I've been for a walk in nature this morning after a heavy parental night, one that was so surreal to be part of. As I continue through my morning while my child sleeps off this heavy night I have had a conversation with her GP, I've heard back from CAMHS - a child's mental health service, I've researched a herb I'd read about, and reached out to three herbal and nutritional friends. It's only 10.16am.
My laptop was in front of me so here I am processing, digesting, reflecting, checking in on reality, and my self-care. Cue: a phone call from a friend. This was really quite transformational we'd both been experiencing a family member with anxiety but had both not talked about the topic much with others. Her friendly voice on the other end of the call made me release tears, and while often my go to is to be apologetic for crying over the phone as it makes the other person feel helpless. By the end of the call I was so thankful. We'd had a flowing conversation between us not just one story over another, and similarity of loneliness with this topic in our hands, interlace that with love for the family member, who we just don't want to see in so much pain. To that friend, thank you.
That call from my friend restored my energy and hope for about a month, yet in that month for my daughter there had been continued self harm, intense disassociation, along with my other daughter seemingly adding Tourettes to her diagnosis of Downs Autism. It doesn't stop there my son comes to me and says 'I don't know why but I keep walking on my tippy toes!' I'd been softly noticing this to along with a new sensitivity to fabrics, labels in clothing, and food. I smiled at him, it must of been a reassuring smile as he was happy with the smiley response. I'd already been reading about the fact that Autism is genetic, there is no question in our family. Even my dad says at times 'well, I do those things, and I'm not autistic' Mum and I smile knowingly at him. We see the trail of traits throughout our family in many directions.
Is it about a label, a diagnosis, absolutely not! But it is about understanding, and building a toolkit that you can turn to and use to support with. When I think about the loneliness of this topic, I think about the point at which I could no longer say 'okay' to the 'how are you' question but when I'd share a little of what was going on it was too much for the recipient. I've continued to bitesize it as I can't lie about the way things are for us, but I also have to be respectful of what other people can tolerate. The topic felt too big to share but as proved in the intro that friend calling me in that moment literally saved me emotionally. I have another friend who checks in so regularly and I still don't reach out as much as I should but she's patient with me and doesn't give up on me. Yet again she has a family member struggling too. Other friends beam in occasionally and others have just naturally drifted away. I to struggle to reach out when I need to. Life happens for us all and sometimes we simply cannot hold space for difficult topics, I get it, I really do.
The flip side is of course to talk to strangers which, if they're going through similar things then it is much easier somehow, but still there's this, protective element. In fact we were enrolled as parents on a 5 session course, I missed a session as I couldn't focus on everyone else's story and there were set topics to cover, and our reality was a million miles away. The next session where I could attend I was able to be open, but also listen and support others - it's about knowing your capacity, and learning to be open about your reality, albeit a very filtered version.
So how can I help society, how can I help you reading or listening to this post. Is your reality similar to ours, or do you have a friend or family member experiencing anything on the spectrum, or are the people I'm talking of - you, or were you simply called to read it, how can I help you?
Let me start with the you, who settles into Autism yourself, you may suspect you have it, people tell you you have it or you have a diagnosis and have accepted it or maybe you are still digesting it. I am happy to share how I talk about the topic with my family and friends. Firstly, I go to the parts of autism that are so obvious, the bits you cannot be unaware of, the things that show up naturally. My daughter felt she was different, she noticed her reaction was different from her peers, but after observing them simply copied their responses instead (known as 'masking', we'll get to this) and so to make sense of something is really helpful but it truly does take time to digest but being open to it, and exploring it can really start to help support you. The next layer after you've heard it a few times is to protect yourself from a label. Your first aspect is to start by acknowledging your category, is it neuro-diverse or neuro-typical?
Once you're over this hurdle you begin to feel free to dance around in the space, there's plenty of room by the way to move in the category, you are your own person. But to prevent extreme isolation, and thinking that nothing can help you start to position yourself in one, with the knowing that you are not the same as everyone there. Don't see it as a funnel, or as though you have to belong somewhere in a forced way. Just break through that hurdle, accept one, and then take your time to explore. Once you know your stance, it will help you to communicate to both.
