Why do Special Needs Parents feel so guilty?

Why do special needs parents feel so guilty?

I’m going to keep this short and sweet because this is going to be different for everyone. 

There is a strange phenomenon with many special needs parents. That phenomenon is an overwhelming sense of guilt for things that are quite often, outside of our control. 

In life, there are plenty of things to feel guilty about.  We all make mistakes and no one is perfect.  There is an enormous weight that comes along for the ride when guilt is involved. Speaking from experience, the weight of guilt can be absolutely crushing.

Some of the things that I feel guilty for, as far as my kids are concerned, weigh very heavily on me. 

I feel guilty because life is harder for them than it should be.  As far as Gavin’s concerned, there isn’t anything about him that I don’t feel guilty for.  With gas health problems, we have to strip him of essentially being a child because if we don’t, we could lose him to one of his many life threatening health conditions. 

For most of Emmett’s life, he had no language ability at all.  We didn’t even think he could hear us. 

He was so aggressive and frustrated, all the time.  It was heartbreaking and I was overwhelmed with guilt because I couldn’t fix that for him.  I couldn’t remove his burdens. 

I feel unbelievably guilty because we spent so much time trying to help Emmett and Gavin, that in a way, Elliott slipped through the cracks.  We did absolutely everything we possibly could but there’s only so much we can do. 

The stress of everything over the past decade has destroyed Lizze’s health.  She lives in chronic pain, menopause at 33, with a migraine that has lasted over 2 years and an untreatable sleep disorder.  Her body has basically turned against her and is shutting down.  She needs to sleep literally all day long but I have to wake her up throughout the day, especially when the kids are home. 

There’s only so much that I can do alone and I feel guilty because I can’t give her what she desperately needs. 

For that matter, I can’t give any of the kids enough of what they need from me.  I live with that guilt every single day.

These are all things that I have no control over and yet I find myself riddled with guilt.  I try really hard to recognize that these are things in which I have no control over.  I tell myself that I need to focus on the things that I do have control over.  If I spend to much time consumed with unnecessary guilt, things will fall through the cracks that I should feel guilty for. 

I just want you all to know that I get it.  I understand what it’s like to feel guilty for a million things and even with the knowledge that many of these things are not within my control, somehow it doesn't make it any easier. 

In many ways, this is an irrational sense of guilt but it’s also very powerful and can be quite debilitating at times.  Perhaps someday, we can all put this guilt down and walk away from it, leaving it all in the past.  Until such a time, we just have to try and keep things in perspective.  Knowing that others out there feel the same way, is always a positive thing. 

Source : http://www.lostandtired.com/2013/12/04/why-do-special-needs-parents-feel-so-guilty/#ixzz2n8iq60eH 

Not a Disabled Friendly Electoral System in India

Not a Disabled Friendly Electoral System in India

While it tried through media campaigns to improve the voter turnout for the Delhi Assembly elections, a large number of persons with disability (PwDs) were still unable to reach the polling booths — as they were not disabled friendly — and could not exercise their franchise.

A case in point was that of Neeru Gautam, who works in the disability sector with Sahyogi. A resident of Block 34 of West Patel Nagar, Ms. Gautam decided to cast her vote by taking her power chair all the way to the polling station in Block 26 Community Centre.

However, on reaching her polling booth, she realised there was no ramp to enter and the entrance to the room was also blocked by a wooden pole which had been put in the middle of the passage to segregate the incoming and leaving voters.

“As my chair could not enter the room, I asked the election staff to come out and help me cast my vote. But despite repeated pleas, no one came forward. Then one person offered to lift me physically, which I refused outright and I came back without casting my vote,” she rued.

Ms. Gautam incidentally had been voting in every election. “Earlier, I had a helper who would take me inside the booth but ever since I became independent due to my power chair, I have not felt the need for one. The Election Commission should have ensured ramps and barrier-free access for the PwDs in this election.”

Some PwDs also vented their anger on social networking sites. Abha Khetarpal, a wheelchair user and president of NGO Cross the Hurdles, wrote on the Facebook page of Dr. Satendra Singh, Coordinator with the Enabling Unit of the Equal Opportunity Cell of the University College of Medical Sciences, how polling booth number A-28 in Subhash Nagar, where she had to cast her vote, had no ramps for wheelchair users and no Braille stickers.

She commented: “So, in this politics of vote bank, polling stations are inaccessible. How can this be called government of the people, by the people and for the people?”

Ms. Khetarpal also noted the media often asks for proof about such shortcomings in the electoral system. “But taking pictures is not allowed — a disabled system indeed.”

