My journey engaging with professionals such as Social Services, Youth Support Teams, Police, Youth Justice Team, Autism and ADHD Support Services, Drug misuse teams, and Mental Health Services started when my middle child was only 12 years old.
It started when I admitted to myself that I could not cope a day longer with the challenging behaviours I was struggling to manage. That first call to a professional was an emotional one that left me feeling like I had failed as a parent. Nervously, when my call was answered, I said “Help me I cannot cope anymore” followed by tear after tear, and struggling to catch my breath.
First came the Common Assessment Framework (CAF) through school then the parenting course which was attended by my daughter and I, of which no strategy seemed to work and only left me feeling like the finger was being pointed at me, as to why my daughter's behaviours were so challenging. Youth teams and mental health teams tried to engage and offered appointments, but my daughter had other ideas. The more I tried to get her to appointments, the worse the behaviour got, eventually leading to her first weekend disappearance and full police search. Her face was on the news, and I was getting messaged by everyone asking what had happened. My own mental health started to become affected, my confidence became low, and I struggled to hold down my job.
At this point her father stepped in, thinking he could do a better job raising our daughter. She moved to a different county, at which point, unknown to me, all support I had pushed for came to a sudden end. I assumed it would be picked up in another area, professionals would transfer notes and she would continue being offered support. Her behaviours got worse and eventually she was back with me. Once more I made a call pleading for help and new referrals were made. Waiting times were long and again, my daughter struggled to engage as her anxiety was extreme to the point that she would try to jump out of moving cars to avoid appointments, she would run away or scream and swear. Multiple times I was told she had chosen bad behaviour, and she was dismissed from services for not engaging. Not once did anyone question why she couldn't engage, not once was the professional approach changed to better meet her needs. Not once was a diagnosis of anything considered.
Finally at age 16 she was diagnosed with ADHD with autism traits, depression and anxiety. We paid privately to see someone who knew how to engage with her using autism strategies. By this time her confidence was very low, her mental health poor and already she was on her journey down a bad path. As she got older, she displayed further challenging behaviours not in line with ADHD, but professionals were quick to label everything part of her ADHD diagnosis. The medication was not having an effect and her mental health went downhill so rapidly she was unable to function with daily life. We were seeing evidence of a personality disorder and psychosis, yet professionals were still dismissing her from services saying she was not willing to engage. I wanted to scream 'she is unable to engage the way you expect her to'. Small bright offices sitting around a table asking question after question totally overloaded her mind and senses.
Her first stay in a mental health hospital ended with her being dismissed - again behaviours were attributed as part of her ADHD diagnosis. The frustration I felt as I was not being listened too overwhelmed me, as this was not just ADHD. I questioned if the professionals understood enough about spectrum disorders to engage with her properly, to investigate what I and others had witnessed at home and in the community.
My daughter was the reason I wanted to set up Neurodivergent Abilities. I wanted the right person to work with my daughter, someone who would listen to my views as the parent; the person who knows her best, someone who would not give up on her when she was unable to engage. At last my daughter has the best support worker whom she trusts, a support worker who challenges other professionals and fights for my daughter, and understands her personality and diagnoses. It seems her support worker's voice has been listened to more than mine. Me, the mum, the person who knows her best. It has taken us 10 years to get to the stage where my daughter is finally understood, the right approaches are used, and the right support and medications are in place.
As parents, we should not have to battle for years to be heard, the system should not be the cause of us reaching breaking point, and the waiting times should not be so long. I am one of the lucky parents; I had the opportunity to create a service that is person-centred and adaptable to meet individual need. Knowledge is power and I will always continue with my professional development. Our team's own journeys really have become other people's survival guides. You are not alone. It really helps to talk to others who understand, don’t judge and just want to help. The journey can be long, but you will get there.