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Walking towards hope

R Sriram Srinivas, who has multiple disabilities—mental retardation and spastic diplegia—takes a breather during his yoga session at home. P Settu, his yoga therapist, who has been teaching Sriram two years now, says that Sriram used to be inattentive and restless, but now follows instructions well and has mellowed down significantly.  

 

 

Images and text by Naveen P M

Walking towards hope (2/9)

M Vanitha, Sriram's teacher, helps Sriram wear his dance apparel before the start of the 'World Differently Abled Day Cultural Programme' at Don Guanella Special School in Chennai. Due to Sriram's condition, simple tasks such as putting on clothes can become a chore and he often ends up needing some assistance. 

 

Walking towards hope (3/9)

Sriram rides his bicycle—fitted with a custom-made backrest—flanked by special education teacher, G V Arumugam. Arumugam has known Sriram for 15 years and was initially hired to teach him basic reading and writing skills. On Sriram's parents' request, he started to assist Sriram in walking and then taught him how to ride a bicycle so he could improve his muscle tone. 

Read Sriram's story here

 

Walking towards hope (4/9)

R Devi helps Sriram read a clock at Sai Sri Ram Training Centre. Sriram has difficulty reading and writing even basic words, and has a hard time grasping universal concepts such as time, date, and money. Devi is Sriram's favorite teacher. Sai Sri Ram Training Centre has eight students with special needs, two teachers, and a domestic help. The school functions from 10 am to 3 pm and keeps the students busy with a plethora of activities such as coloring, computer games, and yoga.

 

Walking towards hope (5/9)

M R Karthik, physical trainer, subjects Sriram to one of the many "balancing exercises" to improve his balance and correct his "scissor gait". Karthik has been training Sriram for the last two years. "In the beginning, Sriram could hardly stand for a minute on his own and displayed a lot of traits commonly seen in persons with Intellectual Disability (ID), such as lack of eye contact, droning, drooling...," says Karthik.

Read Sriram's story here

 

Walking towards hope (6/9)

Sriram and his classmates from Sai Sri Ram Training Centre perform to a medley of Bollywood songs at the 'World Differently Abled Day Cultural Programme' held in Don Guanella Special School, Chennai. P Dharani Kumar, a professional choreographer, composed the dance moves for this performance. He visits the school every weekend to teach dance to these students. "Sriram usually has trouble recollecting and executing my dance moves but he stepped his game up through some spontaneous moves," he said. 

Read Sriram's story here

Walking towards hope (7/9)

Sriram is ecstatic after receiving a silver medal for the Standing Long Jump event. His driver, D Alvin (right), and Sriram's mother, R Vanitha, gather around to congratulate him, at the Special Olympics Sports Meet held on YMCA Grounds, Chennai. Sriram shares a special bond with Alvin and the two can often be seen engaging in healthy banter. 

 

Walking towards hope (8/9)

Sriram does a lap of backstroke at The League Club, Chennai. His parents introduced him to swimming at the age of seven after a doctor suggested hydropathy as treatment. Sriram has been training under U Sathish Kumar, swim coach for children with special needs, for one year now. Sriram won four gold medals in as many events at two swim meets for para-athletes held last year in Tamil Nadu.

 

Walking towards hope (9/9)

Dr J Paul Devasagayam, Area Director, Special Olympics Bharat, Tamil Nadu, reviews Sriram Srinivas's progress with his mother, R Vanitha, during one of their monthly meetings at his 100-square-foot office in Purasawalkam, Chennai.

 

Caring for your unwell offspring in your advanced years can be challenging

Parents of children with chronic disability need community support
Priyanka M

Raising a child with a developmental disorder such as autism or caring for an adolescent with mental illness such as schizophrenia can be extremely difficult for the parents, for in both cases, it often means a lifetime of caregiving.

There is a lot of difference between mental illness and a developmental disability. A person with severe mental illness such as schizophrenia or bipolar disorder can usually have a functional life if they receive suitable treatment. But in moderate and severe cases of developmental disorders such as autism, or intellectual disability, the person's brain development is hampered and this affects their communication and social interaction. Also, they are not curable conditions. 

Parenting for children with developmental disorders is different from raising an adolescent with mental illness (the onset of most mental illnesses is during adolescence). Taking care of a child with a developmental disorder involves teaching them the basic skills of personal hygiene and grooming – brushing teeth, bathing, dressing properly, etc. Caring for a child with a severe mental illness such as schizophrenia or bipolar disorder involves helping them with the physiological and psychological changes in their lives, while dealing with their frequent episodes associated with the illness. Most persons with severe mental illness live functional and full lives and need support from family and friends.

In both cases though, these are some of the challenges that parents face while caring for their ward in their advanced years:

1. Who will look after my child after me: After caring for their children with mental illness for a long time, the first concern for aging parents is – who will look after the child, who is now an adult? They expect the child to be looked after for their basic needs, be provided timely medication and periodic health check-ups and loved for, after they are gone. We talk in detail about it in this piece.

​2. Dealing with their own chronic illness: Older people are more prone to several chronic illnesses such as diabetes, heart diseases and hypertension. At this time, managing their lives with these illnesses and caring for the adult child can become difficult and stressful.

3. Lack of quality caregiving services: Parents go through several dilemmas when choosing professional caregivers for their children. They may wonder if the staff would be efficient and if the child would get the same level of treatment as they would at home. As such, there is a lack of rehabilitation facilities available in our country, and the few institutions that are available are not well-known to people.

4. Being prone to mental health issues: Parents of children with severe mental illness face social isolation due to the stigma attached to mental illnesses. Loneliness and constant caregiving can cause the caregiver parents to be emotionally detached from the child and make caregiving mechanical. In the long run, this can cause caregiver burnout.

5. Explaining life’s realities: As children with illness such as schizophrenia grow up to be adults, they see that their peers are getting married, having children or busy in their careers. In some rare cases where the person is not living a functional life, it is challenging for elderly parents to explain the realities of life to their children – about the difficulty of their illness and the social stigma around it. If you as a parent are finding this challenging, consider seeking the help of a mental health professional to have that important conversation.

6. Handling it alone: Often, the child's diagnosis of a disorder requiring long term caring may cause a rift in the parents' relationship. In some cases, they end up separating and one parent becomes the long-term caregiver to their child. The fear of managing the finances and the child's future along with their health issues can be stressful for the single parent.

How you can help yourself

It is recommended that caregiving need not be the sole responsibility of one person and there are ways in which they can seek support and try to prevent caregiver stress and burnout.

  1. As much as possible, follow a proper diet and get enough sleep. If you have a chronic illness that needs management, make sure you don’t ignore that. Try to take a break from caregiving to meet friends and socialize.
  2. Find resources to share your caregiving responsibilities. Look for respite-care services that have day-care facilities. This will help you also fulfil your personal and professional responsibilities.
  3. Having a support system, in your extended family or friends, can help you, the caregiver, feel less lonely in the process of caregiving and, hopefully, receive some assistance from the support systems in the future.
  4. Seek help from a mental health professional if you experience signs of any emotional distress such as chronic fatigue, sleeplessness, feelings of constant sadness, irritability, hopelessness, etc.


References

  1. Family burden among long term psychiatric patients, J. Roychaudhuri, D. Mondal, A.Boral, D Bhattacharya
  2. Challenges faced by aging parents in caring for their children with mental disability, John Athaide, Prerana Chidanand, Tina Chung, 2013

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