For his part, Dr. Singh said: “I haven’t seen any attempts on the part of the Election Commission to publicise voting facilities for the disabled. There is no information on radio or media. However, kudos to the EC Delhi to finally make their website accessible to visually impaired. Sadly, EC’s website is still inaccessible.”

Despite the heavy odds, some PwD voters remained determined to cast their vote. Virender Kalra, a bank manager and a resident of Subhash Nagar, was one of them. When he found there was no ramp for his wheelchair to climb on, he got two persons to lift him and take him inside the polling booth. “I was determined to vote and did so to play my role in ensuring a healthy democracy,” he said.

Source : http://www.thehindu.com/todays-paper/tp-national/tp-newdelhi/not-a-disabled-friendly-electoral-system/article5423840.ece

Little Has Changed For Modern Day Subhashini : A Short Story of Rabindranath Tagore is Still Relevent in Present Time

Little has changed for modern day Subhashini

Shampa Sengupta

 

When the girl was given the name of Subhashini, who could have guessed that she would be “dumb” when she grew up? Her two elder sisters were Sukheshini and Suhashini, and for the sake of uniformity her father had named his youngest girl Subhashini. She was called Subha in short form.

Her two elder sisters had been married with the usual difficulties in finding husbands and providing dowries, and now the youngest daughter lay like a silent weight upon the heart of her parents. People seemed to think that, because she did not speak, therefore she did not feel; they discussed her future and their anxiety concerning it even in her presence. She had understood from her earliest childhood that God had sent her like a curse to her father's house, so she withdrew herself from common people....”

The above lines are taken from a short story “Subha” written by Rabindranath Tagore more than 120 years ago. The journey of hundred and twenty years is long enough. But has there been any substantial change in lives of today’s disabled women? Or their lives linger in the similar darkness? Are they still deemed as a curse by their families and general society?  Like Subha, do they still face desertion and abuse by their in-laws because of their disability? Sadly the situation remains the same.

It is a known fact that in India, birth of a girl does not bring joy. Even though there is a law against it, female feticide is a common phenomenon. And “market value” falls more if she is born with dark complexion. What happens if she is born with any impairment? Dejection of her family increases and her abuse starts from her early childhood. Professor Anita Ghai, who is herself a wheel-chair user, has shown in her different writings the position of a disabled girl in the family structure.  Only in the month of August in 2013 in Bangalore, a blind woman was killed by her husband – investigation of the incident shows that her husband was not aware of her disability before marriage.

Disabled women are not just denied traditional roles of wife or motherhood, the society is not ready to accept that they can have a sexual life. As a result, there is no attempt to give them any form of sexuality education (unlike non-disabled women, they cannot learn from their peers or general surroundings). This “asexual” role assigned to them makes these women more vulnerable.

It is interesting that these women are seen either as “asexual” or as “hyper-sexual” but never at par with women without disabilities. In the year 2000, a girl with hearing and speech impairments was reportedly raped in a prison van by two policemen in Kolkata. When we from our womens network visited the concerned police station, the Officer In Charge told us “ We do not mind helping you with other cases, but this is about a deaf girl. And we all know these people are more sexually active, it was she who initiated the action, so I can not treat this case as rape”. We were astounded.

However these kinds of comments are not restricted to policemen. In 2012, another young girl, who was a homeless and had intellectual as well as psycho-social disabilities was sexually abused within a Government Mental Hospital in Kolkata. When this essayist met the Hospital superintendent, he said that “This girl used to run after all the male workers of this hospital. Mentally ill women usually cannot control their sexual urge. I am worried about my male staffs.”

The traditional Indian society still now considers marriage is the ultimate goal of every woman. Till date disabled women like Tagore’s Subha find it difficult to find a match. So in some of the states of India, Government announces special packages for grooms who agree to marry a disabled (read defective) girl.

Though the National Policy on Disability mentions women with disabilities, till 2013, none of the disability legislations of India have a gender component within its ambit.

Though domestic violence issues remain buried under the carpet, cases of sexual assaults on disabled women, particularly those within institutions, draw attention of media. It is to be noted here that in the year 2012, only mainstream media reported more than 40 cases of sexual abuse on disabled women in West Bengal.

Time period of 2012 -13 can be earmarked as crucial phase of women’s movement in India particularly in the light of the Delhi Rape Case of December 16th,2012 which lead to public outcry on sexual abuse and thus forced the Indian Government to take some measures on the same. As Government composed Justice Verma Committee to look into the changes required in the sexual assault laws, we, the disability groups, took the opportunity and placed our case studies and suggestions to the Committee. To our delight, we saw that Verma Committee gave due importance to our issue, gave us opportunity to face-to-face interactions with the concerned persons.

