H for Hospital's Apathy Towards People With Disabilities

           Since a few days, we have been reading about a wife from Mathura who has been visiting health centers carrying her husband on her back whose leg has been amputated. She has been going through this ordeal as they require submitting a disability certificate so that they can avail free wheelchair from the government.

 After reading this and some of the other instances in past and also from my personal experience, where we see how hospitals, health centers, and people treat disabled people, only one question always crosses my mind…Why so much apathy towards disabled people?

         

My husband always says out of fourteen years most of our time is mainly spent either in therapy or waiting outside an OPD or in a doctor’s clinic or some hospital.

But in these fourteen years one thing I realized, India is not a place for people with special needs.

NO    …it’s not. Period.

Here you don’t get facilities nor is an easy place for such people or for their parents. It’s a big long, curvy road with lots and lots of potholes and road blocks.

Just a few months back we had gone for our daughter’s disability certificate renewal. This certificate is a proof that a child/person has a certain disability and therefore s/he can avail certain benefits.

 First of all these certificates are not issued at all medical or health centers. You have to go government-run hospitals in your district that have been given the authority to issue those certificates after thorough verification and checkup of the patient. These certificates are issued on a particular day of a week/month and these centers have been issuing it for ages.

 Statutory warning…these places are not for faint-hearted people.

 Inspite of so many years, there is no proper waiting area for people who come from all over the district, early in the morning and wait in a queue. Come rain or hail (in India, hot blazing sun), parents with their special needs children or adults with the disability have to wait in open space for hours for registration and getting required forms.

 That’s step one. Then step two depending on their disability they have to go to different directions (here departments) for further processing. And these can be anywhere in the vicinity. That takes a couple of hours. Then after the form is issued, there is another queue for getting signatures of the civil surgeons. Then submitting the form and getting the certificate takes another couple of hours…

          

Consider one reaches the center at 8 am and all this process starts at around 10 am, which will complete until lunch time depending on availability and blessings of the electric board and internet connectivity along with other factors.

          

 Can you imagine, the parents with special needs children, people on crutches standing in the rain or scorching heat since early morning, then  made to go from one place to another???

         

Moreover, the place stinks. Imagine a hospital, where a person is supposed to get healed, stinking of urine, has junk dumped here and there, has narrow, congested corridors, no name of cleanliness and sanitation and not to mention the pathetic staff. There is not even a proper place where children can be fed or changed if they soil themselves.

In some centers, one has to make multiple visits. First for getting forms, then registration, then they give an appointment when you have to take the child for examination and then finally to get the certificate.

I need to ask the Government of India and the hospital staff why such step-motherly treatment towards them?

There is no proper source of information nor are the facilities cheap which everyone can afford. Most of therapies and treatments are costly which only people with the sound financial background can opt for. What about lower strata of people???

Though the government has now some schemes like Niramaya, which give some amount of money but frankly, it's not sufficient. The amount one gets from the mediclaim is much less than what an average child’s medicines and therapies cost.

Even then these schemes are not known to all. Some doctors or therapists don’t share the required information with parents for reasons known only to them.

Why? Why so much apathy towards special needs children and their family?

 Not to mention the attitude of some doctors, some of which I had already written about (Life's Challenges and Hospital-place of healing or mental torture).

 Many doctors make the patients wait for hours. I am not blaming them saying that they are doing it purposely. They might be having some genuine reason for being late. But I had been to a doctor who unfortunately lives in my complex and told me to reach his clinic at 11 a.m. but he himself left the house at 12.30p.m. Now, what to say???

This is not just one case. Many instances I have seen where the doctor comes to OPD/clinic (if s/he is staying nearby) only after their staff informs them about ‘N' number of patients have arrived.

 All these are not figments of my imagination but based on personal experience and true incidents too.

 I know you will say ‘Doctors are humans too’. I am not denying it. They might have had late night emergency call or any other genuine reason. But can anyone spare a thought for us parents and our kids who are already going through social, emotional, mental and physical upheaval?

We don’t want sympathy or pity or even empathy… all we want our kids to avail facilities and treatments which would help them lead their life without distress and with dignity. Is it more to ask?

Like we say “All five fingers of our hand are not same”, similarly not all doctors are same.  I have met some doctors who reach their clinic/OPD well before time and offer concessions to patients who have financial constraints whereas some think that we parents are some money minting machines.

I have no hatred for towards doctors but am just bringing out the plight of people and families of children with special needs go through.

Some will say “What’s the big deal about having to wait for few to couple of hours”…

 Nothing wrong but does anyone know, taking care of a special needs child takes a toll on the caretaker also. Most of the parents themselves suffer from back pain, spondylitis, blood pressure and what not. Imagine what will standing or sitting in some uncomfortable position for hours with our squirming and squiggling children do to their backs?

 Why can't people from this noble profession do something about this and change the way this system works and do something for our children with special needs?

Heartbroken...

Yes, I am heartbroken…

No, no one cheated me in love.

But, yes, still I am heartbroken…

            Confused??? Read on…

            Past few months had been bit taxing on me; physically, mentally and emotionally, all as a mother.

