My Brilliant Boy

Annie Moody - 15 Mar 19

It’s hard to put into words how you feel when your son is signed off from the NHS as not having an Autism Spectrum Disorder (ASD) condition, backed up by two educational psychologist reports stating similar outcomes. Obviously this is good news, as I never wanted my boy to be labelled, but the areas that were flagged up were his severe anxiety, his inability to control his anger with his closest family, a short demanding attention span and his need to control situations; but due to his ability to socially integrate so well and make great friends, along with a few other boxes that were ticked, he has been signed off.

So this is the start of our journey in a different direction. As I said, it’s not that I wanted him labelled, but being handed a sheet of A4 paper with some links to different Cognitive Behaviour Therapies (CBT) and summer camps on it, makes us feel like we are very much out there on our own in finding a way through something we are not qualified for. This is a personal account of where we are right now. I am no professional, I’m just a mum totally in love with her son, who inspires us and shows such bravery every day – I just want to help him.

Our son is bloody fantastic, the master at making those around him laugh, eccentric in his dress sense making him almost completely confident in the person he is (not wanting to conform to what society expects him to wear). He is caring and loving beyond words with the people he holds close, he has great friends who he genuinely adores and is passionate about the outdoors and sport, in particular…rugby.

We could not be prouder of him, especially with the daily challenges he faces.

His anxieties can stop him from leaving the house, refusing to clean his teeth or not knowing what shoes to wear, stop him from walking into a best friends’ party for reasons I still haven’t fathomed, joining a sporty activity with coaches he has known for years or other seemingly standard tasks. When this happens, I see in these moments that he is out of control and unable to pull himself back to a balanced rational way of thinking, it’s heartbreaking to watch.

Food sometimes helps, he is super active and when he over exerts himself he can quickly dip and the need to have some form of snack on us at all times is essential.

But sometimes food doesn’t help.

Academically he has been behind but tries so hard that he comes out of school exhausted, so much so that we have cut his after school activities significantly. However, where all this pressure manifests is in his behaviour at home. His need to control, understand his routine, his anxieties around change and his unquestionable stubbornness to compromise. Simple tasks can be very overwhelming for him and we try our best to accommodate his frustrations and fears but it creates a difficult home life with emotion boiling over causing arguments between him and his brother, his father and me. The battle is real.

The saddest element that we all find is his remorse after an outburst. He is unbelievably sad and sorry if he has lashed out, shouted, refused to move, caused stress beyond words or reduced me to tears.

As parents having two boys was always going to be full of energy and challenges, but bar the standard pushing of the odd boundary, back chat or grumpiness, our eldest has sailed easily through the first 11 years of his life. Something that won’t have gone unnoticed by his little brother. Academically he has coped well and taken up any sport he has tried with ease, even joined a samba band which he has loved, so to have a second child facing so many challenges has, at points, made us feel like we have failed him in some way.

During his life so far, he has been so misunderstood in public, we get the glances, the shake of the head, the tuts if he has kicked off in a restaurant, park or at the end of a wonderful family day, making him seem ungrateful and bratty. Sometimes even from some of our nearest and dearest. That pressure from outside to be in control as the parent, to conform to what society expects, can be so overwhelming and disheartening. Our protective instinct kicks in and we just want people to understand that it is exhausting and something we are all having to learn how to cope with daily. Being judged as a parent or seeing your child judged, hurts like no pain I have ever felt.

I guess the difficulty in the sign off is that we can not pardon his behaviour in public with ‘so sorry, he has a condition’, because he doesn’t. However, the fear and the prediction I have is that it will manifest itself as he gets older. It is our role to surround him with love and our constant support to help him understand that he is safe and to try and help him to not let his anxieties overcome his ability to grow into the amazing young man he could be. The fear of not being able to do this is suffocating.

When a person struggles with their mental health it can manifest in so many ways and without understanding can cause so much damage to a child as they grow up. How many adults do you know have said ‘I just wish I had been more understood at a younger age, that someone had listened, then maybe the depression wouldn’t have taken a hold, the anxieties I face daily wouldn’t overwhelm me or the dark thoughts that claim the majority of my day, restricting my ability to have the confidence to stride forward, may not have grown inside me.’

I am by no means saying that all adults suffering with their mental health should have been supported more as children or that they had an unhappy childhood, as clearly some don’t experience their symptoms until adulthood and some experience trauma later in life that goes on to impact their lives, there is no ‘one’ catalyst. This is purely my observations based on experiences we have encountered.

For us it is learning to be the best parents we can be for our little champ. To find alternative therapies that help him stay calm and give him coping strategies that will equip him for his future. We are looking at a parenting course to help arm us with ways to guide him, he has learning support and speech therapy in school weekly and cranial sacral therapy along with functional neurology work every few weeks. We have also cut certain things (where possible) out of his diet, but by no means are we perfect (at all). We, like everyone, lead incredibly busy lives, too busy at points, and when it’s all got too much, we have lost our shit, more times than I would like to mention. I’ve screamed into pillows, punched cushions and thrown whatever soft item was near to hand. I have shut myself in the bathroom and rocked, crying, not being able to cope or know what to do. Resulting in questioning myself. What help does this do? I guess it removes me from the situation and I exert my anger more privately…but is that the best example? Does it teach him that you have to hide your emotions? Instead what it does is cause more anxiety for my little man who thinks he has created more stress for me. A no win situation. Everyone loses.

You may wonder why I am sharing this? To be honest it helps… and potentially there is another parent out there reading this that will connect with what I am saying. I don’t have the answers but hopefully it will give them comfort in knowing they are not alone. I also appreciate that I am speaking about two separate areas, ASD and mental health, but I guess I am just preparing myself for the possibilities that could occur in the future.

So how will we make this a positive step forward as parents? Time out for ourselves, gym sessions, yoga, running, a good book, family time, coffee with friends, nights away as a couple or one on one time with each of our boys, will help us to keep our emotions in check and do everything we can to stay calm when daily incidents arise.

Label or no label, our son has challenges. Maybe he will grow out of them, maybe he won’t but we will keep learning, developing and trying our best to be the support crew he needs, because he is, without doubt, the most brilliant boy and surrounding him with our love and creating a safe space for him to grow is our sole mission.

Annie Moody

Devonshire lass living near Bath, mum to two gorgeous and very active boys. MD at Mad Dog Sport C.I.C, intergrating programmes into state schools, to encourage boys to stay in education, using rugby as a tool. Married to a former egg chaser and the co-founder of The Lewis Moody Foundation, raising vital funds to support projects within The Brain Tumour Charity. Youngest son faces some challenges which we are navigating through, to find the best way to support him. I guess I’m just continuing the conversation to help support other parents to not feel alone in this crazy world of parenting! Love good food, gin, books, podcasts, the coast...Happiest in a hoodie! A x

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