To define the two categories, food is a good starting point. A neuro-typical response to a food they don't like is. 'I don't like pears, so I don't eat them'. For a neuro-diverse person their response could look like this. 'I can't even say the word so I'll just spell it so you know what I am referring too P.E.A.R.' The rest are often internal thoughts; her breath smells like it, I can't watch her take another bite, it's making me feel nauseous, I have to get out of here, how can I get out of here quickly, I can't stand it, I have to go'. This is just one example.
One that plays up in our world is going for a walk, for the neuro-typical response it's 'I need to walk the dog so I'd better just go and do it'. The neuro-diverse play out could be 'I want to walk the dog, I know she needs a walk, but I can't, I don't have the energy, what if I bump into someone I know. I'll feel weaker, then the nausea will come, then the anxiety, I won't be able to sleep. I don't want the dog to miss out on the walk, I wish I could, I want to, but I just can't, I feel bad...' There's more but I hope it starts to make the difference gap more clear to you. You may even have a penny drop right now as you acknowledge which one for yourself. Jump into what feels like it best describes you right now, and like I say take your time, be there for a while before the label becomes more defined. Remember, wherever the label falls you don't have to write it next to your name like a qualification or a pronoun. It could be OCD, Tourette's or ADHD but whatever it turns out to be specifically for you, you're still an individual in there too, experiencing life your way. A diagnosis does not equate to one identity.
Do you have a child on the spectrum with or without a diagnosis? First thing I have to say here is trust your gut, trust the moments where puzzle pieces keep falling into place. You don't have to vocalise it, as part of the diagnosis is for your benefit so you can learn and understand, and pause before responding. Do your own reading, listening to podcasts, ask questions, be open to the topic. This helped me enormously with our daughter who now has an official diagnosis of Downs Autism, it helped me find comfort, understand, be more patient, and go on to support others around us.
When we attended our first appointment in a new area the Pediatrician said 'do you know your daughter is autistic?' after she frantically looked for the diagnosis already to be there in the notes. I laughed with relief. She was surprised at my reaction, and it's not the response she is used to from parents. I explained that I already knew this to be the case and our previous medical team didn't agree. So, when we moved and we went for our first appointment I had decided to not say anything so when she came forth with it it made me chuckle. Her official diagnosis soon happened (after just 90 minutes of her spending this time with a qualified individual just being herself) and the resources opened within the community and at school like confetti popping at a wedding.
I tend to shy away from fighting for things as I don't believe in shouting louder to be heard, nor expending energy on something so blatantly obvious that in turn makes me feel stressed but, trust yourself and do your own learning, it really helps you! Secondly, keep bringing it up so it's not forgotten especially if it's holding you back from resources, support at school or work. Some extra things are, to talk about it in everyday conversation, don't make it stand out like a sore thumb. Elements of the Autistic Spectrum are anxiety, OCD, and for some depersonalisation. Try not to enter unwanted thought conversations with your child as though they are true, instead question it like Byron Katie would 'is it true?' 'can you know for sure it's true?' This is hard work, and you will get tongue-tied and caught up, but be patient with yourself. Best tip here is to pause before responding.
Is this diagnosis new within your family? Be really patient with everyone, we all have different things we listen to, know, and trust. We all have opinions, experiences, and ways of trying to support but what I urge from you all who find themselves relating to this section, no judgement. It's like grief we all do it differently. The strength in just knowing you're there, and when you check in regularly is a really simple yet powerful way to support. Don't go quiet, awkward, and just waiting to be told what to do. Be there albeit in a soft, and quiet way, your presence is enough.
As a parent, have you suddenly realised you may be on the spectrum too? This is alive and happening in our family right now, and although a new area to explore it could also hold many insights. A sense of relief that there is a reason situations, and actions felt a certain way for you over the years. Many people don't receive a diagnosis until later in their lives, others will never know, and others may not be comfortable with it and therefore need time to digest it, or ignore it completely. On this note know that there is such power and freedom in knowing, it doesn't become part of who you are, it is who you are and it does not make you the 'same' as anyone, you are still an individual experiencing life the way you experience it.
