Being A Caregiver In A Neurodiverse Family

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Being A Caregiver In A Neurodiverse Family

“The meltdowns are overwhelming”.
“I am not sure how to manage. I feel anxious all the time.
“I am exhausted. My partner and I seem to be constantly arguing.”
“I feel judged by family members and other parents.”
“I don’t like the person that I am becoming.”

These are some of the thoughts we hear time and time again in the therapy room. They may sound general and could apply to any situation. However, in a family with one or more neurodiverse individuals, these issues are a persistent, often daily struggle.

Being a parent or a caregiver in a neurodiverse family puts us on a different path; therefore, the experiences and milestones differ. When the neurodiversity is not apparent, it poses another challenge. High-functioning individuals with neurodiversity can remain unseen and misunderstood, and the caregiver’s challenges go unnoticed.

Neurodiversity is a term used to describe differences in how some human brains work because of how they are structured. So they manifest into a set of symptoms, such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), learning challenges, Obsessive Compulsive Disorder (OCD), among others.

Living with and caring for neurodiverse family members can be challenging at the best of times. It can be an isolating experience, especially when we observe other parents and hear stories of their children’s milestones and accomplishments. It can eventually affect our physical and mental health, impacting our day-to-day life and relationships, especially within the family. However, with the appropriate resources and strategies, it can not only be managed but can also be an enriching experience.

I, for one, have learnt many lessons from my neurodiverse child. My patience is, more often than not, stretched to its limit, and just when I wonder if I have any more capacity, I experience their love, thoughtfulness and creativity in the most beautiful of ways through gestures that I know take effort and vulnerability, that are unique only to them.

There are ways to help manage and take care of neurodiverse family members:

1) Educate Yourself

The first step to managing and caregiving is to educate yourself about their symptoms. Research the diagnosis to understand their unique needs, strengths, and challenges. Connect with support groups, online forums, and other resources to gain knowledge and insights from others going through similar experiences.

2) Model Self-compassion

Be kind to yourself. Educate yourself about what you can and cannot do. Identify those limits. Celebrate every milestone. Permit yourself to make mistakes. Children learn from watching us, and self-compassion can empower them to develop, especially as they may encounter messages from the outside world that will question their worth. What they learn from a primary caregiver will permeate their minds deep enough to help them develop the resilience they need.

3) Communicate Clearly

Effective communication is essential when interacting with a neurodiverse individual. Be sure to use clear and concise language. Avoid sarcasm, irony, and figurative language that can be confusing, as their brains may struggle to process this information. Use visual aids and social stories to help your family members better understand expectations, schedules, and routines.

4) Establish Routines

Neurodivergent individuals thrive on routine and predictability. Establish daily practices and schedules to help them feel secure and comfortable. Make sure to communicate any changes to their routine in advance to avoid causing undue stress, anxiety, or confusion, as unexpected transitions can be challenging to handle. This, in turn, will also help you gain pockets of time for yourself.

5) Practice Patience

Managing and caregiving for a neurodiverse family member can be challenging, stressful and exhausting – especially when they exhibit problematic behaviours. Remember to remain calm and focused and that they are doing their best from their unique perspective. If you start to feel emotionally overwhelmed, let them know that you need time, remove yourself from the situation and take time to self-soothe before you return to help them. If that is not possible (especially with younger children), take that time out after a challenging episode to give yourself time to recover.

6) Take Care Of Yourself

Caregiving can be emotionally and physically draining, so it is important to prioritise self-care to avoid burnout. Make time for activities that help to nurture and relax you, such as exercise, a hobby, or spending time with friends and family. Connect with other caregivers or support groups to share experiences and find emotional support.

7) Seek Professional Help

If you’re struggling to manage your neurodivergent family member’s needs, seek professional help from a mental health professional or specialist. They can offer guidance on effective strategies and provide additional resources to help you and your family members improve your quality of life.

Being a caregiver to neurodivergent family members is a challenging but rewarding experience that requires patience, empathy, and much more effort and vulnerability. By staying educated, communicating effectively, establishing routines, practising patience, prioritising self-care, and seeking professional help when needed, you can provide the support and care your loved one needs to live a fulfilling and happy life.