Boy's Being Boys -Mar 30, 2022
Our story of autism and how we gained balance.
I always knew my son R was different, yet somehow, I was the only one who saw it. Those close to me told me I was imagining it and that he was perfectly normal, happy and healthy. They didn’t see the struggles we went through together, the delayed learning, the constant and excessive need for my attention, the angry outbursts, the frustrations, the deeply loving and caring compassionate boy who wouldn’t share, who wouldn’t do simple things like feed himself, the screaming till he was blue in the face when bath time came… All perfectly normal behaviour for a boy I was told.
As he got older and grew bigger, his temper grew with him as did his outbursts. By the time he reached 8 he was having difficulties with school, he absolutely hated it and he made that known, but only to me, he was a hard worker and his confidence was developing well in the school environment, academically he’s average and needed no additional help in the classroom, with him being able to hide behind his social mask I was again unable to get any additional support in place for him or myself. I discussed my concerns with his dad who was starting to notice a decline in his behaviour, but was quick to dismiss it as boys being boys (we’ve heard that before!). Then one day whilst at his dads he launched a full on attack at the bathroom mirror, and was then dragged from the bathroom, kicking and screaming, in order to prevent him from putting his fist through the mirror! Why the violence? Because the toothpaste tube didn’t do what he wanted and that angered him…. That’s just boys for you though…. Isn’t it?!?
The next 3 years would prove very challenging for us, with his moods dropping every 3 months, he was going “Off the rails” and I was running in circles trying to find someone to help us. I finally had a breakthrough when he was 10, he had been sitting in his classroom carving up his arms with a pair of blunt scissors, his teacher was unaware, as he is very calculating when he wants to be and he made sure she wasn’t watching, fortunately his step sister who shared the same class at the time saw exactly what he was doing, and had the courage to tell me while the evidence was still fresh on his arms. It was at this time that his masked slipped and he couldn’t function as he had been able to before, he was suicidal and voiced this with great ease, his daily mantra at the time was “Kill me now” and his special request, just for me “Please mum, why won’t you just kill me”? Hearing your child asking you to kill them so freely is absolutely heart wrenching and something no child should ever feel the need to ask and something no parent ever wants to hear. According to the school nurse, he’s just a hot headed boy and we needed to get used to it… Is that an upgrade on boys being boys, or just a step to the side?
The Early Years
Having the life sucked OUT of you wasn’t true for my lad, he entered this world on a wet and windy bank holiday Monday via a ventouse delivery, which is also known as a vacuum extraction, he was quite literally sucked out into this big old challenging world and sported the cone shaped head associated with this type of birth. I have since learned that, for at least 80% of children with developmental delays, including attention deficits and autism, there is a history of traumatic birth. The brain is protected by this hard and bony skull, which at the time of birth is designed to accept the temporary compression of the birth canal and expands fully when the baby cries immediately after birth, it was never designed to be able to handle such brutality and the shape of his head kind of proves that theory, as does the copious amounts of medical research, none of which registered with me at the time.
Our first day home was challenging, I was 21 years old and I had a baby who was vomiting black gunky fluids, as a first time parent it terrified me, his first night was equally eventful, with him screaming blue murder from midnight till 5 am, I paced our flat trying everything I had read in the books, and not a single thing worked! I guess by the time he did sleep, he had literally screamed every ounce of energy out of his tiny body and had nothing more to give.
I have since learnt that if the nervous system is damaged, baby will typically exhibit common signs within 24-48 hours afterwards and those signs include spitting up or vomiting regularly after being fed and excessive crying marked with the failure to console the baby, we can tick those of the list.
Our next challenge was reflux and wow, that boy was amazing at projectile vomiting, I recall bouncing him on my knee after feeding him one day and he took fire and aimed, narrowly missing my face, I’ve never seen his dad go as quiet and pale as he did that day, as I simply handed him “his son” and calmly changed out of my freshly “decorated” clothing. Of course, this was something I mentioned to the health visitor, I recall her sneering look as she assumed I was a neurotic young parent, all babies spit up a little, right? I was criticised further when he dropped from the 75th percentile down to 25th, yet I still wasn’t listened to.
I never went to other mums houses, in case he threw up, so I was delighted when we went out for coffee with some mums from our NCT class, that delight was short lived, he covered one of them with vomit, head to toe, dripping! She informed me that this wasn’t “normal” and urged me to go to our GP. Funnily enough, I was never asked out, or asked round to any of their homes after that, but I did get my reflux diagnosis.
