Three
His eyes widened with each step as I approached. I was armed... and he knew it.
Spidey senses awakened, the hairs on his arms bristled, standing to attention. His eyes darted nervously; the tingle inside his head running through every neuron in his brain, throwing his mind into overdrive. His fingernails clawed deep into sweaty palms as the whites of his knuckles rose up to greet him. My voice, a calm accompaniment to Rachmaninoff, sometimes Tchaikovsky, was not enough to thwart his sense of impending doom. As my hands reached out tentatively for his little feet, his back arched and he recoiled at my touch. Instinctively he kicked back with everything he had, rejecting the possibility that this moment may be survivable. The sound of his screams sliced through the air. No time for reflection. And then I pulled his heaving body close and tightly squeezed his sobs until the waves subsided. I moved slowly, allowing him to feel my fingers running through the blond fronds framing his face, then gliding softly downward, gently stroking his cheeks, I wiped away his remaining stray tears. His body collapsed into mine, his heart rate slowed to match my own.
"There there...," I whispered, "it's gonna be ok." Tossing the offending pair of ankle-high socks aside, I closed my eyes, swallowing my own pain. But the lump in my throat remained. I rocked him gently back and forth, mirroring my own need. "We'll find another way... we'll find another way, baby boy. It's just a pair of socks."
And so, we changed to seamless bamboo socks, which was a game-changer in many respects. Truth be told, he hated them less than the cotton ones - I took the small win. Somedays were better than others.
But the truth was... it was never just a pair of socks.
I knew that. My own spidey sense was already on high alert.
Four
The phone rang. The all-too-familiar number popped up on the screen. I took a deep breath, exhaling slowly before picking up. "Hi. Can you pop in a little earlier today to fetch him? He's tired and he's not coping very well." The voice on the other end of the line was sympathetic but commanding. The question was framed to give the illusion of choice, but in truth, there was no choice. If the call came, which it did more frequently now, I had to respond.
The start of his last term at Preschool had brought with it a new wave of concerns. He had become clingy again, screaming as I left him on the doorstep with his teacher each morning. His separation anxiety overwhelmed him. He seldom played with his friends and spent all of his time glued to his teacher. He still ate and napped with the 2 year-olds. Any attempts to keep him from sleep and to eat later with his peers resulted in him waking up in a bowl of food, his face smothered in sauce.
Each day that I arrived to pick him up, I would park outside the old Grade 2 listed building, turn off the car's ignition, and just sit there. For a good few minutes, I took deep breaths, willing myself to confront my afternoon, never knowing which version of my child I was going to get. Some days were almost impossible to bear. I would collect a seemingly carefree and happy child, get into the car, and then without any provocation he would dissolve into tears and spiral into meltdown. I was coping with my own stress and anxiety at the time (early onset menopause - something I was unaware of at the time - a story for another day!) and his distress felt insurmountable. Some days I coped better than others. Always he fell asleep in the short five-minute drive to my eldest's school. But that just made for a challenging time when he awoke. One thing I did know, was if the reports of his morning at pre-school were glowing, I was in for an afternoon of hell.
We had already worked out that if he was in control of his personal space and the noise levels around him, he was fine. If not, he quickly became overwhelmed. Clothing remained a real issue, especially waistbands, underwear, socks, and shoes. Even though we had switched to soft seamless bamboo socks, his frustration levels would hit the roof if he couldn't get them to line up perfectly. Underwear had to lie flat under his shorts, with no folds or curls, and the waistbands had to align, otherwise, he would rip it all off. Shoes had to be tight or they'd be kicked across the room.
I arrived at the Reception, rang the doorbell to gain entry, and was met by the Preschool manager. She ushered me toward the Parents' Room and asked me to wait while she called for my son and his teacher.
I stopped abruptly as I entered the room. The few chairs available were upended, scattered around the floor. The toybox was empty. The bookshelf was empty. Their contents were strewn around the room. Files lay half empty on the table, punched documentation haphazardly reshuffled into piles. A side table that once housed teabags, coffee, sugar, and sweetener sachets, was lying on its side. "Oh my goodness," I exclaimed, "it looks like a bomb went off in here!"
"It did. And here he comes now", came the reply, gesturing to my son walking hand in hand with his teacher down the hallway towards us.