Do you want to be supportive of those diagnosed and the many undiagnosed humans who have found ways to manage their lives over time?
This is your first step, just be aware and observant of it like you may be supportive of someone with a disability, or a health condition. If you're an employer, really see the strengths of your team, but also what may overwhelm them without judgement. Be mindful of loud noises, sudden changes, and putting people on the spot. If someone doesn't say yes to a social outing, or reply to your text don't give up on them trust that what they are doing is self care, which replenishes them to interact again soon.
Teachers with Autistic children or adults in the class
There's one thing I have to say here as it really affected our family. Think more deeply about students who you may have labelled 'quiet and well behaved'. This label was so much deeper than those four words. For the neuro-diverse this can be a huge effort to be this well behaved, and it can be born out of a fear of being told off, and it's incredibly exhausting! For our daughter even though she may know the answer to a question she will feel that it's wrong, she'd hear her voice change when she spoke in her head to outwardly. Someone might have 'borrowed' a special pen from her pencil case and is unlikely to give it back, this is very unsettling for someone with Autism. If they get to their answer in lessons or homework in a different way than taught, acknowledge how they got there, rather than correct it in alignment to your way. If they show a strong ability in something like sport, or music don't highlight entering competitions, clubs, and bring a whole load of attention to it as it takes it from an enjoyable hobby to a pressured environment too fast. Share with the parents softly in the background. Changing something they love into one of high expectation is not the right step for many and it takes something that makes them feel calm away from their grasp. We tried to work with her school but their wellbeing SEN team either did not communicate, did not show up, or did meet and didn't follow up, all the while things deteriorated in the background. The GP supported her with notes to allow her time out from school and the schools communication turned to one of attendance only. When we decided to leave I wrote to the headteacher and I feel disappointed with his somewhat generic response, after we'd tried working with the school for 11 months and I had written it from my heart, gave credit where credit was due, and tried to be concise and clear with what was a very emotional topic. It was an opportunity to learn and make things better. In fact I'll share the email I wrote that day and the response with you right now. I have taken out names respectfully. You may find your own takeaway from this.
Dear Headteacher,
I hope this email finds you well. The content of this email is to briefly explain our family’s decision to homeschool our daughter full time, outside of Covid-19 with immediate effect.
I’m not sure how aware you are of our daughter in your school so I will try to put you in the picture of our journey to this decision as we believe there are experiences we should share with you for future reference.
She is now in Year 8 and has struggled with secondary education in all aspects; emotionally, socially and academically. In March 2019 we began having open conversations with her tutor, about the difficulties she was experiencing at school. He was and continued to show empathy throughout, he took action on each conversation and always referred us to the right person to discuss things further with and for that we are very grateful.
Subsequent interactions with others in the school such as the SEN team, were not as warm nor empathetic, but we continued to communicate despite it often being a one way conversation. The SEN lady often gave excuses as to why she hadn’t been in touch with often 1-2 week delays in correspondence. There were times we’d set up a phone conversation and she wouldn’t call, I’d call the school and she was unavailable and would not hear anymore from her despite sending another email. This became exhausting and in the meantime I had organised a GP visit to discuss both the possibility of Aspies diagnosis and mental health as she has now slipped into a depression. We were subsequently referred to CAMHS on a waiting list, a list we remain on like many others.
Communication then fell to ‘attendance interest only’ emails despite me updating on a daily basis with such sensitive subject matter and I began copying in your year head. On the day I received a call from him directly it gave me great hope that we would start to get somewhere with support for our daughter to help her navigate this difficult time. Instead we were met with an attendance focused conversation and if I’m honest I was taken aback with the lack of empathy and the penny dropped, I realised our daughter was not only considered ‘a quiet girl who caused no trouble’ by the teachers but as a whole was just a number.
