19.10.2024
I tuned into the SENDCast, a podcast that promotes understanding of current knowledge in the global SEND (Special Educational Needs and Disabilities) landscape and community. This week’s topic focused on the vital theme of Parent and Professional Partnerships.
The conversation highlighted a universal struggle: parents advocating for their children’s needs often feel unheard. This episode featured Denise B. Grant, CEO of Panda’s Tree, a pioneering organisation supporting the Black Down syndrome community. Yet, this challenge transcends individual communities and extends to all neurodiverse individuals, encompassing various cultural, societal, and generational differences.
Denise illustrated her point with an analogy about a surgeon who insists on operating without anaesthetic. This scenario reflects a clash of perspective. Professionals may be resolute in their practices, often disregarding parents’ pleas to hear their concerns. This dynamic resonates with my own experiences; when I advocated for practices I had seen work across organisations, nothing changed. The team was not joined up, which could be due to issues like experience, knowledge, and respect for the parent voice.
When James was six years old, our therapeutic support was abruptly terminated, largely due to my personality. The team did not appreciate my input, despite the vast amounts of money and time I had invested in this private organisation. Suddenly, James was unable to go to school, (for the two hours a day I begged for, and permitted only with private and paid support). Home support ended at the same time. I found myself back at square one, navigating the challenges of caregiving alone. Rest was impossible. Subsequently, James developed Tourette Syndrome, and the days and nights became indistinguishable. The beginning of another chapter another uphill struggle. I began taking antidepressants, which helped, but the isolation remained a constant shadow in our lives. I also gained 10 kilos as a side effect.
In respect of Person and Professional partnerships, my experience with different medications and their effects on my mind and body has been long and complicated. I have tried almost all classes of antidepressants, suffering from brain fog and impaired thinking and alertness. Unfortunately, I couldn’t find relief from any pill, and I simply could not continue taking a drug that affected my ability to care for him. Fortunately, my doctor supported me. She listened and helped me navigate my medications, allowing me the freedom to express my concerns. Unfortunately, this is not always the case, as I’ve learned from other parents and individuals in various online communities. The impact of medications can be devastating to mental state and varies from person to person, so concerns should not be disregarded.
Thus the necessity for professionals to listen to families and exhibit genuine empathy cannot be overstated. This reminds me of the German term “Verstehen,” derived from Max Weber’s philosophy, which means stepping into another person’s shoes and seeing the world from their perspective. This compassionate approach is crucial for fostering understanding and collaboration.
This desolation is mentioned by Denise, who mentions alarming statistics surrounding mental health in SEN families, including rising suicide rates.
This is why I advocate for using social media to create supportive spaces where we can share our voices and experiences. In numerous online community groups, I joined parents and individuals sharing feelings of joy, sorrow and hope. There were frank voices seeking connection and understanding. I appreciated the anonymity; some experiences were too raw to share with friends. These connections became a lifeline—simple affirmations of “I understand” or “me too” provided a sense of solidarity.
The SENDCast also sheds light on the pressures professionals face, often constrained by institutional limitations related to time and legality. As a result, they may resort to shortcuts in primary treatments for neurodiverse children, losing sight of the bigger picture and, sadly, the child at the centre of it all. One shortcut that I believe happens too frequently is medicating as a first-line response to behavioural differences. Medication should not be the primary treatment option; professionals must consider holistic support and work together instill values such as customised healthcare, inclusive education, community engagement, and sustainable support.
Disparities in training and teaching quality raise significant concerns, as unmet needs can persist into adulthood and sometimes lead to tragic outcomes. Cultural stigma and systemic inequalities further exacerbate these challenges, particularly for BAME and underprivileged groups.
Drawing from a lecture by Dr. Pritvi Patel at the University of Birmingham, I recognise the importance of the relationship between cultural backgrounds and support systems. This relationship is crucial in shaping effective advocacy. This is why I advocate for mirroring values of compassion and collaboration across cultures within the neurodiverse community.
The pillars of inclusion stress the importance of building knowledge together for a more empathetic society—one where no child is left behind. In a world grappling with a health crisis and increasing dissatisfaction, this commitment is more vital than ever.
Together, we can create resilient futures for all individuals and families, ensuring access to the resources needed to thrive. Every child matters. True inclusion demands a collective effort to listen, understand, and act on the diverse needs of our communities. We can promote pathways to support and resilience, striving for a healthier, more inclusive future.
Peace and Love,
Jamie
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Summary of Different Classes of Antidepressant Medicine:
Antidepressants generally fall into several classes, including selective serotonin reuptake inhibitors (SSRIs), which increase serotonin levels in the brain to improve mood, and tricyclic antidepressants (TCAs), which affect various neurotransmitters but often have more side effects. Other classes include serotonin-norepinephrine reuptake inhibitors (SNRIs), which target both serotonin and norepinephrine, and atypical antidepressants, which can work in unique ways and are often used when other treatments are ineffective.
The Happiness Index starkly contrasts the top and bottom-performing countries, particularly concerning students, schools, parents, and communities. Countries that excel often have robust support systems, engaged teachers, and involved parents, fostering nurturing environments.
How happy do you feel?
I am James' mum 