I knew that the thought of starting big school in the Fall terrified him. Physically he was four. Mentally and emotionally he was closer to two. He didn't know what to do with the idea of it. And when it all got too much to bear, his choices were limited: implode or explode. The Pre-School had up til then insisted that he was just a slow developer but my intuition told me otherwise. I knew better. Instinctively I had always known. There was no denying that we had a child with Special Needs.
Spotting us, he hurtled toward me at full speed, a mix of sheer determination and joy mapped across his face. Arms outstretched to meet my embrace, his mop of blond hair bouncing up and down, he slammed his body into mine, enjoying the sheer physicality of the moment. His love has always been very robustly displayed. Fast forward six years and heading into his last year at Primary School, he still greets me like this.
Five
"Mommy, why do they hold me down?"
I looked into his inquiring face, digging deep for the answers that he needed, for the answers that I so desperately sought.
The teachers at Primary School had started to restrain him each time he had a meltdown. They explained that it was for his own safety and that of his peers. The thing is, he had never hurt any of his peers. His anger and frustration were always directed at himself and his inability to cope with the situation at hand. His spiraling descent into chaos was usually preceded by sensory overload or tiredness (they often went hand-in-hand). More recently he was showing increasing signs of being inattentive and was struggling to cope with the demands of the classroom environment. He had a growing repertoire of coping mechanisms, and fight or flight entered the mix. Flight at school involved running out of the classroom and up the nearest tree, seeking refuge in the school library under a chair, and once involved him trying to climb over the school gate to escape the grounds. This is what concerned the school most of all. Fight involved a complete meltdown and self-harm in the form of biting, pinching, and punching himself, or banging his head under a desk or against a wall. In meltdown, he would often walk around the classroom knocking everything off the tables and shelving, pulling all the children's bags and coats off the hooks in the cloakroom, and causing disruption to the lessons.
I had been pushing back against the school regarding their constant need to restrain him as I disagreed with what they were doing. Arriving one day at school after being called to collect him early, I discovered my five-year-old in the arms of the headteacher, in a lock hold on the floor. The Head informed me he had been that way for almost an hour. My little boy looked exhausted and broken. Mostly broken. I set about picking up the pieces and asked him to release my son immediately. My child just sat there, limp, blank, emotionless, and I scooped him up in my arms and walked out the door. I knew I had to do something but I was up against County Health and Safety regulations. I figured I had a small mountain to climb!
And so I answered my child in the simplest and most honest way possible, "I don't know why they do it, my angel, but your mama is going to find a way to make them stop! But first, I need your help, okay?"
A weak smile crossed his trembling lips.
"Can you tell me why you run, baby?" I nudged.
He cast his eyes downward and then, raising them again, offered up his explanation. "I feel the bad growing inside me, Mommy... in my tummy, and I'm just trying to get away from it. I think if I can run really fast, that I can... " His voice trailed off... He stared intently at me, and then as if in quiet conviction, repeated his last words... "I can..."
I later learned that the acute stress response automatically activated by the body in response to a perceived threat or danger, dumps adrenalin into the bloodstream which results in the fight or flight response. So once the process is set in motion, it becomes challenging for an adult, let alone a young child, to deal with the resulting physiological and psychological impacts on the body and mind.
I sat alongside him, just listening. He turned again to me and spoke. "Mommy, I just wish they wouldn't hold me down. It hurts my arms and legs so much." I gazed into his little face, his beautiful blue eyes no longer sparkled. Their muted tones matched his mood. I could feel the cracks opening in my heart. I was determined to fight the good fight for my child and let him know that I would always be his strongest advocate and his closest ally. As I processed what he had said, he added, "If they just leave me alone for five minutes, I promise I will go away and dry my own tears and then come back and be ok again." My heart broke into a thousand pieces but my son had just given me the answer I was looking for!
He needed a safe place to escape when he felt overwhelmed, and I was determined to give it to him. I read up on possible solutions and then contacted the school again with a proposal. Within the week my son had a pop-up tent permanently in place inside the Headteacher's office where he could go for respite if he ever started to feel overwhelmed. A few months later he had his own 1:2:1 support teacher in school and was working in the old medical room which the new Headteacher converted into a private classroom for him. He started to build trust with adults within the school environment. He started to thrive.
Funding was tight and in order to continue to get consistent guaranteed support in school he needed an E.H.C.P. (Education Health Care Plan) with the Local School Authority. The wheels were set in motion and with the support of the school, we were referred to a Specialist Paediatrician because, after much research by myself and the school, we suspected Autism Spectrum Disorder, ADHD, Demand Avoidance, and Sensory Processing Disorder. Quite the mixed bag. However, we suffered a setback when the Paediatrician informed us that, in his professional opinion, there was nothing wrong with our child! When those words hit me, it was a punch to the gut. I was left gasping for air, flailing desperately for the oxygen masks.
