Raising Hell with My Sweet Piece of Heaven (and a secret about Gluten!)

I have... One minute J was this gorgeous, sweet, gentle, and funny little boy, and then, as if a switch had flicked, he was tearing things to shreds, kicking over bins, throwing the biggest meltdowns you have ever seen in your life. Let me tell you we are not talking about the terrible twos here either, we are talking moments of pure and utter devastation where you can see that your little one's world is genuinely being ripped apart simultaneously from the inside out, and the outside in. Moments where you can only stare in disbelief and ask yourself; who is this and what have you done with my child? And then he would curl up into the tightest little ball of fury and hurt possible; a prickly injured hedgehog trying to escape the torture of discovery.

But our children were always meant to belong. They were meant to be a part of our tribe and our family, and we knew this the moment we laid eyes on them. Red tape ensured the official process took longer, but I didn't need a court order to tell me how much I was in love with my two little boys, and that I was their "forever" Mom. Things with my eldest, "O", age 10, were a breeze, not even the terrible twos...the 'effin fours a little mind you, but he was Mr. Cool Dude. Nothing much fazed him. After some initial struggles at school, he came into his own and is now on the brink of entering High School. My younger little dude, "J" on the other hand, also a very cool guy, seemed to struggle with everything!

In hindsight, his struggles have always been there and I can probably point to around 2 years old when I first noticed something was not quite right. He took exceptional offence to people laughing around him, believing that they were laughing at him! At pre-school he didn't enjoy engaging with any of the kids unless it was on the scooters and ride-on cars, wouldn't take part in group activities, hated circle time, spent lunch breaks with his teaching assistant, took everything literally and to heart, and at age 4 still needed nap time with the under 2's. He would frequently fall asleep face down in his food bowl at lunchtime. He struggled to verbalise and communicate both in school and at home and the frustration caused him great angst, and we would suffer with the fallout.

Each and every day that I collected him from preschool I had to prepare myself mentally and emotionally. I would drive into the preschool car park, turn off the engine, and just sit doing breathing exercises... never knowing what scene was going to greet me when I walked through the large pale blue double doors to the big blue country house that was now a day nursery and preschool to my two children.

Then I would gather my thoughts, scold myself for entertaining the rising dread and glide in with a cheerful breezy hello. He would run to meet me, give me the biggest hug and we'd walk out to the car, my body seduced into a false sense of calm. Once inside and the doors were shut, all hell would break loose. He would just crumble...and when I say crumble I mean explode! It was as though he had been holding every little hurt and frustration in for the whole day, and when he saw me, that was it! I was going to bear the fury of hell. At first, I was really upset and struggled to cope emotionally with the constant onslaught of emotional breakdown from my son. The preschool had assured me he was progressing fine, no reason for concern, just a late bloomer, but they were not seeing the devastation that I saw every single day. Some days I honestly couldn't cope and I behaved rather obtusely, to my shame and regret, but I was a mom falling apart too. I would turn the radio on to drown out his screaming for just a minute before the short journey to my eldest's school. On those days I was already beaten, trying to juggle the demands of the day job in the office and constant calls from the school to fetch him early due to meltdowns, not to mention the late nights spent trying to get him to sleep because he was sleeping at all hours during the day. It was either block it out or feel compelled to leave the car screaming myself. He would compete with a set of vocal cords from hell ...and win the argument, the radio would go off, as I'd be left wagering the bargaining chips. Then we'd both sit in silence for the 5-minute drive to my eldest's school; both defeated in our own way. In those 5 minutes, he would exhaust himself emotionally and fall asleep almost every single day.

But once his emotional energy was balanced and we had enjoyed our cuddles, he gave the appearance of a 'mainstream' child (for want of better words). Fortunately, I learned quickly, and knowing that there was something more to uncover, found ways to distract and console my wounded child.

When his last term at preschool started, separation anxiety at the school drop-off became the norm, as did struggles with transition and social interaction with all but a couple of his peers. The teachers could not pinpoint his triggers to meltdown. One day I was met in the reception area at pick-up and was asked to wait in the parent room for him. I walked in and there were toys and books everywhere, upturned chairs and tables, papers strewn in all directions. I remarked casually

oops somebody had a bad day...what happened here?

The reply

...Your son!

Things went from bad to worse in Junior Primary (age 4). His separation anxiety was such that he would go kicking and screaming into class each day, sobbing his heart out. He had frequent meltdowns, was exhausted by lunchtime, and would run away and hide up trees and under chairs; wherever he could find a safe haven. He never initiated aggression to others though. He was always the wounded animal, fearful and defensive when overwhelmed and challenged. And when this happened the storms would rage, cloakrooms would be turned upside down, and shelves would be emptied of their contents in one foul sweep of the hands. The teachers even took to restraining him by force. He once told me that the reason he runs sometimes is that he can feel 'the bad' in his tummy growing and he just wants to escape from it, and so he runs! He hated being restrained and would fight back as he said restraint hurt his body. He asked if they could just leave him be when he was feeling like that and he promised he would go away quietly, dry his own tears and come back when he was ready. His suffering broke my heart over and over again.

He was forever bouncing everywhere (and still does!). His concentration was lacking and he preferred to stand on the periphery of group activity rather than join in. Any excessive demands would be met with a complete shutdown and so reading, writing and arithmetic all fell by the wayside and severely suffered. He was even subjected to a few school exclusions. He used to say things like

I'll never be able to do anything. I'm rubbish. I'm the worst in the class at everything!

