mental-health – Page 3 – I am James' mum

Exploring identity, being and belonging

This blog features the work of Dr. Joanna Grace from the Sensory Projects

Embracing identity with James

Through my disability inclusion studies, I learn more about people like us in the world around us. I find that a new approach to longstanding beliefs is necessary. As such, I advocate for celebrating neurodiversity and exploring fresh ideas to share experiences and find support.

Our identity is shaped by our thoughts and how we experience the world through our senses. Sensory substitution explains James’s heightened senses. His reactions—whether calming or overwhelming—are his way of communicating. Sensory substitution occurs when one sense compensates for another when overloaded, allowing information to be processed differently. Co-regulation is another key concept, where we support each other in managing emotions. Understanding and responding to James’s cues, I can help him feel more settled. I’ve noticed how my responses can help us stay calm and connected.

The Neurodiversity Movement

The neurodiversity movement is a paradigm shift and an essential movement happening now. It’s a global movement to reduce the stigma around neurodivergent brains.

Neurodiversity embraces the idea that neurological differences are simply variations of the human brain. This shift is crucial for people to be valued for their unique ways of thinking and being.

The Layers of Identity

I recently watched Joanna Grace’s discussion on identity, which sparked reflections on my experiences with James.

Joanna Grace offers a powerful framework for understanding identity through five key paradigms:

Essentialist Identity: Our inner, unchanging core.
Structured Identity: How our environment shapes us.
Performative Identity: Adapting to social expectations.
Discursive Identity: The power of language.
Beyond Identity: The evolving nature of self.

Joanna’s work has deepened my understanding of the identity that James and I embody as mother and son. Her frameworks show that the idea of identity is multi-faceted. Understanding of disability and neurodiversity is evolving. It is shaped by new knowledge and perspectives.

Embodied Identity: Recognising True Value

Joanna’s concept of embodied identity encourages us to look beyond physical limitations and recognise the true essence of each individual. This is especially important for those with profound and multiple learning disabilities (PMLD) and individuals with complex learning and developmental needs (CLDD), like James. In essence, I am James’s voice to the world, and our identities are intertwined—we cannot exist without each other. To help us better understand this, Joanna introduces two contrasting philosophical lenses: phenomenalism and Cartesian dualism.

We must look beyond surface assumptions. Just because a body behaves differently, we cannot assume that the mind within is absent or lacking. Each person has an inner life, a sense of being, a light that deserves to be seen.

Phenomenalism: The Embodied Self

Phenomenalism proposes that mind and body are not separate but deeply interconnected. It is rooted in phenomenology, a philosophy that centres on lived experience. In this view, consciousness is always embodied—we experience the world through our bodies.

For individuals who are non-verbal or express themselves differently, this view affirms that their inner world is real and present. Their movements, expressions, rhythms, and reactions are meaningful. These should not be dismissed as mere behaviour, but recognised as communication.

Joanna encourages us to engage with others in ways by learning to listen more deeply to alternative ways of being.

Cartesian Dualism: Mind and Body as Separate

In contrast, Cartesian dualism, developed by René Descartes, separates mind and body into distinct parts. Descartes famously wrote, “I think, therefore I am”, suggesting that thinking and reason are the core of identity.

This idea has had a lasting influence. It has often led society to value people based on their ability to think and communicate in conventional ways. For someone like James, this can be limiting.

Joanna’s work helps us go further. She teaches us not to judge a person’s worth by their physical or verbal capabilities alone. She urges us to understand that identity is a synergy of mind and body.

Moving Toward a More Inclusive Future

Our responsibility is to create environments where everyone’s light can shine. Identity is shaped by experience, environment, language, and interpretation.

All individuals deserve the same rights to love, care, and fulfillment. Disability should never diminish their humanity. Ultimately, it’s about observing and understanding who we are and how we behave—creating a space where we feel understood and connected. In an inclusive future, every person is recognised, understood, and supported for who they are.

How James and I experience the layers of identity

Advocating for Our Children: Building Partnerships for Change

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

#diaryofasenmama #hopehaven #advocatesapparel #parentprofessionalpartnerships #pledgepactpositivity #advocateaggregateaffirmamplify

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?

Comment: What’s behind the UK’s increase in Autism Diagnoses – Amelia Hill for, The Guardian.

Conflicting conversations around autism. My take-home notes are:

“The sad truth (is) that autistic people too often do not lead happy lives (diagnosed or not). Compared with non-autistic people, they are about 70-80% more likely to have poor mental and physical health, experience educational under-attainment, unemployment and underemployment, victimisation, social isolation, and premature mortality.

“This has led to some asking whether the main objective of autism research should be refocused to understand how to help autistic people lead happier lives.” ?

The evolution of understanding around autism reflects a complex interplay between diagnostic criteria, societal awareness, and the lived experiences of individuals within the autism spectrum. The shift from viewing autism solely as a disorder to recognising it as part of a diverse identity underscores the importance of embracing neurodiversity. However, challenges persist, with disparities in mental and physical health outcomes highlighting the need for a holistic approach, to support the well-being and positive identity of autistic, individuals.

The loop defined by Russel,”A rise in diagnoses loops back to increased awareness, which impacts on how people identify themselves, which leads to a call for more assessment centres, which has led to a greater rise in diagnoses”

As awareness and diagnoses increase, those with less severe symptoms come forward with their own stories of how autism affects them.

“There is a drive for positively self-identifying as autistic” and it should be acknowledged that you can be in good mental health and autistic.

The diagnostic criteria is widened to take these accounts onboard, which loops back again to another increase in diagnoses.” This loop follows a neurodiversity movement in the late 1990s to remove stigma redefining autism as an identity rather than a disease.

Co-occurrence of Learning Disabilities is now understood to be 75% of this population who are often under-represented in media, communities, and workplaces.

#neurodiversityawareness

Click here to read the full article published Monday, March 4th, 2024.

What’s behind the UK’s increase in autism diagnoses?