Fortunately, we had an exceptionally supportive school that agreed that the diagnosis was flawed. But it was to take another massive meltdown and reach a crisis point before things were taken more seriously by those with the ability to help.
Six
We were at home struggling with something that had overwhelmed him, resulting in a massive meltdown. He was kneeling on his mid-sleeper and I was standing alongside the bed, attempting to console and encourage him.
"It's just too hard," he wept.
I tried to explain that his brain worked differently from most people. That he was a bright young boy with an incredible mind but things just took a little longer for him. But he was resolute in his thinking. "I'm stupid! I'm dumb! I'm never going to be able to do anything!" he wailed, banging his head against the wall. His self-esteem hit an all-time low. While his friends were dreaming of becoming firemen, astronauts, and ballerinas, he was setting his sights on flipping burgers for the rest of his life.
I gently moved him away from the wall but he started punching himself in the face, biting his arms, and screaming louder, his lack of self-belief dissolving into sobs. "It will all be ok, I will make sure of it!" I coaxed, not knowing at the time whether it was a promise I was empowered to keep.
And then came the kicker...
"No, it won't! It's too hard. I don't want to be here anymore. I want to die! Please just kill me or I'll kill myself!"
No parent ever wants to hear those words coming from the mouth of one of their children, let alone a six-year-old. I fought hard to remain calm and hold back my own tears. I pulled him close, "I love you. I won't let that happen to you. We are going to get through this together! I will always be here for you." But he continued, "You can't stop me. I'm going to sneak out of the house in the middle of the night when you aren't watching, and I'm going to go lie down in the middle of the road and wait for a car to run me over."
I managed to record most of this interaction on my phone. I pulled together detailed evidence of his sensory struggles with clothing, noise, and space. I collated evidence of demand avoidance at home and school, and his inability to remain focused and hold attention for more than a few minutes. And I completed a self-assessment for Autism detailing all the synchronicities. This together with evidence from the school was enough to get the attention of our local G.P. who referred us immediately to C.A.M.H.S. for Autism Spectrum Disorder and ADHD assessments, and to the Occupational Therapy Unit for Demand Avoidance and Sensory Processing Disorder assessments.
Eight
Autism Spectrum Disorder with ADHD together with Demand Avoidance and Sensory Processing Disorder.
Most people could not understand how happy that letter made me. You see it didn't make my child autistic or inattentive. It didn't make him demand avoidant or sensory. It simply confirmed what we already knew and opened the doors to longer-term support both within the school and without. I cried happy tears that day.
We currently have the diagnosis and an E.H.C.P. in place. In addition to this, we went gluten-free in 2021, on the advice of a friend, and this was another game-changer for us. Within two weeks of having done so, my son's teacher called me aside after school and asked for a few minutes of my time.
"Your son is a different child! In the past week, he has started engaging in class, raising his hand to answer questions, and passing tests. We haven't changed anything so I was wondering if there was something that you were doing differently at home?" she asked.
I was blown away. "Well, this is maybe going to sound kooky to you," I chuckled in reply, "but we went gluten-free on the advice of a friend who saw remarkable changes in her child's life by doing the same thing!"
I called my son over and told him how happy his teacher was with his recent progress, and asked him if there was anything he had noticed that was different.
"Well Mommy," he replied, "you know if you have wax in your ears and it feels sticky and you can't hear as well?" I nodded my head in reply. "It's like that! When I tried to think before, everything felt all sticky and mixed up inside my brain and I couldn't work out what I needed to use. Now, the sticky is gone and I can see things more clearly."
Ten
My son has come a long way. He wasn't born a hero, but in his own life, he is definitely one in the making. He still struggles with self-esteem and is about two years behind his peers academically, but he now has a willingness to learn, engage, and compromise. His friendship circle has widened at school and he is leveling up in his reading and writing. He still has demons to face - mostly his own - in learning to regulate his emotions, and having the courage and tenacity to endure and prevail over his challenges. But his insights into his own struggles are amazing.
His journey is far from over.
But I'm rooting for him.
ps: he's currently wearing odd socks, one blue, one green, both cotton with seams - his choice 馃挆
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