We even had a period a couple of years ago when he would self-harm; scratching, biting, punching himself in the face, and threatening to run into the road and kill himself because he felt so worthless, because life was just too hard. It was heartbreaking.

In conjunction with his school, a number of strategies were attempted including providing a safe space for him to turn to when he felt like he wasn't coping, providing some 1-2-1 teaching assistance, wearing ear defenders, special pencil grips, working in shorter bursts of time, and providing transition periods between activities. For a long time, we just removed all demands at home and this meant no homework too. This made for a happier home life all around.

We went down the long and winding referral route to get him seen by a multitude of therapists from various medical fields over the course of approximately 3 years.

He is now in year 4 in senior primary school and we experienced two incredible moments in the latter part of 2021 that ended our year on a high and have set the tone for our kids' future.

1. Going Gluten-Free. One day in discord I had a long discussion with a friend that I met here on Hive (I leave her to identify herself if she wants to), who told me about the benefits that her family had experienced in going gluten-free. I told her about my eldest son's constant migraines which had started when he was around 7 years old and still persisted at the age of 10. I spoke about my youngest's struggles with focus, attention, reading, writing, and being able to access the learning curriculum and take part in peer discussions. About our belief that he was on the autism spectrum and struggling with a number of traits. From her experience, she thought we had a shot at gaining some inroads into managing some of these issues better if we eradicated gluten from our diet. Now, this was not a medical opinion! It was simply one mom sharing knowledge and experience with another mom... so please guys, DO YOUR OWN RESEARCH and make sure what you are doing is right for your family. I did! I read /watched the information that was shared and decided we had nothing to lose! So we commenced a 4-month gluten-free trial in an effort to quell the migraines in O and see if we could find any improvement for J.

Within a week O's migraines had subsided completely. He went from 3-4 migraines a week (whilst on meds!) down to around 1 a month. He is now no longer on meds and only suffers the odd small headache maybe once a week and a migraine maybe once a month. This was such a huge win for us as a family as he was spending hours 'man-down' in his bedroom 3-4 times a week prior to this, curled up in a ball in a darkened room, in utter pain, sobbing his eyes out. He had been on meds for about 9 months. The first medication X made him put on weight, become physically clumsy, and develop awful moods, but it stemmed the migraines to a large extent. When we switched to medication Y the side effects disappeared but the migraines returned. The doctor's solution was to double the dose of the meds. I am filled with gratitude that I met this friend and that we had faith and tried a different path first instead. My eldest son has his life back now and all because we eliminated Gluten from his diet.

And my youngest? Within 2 weeks, I was called aside after school by J's teacher. She wanted to tell me that she had no idea what had changed but that J was amazing her. He was putting his hand up in class, answering Maths questions correctly, completing English comprehensions (all 10 questions), reading voluntarily. He had become enthusiastic about going to school which he never was prior to this. When I asked J if he could tell me why he was suddenly able to contribute in class, he described it like so:

Mommy, it's like, you know if your ears have wax in them and they feel full and you can't hear properly? Well, that's how my head used to feel... too full, jam-packed and I couldn't work out what to do with everything...now it feels ...empty... but in a good way.

I couldn't stop smiling that day and I still can't!

1. Receiving CAMHS diagnosis: We received J's official diagnosis from CAMHS: Austism Spectrum Disorder with Attention Deficit Hyperactivity Disorder, Demand Avoidance, and Sensory Processing Difficulties. The day I opened that big brown envelope from CAMHS and read the opening lines of the report, I cried and cried. But they were the biggest fattest happiest tears of my life. I felt vindicated for him, and for us. He wasn't a naughty, manipulative, obstreperous assh&le of a kid as some teachers would have had us believe. He was a child with struggles beyond the capability of his years to manage.

This official diagnosis has come just in time for his annual Education Health Care Plan review with the school and Local Authority and will provide great substance and backing to his needs going forward. It may even open the door to a specialised autism unit attached to the High School that O will be attending next school year.

It has been an exhausting and tumultuous ride so far and we have taken the not so scenic route through educational psychologists, play therapists, opticians, audiologists, GPs, occupational therapists, and mental health care practitioners to get to where we are now.

Today we have so much love and understanding between us that we have built on over the years as we slowly un-picked all the little pieces that make up our beautiful child. He is truly a child of the spectrum, painting our world with every colour imaginable under the sun.

He still struggles, he bounces off the walls in joy, and somedays in frustration, he gets bored easily and struggles to self-entertain, has endless clothing issues, and finds reading a challenge. And we still have meltdowns but he is learning to recover from them quicker. But he now loves going into school, he has friends that he plays with at breaktimes, he engages with his teachers, and has an immense amount of personal insight for his age.

He loves to write, just like his mommy, and he is blossoming into a little artist, with his own personally designed and handcrafted portfolio, and a chef, and I couldn't be prouder of him. As his life journey continues in the world, I wish for him, only love.

Perhaps love is like a resting place, a shelter from the storm.
It exists to give you comfort, it is there to keep you warm.
And in those times of trouble when you are most alone,
the memory of love will bring you home.

Perhaps love is like a window, perhaps an open door.
It invites you to come closer, it wants to show you more.
And even if you lose yourself and don’t know what to do,
the memory of love will see you through.

Oh, love to some is like a cloud, to some as strong as steel.
For some a way of living, for some a way to feel.
And some say love is holding on and some say letting go.
And some say love is everything and some say they don’t know.
Perhaps love is like the ocean, full of conflict, full of change.
Like a fire when it’s cold outside or thunder when it rains.
If I should live forever and all my dreams come true, my memories of love will be of you.

John Denver - Perhaps Love