Time is not on our side with these crucial years in her life to become a resilient female in this world and the ‘break’ in the norm that this pandemic has sprung upon us has given us a strong insight into what can we do for our child. We need to be by her side as she experiences anxiety and panic attacks but to also help her feel that she belongs in this world and to inspire her way of learning, at her pace and that is for us as parents to gift her a year of home schooling.
We need to nurture her emotional, social and academic needs and to do this your school is not the right setting for this to be achieved. Like all things in life not all things are for everyone and while we see great things happening at your school it is just not the right fit. In hindsight she should have repeated Year 6 but it wasn’t until late Year 7 that we witnessed our child struggling to mask what she was experiencing; struggling to keep up with the workload, everything being online, fearing getting it wrong in front of her peers and becoming socially distant.
I hope you can respect our decision that this is what’s right for our daughter in this moment and that there are some lessons to be gained from her short time at your school.
In summary - we are taking her out of school completely and she will not be returning into this particular school. In a years time we will review our next step and we hope by then to have got the support and potential diagnosis to support her journey in education.
An extra note: it is also fair to make a positive mention of one of your colleagues, whose attempts to support our daughter were great but just bad timing, an initial assessment of her academic levels in early Year 7 would have identified the need for academic support at the very least and his support would of had a chance of being much more impactful.
We look forward to this next step in her journey without the pressure of state schooling to help her discover what education is all about in a creative format, an opportunity to see her thrive as an individual on all levels.
Best Wishes
Here is the response we received from the head teacher.
Thank you for your e-mail.
Whilst I understand and respect your decision, I am sorry and disappointed that your daughter will be leaving us.
I appreciate the time taken to feedback but again am sorry that on occasions our communication has been slow or lacking in care/empathy. Our school has always prided itself on treating each child as an individual. It is therefore important we follow up and provide additional support for individual staff where appropriate.
The iPad is not an immediate concern. If she would benefit from using it over the next term whilst continuing to adjust to home schooling I am happy for you to hand it back at the end of term.
I am sure you will have heard about the new resources that were launched yesterday to support home learning;
· BBC bitesize https://www.bbc.co.uk/bitesize/dailylessons
· The Oak National Academy https://www.thenational.academy/
The resources and lessons are good quality and will support other activities and creative opportunities that you highlight at the end of your e-mail.
If you would like to discuss this further when students return (whenever that might be) in terms of your daughters long term educational future I would be more than happy find a convenient time.
Wishing your daughter and your family the very best for the future.
My take home is, that while I believe there are genuine lines of empathy in that response there was not a strong enough response wanting change or improvement and the impact time at their school had impacted our daughters life. Things were so intense for her that she did try to take her own life.
Parents and children or adults need support as an educational setting is likely to be the first professional environment the whole family finds themselves in before going into the mental health system, and the less exhausted they are going into it the better. The benefit is that you will be able to engage with the person much better, and they will grow, develop, and thrive!
Likewise, if there are more obvious signs of fidgeting, reduced focus and concentration, outbursts and meltdowns you will need to provide safe spaces to calm, provide them with things to fidget with, different ways to communicate with a traffic light system, provide outlets and support at all times. You need an additional assistant in the class but you also need to help them integrate into society to reduce segregation.
There comes a time for some children where they need to move from mainstream to special schools especially for the building of friendships so please keep records in support of an EHCP - an educational health care plan. Don't try to hold onto them for your funding, set them free so they can be where they need to be. As I said earlier support families, don't make it more exhausting. Be ready when the family are ready to move on.
On this note we were turned down for an EHCP for our undiagnosed daughter. The response was also generic saying having read your application it has been decided not to go forward with a plan, and if we disagreed with the decision we could challenge it. Disagree, absolutely, and in short if they had read our application on what grounds did they decline it? We are told by CAMHS and the autistic community that this is the response most people receive! Many fight for it, and win but why make us fight, why not support us?
Are you a GP or working within a mental health system such as CAMHS?
