You’ll of no doubt heard at some point on your parental journey another parent say that having children they lost themselves, it was different for me, I found myself.

Before becoming a mum, I coasted through life, a lost soul if I am honest. I never fitted in anywhere. I was bullied relentlessly through secondary school. I never understood social situations, they overwhelmed me. I often wondered “why am I even here, what purpose do I have”.

Then Jack came along when I was 27. I knew the minute he was conceived (and I mean literally, my interoception sense is extremely acute- but that’s a whole other story!) that I would love and protect him with every fiber of my being.

By the time Jack was 12 months old, I knew he was different. Call it mothers’ instinct. At the time I didn’t know what. So, like any worried mother, we can do better research than MI5! I kept it to myself at this point because my self-doubt at this time outweighed my ability to believe in my instincts. I told myself when Jack started nursery, if there was anything, they would raise it. Sure enough 6 months later they did, 8 months later we had a formal diagnosis of Autistic Spectrum disorder. They also raised there were signs of ADHD but too young to assess and just to bear in mind as time went on.

From then on, I wanted to educate myself. I knew I would have to be his voice. If I didn’t fight for him, who else will?

In reception year we secured an EHCP. I remember vividly sitting with the EP, looking him straight in the eye and saying “we won’t leave this room until you agree my son needs an EHCP” his response was “well, we better start drafting it then” 5 hours later we had collated a draft that was pretty watertight. Yippee you think? Not quite. You then have to police it is even being implemented. The hurdles just keep coming.

Jack is highly academic. He loved reception and year 1- two reasons, it was play based and he had fantastic teachers.

Year 2 came, and it went downhill dramatically. The light in my boy’s eyes was fading fast. Jack is a timid character and often immersed in his ever-changing special interests (namely gaming) he doesn’t like conflict and is a very literal thinker. He found the environment of school extremely challenging. It hugely impacts on his nervous system, and he was often burnt out. We implemented a PT timetable, we took all expectations off, still it was too much.

Covid hit- he lived his BEST LIFE. We quickly learned that “homeschooling” was not going to work. So instead, we focused on life skills- Jack thrived. But normality resumed and back at school it was. When I say I advocated day in and day out for him. Highlighting the demands of the environment was too much, it would fall on deaf ears. So, halfway through year 4 we moved him to a very small village school. Only 58 children and classes of 10 and secured a FT 1-1. I truly hoped this would be the making of him. How wrong was I.

Jack was also in this time diagnosed with ADHD combined type but predominantly is crippled by inattention.

September last year was the catalyst, he was barely eating, his stress dermatitis was unbearable, he wasn’t sleeping. One night he sobbed to me that he wouldn’t survive another year. That was the point I removed him from MS school.

Three weeks after removing him, Jack developed a severe full body tic, it wouldn’t stop and was paralyzing him. He was admitted to hospital. After many tests he received a diagnosis of Tourette’s Syndrome; but this acute attack was triggered by PTSD. When a soldier is at war they are in fight or flight, its not until they leave the “war zone” that the PTSD kicks in. The same thing happened when removing Jack from MS school. I will never, for as long as I live, forget the moment he told the consultant at the time of the full body tics he was having flashbacks of school. Right back to reception year. It brought me to my knees. My poor boy.

I swore at that moment, he would never step foot in a mainstream school again. We had already been denied specialist for secondary transition, so I knew I had a fight on my hands.

Knowledge is power. I researched frantically. I enrolled on SEN law courses and uncovered so many legislations that are in place to support our SEND children’s educational rights. It is frightening that Local Authorities breach these laws and believe their policies and procedures supersede the law, I beg to differ.

I became the thorn in everyone’s butt at the LA. I quoted every law they were breaching and involved anyone of seniority. I was not going away and I was not going to be quiet. I attended protests, I spoke on radio and TV. My child would not become a failed statistic.

Eight weeks later, three days before Christmas, I got the call. I had won. The LA had conceded and agreed not only specialist but my preferred choice of an independent setting too.

I firmly believe, had I not educated myself, my son would have been left to rot. This must change. No child should ever be left behind. Every child deserves to thrive.

So, this leads me to now. The light in Jacks eyes is returning, he is healing, and he will thrive.

I am embarking on a pathway of supporting parents who are on this journey too, I have found my purpose. If I can help one parent not feel the way I did, then I shall sleep soundly at night.

If you haven’t guessed already, I too am Neurodivergent and advocating for our community is definitely my special interest! Every child matters, every voice should be heard.

‍