            A girl usually when she enters her teens, starts dreaming; about her life, about her career, about marriage, about her prince charming, about her kids… yes girls are hopeless dreamers. I too was one.

            When my pregnancy got confirmed after two years of marriage I was elated. Like any other expectant parents, me and my husband, started making plans for our child.

If it’s a girl…

If it’s a boy…

What should we name him/her?

What will be his/her pet name? etc…

When my daughter was born, I was happy. I had longed for a girl, as we can always dress her in pretty dresses. But all my dreams were crushed in couple of days.

When you are pregnant, everyone pampers you but no one prepares you for the after effects. Neither was I. No one told me that how painful labour will be nor about the sleepless nights which I am gonna face. But I was lucky to have supportive parents who helped me at that time.

When my daughter’s milestones were delayed, I was worried, but still consoled myself saying she will be fine. Days gave way to weeks, weeks to months, months to years. Every time I visited my pediatric he used to say ‘nothing to worry, some kids are slow initially. Don’t worry all will be fine’. Every change of doctor, gave me same answer. There seemed to be no light at end of my tunnel.

I had a creative streak in me. I used to collect articles used for making and decorating creative arts and crafts and make articles for self or friends. Also things which we moms think our child will use it when the right time comes.

I had preserved them all for so many years … till now.

But till recently, when I was searching for something, my past came tumbling out of the closet. All the decorative materials collected over the decades; laces, sequins, various color texture papers, mehndi designs, art books and what not.

I just kept staring at it for some time… tears swelled up in my eyes. God can be so cruel sometimes. What all dreams a woman weaves when she is pregnant with her first child. How cruel fate can be???

No, I won’t post a picture of my collection. I gave away all my collection to someone or other who will make use of those materials and create masterpieces.

Why?

I don’t have that creative streak or patience or energy in me now. And also taking care of my daughter 24*7, household work and my small home venture takes most of my time and energy now-a-days. 

But yes I was heartbroken when I saw all those things which I had accumulated and which I gave away with heavy heart to those who might make a good use of it. And I don’t regret it.

But still I am heartbroken.

It was not easy to part away with things from your past. It never is and never was. But with heavy heart I let them go.

This is not only me but story of most mothers of differently able kids who sacrifice everything, just for sake of their child; hoping things will be normal. One day they will experience normal parenthood, kids will enjoy normal childhood, have a normal life.

But most are left heartbroken. I know after reading some will say, I am depressed, I am having negative approach of life.

I won’t deny. But has anyone tried to understand the life or feelings of mother of a special needs child. I am happy when my daughter takes a teeny weeny step forward, however small her improvement might be, but I am happy yet sad.

But when we see other kids of same age or kids of our friends, colleagues or relatives, our heart cries, though our eyes don’t shed tears now. They have dried long back. Being a mother is not easy and being a mother to differently able child is even more difficult.

WE are heartbroken but not broken. WE are tired but have not given up. WE have fallen but after some time WE will get up, pick up pieces and go forward. Because, a single word uttered, a single step taken, a single milestone achieved, a single task done is a big reward itself for us.

That doesn’t mean we have stopped dreaming. No. Our dreams have changed. Our goals have changed. Sometimes we still dream all will be normal, even though we know it won’t. That’s not negative approach but we are being practical.

Though heartbroken, we hope. We hope for a better future for our kids, a secure future.

Some might take it as a rant or I am venting my frustration. But if voicing our sentiments, our feelings are labeled as frustration, so be it. And these are not my words/feelings alone.

But of all mothers who have sacrificed their dreams, their careers, their ambitions, everything just to take care of their little ones… be it normal or a differently able child.

Some might say, what so great about it, its our duty to take care of our children. Yes, it is but aren’t we humans too. Don’t we have our dreams? Why should only we sacrifice and go unnoticed?

A woman’s life is not easy as it seems, though very few seem to notice.

Salute to all moms out there, who go with their daily chores with a smile on face whereas in reality their mind and body is begging for some rest and a break from their daily routine.

Hats off to all moms.

Parenting & its responsibilities

           Parenting is a full time job; all work no pay kind of a job.

          Sometimes it’s like walking on a two-edge sword. You are never appreciated for the good work, but your mistakes are always pointed out and reminded about it again and again.

          When it comes to parenting of a child with special needs, the responsibilities gets doubled or say it gets increased many fold. These children are low on immunity, unable to do their simple daily chores independently, have weak muscles and have various health conditions. Each day is a challenge and even a small task is a Herculean task.

          1^st and foremost thing is “Acceptance”. YES. Accepting that our child is different; is a huge task. Accepting that our parenting duties will never end, accepting our parenting duties are different and difficult from what we have seen and experienced is a bitter truth.

          Because if we don’t accept it, then it’s difficult for everyone else to accept the truth. Frustration, depression & anger sets in and we vent all those feelings 1^st on the child & then on our family members. Family may or may not understand; but that child is unable to understand “why is my mom/dad treating me like this?” Result, the child shows behavioral issues, throws tantrums, falls sick often, seeks attention, etc.