I wasn't going to go here but I have to. I need to explain first why I wasn't going to go here and this is because I'm often met by defensiveness as the system is so stretched, and when you offer some help you want us to be grateful that it's not nothing, even though it might not yet be the right help. Please know I am grateful but our story highlights many ways to improve, and surely we are united in that outcome?
Here is why I have to write it - we are three years into the 'system' we arrived after doing our very best as a family. It started well before we reached out for professional help, we had skills some don't have, as we work in the wellness sector. So, when we came to you we needed help straight away. We have had two GP's in this timescale and both have been hugely supportive but they can't help us with our specific needs but they do nudge on our behalf and that's because they see how much we needed help. After our first telephone assessment with CAMHS it was very clear we needed to be referred to them, we even completed an assessment for an Autism diagnosis, and passed it, and then we're told we will progress to stage two (an in person assessment). The latest update was that we were on a 4 year waiting list, in total this will be 6.5 years! Our daughter will be 18, just take that in for a moment - our daughter entered the mental health system at age 11. When we entered it things were really tough but trust me they're a whole lot tougher and more complex now!
18 months into the CAMHS system we received some Psychiatric help from a trainee, she was very good but was way to triggering for her so it was pulled back. I've always been open to letting a trainee be in on a medical situation but when something has escalated it's not appropriate for them to be the sole care. By this time she was incredibly underweight due to a fear of choking when she ate and only managed breadcrumb quantities. She was referred to Great Ormond Street, who stepped in with their very best team, no trainees and I am happy to report she is a healthier weight consistently because of this help. We were referred back locally to CAMHS and we moved to CBT (Cognitive Behavioural Therapy) with another trainee. I felt like she hadn't read the notes at all as she went straight into the tough stuff without building any rapport but I supported her, stepped in to guide where I could but by this time my daughter had left the room, and refused to return so I ended up receiving CBT training as a parent. This was helpful to me and I still use the techniques today but it wasn't helping the extreme isolation, and dependency on me, and this was adding to a depressive state for our daughter. When we were told that because our daughter wouldn't engage with a professional that we'd have to consider medication we were frustrated as not only had we been given a trainee for what was a very escalated case but because it didn't work out, medication was the only way they could see. We declined and asked for a fully qualified therapist first, we were and are on another waiting list. There were times I just didn't know where to turn for help, there were waitlists everywhere we turned, every organisation we were signposted to were at capacity. The NHS would not provide a signpost to private places to go for the ASD assessment and instead made us feel like we would be wasting a lot of money as it may not hold up for an EHCP to be issued. Would this not help a pressured system? I'd call our doctor in tears trying to get help, and she supported as best she could. I rang CAMHS once and said to them 'so to be seen quicker our daughter has to harm herself enough to go to A&E?' 'Yes' was the response. I appreciated her honesty but what is going on here!
We finally received an appointment with a qualified Psychiatrist 2.5 years into the system, and this was partly as we thought we may have to surrender to medication. He was fantastic after having read the notes he spoke to our daughter as though she had the Aspies diagnosis, he helped us understand the many conditions that were now part of her life from anxiety and depression to self harm and his encouragement to get her back within society as the isolation will make it harder. A graded exposure was recommended for example going to Waterstones was the goal but the steps to get there would be getting up and dressed one day, progressing to coming downstairs, then to get in the car, a shorter drive, getting out of car and going for a short walk, all this before the goal. On the first appointment we didn't walk away with a prescription but he said he wasn't averse to it but wanted to try a radical sleep hygiene approach first.
