just one thing that causes overwhelm and dis-regulation, but rather the cumulative affect of many irritants or missed opportunities to reset or regulate the sensory system during the day.
One day I thought to actually try some of our soft, seamless Sensory Socks on Chloe... and they instantly became one of my little secret weapons!