          In the past 11 years, I have come across many kinds of parents; parents who care for their child more than anything else, parents who are least bothered about their kids, parents who blame their kids for their misery and make their life hell.

          But I would like to ask such parents 1 question; is it the child’s fault that he/she is born different?

          Recently I observed parents literally dumping their kids at their schools/centers and running away. The kids were not wearing clean clothes; previous day’s soiled clothes are not changed, they are wearing stinking clothes, their personal hygiene is not taken care of… Even if the kids are sick, parents just drop them off and leave. Nor the centre or their caretaker is informed about their sickness or the medications which have to be administered.

          Some parents are so busy that they don’t even have time to provide home cooked food for their child. Their tiffin boxes consist of outside or package eatables which are either unhygienic or loaded with preservatives. Result: falling sick often, stomach infection, diarrhea, etc. Imagine, these children who are anyways low on immunity, feeding on these junk food, daily, 3-4 times a day…

          I have read about old parents becoming burden on their grownup children, but children becoming a burden for their parents just because they are differently abled; they are not independent. And these parents are not of lower income group but from middle class family, always dressed impeccably.

          Imagine if something happens to you and you get bedridden and your parents treat you in such manner; how would you feel? How would you react? 

          Parenting is a huge responsibility. Kids imitate us, learn from us. Children, who are differently abled feel more helpless than we feel, are more frustrated than we are. We need to train them, nurture them with love and care. It doesn’t mean we must pamper them. Be strict when required but don’t ignore them.

          Many will say after reading this, it's easy to say; only the person who is experiencing it knows what all we have to go through…

I have been through this stage. I know how it feels to be trapped, feel frustrated. But once I understood, things became little easy for me to handle.

“Life is a Struggle, Accept it. Face it with a Smile”

Life's Challenges

“Our ability to handle life's challenges is a measure of our strength of character.”

Les Brown

          Few days back, while casually chatting about my daughter’s growing age and its related issues, her physiotherapist told me about a patient she recently visited. They were old patient of hers, and they had called her to have a look at their child’s dislocated hip and to advice on further course of treatment.

“Life is a series of punches. It presents a lot of challenges. It presents a lot of hardship, but the people that are able to take those punches and able to move forward are the ones that really do have a lot of success and have a lot of joy in their life and have a lot of stories to tell, too.”

Josh Turner

          That casual chat really set me thinking about the various challenges we parents face while bringing up a differently abled child. Primarily we start with treatments for the condition which is diagnosed like ADHD, Autism, Cerebral Palsy etc. But as the child grows, his/her body changes giving rise to secondary issues which sometimes goes unnoticed till damage is done & surgery (in some cases) is the only remedy to correct it or to prevent further damage.

          For example sitting in wrong posture can lead to Scoliosis, hip dislocation might be due to wrong posture or muscle tone tightness, calcium or Vitamin D3 deficiency leads to osteoporosis and lower back pain.

          As most of the kids are non-verbal, we tend to miss the signals of issues they might be facing like vision or dental issues.

          For example it is necessary to get regular eyes checked of our children. So we were recommended to a well-known and famous paediatric ophthalmologist in a well-known hospital. But it used to take up 1 whole day as it was located in town and travelling used to be tiring for all 3 of us, as daughter was growing up and it used to get tedious.

          So finally and luckily we found a paediatric ophthalmologist near our place of residence and we thought of giving it a try. 1^st day when we visited him he was little bit shocked after checking her eyesight. So he called us next day after putting the eye drops so that the pupil of eye is clearly dilated. Next day when we went after the readings were taken we were again told to come next day. We were bit worried (as we dreaded something might be wrong).

          What he told next was a total shocker for me and my husband. We couldn’t believe what he told. He told my daughter doesn’t have any eyesight problem… She doesn’t need specs…

          We had been to the other doctor just 6 months back and she had told her number is increased and every time we went she used to say the same thing and change Prerna’s glasses and advice constant use. This was going on since past 6-7 years. Prerna never liked to wear glasses so she used to constantly remove it and we used to scold her to keep the glasses on.

          To be sure we went to another paediatric ophthalmologist, who was also of same opinion that my daughter doesn’t need specs. We were surprised, shocked how come a girl having a specs number 2.75 be reduced to 0.5 in 6 months. 2 doctors can't be wrong…. Unless it's an miracle...

          Since Prerna can't speak we trusted the renowned doctor on her readings and advices. I had felt so bad, as I used to constantly make her wear specs, and scold her if she removed it. And initially when we came to know that she has to wear specs all blamed me because of me she got it too.

          Everyone who came to know about this incident was left in shock. But we learnt a lesson. It’s always better to take a second opinion when it comes to any medical issue, no matter how experienced or well-known that 1^st doctor is.

“Try to be a rainbow in someone's cloud.”

Maya Angelou

          Bringing up a differently abled child is a challenge itself. But it hurts when people try to make use of such situations & misled parents and guardians. In schools and centers wherein we trust them with our  child, pay hefty amounts so as they take proper care of our children, are also the places wherein mainly they are not taken proper care or neglected. More about those experiences in coming blogs.