As suggested, I booked an appointment with the doctor, who put the frighteners on me, telling me that he needed to send us to A&E straight away, he could have a twisted bowel, he may need surgery. So off we went, we needed a urine sample for the paediatrician, that was fun…. One sample later and out comes doc who said “you’re his mum and mum’s almost always know best, what do you think it is?” “reflux” I replied, I was right, and we left with junior Gaviscon, this problem was now solved.
Over the years we’ve had our ups and downs, we’ve had our challenges and sometimes it felt like it was getting to be to much, it never was too much and I always found new reserves. One time when I was really struggling, a friend of mine told me to slow down and look at the world like he did, and to act as if I too were seeing things for the first time, I did this and it really helped me to process the world a little differently, it helped us to re-connect at a time when life was throwing challenges from all directions.
School and it's challenges
School has been a real mixed bag, when R started in reception he was blessed with a Mary Poppins kind of teacher, and he was fortunate enough to have a repeat experience in year 1 with another wonderful lady. She was the type of teacher who commanded the attention of a room just by stepping foot into it, I never saw her look cross and I never heard her raise her voice, as a result he did everything she asked and more, he adored her and expected all teachers to be like her, he was disappointed when his expectations weren’t met and he went from loving school to hating it. He did an amazing job at hiding his feelings towards school while there, letting rip when he got home to his safe place, i.e. me.
He was an average performer and it wasn’t until year 6 that he started to display erratic behaviour during school hours. His behaviour at home had declined, he was depressed a lot and I had worked out that he was OK for 2 and a half months, then his mood would drop, he would have what I can only liken to a psychotic episode, this would last for a couple of weeks and then his mood would level back out for another 2 and a half months and so a cycle was born.
During preparation for SAT’s his step sister came to me and told me he had been sitting in the classroom carving up his arms with a pair of blunt scissors, this had gone unnoticed by the teacher (who was the designated safe guarding officer), I made an appointment to see her whilst the marks were still fresh on his arms, the obligatory referral was made to the school nurse. While we waited for an appointment my lovely lad was gripped with a darkness like I had never seen before, he wasn’t functioning and his depression had really taken a hold, maybe it was the pressure of exams that made this attack as bad, whatever it was, it wasn’t going anywhere anytime soon. This was to be the most challenging heart wrenching month of parenting that I never wish to repeat.
It was during this time that he was verbalising his wishes to die, screaming at me with everything that he had to kill him, please mum, kill me now, why won’t you just kill me? What do you say to a child, to your child when they are in this mind space? At the worst point he tried to throw himself out of his bedroom window, he told me that he’d wait until there was a lightning storm, find a metal pole and electrocute and kill himself, he had also developed a habit of trying to strangle himself. One day I tapped him firmly on his arm to get him to release the grip on his neck, and this was the only thing that the school nurse picked up on when we spoke, that I had laid hands on him and that I was wrong to do that, a friend told me to leave him the next time he did it, he’d loosen his grip before he passed out and worse case scenario we may get the additional help that we so desperately needed at that time, good advice is always hard to follow, but I followed it and with everything else I had done he dropped the habit. That same nurse told me he was simply a hot headed boy. CAHMS told me he wasn’t severe enough for them to offer help, they would only get involved at the next level… It wasn’t all doom and gloom, we had a brilliant support worker allocated to us, he listened to both my son and to me, he made suggestions that did make small differences to our daily life and that relief was a godsend. When the nurse signed us off and mental health services signed him off on the same day, I was actually relieved, this was the start of taking control back. We had exhausted all of the “box” options, and now it was time to start thinking, and doing things that were very much outside of the box, such as hypnotherapy… and embarking on my journey to understanding neurological development.
Having him cycling with his moods was also a gift because I knew that I needed to come up with a plan and have it firmly in place before November, which was when he was likely to have another episode, I met up with an old friend, she was the friend who had helped me to see life through his eyes all those years ago. We arranged to go camping for the night where she gave me some great advice which I was able to implement soon after our trip, she also reminded me that there was no better person in the world to help him through his struggles, and as his mum I knew him the best, therefore he trusted me, I really needed that reminder.
