As a mother of a neuro divergent child, who was severely premature, I wish to highlight my perspective of the multiple challenges faced by me and a few solutions. The responsibility of caring for a medically compromised and premature child is very overwhelming for the following reasons:

1) Suitable caregiver: It is difficult to find a qualified nurse, with the requisite skills and empathy. It is not necessary to limit the search for a caregiver to any qualification, and even a nanny, without any education or training, can be equally efficient if she has empathy and is willing to learn.

2) Regular visits to doctors of multiple specialisations: Be patient and instil confidence to allay the child’s fears. Adjust your own expectations.

3)Competent team of therapists: Look for therapists willing to adapt their program to the child’s specific requirements and work in an integrated manner with diverse professionals.

4) Choice between a mainstream or special educational establishment: The former may lack trained teachers able to integrate the child with their peers and give sufficient classroom exposure. Difficulty of inclusion that enables forging of strong bonds resulting in real friendships. Special education establishments (that may offer easier curriculum options; provide integrated therapy, routine and structure which reduces anxiety and makes the children feel safe when things are predictable); and focus on functional skills. Difficult choice as neither provide a combination of the optimal experience and so the happiness and not the academic quotient becomes the deciding factor.

5) To find the appropriate Developmental Paediatrician: Who can tie together the academic progress, various therapies, special education and emotional well-being. Consider discussion with other parents and professionals for referrals. Schools could also initiate referrals where necessary. Sometimes this role can also be played by a paediatric neurologist who takes a holistic approach.

6) Empower the child to develop a purpose leading to financial independence: Schools to incorporate enrichment programs to explore interests and develop special skills leading to job opportunities. Creation of awareness amongst corporates to provide placements.

7) Learn to be kind to oneself: Focus on child’s strengths, celebrate small victories and be grateful for the love and support received. Finding an effective counsellor with an expertise in neuro divergent children and their families to help with coping strategies to overcome guilt, frustration, anger, depression and so on. My aspiration is to empower my child so that one day she can inspire others. I also aspire to build a platform for parents whereby there is a support group and forum to share information and create a database of professionals and caregiver who are competent and accountable; to establish helplines; to develop a residential support structure for our children when they grow up; to provide opportunities for them to meet socially and make friends; and to help them find a purpose.