By the second appointment while there were some improvements in sleep, everything else had heightened so as a whole including our daughter we agreed to take the medication. A few days into the medication (Fluoxetine) she experienced intense visual hallucinations, was erratic, and unsettled. We couldn't get through to 111 over the phone or online as it was the weekend, no response from CAMHS, and finally got through to our GP on the Tuesday who supported our decision to pause the medication. No guidance, no therapies alongside the medication, and then we learn the qualified Psychiatrist is moving on, we are told we will receive a phone call from the duty team, and a follow up appointment within two months with another practitioner but by week 7, still nothing, so our GP nudges and then we receive an appointment at week 10 and a phone call. Like anything I am grateful for every moment of support but the duty team can't comment on the medication and instead only talk about the things we are already doing, so it was reassuring we were doing the best things we could but we'd started something we'd avoided for so long and now we have little support to navigate it. In addition in the gap between, the hallucinations continued, she said they had always been there. I guess the medicine lifted the lid on this 'masked' symptom but left her with a vulnerability that was hard to hide from. I also believe for the very first notable time, a sense of shame around it as it was exposed. Despite this unravelling our daughter opened up more and more, and shared the load.
Cue: our new Psychiatrist she is phenomenal, an Italian lady with a fire in her belly to help. She changed the medication to Melatonin at night, Sertraline in the morning - she focused diligently on communicating these to our daughter, she provided her personal email, wanted an update in 2 weeks, and booked an appointment there and then for 4 weeks time. Plus, she was taking our daughters case to their multi-disciplinary team to discuss getting her back to school with an EHCP plan, receiving CBT, and an ASD assessment update. Wow, we were blown away, and I am happy to report as I write this (day 7) that the Melatonin has changed our daughters sleep pattern from 4am to midnight, a 4 hour recovery of sleep hours, she has noticed the positive impact this has had too. The Sertraline is naturally taking longer to ease the anxiety, intrusive thoughts, and subsequent self-harm however, she's had no side effects and her energy is improving. We begin increasing the dose tomorrow. Alongside these she continues to enjoy organic herbal teas from Pukka Herbs, green smoothies from Athletic Greens, and a variety of aromatherapy such as Niaouli, Sweet Marjoram, Orange, Cedarwood & Elemi, breathing exercises, and sensorial fidget toys.
Can it really be down to getting the right person in the system to take action, this really worries me. What if we hadn't had the skills from our wellness careers where would we be? If intervention with qualified staff had taken place earlier than 3 years in maybe medication would not have been necessary, and again saved the NHS money? One thing I have said time and time again - educate the parents! The 5 session course was helpful for a community, to discuss ways we may be accommodating our child's anxiety, and to urge us to self care but what we needed in addition was a recommended toolkit of practical ways to help as we are with our people 24-7.
For you Aspies exploring this space on the spectrum
This is the part of the spectrum I relate to for our daughter. It's part of the autistic spectrum that has previously been described as another name but many including myself feel more at ease with the term Aspie to disassociate from Hans Asperger the phsychiatrist and pediatrician it was originally named after. Do read around the topic to decide what feels right for you.
I spent time reading around this topic with The girl with the curly hair & Aspergirls books plus, talks from Kate Kahl on Tedx, and Sarah Hendrickx on You Tube after a conference she'd done, and mentioned that females with Aspies were 'virtually undetectable' as they are so good at masking but are also often diagnosed with other mental health conditions first, such as borderline personality disorder until that is 'you hear our personal stories'.
Our daughter dipped into a safe animal kingdom, a place in her imagination that felt calm, manageable, and somewhat enjoyable.
As a young girl she played with boys rather than girls as they played physical games rather than sitting around and having conversations. When she began having to hang out with girls this is when she struggled. She never felt liked, couldn't understand why someone would want to be her friend, she even said she had nothing interesting to say. I even remember that 4 friends moved on back home to India and she took it personally. I think back to those strangers in the street who would just reach out and touch her afro and how that must have made her feel.
This social aspect of it being easier to be alone than face others is hard to witness and it certainly highlights the need for us as the world's community to have less expectations of others, and that what may seem like a simple question or statement is not such a straight obvious line for others.