Back when I first wrote our journey I often wondered if it was me, if I aided his neuro-divergency, I knew logically that I hadn’t but we live in a world where we are so often judged, and often we’re our own worst critic and judge all rolled into one, when it comes to your kids, that voice, that niggle is amplified ten fold, and it’s hard not to try and find a place to lay blame. It's only years later and him being almost 16, that I now know I did right by him, but I'm still my biggest critic at times.
Not long after our camping trip R had a meltdown, I got down on the floor with him, pulled him into me and told him that this scared me too, his rigid body soon relaxed and he turned over and asked me what I meant, in that moment he realised that we were both experiencing fear, that we were both scared and felt really helpless, we had a really amazing chat and we decided together that we’d give hypnotherapy a go. I went off and wrote up a script and treatment plan for him, kids are exceptionally open and receptive to hypnotherapy, he had 3 sessions with me and he hasn’t had an episode since. I also took the time to teach him how to breath, how to meditate and how to be more mindful in day to day life, he, like most of us needs reminders to do this, but the skills are there and when he’s starting to display anxiety or frustrations he simply needs a verbal reminder to breath and more often than not it helps him through.
Please note that I am a qualified hypnotherapist and wouldn’t dream of attempting to re-programme minds (young or old) without the relevant knowledge and experience.
Healing and re-connecting
R loves the sound of his own voice, he likes to experiment with it and throw all sorts of noises out there and to share his full range of squeaks, squeals, growls and whatever other noises a kid can make, he’s been at it non stop for a full 2 weeks, there hasn’t been a moment in the day for quiet, yet still we’ve made progress, I have at times wanted to sit and rock in the corner, I have wanted to run away, drive away and never come back, yet I don’t do that because I’m mum, and I’m on a mission and do you know what? it’s working, despite what others may see as a set back I see the subtle changes stacking up and they’re stacking up fast.
In 2017 I took the decision to home educate, having my son home all day has had its own set of challenges, like the constant noises. Getting him to engage in anything that slightly resembles learning has been difficult, finding balance between work and home life has been incredibly hard and somewhere in the middle of this, the universe had its own agenda for me and my very specific learning journey. It all started with the brain and neuroscience, which was our first proper topic in our education curriculum. If you’ve ever studied the brain, you’ll know that there are about 10 different explanations for one function, and the names of these parts / functions are all incredibly long and medical, I’m convinced it’s like this to deter us from attempting to learn, but if you’re ever going to understand your inner workings, I figured that it was best to start with the operating system that is our brain. This learning journey led us to meet a neuro-development expert. I met Sue whilst networking, this meeting wasn’t simply chance, it was meant to be, and as a result we have learnt how to re-wire our brain.
What is a reflex integration programme?
At around 12 weeks in utero babies start to develop reflexes, these reflexes are the building blocks for early development in all children. Once a reflex has done what it’s meant to do it disappears, if however, there is a break in development, the reflexes can stick around and this can cause sensory problems and neuro-diversity. As children develop so quickly, there is no natural in built way to re-visit the stages of early development, so we manually revisit these stages which helps the brain to create new neural connections. Difficult births or assisted births like my son’s can be the cause of these developmental deviations.
Since starting on the programme the transformation he’s undergone has been nothing short of a miracle. Within 3 days of starting he was eating previously hated foods and within 6 weeks my once sullen, moody, withdrawn child has morphed into this almost easy going kid, who is open to guidance, calmer, more patient, has focus, is eating foods that he wouldn’t have touched before, his attitude is hugely improved and his ability to hold a two way conversation… Well he can do it now! He’s more open to affection, he’s getting in touch with his more empathetic side and he takes no for a real answer. We haven’t finished this course yet, and we have a way to go before we are, I am so excited to see where this path takes us. It’s taken so long to get to this point and it’s so alien to be taking these huge leaps forwards, it’s been a real game changer and I feel so blessed to be in this position, it shows me that throughout everything we’ve been through, I handled it, even in the times that I couldn’t see a way through, we did it, together.
I hope our story has helped to show that there is hope, autism and neurodivergence isn’t this horrific disorder or death sentence, it’s just a variation to what is perceived as being “normal”. Now my son and I are working together, he's the lead consultant on a parenting programme for autistic children, we've written it together and he's been there every step of the way, he has a dream to help people and is just as eager as me for parents to have access to knowledge from the autistic community. He's turning into a wonderful young man, who is warm and kind, we still have our challenges, but we get through them together like we always have done.