We found quite a few of our suggestions accepted by the Verma Committee – in their recommendations; they have made several suggestions which can be helpful to combat sexual violence on the disabled women. Though not all their recommendations were accepted, in the Criminal Law Amendment Act of 2013, we have found echoes of these recommendations.

The writer is an activist working on gender and disability rights for last 25 years.

http://www.thestatesman.net/news/27969-little-has-changed-for-modern-day-subhashini.html

Parents Rise To The Challenge

Parents Rise To The Challenge

What does a Mumbai architect have in common with a Kolkata educationist, and a writer in Dehradun? Not only do all of them have children with special needs, they've become champions of change. Nergish Sunavala meets three devoted caregivers-turned-campaigners.

Designing for the Differently-Abled

Parul Kumtha

"My son has taught me more about life than I will ever be able to teach him," says 48-year-old architect Parul Kumtha, whose son is cognitively impaired. Today, her architectural firm, Nature Nurture specializes in designing for the visually challenged, hearing impaired, cognitively challenged and wheelchair users.

In 1996, Kumtha's three-year-old son, Kabir, toppled out of the third-floor window of a daycare centre in Mumbai. The 40-foot fall resulted in multiple fractures, facial paralysis, burst ear drums and severe damage to his brain's language centre or temporal lobe. "He was in a coma for ten days and there was cerebral fluid coming out of his ears," recalls his mother. "He couldn't even hold his head up; he was worse off than a newborn."

For the next four years, Kumtha put her life and career on hold while nursing her son. She pulverized his food before injecting it into his feeding tube, changed his nappies and carried him from place to place until his fractures healed. She also found time to co-found Mumbai's Forum for Autism network — Kabir was never formally diagnosed but has always shown signs of being on the autism spectrum.

By the time Kabir regained the ability to walk and started attending school, architects had switched from using drawing boards and t-squares to computer programmes like Auto-CAD. "I felt like a dinosaur," recalls Kumtha. Eventually, however, Kumtha found the niche she was uniquely suited for — accessible design. Over the years, she has worked on projects to make St Xavier's College, the Reserve Bank of India and even Nasik city accessible.

Kumtha also started teaching a course on the subject at the Sir JJ College of Architecture. Keeping 21-year-old Kabir in mind while designing a space — he can be trained to recognize a universal symbol for a men's restroom, for instance, but not a King of Hearts — helps immensely. "It's not rocket science," Kumtha explains. "What is difficult is creating the mindset that all spaces need to be accessible."

Training Parents of Autistic Kids

Indrani Basu

In the midst of our phone conversation, Indrani Basu had to excuse herself and circle the festival Bhai Dooj on a calendar for her 20-year-old son, Koustav, who was diagnosed with autism at the age of four. When Koustav gets hyper about an upcoming event or treat — a bottle of coke, for instance — it calms him down to see it marked on a calendar. "It helps if I show it to him visually," explained his mother. "Schedules and calendars are like his prosthesis."

Basu, a former English teacher, learned this handy ploy during a course in autism for special educators conducted by Action for Autism in Delhi. In 2000, she moved to the capital with both her sons — the elder one, Amitava, also has Asperger Syndrome, a high-functioning form of autism — because there were no resources close by. "The course helped me understand my sons and how they viewed the world," she says.

After completing her stint in Delhi, Basu tried to work in Kolkata schools catering to both autistic individuals and the cognitively impaired but found them resistant to her methods. So in 2002, she founded Autism Society West Bengal to raise awareness about the disorder. A year later, she set up Dikshan, a school catering to individuals with autism. Initially, Dikshan had six students, today, it has 40 — ranging in age from three to twenty years.

At Autism Society West Bengal, "we train parents to give the intervention because we have found that to be most effective" says Basu. "Parents, who have trained with us, also become catalysts by starting programmes of their own. One parent has started a school in North Kolkata, and another is starting one in Howrah."

Creating a Happy Place for Special Kids

Jo Chopra

In 1989, Jo Chopra and her husband adopted two-week-old Moy Moy, a premature baby, who was abandoned in a Dehradun hospital. "I am an impulsive person by nature, says 55-year-old Chopra. "It just seemed like the right thing.

Despite having cerebral palsy, Moy Moy slowly learned to walk, talk, dress and feed herself. Then at the age of five, a degenerative disorder took hold and she began to regress rapidly. "Today, she has profound disabilities. She uses a wheelchair, eats through a tube and speaks only with her eyes, says Chopra.

Source : http://articles.timesofindia.indiatimes.com/2013-12-01/deep-focus/44618864_1_kabir-autism-network-autism-spectrum