There's been a shadow over the diagnosis of Aspie, and that is due to all the secondary symptoms of it, from anxiety, eating issues, Emetophobia, OCD, intrusive thoughts, and self harm. For me this diagnosis is clear now but only now can I reflect back and see moment after moment after moment throughout her life. Playing back to back with friends as a baby and toddler, obsessive requests to do the same activity over and over and at anytime of night and day, loving the 'made up' world her sister often played in, holding onto friendships from years ago and associating it with happier times, a sometimes bossy approach in leadership of play, wanting to do things her way not to be told what to do, chatty when she wanted to be but closed down when asked a question, vocal about those who in her eyes were misbehaving by smoking or swearing. When she stepped into high school and girly conversations became more intense about boys, and even having your own You Tube channel when all she wanted to do was climb a tree, the social gap grew. While she did have a small group of friends, she didn't understand the conversation but masked by copying others phrases, expressions and laughter making it seem like she fitted in. On this note when you compare it to being put on the spot in a classroom it can come across that you're not very intelligent when actually it's likely to be a misunderstanding of what is being asked. Our daughter is incredible at self-led learning, an incredible pen to paper and digital artist who plays ukulele and guitar, and is able to create fantastic edited videos and even languages such as Korean. Yet in the eyes of an educational system and society she will not be walking out of traditional education with grades. Her gifts are unique as they should be, and we should value them out in the world. Let's create a world where someone doesn't have to be labelled as quirky, a nerd, or different just let us all be who we are, authentically.
Self-harm entered our world
I mentioned the first sign of this topic just as we took her out of school where she tried to take her own life but her anxiety stopped her. Thank you anxiety for that moment of help. Years later it returned along with a lack of care for self, and feelings of unworthiness. I remember seeing the lines on the top of her forearms, at first I thought they were drawn on as she'd often create arty tattoos with face crayons on her body but these were real. I'd had an intense fear of death most of my life I didn't want to die, and I didn't want anyone to die around me, least of all taking their own life. I didn't understand it at all, it triggered silence in me, and floods of tears at night when everyone was asleep. Every morning I place my hand on my heart outside her door before I open it. I never know what I might find but my heart prepares for all outcomes. The evolution from witnessing the first cuts to her telling me shortly afterwards to telling me before and asking for alternatives has taken a year. Just before I published this piece she reached out to me as anxiety was creeping in, what unfolded was 20 minutes of physical jerking after restlessness and agitation, it was so intense that we called 111, we spoke to three people as the care was escalated through the ranks. The last was a doctor who had studied mental health and was very reassuring, he described that it is possible for a Pseudo-Seizure to of occurred due to the intensity of stress and anxiety rushing through her body as an alternative to self-harm. Sadly, as we had rung for support our daughter panicked and self harmed anyway, her alertness lasted till 4am. He encouraged us to communicate what had happened with CAMHS but his advice would be to carry on with the medication as it was still considered a low dose. The doctor acknowledged how hard this is to witness as a parent and took the time to reassure us even though it was 2.30am, thank you to that doctor for his understanding of the support we had so rightly reached out for. It will take some time to build trust with our daughter again as she feels exposed when we involve other people. She was calm enough to converse till 4am this morning to start rebuilding trust and understanding together.
Please don't ever stop being there for the person, don't run away from the hard stuff, even if you have to sit in silence. Massage healing cream to the areas in silence, be there, be open to the way in which for them it releases pain, suffering, and fear. Hold them, don't rub it away. Be in the know, talk when called upon, offer alternatives such as ice burns or elastic band flicks, outlets such as journalling, art, sensory toys, and weighted blankets. Never give up, be strong, and together it will heal at its pace.
An open conversation
As with everything, when you unfurl and share your truth, your truth is someone else's truth. As I said before I've been less than 'okay' so when someone asks I speak my truth, still much gentler versions than the full truth but I've gone from sharing nothing to sharing something. My words here right now on the page and said out loud speak my truth - thank goodness for my own therapy but also to you for getting here with me, helping me to step out of the loneliness. It is a long life experience and I hope my words help support you, and evoke change.
Note: Please know this piece is written by me, it's my experience, interpretation, and a sharing of what I have learned. Any references I have made are not said with ill intent to offend anyone. Just sharing a story, and more specifically my story of it not that of anyone in my family.
I have excluded names out of respect so may I ask those who know us as a family not to refer to any child's names in any comments about the post, thank you.
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